Noah Alexander Crowe
February 28, 2008 ~ May 18th, 2012
Noah's Memorial Service
Saturday, May 26th, 6pm
you can watch the service here.
Noah Alexander Crowe passed into the arms of Jesus on May 18th, 2012. His memorial service was held at Friendship Church in Athens Alabama on Saturday May 26th.
Noah was adored by his family and loved by thousands of friends and even those who had never met him. His story is an inspiration of love, determination, making the best of bad situations and choosing to live life at 100%.
He will be severely missed. His laughter was contagious, his smile - beautiful.
He was the bravest boy to ever live
Read his complete story at www.prayfornoah.com
Beauty from Ash
This is the song I wrote for my son, Noah Alexander Crowe
Thank you to everyone who sent a donation in Noah's memory to one
of the organizations listed below, each of which in some way or another
helped our family through Noah's fight.
Noah would have loved to know that you made a donation to help
other children like him receive assistance and find joy
in the midst of their pain and suffering.
You may send your gift acknowledgement to
John David and Jessica Crowe
c/o Riverchase UMC
1954 Old Montgomery Highway
Hoover, AL 35244
Give Kids The World
Lighthouse Family Retreat Ministries
Brain Tumor Foundation for Children, Inc.
Children's Hospital of Alabama Oncology Group
Want to see fun videos of Noah?
click on the link here to a collection of videos on youtube.com
A New Way To Contact Us
Please pray for Noah as you watch this video of him.
Its a small collection of pictures and videos of him in the PICU at Children's Hospital at the beginning of his journey with cancer - and also some of our favorite pics of him as well.
Jesus is his healer
About this blog ...
We feel incredibly humbled by the outpouring of love so many have shown us. The amount of prayer and support for Noah is overwhelming. Thank you for checking in him, and thanks most of all for your prayers!
Tuesday, December 25, 2012 - Jess
So this Christmas has been stripped down from the commercial, happy, joy-filled Christmas I'm accustomed to, and I'm left with only Jesus, His excited yet confused and scared parents, and a promise of salvation and healing. And to be quite honest - that's all I need to keep moving forward and to live 100%. Because I am not living for anyone else but Jesus Christ, because He died for me. And somewhere in another dimension of time and space, wherever heaven is, my little boy is smiling because I am slowly starting to get it. This Christmas I am thanking God for the gift of eternal life through His Son, the light of the world, the baby in the manger, the boy that was "about His Father's business," the young man teaching His elders, the God-man that took my sin and shame on a cross, forever offering forgiveness and peace to my broken and hurting heart. Jesus is all we need - see that with me today, and all days.
God bless you, and I hope you have a Jesus-filled Christmas. Live 100% for Him!
And as Moses lifted up the serpent in the wilderness, even so must the Son of Man be lifted up, that whoever believes in Him should not perish but have eternal life. For God so loved the world that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life. For God did not send His Son into the world to condemn the world, but that the world through Him might be saved. “He who believes in Him is not condemned; but he who does not believe is condemned already, because he has not believed in the name of the only begotten Son of God. And this is the condemnation, that the light has come into the world, and men loved darkness rather than light, because their deeds were evil. For everyone practicing evil hates the light and does not come to the light, lest his deeds should be exposed. But he who does the truth comes to the light, that his deeds may be clearly seen, that they have been done in God.” (John 3:14-21 NKJV)
Yesterday morning during my husband's sermon, I continued to think on the word "opportunity." Throughout the bible, stories are told about people who were presented with God-ordained opportunity. Some accepted their opportunity as a chance to prove their trust in God and reveal His glory in their lives; others rejected the opportunities given that were to prove themselves faithful to the Lord, and they suffered without a feeling of purpose. As I thought about John's challenge to the congregation to accept God's will, whatever that looks like, without doubt or concern for the future, I reflected on the events that our family has experienced. I am beginning to see how much opportunity John and I have been given, opportunity to point to Jesus and His love, His mercy and grace, His eternity. I began day-dreaming about the future and how we can use our experiences to continue to remind people of and introduce people to the faithfulness of God. I began to realize that in the middle of my suffering, God is purposing and planning my pain for His good and glory. Not a tear I have shed will go unnoticed or unused for Him. As I am waiting to be reunited with Noah and meet the Lord, I am always walking in opportunity to serve Him and to show His love. If only I could look at every situation with that viewpoint...
Back in August I was invited to a retreat with a sweet friend. The Lord introduced me to a picture of my life that I hadn't realized before. Here is what I journaled that weekend:
"I find it interesting that for my journal time I thought it necessary to
sneak away to the lake, which is in a little valley between a few small hills up
here in north Georgia. The house up the hill behind me has balconies that
overlook the lake, but I felt I needed to be closer and follow the path down to
the bottom, (which leaves a good climb back to the house). At the bottom, near
the waters edge, the lake is muddy, with cloudy water and dead limbs floating
around, and just pretty gross by my standards, as lakes tend to be. But from the
balcony outside of my room, it looks pristine, glowing, and beautiful as the sun
reflects upon the still water.
"For the past 2 ½ years of my life I have lived in the valley of sorrow and
suffering, watching my only child fight to live, doing everything I could to
help him survive. Being in the valley has become my safety and comfort. If I
attempted to make the climb to the top of the hill, something would knock me
down to the valley once again: tumor growth/recurrence, miscarriage, loss of a
home, surgeries, my son’s decline….and eventually death. Suffering doesn’t
surprise me anymore; in fact, I expect it. I have determined that life is a
constant struggle, an inherent wrestling of flesh and spirit, with sorrow and
joy intertwined and indistinguishable at times. I have felt that my purpose has
been to just crawl down to the valley and sit, waiting for sorrow to find me.
This place in my life looks gross to me, just like the lake. It feels dirty and
dark, like this muddy water I see, but I’m not viewing my life in the valley
from the 'balcony.' From the balcony of my room the water is beautiful; there
are boats enjoying the calm waters and cool breezes. The sun causes the water to
shimmer and sparkle. From where I am sitting on the bank, I’m not seeing things
from the balcony perspective. This valley perspective I have of my life is
comfortable to me, even though it is painful - feeling alone, feeling defeated,
just doing God’s work in order to find a purpose for each day. I feel guilty for
wanting to seek out happiness, because my son is gone from me. It seems like I
feel the need to be defeated and struggling so I can show how much I miss him
and how unfair it is that he is not here. Noah was where I found purpose for
four years and three months of my life. Almost everything I did was based on what he
needed, and how he needed to be cared for. Every decision John and I made
together affected Noah, and he had to be considered through it all, with his
best interest in our hearts. Things are so different now and in the natural, it
feels so wrong.
"So, I have to be redefined. I need to be remolded and reshaped, with the Lord
being my definition and joy. Just like walking back up the hill on the path to
the house will bring my body physical discomfort (my lungs will need to work a
little harder and my heart will pump a little faster, my muscles will be
stretched and pulled), so will climbing up the figurative hill to the high place
(where victory is seen), with sorrow and suffering at my side, be incredibly
uncomfortable. But if I want to reach Jesus in all of His glory and see His
purpose for me I must begin the climb. If I sit and wait on Him in the valley, I
won’t get to see the amazing view He has of my life from the balcony
"Jesus give me strength and endurance for the climb, while I dust off my joy,
covered by the ashes of pain and death. Restore to me the joy of my salvation,
and uphold me by Your generous Spirit (Ps 51:12).
"…Yet (despite my circumstance) I will rejoice in the Lord, I will joy
in the God of my salvation (victory). The Lord God is my strength; He
will make my feet like deer’s feet, and He will make me walk on my high hills
(my “balcony view“). - Habbakuk 3:18-19 (italics are my own interpretation)."
So, if you've ever read the book "Hinds Feet in High Places," you'll know I was making a lot of reference to that. There is so much about this life that we will never understand, and if we are constantly focused on the struggle and the pain, we will never see what Jesus sees. I am desperate to see my life from God's perspective, up on top of that mountain, where He sees the big picture. I trust that He works all things in my life for HIS good and for HIS glory. Every step that I am taking up each steep hill bring discomfort and even pain, but the end result of meeting the Lord in all His glory is worth every heartache and trial.
The preparations John and I are making for the move are difficult, and we would appreciate any prayers you could give on our behalf for some grace to get through it. I am looking forward to the ways God is going to use Noah's life for His glory and I can't wait to see how he will utilize John David and myself to facilitate that.
I have a few more prayer requests, for those of you still reading and praying: Three little guys I have grown to love dearly, though only having physically met one, have each been given a grave diagnosis from their doctors. I live in reality of those diagnoses, but I also walk in faith and hope of God's healing power. Please pray for Ehrrhen, Ryan, and Joel, all precious boys battling brain/spinal cancer. It is so hard to watch children suffering and feel helpless to change their circumstance. The organization "The Truth 365" created this 50 minute video to inform of, through all types of social media, the dangers and realities of childhood cancer. Please watch this video and forward it as much as you can. If you would like to know how and where to donate, visit www.thetruth365.org.
Once again, John and I, along with our extended family, appreciate your prayers. God is still good, no matter our circumstance. Never forget Noah, and live your life 100%, making the most of every opportunity. God bless.
this Saturday will be three months. I am trying to stay as busy as I can,
but there are some days I recognize that I shouldn’t be in public, and adjust
accordingly. I can speak with certainty for John David and myself when I say
that missing Noah and the grief that piggybacks on that emptiness grows stronger
each day. Our grief response is unpredictable, and often surfaces at the most
awkward and inopportune times. What is so difficult about the pain we feel is
that we don’t want it to disappear because that would mean we don’t think of him
- it hurts to think of Noah and the hole that is left in our hearts because of
his death, and yet it hurts when we realize we haven’t thought of him in a few
hours, and could go through such a span of time without acknowledging his
Growing up, I would often pray to God to communicate
certain things to my dad, who died when I was six, and who I knew was in heaven.
I’ve never believed that those who pass into eternity could see what was taking
place in the earthly realm, so I would ask God to tell my dad about my
accomplishments, my feelings about missing him, and remind him of my love for
him. At my wedding, the day of Noah’s birth, and during so many other special
life events I would ask Jesus to pass along the message that I miss Dad and
wish he could be a part of my life. Now, I ask Jesus everyday to find Noah and
give him a hug from me, tell him I love him so much and miss him terribly, and
that I can’t wait to be with him again. I think about eternity all the time.
..ALL the time. I wonder anything and everything about heaven. I am more
concerned about getting there than I ever have been (and I’ve thought a lot
about it in the past, believe me). I have such a greater sense of gratitude for
Jesus Christ and His sacrifice to make a way for us to come to Him in eternity.
I find myself thanking God for
Jesus so much more, because I know that Noah is with Him. This is not just a
belief or a speculation – I would give my life standing on the fact that Jesus
welcomed Noah into eternity because He said yes to God’s plan for our
reconciliation to Himself.
I’d like to share with you the experience we had when Noah began
his last few hours on earth. I’ve wanted to explain his death in detail for
almost three months, and now seems like the right time for me to do so. I posted
a blog the day before Noah passed, describing his struggles and how his health
was quickly declining. I had no idea how soon he would fade. That Thursday night
(5/17) Noah struggled to breathe the entire night due to the fluid buildup in
his lungs. (His body was slowly shutting down, he wasn’t strong enough to cough
anything up, and he had been aspirating liquids). I
asked his hospice nurse to come Friday morning, and when he saw Noah’s condition
he determined the end was near and stayed with us for the duration of Noah’s
struggle. Not being able to breathe is terrifying – I could see the fear on
Noah’s face. He was blind, the tumor had already taken his sight. He could
barely speak. We prayed over him, begged God to keep Noah from suffering. John
and I told Noah that it was ok to go to Jesus, we encouraged Noah that Jesus was
the only one who could make him all better. He understood us, and was still able
to comprehend what we were saying to him. His eyes were closed, and he pointed
his right hand straight ahead, and said with much difficulty, “I
see Him.” I knew immediately that He was seeing Jesus, and that Noah was
beginning his passage into eternity. He began to make the sign “help,” (I taught
him some basic sign language after we learned of his recurrence, because of the
certainty that he would lose his speech). This ripped out my heart because I
could do nothing for him. John and I had previously decided against any medical
intervention at this point, aside from palliative care, because we knew that we
would prolong the inevitable. Looking back, I recognize that at this point his
spirit had left his body; he was unconscious and breathed very little. We (John
David, our moms, the nurse, and I) cried and prayed to God to take Noah quickly
and give him eternal healing. It took two long, grueling hours. The sounds of
his body struggling to breathe still haunt us all. John and I took turns
holding him, crying and praying over him during this time his body was dying. I
was impressed to listen to a song about heaven and all its glory. As the song
ended, John was impressed to tell Noah how much Mom and Dad love him, and we
knew that he loved us both very much.
He told Noah it was ok for him to let go and live with Jesus; he could
leave us here. If he would just look at where he was going, he wouldn’t want to
stay with us anymore. As soon as John David spoke those words, Noah’s body took
its last breath and he was gone. We stayed in the room for several minutes and
sobbed, made our peace, and covered his body. Noah was gone, he didn’t need
that shell anymore, so we had no problem with the funeral home coming quickly
for the body. We watched the hearse drive away as some of our neighbors looked
on in wonder. I wanted to run up and down the streets screaming, “He
is gone!! Don’t you all know or care! Stop what you are doing and grieve with
And so that began our journey without Noah. Looking
back at his death, I can see how God spared him even more torment than what he
experienced. Noah had lost his sight, his body was slowing down quickly, he
couldn’t eat or drink, and he was still in pain despite the morphine. If we had
taken him to the hospital his lungs would have been suctioned (a painful
experience) and he would have been kept alive until the tumor began to shut
them down. At the moment he was dying, I was so angry that God was allowing him
to suffer and not answering our prayers. I can see now that God DID answer our
prayers. Noah would have hated to be trapped in his dying body. He
hated to be restrained, he despised being still; watching him deteriorate I
could tell he had almost given up. He couldn’t play, sing, dance, give hugs…he
couldn’t live 100% anymore. God spared Noah any more suffering in his body by
taking him in the manner that Noah died. I can look back on that experience now,
as traumatic as it was, and push through all the doubts and pain and say, “God
is good and He answered our prayers. I did not want his body to die, but Noah
has a new and perfect body like that of the angels and he is complete.” Looking
back I know that the Holy Spirit was with us all during Noah’s last moments on
earth, and I know that Jesus took Noah’s soul and gave him a glimpse into his
Now back to that statement, “I think about eternity all the
time.” Every day I ask that God would be glorified through me, and that I would
see that happen, so each day I will have a reason to get up and get out of the
house. Thinking about eternity keeps me moving forward. Each day that I follow
Jesus Christ is a day I am closer to seeing Him in eternity, and seeing Noah
once again. It is true that when you have very little left to tie you to this
world, your longing for eternity becomes very strong. John David and I have
such a different relationship now that we are a couple once again, after being
a family. We love each other so much more, but we both realize how this world
has nothing to offer us compared to the glory and riches that are found in
Jesus Christ our Lord. So much of what happens in this world is meaningless. If
we are not serving God, serving others, and growing in our relationship with
Him, we are wasting our time here. My senior year of high school I had a great
Sunday school teacher who would ask us, “Where do you spend your time? Where do
you spend your money? When you day dream, what do you day dream about?” Losing
Noah has changed my perspective on life. Where I spend my time, money, and what
my dreams are have changed so drastically. It makes me sad to know that I
should have longed for heaven this much from the time I became a follower of
Christ. I had to lose the person I loved the most on earth to see that my
treasure has always been in heaven. Nothing on earth can satisfy me – not a
job, not a degree, not a house. Not even really good things, like serving
others, loving and being loved, giving away possessions and money, not even
sharing my story of God’s forgiveness in my life can bring me peace and
satisfaction. Being face to face with the One who created me, and being
accepted into an eternity with Jesus Christ, and hearing him say, “this is my
child who I made a way for…this one is Mine,” …only then will I be satisfied.
Please don’t wait until something is taken away from you, and leaves you with an
open, painful, bleeding wound, before you decide to follow Jesus Christ. You
need Him in your life before the pain comes, so He can pick you up and give you
a reason to keep living, and a reason to long for eternity. If you find yourself
in a position where you are left with nothing, and you feel alone without a
purpose, even then He will pick you up from the valley you are in, and give you
a desire to live, if you will only ask and open your heart to Him. With every
minute that passes, we are one minute closer to eternity. This brings me great
joy, and if it brings you great fear, get to know God and His goodness, and what
His Word tells us is the way to eternal life with Him.
forget…what is important, what is true, what is essential, what is your
100%...for God, following Jesus Christ’s example, longing for
Thank you for your continued prayers for our family. We love and
Friday, 6/15/12...four weeks.
since Noah left this earth, and left mine and John David’s arms. It’s been four
weeks since I touched his sweet, soft face, and that seems like an eternity.
This new way of life for us is so bizarre, and completely unnatural. Nothing
seems right without Noah. Every small sense of happiness we feel is quickly
overridden by the thought of, “Noah would enjoy this. I wish he was here to
enjoy this with me.” Everyday tasks are embedded with his memory, which is
simultaneously wonderful AND painful. Most every place we go, we have previously
been with Noah, and the adjustment of being in those places without him is so
incredibly difficult. Trying to find new restaurants in which to eat or new
places to in which to shop where he has not been seems so wrong…trying to create
new memories without him hurts deeply.
Habits are hard to break; I often find myself mindlessly trying to
accommodate Noah in my daily coming and going. Using the back burners on the
stove instead of the front ones, making sure the laundry room light is on before
bedtime (just in case he sneaks into our room at night and needs light to guide
him), reaching for his favorite juice at the grocery store, watching for him
running around the gym after church so he doesn’t escape the room…catching
myself in these moments is heartbreaking. My life has been turned upside down,
and I feel like every bit of purpose and happiness I once had is continually
dripping out of my body; initially it came as an immediate gush, a release of
pressure and emotion, and now it’s just a slow and constant drip. I can
confidently say that John and I will never be the same. Life has given us a new
perspective, and it just isn’t nearly as sweet without our Noah.
I know that I obviously still have purpose, or I wouldn’t still be breathing.
God has given me a desire to serve Him, and now that will just be through a different
avenue. I would give anything to still be able to take care of Noah, but because
he isn’t in need of me anymore, I have to move on, no matter how wrong it feels.
The beautiful part of this story is that Noah’s memory can be a part of my new
purpose, and though he is not with me physically, his spirit will always live in
my heart and my life will always be changed by his journey. Each day that I am
able, I will share with someone new his story and the motto I have coined for
his life - “Never Forget - Live 100%.” I do find joy in passing his
memory on to a person who never had the privilege of knowing him, by giving them
a “Pray for Noah” bracelet/directing them to his website/showing them a picture
of his precious face. Noah remembered so much; he never forgot a face or an act
of kindness. If you played chase with him once, you were sure to be reminded of
that and asked to play it again and again. If you weren’t doing something to his
standards, you were sure to be scolded to try harder, i.e. singing - “Sing
louder, Dad!!!” In these days of raw grief and heartache, it’s hard to do
anything at 100% except miss him, and love him. But with that motto always in
the back of my mind, and his memory in my heart, I will realize exactly the
purpose God has planned for me, with John David, and I will run after that with
all I that I have.
As for this moment, John and I are planning to place Noah’s memorial stone
tomorrow morning. I suppose this will be symbolic by bringing a finality to his
earthly journey; whenever we think of his death we will remember the place we
rested him, and remember this stone, which reads: The bravest boy who ever
lived, Noah Alexander Crowe, 2/28/08-5/18/12, Proverbs 3:5. This scripture
was one of his favorites, and he would recite it from memory. “Trust in the
Lord, with all your heart. Proverbs 3:5,” spoken with quite a cute speech impairment. It makes me
smile to remember Noah saying that, and how God would remind me through those
sweet words to trust Him. Even when none of this life makes sense, even when I
feel so much emotional pain and torment…trust Him. In this world we will have
trouble, but be of good cheer, Christ has overcome the world. I find my hope in
Him, because He promises I will see Him, and Noah, in heaven. No matter what
this life brings, Jesus will overcome it for us. Whether here or in eternity,
only He knows, and why….but nevertheless we do overcome when we choose to trust
and follow Him. It’s not easy, especially in the worst moments of my life, but I
will do my best.
If you are still inclined to pray for us, please do so, but not for healing
as one may pray for healing from a disease. Grief is not a disease, but rather
an emotional response to our loss, and this response needs to run it’s course.
Pray the our family would be “allowed,” or given permission to grieve as our
bodies and emotions see fit. In my experience, I’ve noticed that our culture is
not comfortable with those who are grieving because we haven’t, as a whole, been
instructed in how to allow or help a person to grieve. I feel like the first
place to start is to really pay attention to the individual and attempt to
discern what they need based on their cues/actions, or when they are having an
ok moment, just ask what they need, and remind that person you want to help. The
most helpful person I have experienced since Noah’s passing is the counselor I
spoke with a few days ago. She was so helpful because she gave me the freedom to
just talk (without interruption) about the ENTIRE experience. She didn’t try to fix anything. She
validated my feelings. She wasn’t uncomfortable. She let me cry. And I realize
she has been trained to handle people like myself. I just wish our society was a
little better at accommodating those who have experienced a tremendous loss.
Maybe we should bring back a few of those Victorian grieving practices, and wear
a black armband or some sort of outward sign that a person is mourning a loss.
That would explain to confused passers by that are wondering why I am crying in
the middle of the cereal isle, that I am not in fact crazy. When I catch myself
longingly watching other moms with their children, maybe they wouldn’t think I’m
creepy if they knew I was just missing mine. It’s hard not to want to scream at
the world, why are you still spinning when my life has stopped! Maybe
it’s best that the general public doesn’t know…maybe that will ultimately help
me to move forward when I just want to stand still. I said all that to say,
please don’t pray for our healing, but pray we can feel and mourn as we should.
There will come a day, slowly over time, that we become numb to the pain of
missing Noah so desperately, and we will appear as though we are being healed,
but know that a person just learns to live with a loss like this. The pain
doesn’t diminish, just the ability to feel it.
I wrote some thoughts on emotions and heartache in September of 2011 that I
was glad I came across again the other day:
“I don't think that the healing of God means that He heals us from all the
emotions of pain, suffering, loss, hardship and heartache, etc. because He feels
those emotions Himself, because we were in fact created in His image.
I believe He heals us by giving us a deep sense of pride
and contentment in His plan and purpose, a deep rooted joy that pushes beyond
all emotional states, and just - IS. He is the great I Am. And when we allow Him
to comfort us in our pain and hurt, that basic sense of His being with us and
His purpose for us will overwhelm all the other stuff. The other stuff
doesn’t go away, and I'm sure it will come and go as long as we live, but
neither does He go away, and He will come to comfort once again when the
grief and pain emote themselves over and over. These emotions can almost be
considered healthy, for they give us an opportunity to lean on God’s comfort and
strength, and make us stretch to find the joy (state of being - not an
emotion!) that is so deeply rooted in Christ.”
Now that I’ve rambled from one thing to another, I will close and go about my
day. I just needed to check in, let those who are still reading and praying know
that John and I are still living and moving forward through time, while learning
to live without Noah, no matter how much we hate it, and we are praying for our
new purpose without him to be revealed. Thank you for loving us, we feel that
love every minute, and we pray that God will lead and guide you all as well. I
will keep posting as long as I feel led, and hopefully in the months to come I
will have good news about new projects and endeavors, in Noah’s memory, and in Jesus’ name.
But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect,
establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever. Amen (I Peter 5:10-11).
It feels so wrong to have time to dry my hair, paint my toenails, all those things I seldom could do when I was caring for him. Our home is too clean; the silence here is painful and deafening, and the pain I am feeling is crippling.
Morning is the hardest, because for a fraction of a millisecond after I wake I expect to be surprised that he has stealthily slipped into our bed while I was sleeping. I expect him to ask me for his morning snuggle. Then I remember, my stomach turns while my heart races. There is nothing I can do for him. I am still his mother but my arms are empty; this seems like the cruelest fate of any. But my love for him outweighs any anger and sorrow I could entertain, and his life song will never leave my heart. I miss you terribly, Noah. From my hair to my heels. One can never anticipate the depth of pain that comes with the death of a child. God be with me, Holy Spirit don't leave me. This is too much to bear.
spoonful of frustrated, mixed with a dash of hopeful. Fold in a bit of desperate
and that is where I have been the past few days. . . hence the reason I haven't
posted a blog. I've been trying to work out my emotions with God's grace without
much success, it seems.
I've watched Noah slowly deteriorate over the past week as the tumors grow; day to day he looses some function that at one time gave him independence and confidence. He has always been a proud little guy, not wanting to cry over spilled milk or even a port access. He didn't want me to help him use the bathroom the other day, so I stood close to the toilet holding his backpack (that houses his morphine pump). He lost his balance and fell off the potty. As I helped him up he forced a smile through embarrassment, saying "I am going to laugh at that, Mom. Yep. That was funny." I know he is not only hurting physically, but his pride has been crushed and he fusses at me if I call him my big boy. He retorts that he is a little boy now. Wearing pull-ups again, he needs a lot of assistance to walk on his frail legs and also is loosing his vision so he runs into things without someone directing him where to turn. His train of thought wanders and he forgets the phrases he is speaking before he finishes them. Last night as he was lying in our bed during one of the few moments he was awake, he told me we needed to take him inside, he needs to be in his house. While John played some of Noah's favorite songs on the guitar he did his best to sing along with a very faint, raspy voice. He hasn't had any fluids through his iv because of congestion/fluid buildup and very little food for several days. His breathing pattern has slowly been changing from day to day; last night I timed 12 seconds between breaths. His pain is what I would describe as borderline severe at times, based on his past expression of pain. Yesterday and today he hasn’t interacted with anyone except during his few periods of alertness in the late evening. Our family just keeps sitting with him, talking with him, reading his favorite books and looking for some kind of communication.
I know it's better for him to be medicated than in severe pain, but seeing him almost lifeless but a deep breath here and there is horrible. It's like hell on earth watching my child suffer and slip slowly away from me, and I don't use that cliche lightly. We have had some sweet moments the last week, as I've noted in the last few blogs and he decided he wanted to go to Toys-R-Us on Saturday for a shopping spree. He did well and sat up in a buggy in order to better see his treasures. Monday evening he had a burst of energy and wanted a prize from Target. He did such a great job that one prize became four and he was able to lay down and "play" with his toys at home. These moments stir up some hope in my heart, but the anger is still there as well. Noah hasn't moved from our bed since Tuesday evening. Last night, he struggled to breathe and gasped for air several times during the night. He doesn't have the strength to cough up the mucous from his chest. These all are indicators that the end of his earthly life is near, whether it be a week or days we cannot know.
Even though I have cried and screamed to God in my heart, and I do not approve of the path He is allowing my family to walk, I am choosing to love God and trust Him through this situation and in my anger. In the same manner I choose to love and trust my husband when I am furious at him (yes, we definitely have our moments) but on a completely different level. I made a commitment to John in December of 2005 to stick with him through the good, bad, and the ugly, and to choose to love him every day of my life. (Marriage is definitely not always fairy tales and pixie dust, and true love is deciding to love my spouse when it’s not convenient for me to do so, i.e. things aren’t going my way, my needs aren‘t being met, life just plain sucks.) That commitment I made should not be broken. In a similar comparison, but on a completely different plane is my commitment to my God and my faith. When I decided that Jesus was the man I wanted to attempt to emulate, God was the Father I needed and couldn’t find on earth, and the Holy Spirit was real, and my Comfort, I was all-in with no turning back. Sure I've regressed in my walk with God, and I've wrestled and worked out my salvation like any other Christian. But there is one thing that I’ve always clung to - His love never fails. After becoming a mother I can see a tiny glimpse of how much He loves me, and the truth of His promise to ALWAYS love me, no matter what. When Noah has acted his worst, called me stupid, told me he didn't love me or want me around, I became hurt ("you hurt my heart!" as he would say). But my love for Noah is never once based on his ability to love me back or his choices to ignore my commands or even his respect for my decisions for his life. My love for Noah grows so deep that neither death nor life, angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing can separate Noah from the love I have for him. Now I am quite imperfect and ignorant, and therefore cannot love perfectly as does my Father God. So if in my imperfect love for my child I can without question love him beyond his own imperfection and ignorance, into eternity, how much more then is my Father God loving me through this anger and frustration, pain and desperation I am feeling right now? NO, I don't understand this suffering my child has been forced to endure, but neither do I understand or claim to even begin to comprehend the way God willingly sent His Son to die as a sacrifice for a sinful world, aka you and me.
In October 2011 after my life was uprooted and moved to Birmingham, I completed a miscarriage and found out about Noah's third recurrence on the same day. In my frustration and despair, God gave me the faith to claim this truth in my journal:
"He may allow everything I have to be taken from me - my son, my husband, my home - and yet He has still given me the greatest gift in the world in salvation through Jesus Christ, despite my unworthiness. This is the ultimate act of kindness and compassion - this is not at all 'fair.' How could I, knowing and receiving this, ever turn my back on Him?"
Right now, my life is not fair. My son’s life is definitely not fair. It is not fair to my family and friends that Noah is suffering…dying. It is not fair to his sweet little friends whose parents are forced to help them understand what is happening to their buddy Noah. It’s just not fair…but such is life. So that’s where I am today, wrestling with God, once again working out my salvation and emotions, begging for answers to questions that I said I wouldn’t ask in the first place. If you see me or write to me and ask, ‘how are you doing; how’s Noah?” please don’t expect a sugar-coated answer. This is real and raw, and statements such as, “Noah is going to a better place,” or “God‘s plan for Noah is fulfilled” are not going to help. I need my son here with me on earth, and unless the Lord reaches down very soon and heals Noah, my time with him is extremely limited. God’s love never fails, and my love for Him will not either…but we have some wrestling to do. Noah needs peace and comfort - it seems like when we reach a good spot for him, his health changes somehow, causing pain/discomfort somewhere and it’s a continuous balancing act with his medications to keep pain under control. John and I need wisdom, as well as peace; there are always decisions to make with end-of-life care, and we still have lots more to talk about. At risk of sounding like a broken record…this is hard. We appreciate your faithfulness to journey with us and pray for us when we feel at our lowest. I will continue to let you all know when things change for us. Much love to you all!
This morning his head is hurting again, and he has been sleeping most of the time. I am praying for another gift today like we received last night. God is good and faithful to supply all of our needs, and my love tank is full for this day. Thank you for your continued prayers for peace and healing, and John David or I will keep updating as we can.
With love and a grateful heart,
From a post I wrote about one year ago: "God is so good, and this battle is not only ours but His…and in that we find comfort. The Lord can heal Noah through a number of means, but whether that is in this life or eternity we cannot say for sure. We are not promised tomorrow and we don’t know what a day will bring forth (for ANYONE), so we live each day to the fullest and spend as much time together as we can." This is an uncomfortably real and present truth that we are facing tonight, but despite the fragility of life we have a peace that passes all understanding, because we know WHO is in control, WHO we follow and trust, and WHO allows each and every breath that fills our lungs. Not one of us is promised that we will make it home from work, school, or that quick trip to the grocery store.
From March 2011: "While reading today, the story of Lazarus jumped out at me and as I read I was encouraged. Jesus said to His disciples about Lazarus,'this sickness will not end in death. No, it is for God's glory so that God's son may be glorified through it' (John 11:4). Jesus loved Lazarus, and yet He tarried, and essentially allowed Lazarus to die only to raise Him from the dead, 'so that you may believe' (John 11:15). I don't doubt His power and ability to heal, but I also know that He may tarry and He is often 'slow to act' according to my watch. As I wait on the Lord to completely heal my son, I am encouraged by the letters and comments I receive from so many of you who are praying and believing with my family for a miracle. And I see how even now God is glorified through the work He is doing in Noah. Thank you for all you are doing and have done to show us the love of Jesus."
From December 2011: We need a miracle healing from the Lord. Noah will do such great things for this world, and for You, if You would only give him that chance. He will be a man of integrity and leadership, like his dad. Noah will speak such a great witness because of what You will do in his life. He will be a man who follows You at any cost. I have prayed these things over him for almost 4 years and now is Your chance to show so many that You have heard their prayer, and Your answer is "YES." This answer of "YES" would be such a small thing for You, You who can just think a thought and it will come to pass. You who know every hair on every head, God You can just whisper the word and cancer will be gone. This would be such a small "YES" for You, but such a life-changing "YES" for me, for John, for Noah....and so many who love him and pray for him. We cry to You Father with everything we have for You to do this for us. We cast out anything that is not from You that is attacking Noah's body, we tell it that Jesus is Lord of Noah and nothing else. We say to this cancer to flee, and torment this child and his family NO MORE. Jesus You are his healer, and God You are his Father, and Spirit You are his comforter. We pray for healing, in whatever form it may come in. We pray for You will, Father. And we know that Your peace passes all understanding, and we ask for that as well. You are always good, no matter what circumstance we may be in. We may not understand Your ways, or Your love, but we know neither one of those fail. So to You be the glory in Noah's life, and may Your will be done. In Jesus' name. Amen, so be it.
"Again I say to you that if two of you agree on earth concerning anything that they ask, it will be done for them by My Father in heaven. For where two or three are gathered together in My name, I am there in the midst of them” (Matthew 18:19-20).
Last night started what seems to be a slight upward climb. Noah's pre-school teacher "Ms. Ehwishabet" (Elizabeth) recorded the class singing one of Noah's favorite songs and then had each classmate say hi, with a final wish that he feels better and an affirmation that he is loved. Noah was sleeping when I watched it, but his eyes quickly opened and he said, "I wanna see." Keep in mind he had been asleep for the majority of the previous 48 hours. He watched the entire video twice, sitting up, and then said, "I wanna go with you, Dad" and agreed to ride in a wagon while John and I walked around downstairs. Seeing his classmates, teachers, and knowing that they miss him and love him gave Noah the hope he needed to push through some pain and lethargy and get moving. It was awesome. He has still had pain and vomiting last night and this morning, but his morphine drip was dialed down a bit, and with an increased steroid dose he feels better now than he has in almost a week. He has been awake much more today, interacting with the doctors, nurses, and us in such a sweet way. Dr. Reddy called him "kiddo" today and he replied, "No, that's not my name! My name is Noah Crowe." We caught a video of him saying, "Hey Daddy, I..love...you. So....much." (His speech is slower as he stutters and sometimes struggles to find the right word.) My heart just wants to explode in these moments, and I am etching them in my memory. Our hospice nurse and the doctors on call are working to get Noah a small pump that he can carry with him, and hopefully get him set up with that so we can be on our way home later this afternoon. Noah is afraid to go home today, he told us, because his head is still hurting. We are doing our best to reassure him that the special nurse that will come to our house is going to take care of him, along with Mom and Dad, just like he's being cared for here...and with a much more comfortable bed and lots of toys! Please pray that the transition from hospital to home is an easy one for us all, and that we are all comfortable with the care that Noah will receive there. We've seen what prayers can do, so please don't stop! Lots of love to you all.
"This child can face uncertain days because He lives!" - Hymn "Because He Lives"
There is a young lady named Taylor fighting for her life in Texas right now; she is from the Florence, AL area. She just had one of her lungs removed because of a long fight with childhood cancer, and the lung she has left isn't functioning like it should. She may have to be placed on an echmo machine, and is being transferred to another hospital there in TX. Please also pray for God's mercy on her life, that she would heal and recover quickly. You can read about her fight here.
Thanks for your prayers, gifts and enouragement. We appreciate them all!
Friday night, 5/3/12
Today has been another difficult day, but I am encouraged that we will soon have Noah's pain under control and with the help of the experienced and compassionate staff here on 4-Tower we will soon be headed home to care for Noah in the way that we believe is best for him. We had a very realistic, matter-of-fact & informative conversation with Dr. Howard about what the future will hold based on his past experience with these types of situations. When John and I made the painstaking decision to not pursue any more experimental treatment, we did not know exactly what that would entail, but we had (and still have) peace that this is the right choice. There comes a point when a parent knows that a line needs to be drawn and we have reached that line. There are no more viable options, and we feel it's time to let him rest. Facing this future is so incredibly difficult...so many hopes and dreams John and I have for our family are being threatened and that is emotionally a very hard pill to swallow. Our chaplain today said it so well while describing a seven-year old boy who had just held his lifeless infant brother for the first time: "Mama, why would God do this?" His mother responded what most of us would, "you will just have to ask God and see what He says." "I don't want to know what He says," the boy replied. And I am right there with that little boy, I don't want an answer to my question "why, God?" because it will not only fail to ease my pain but I will not ever be able to understand the ways of the Lord and why He allows suffering in our lives. I prayed a prayer over four years ago that God would protect my son, grow him to be a man after His own heart, but above all glorify the Lord in all that he does. I prayed that same prayer over and over as Noah grew and thrived. That cold day in November 2009 when Noah was diagnosed, I questioned my prayer. Maybe I don't really want him to glorify the Lord, if this is what that looks like. Maybe I don't want to entrust God with my son's life if He won't protect him from death and disease. I quickly had to dismiss those tempting thoughts because the goodness of the Lord is so much more than I can ever comprehend, and His love for my son is so much more than I can ever have. The thought came to my mind the other day, what is God protecting Noah from? If He allows my son's life on earth to end at such a young age, I can only wonder about the heartache and pain and suffering that he will not experience. In turn, I am beginning to feel like all that heartache, pain, and suffering that Noah may not experience is being poured out on me and my husband. Someone told me today that I was a "rock," and I so appreciate that compliment, but I know it is far from my reality. But I made a decision several months ago that I will live in these days that I have with Noah, good and bad, and soak up every moment. I will have a lifetime to cry, grieve, and be angry (and I currently have my moments here and there) but I will not have regrets about this time I have to focus (mostly) only on him and the joy he brings to mine and John David's lives. I want to continue to move forward this way, not wasting a minute. I've felt very weak lately, and with each prayer that you lift up for our family I feel the arms of the Lord pulling back my shoulders, straightening my back, shuffling my feet...keep moving forward, He says. Don't look back on regrets, but look back on joy, store up those sweet memories in your heart; look around you and rejoice in these moments that you have today, for NO ONE is promised tomorrow, but only the breath of now. God has been faithful to guide my family through every step of this journey, and I don't expect Him to leave me once this is all said and done. He is quite big enough to handle every question I may throw at Him. He can handle my anger and grief, and He will guide me through it. He won't walk away from me, nor I from Him, but we will wrestle with this together. I still trust Him, and I'm making that choice every day, even when it hurts. If one cannot trust his God with the people that he loves the most, he doesn't really have faith. I will need to be reminded of this post when I am struggling the most. Thank you Lord for sweet moments and precious memories, and for the promise of eternal life and renewed strength. When Your goodness is at it's hardest to comprehend, I thank You for bending down close enough for me to feel Your embrace. Thank You for being the solid Rock that I stand on. I still believe You are Healer, and I trust You with not only my future, but the future of my entire family. May You receive the glory, forever and ever, amen.
I don't know what the future looks like, as far as Noah's health is concerned. He is in a lot of pain right now, and our goals are to make him comfortable, surround him with the people that he loves, and allow him to enjoy his toys and play things as much as he can. I am hoping once we get the right balance of medication he will bounce back and be a little more active. He just hasn't been the Noah that so many of you have seen running around with endless energy, and it breaks my heart to think of how much he is suffering. Please pray with us for his pain management, and for the vomiting and fevers to stop. John and I are growing weary by the day, with little sleep and lots of stress, so please pray for God to renew our strength each day as well. The grandmothers are both coming today, so hopefully that will help put some joy in Noah's spirit. It hurts me so much to see him broken like this.
Once again thank you to everyone who is praying, bringing dinner, sending encouraging cards and emails...you are blessing us more than you can understand and I promise when a need arises John David or I will call on those who have made themselves available. We have not given up hope for Noah's healing on earth, but we know that regardless of what is God's path for him, Noah will be healed and on that promise we stand. I know that we don't all agree on the details of this life, but there are some things we do agree on when we pray together for Noah - that God is mighty to save, He is an ever-present help in trouble, He is our comfort and our Rock, and always will be our healer. Keep praying, and don't give up because we most certainly are not, and know that you are greatly loved for fighting this flood with us. Noah is such a brave boy, and he often reminds me, "all my friends are praying for me, Mom." Yes they are, sweet boy. One day you will realize the enormity of that statement.
I will update as I can. Much love to you all.
Sermon from April 29th,2012
Our disappointment is His Appointment.
Suffering, it is unavoidable. All of us will suffer in this life - either by disappointment, persecution, sickness or even the death of a loved one. The question to ask in suffering is not "why am I suffering?"
but rather ..
"God how can you be glorified in my suffering?"
Friday, 4/27/12 -
Tomorrow we have lots of family coming into town, then a fundraiser to attend tomorrow afternoon. The Hope for Autumn Foundation is having it's annual crawfish boil and Noah is one of the children with cancer that they are sponsoring this year. We are very grateful that he was chosen to be a part of this event, and we are looking forward to a fun-filled afternoon, and praying it is free of seizures, headaches, and whatever else could possibly happen. Pray with me that Noah will have a great day visiting with his family (one of his favorite things to do) and at the event tomorow afternoon. Thanks for checking in on us, and please continue to pray with us for a miracle!
Noah was feeling fine this morning as we all got ready for work and school. He ate breakfast, played with his toys and put up a fight about what shoes he was going to wear. (Over the past few months he has become very interested in choosing his clothes for the day, so most days you can definitely tell he dressed himself!) He was very excited about seeing Ms. Elizabeth and his classmates, and they seemed excited that he made it to school today as well. Around 9:30 Noah got sick in class, and had a pretty bad headache. John brought him to his office; Noah requested all the lights be turned out and then took a nap. We were all dissappointed that he wasn't able to enjoy the morning at school. After his nap he woke up feeling much better so we had lunch and headed to the hospital.
Our meeting with Dr. Reddy went just as expected, and we are left with pretty much the same options as we had after the last recurrance, minus surgery. 1. Noah qualifies for a phase I clinical trial that is available at the moment; it requires that he take one experimental drug along with 2 types of chemoterapy drugs and an antibiotic. Most doses would be administered at home (orally) with very few hospital visits. There are some likely side effects and as always a few very unlikely, but risky ones.
2. The second option is a chemotherapy that has had some success in children with medulloblastoma (another type of cancerous brain tumor) and would be given along with two other drugs (one is a chemotherapy and the other one is a type of drug that I'm not sure how to pronouce so I won't even try to spell it...). This treatment would require lots of time spent in the hospital to monitor his body's responce to the drugs. 3. Thirdly, we could opt for no treatment for Noah, other than what he would need to make him comfortable. That could be steroids, pain medication, whatever would work for him. No one can give us an estimated amount of time that Noah would have if we choose this option, but today we were assured that Noah would progress gradually, and not as though a switch had been flipped, if that makes sense. John and I have already noticed that pattern over the past few weeks as his episodes of headaches and vomiting have been growing closer together.
Of course there are other "alternative" therapies out there and if we encountered one that appeared to be even somewhat promising (based on legitimate personal testimonies) we could consider those as well. In the beginning of Noah's treatment when he had his first surgery, then began his first chemotherapy regimn, we weren't really given any options because that was the typical protocol for his type of cancer. Sometimes that protocol worked, and sometimes it didn't. Now that Noah hasn't responded to any of the therapies that worked on other kids, the decision has passed from those who have spent years and years in medical training and research, to two people who have no medical background at all, but love and care for this child more than anyone else in the world. Geesh, this is hard. And I know we just went though all this three months ago, wrestling with making the right decision, choosing the right path, and that decision gave us 3 more really good months with Noah. So in order to make the best decision for Noah, and not for John and myself, we need lots of prayers lifted up once again for guidance and wisdom. To know that our family has so many people remembering us in prayer is absolutely amazing and encouraging...it fills me up on a night like tonight when I am just plain emotionally exhausted. John and I need some quality quiet time to ourselves to discuss and pray about our next steps, and one of us will post again when we come to a decision. I will do my best to keep you all informed of Noah's health, but by now you know I'm not one to update every day or even week if life is uneventful. So, "no news is good news" I suppose. Thank you so much for checking in on us, and keep passing the word to pray for another miracle for Noah!
"I will exalt You, my God the King; I will praise Your name for ever and ever. Every day I will praise You and extol Your name forever and ever. Great is the Lord and worthy of praise; his greatness no one can fathom. One generation will commend Your works to another; they will tell of Your mighty acts. They will speak of the glorious splendor of Your majesty, and I will meditate on Your wonderful works. They will tell of the power of Your awesome works, and I will proclaim Your great deeds. They will celebrate Your adundant goodness and joyfully sing of Your righteousness" (Psalm 145:1-7).
Shortly after this picture was taken Dr. Wellons and his sweet nurse Nadine came into the room to talk with us about the results. I could sense something was wrong from the look in Nadine's eyes. She coerced Noah from the exam room and the clinic nurses kept him busy while Dr. Wellons showed us the scans. The tumor is not only growing, but it has metastasized to other parts of his brain. More surgery is no longer an option. We have an appointment to meet with his oncologist on Wednesday to to find out if there is a clinical trial available for Noah to participate in. Noah's nausea, vomiting and headaches he has been experiencing the past few weeks are affects of the growth. Other than that he has been feeling well.
After we left the hospital we took our usual trip to Toys-R-Us for Noah to pick our his post-MRI prize, which he is now enjoying with Dad. John David and I haven't had a chance to talk about this, and we haven't been emotional in front of Noah; he picks up on our stress pretty easily so we are attempting to keep calm until we can find a moment to talk. I don't know if we will decide on a clinical trial if there is one available, I don't know how long we will have with him with or without any treatment...I just don't know what our next step is, except for this: we will continue to pray for his healing, continue to love him with abandon, continue to do our best to raise him the way we feel the Lord would have us, and make him as happy and comfortable as we can. There is only so much we as parent's can do to control our child's life, namely his health, and this reality has never been more clear to us as it is today. So we release his precious life to our Savior, praying for His will to be done, asking for wisdom/guidance, and pleading with Him to grant Noah another miracle on this earth. We appreciate your faithful prayers and encouragement, and we ask that you continue to pray for healing and peace. We are still riding out this storm, and we will not give up even though we feel as though we are drowning. I will update after we speak with Dr. Reddy on Wednesday afternoon. Much love to you all.
As I type I am in the most decadent room I have ever stepped foot in on the 21st floor of the Ritz-Carlton hotel in Buckhead/Atlanta. I honestly don’t know exactly how I got here. Through a network of friends, by the generosity of strangers, and with a humbled spirit I sit in a bed with linens that are probably worth more than my entire wardrobe. I am definitely out of my element but I have enjoyed every minute here with my family. I haven’t needed to clean, do laundry, dishes, or anything on my daily punch list. The staff here is amazing and my family has been treated with such kindness and care. We have been totally pampered, and Noah has felt like a king (the staff continues to bring him plates of gourmet sweets). John is really happy about the complimentary boot shine, laundry services, and amazing food. I am just thanking God that we were provided with a weekend getaway to relax and enjoy each other before Monday. I didn’t know that a weekend relaxing in a 5-star hotel was what I needed to let go of some of the stress and anxiety I have been hording, and I am very thankful that it was orchestrated without my input! Sunday morning we are attending Buckhead church, a campus of North Point ministries, and I’m really looking forward to that service, and hoping to glean some more wisdom on how to release my cares to God. I know all the scriptures concerning it, but I am not very good at living it out and putting it into practice.
I have no idea what will happen on Monday. I’m trusting God to continue to show out through the miracle that is my son. I’m praying constantly for the Lord to continue to pour his healing into Noah’s body. He has been through so much and come out on the other side doing so well with very few side affects. (Noah was recently confirmed through psychological testing to have a cognitive disorder due to his surgeries and the trauma they have caused to his brain. He lacks executive function, and without almost constant redirection and lots of structure and proper discipline he becomes a very difficult child to handle. He becomes very angry and aggressive quickly, and the smallest inconvenience or unmet expectation will set him off like a rocket. We have been given some great tools to help guide John and myself through the process of parenting Noah, but there are days that it wears both of us down. On those days we have to remind each other that there are many other complications that could have manifested through Noah’s treatment; we just have to keep being consistent and push through the rough patches.)
Like I said at the beginning of this post, God is always providing where and when I need it. My battle with my thought life is going to be a life-long struggle as it is with everyone…I will not be tempted by anything that is not common to every other man/woman. But HE is faithful and just to provide a way out of that temptation. And he has always been there to offer a way out. It is up to me to choose whether or not to dwell on those “last days” thoughts, and often times I do, ending up with a face wet with salty tears and with a nauseated stomach. But tonight I am choosing to reach for the way out of these negative thoughts through the power offered by Jesus Christ. I am choosing to believe that He has more healing for Noah, the boy that never gives up. He just keeps going, and going, and going. Pray for Noah with me, and ask God to extend his hand of mercy once again this Monday morning. His scan is scheduled for the first slot, so we should have the results early to mid-morning.
A few verses before the scripture I mentioned above says this: “Rejoice in the Lord always. Again I say, rejoice!” (Phi 4:4). ALWAYS. Not sometimes…not just in good times, but always. I am rejoicing in the evidence of Jesus Christ and his promise to heal, whether in this life or through eternal life…he is our healer. Let us rejoice because he always provides a way of escape from temptation. Let us rejoice because he offers eternal life to any man/woman/child who would come to Him in humility and with belief in his forgiveness. Let us rejoice because death does not have to be the end of life. He is good to us on such a grand level that we cannot understand, and for that I will rejoice.
Thanks for reading my ramblings and confessions, and hopefully someone can take something positive away from this blog. Your encouragement and prayers help us through this journey…we appreciate you!
Well, I have been avoiding this blog for long enough. I haven't been the most positive person on the planet the past few weeks (try saying that ten times fast), and I have been struggling with what-ifs again as we await Noah's MRI in April. It is such a difficult task for John David and I as Noah's parents to be 100% focused on the miracle of the present when we allow worries of the future to cloud our minds. It takes a constant day-to-day and even minute-to-minute renewing of our thoughts by the promises and truth in the word of God to keep us focused, and we admittingly fail at that daily. But despite the temptation to fall into depressive thoughts and to play out what-if scenarios, God has held us together with the glue that binds so tightly that no attack of the enemy could put a wedge in between us. Beyond all of our ability, our eyes are constantly open to lies and deceit that are thrown in our direction. We realize that we are not just in a battle for Noah's life and for our family, we are in a spiritual battle of darkness vs. Light, and Truth vs. lies. I don't know how many of you reading believe in something I've heard most call "spiritual warfare," but for the past few months John and I have been fighting against a barrage of lies and temptation of depression that we don't typically deal with. By the power and grace of the Holy Spirit we have been able to see these attacks for what they are...lies and trickery. It's so frustrating that the joy in our miracle is being threatened because of these attacks where we are weak. But thankfully where we are weak, God is strong and we can stand on that promise!
I have to publicly honor my husband by saying that for the past several weeks I have been so proud of the lessons he has taught in our Sunday morning contemporary service (called SonDay Live), and I am so thankful that God has provided this opportunity for him to preach several times a week and fulfill his calling in this season of his ministry. His honesty in the messages he gives is such a testimony to God's grace and goodness to walk with us, even carry us through the hard stuff in life. In his vulnerability to admit his struggles and mistakes, he allows God to speak to me and challenge me to become a better follower of Christ. I am honored to be linked with him through this journey. Here is a link to his most recent sermon: that you may have LIFE! I hope if you are able to watch that God will encourage you through his words.
As I mentioned earlier, Noah has an MRI on April 23rd. Please be in prayer for no evidence of tumor...that Noah is healed and will need no more treatment! Also I ask for prayers for John David and I as we fight off the temptation to worry and fear our future as a family. We are so thankful for the encouragement and support you all have given us and we love you even though we don't know who most of you are!! We have a gracious God, who gives graciously through His people. Keep praying and remembering Noah!
We have been home now two weeks and things are going very well for Noah. Yesterday we took him for his post surgery check up and he had all of his stitches removed. I quote Dr. Wellons - "Noah is amazing" - we agree.
He wasn't very excited about getting his stitches out as we drove to the hospital. He had a lot to be taken out. He sat in Jessica's lap and did very well sitting still. His Nurse Nadine was called stupid by him several times as she tried to be as gentle as she could. She has a lot of patience and a great way with Noah. As soon as it was over he told us since his stitches were out he wanted to to to the Chick-fil-A play ground. We agreed.
Noah is back to his old self, running though the house with different items of clothing on as his costumes. One moment it's a cape and he is Darth Vader, the next he is wearing his underwear as a mask and he is Nacho Libre the wrestler. We don't know what to expect any given minute. These have been some fun days.
The picture on the left is looking at his head from the bottom. The White void is what is missing from the left side of his brain.
Noah is a walking miracle. He hasn't lost any abilities in movement and motor skills that he had before this last surgery. His memory is for all we can see perfectly unaltered. His speech is somewhat affected, he stutters sometimes when he is starting a sentence. His temperament it seems is the same as it was. We give God the glory for allowing Noah to come through this surgery so well. We know God uses doctors and medicine to heal. He gave man wisdom to accomplish great things in the medical field. We thank God for his doctors and nurses that take such great care of Him. And when medicine can't do anything else, we know that God isn't finished, He uses medicine, and sometimes He just works it out Himself. Noah is missing between 1/5th - 1/6th of his brain, and if you didn't see the scar i don't think you would ever know. So we give God Praise for the things he has allowed to happen in Noah through this surgery.
Noah's next big step is the MRI scheduled in April. Dr. Wellons wants us to wait three months to get the next scan. Everyday i fight the urge to think about this. It's the hardest thing I am going through right now. I am trying to live 24 hours at a time, and enjoy the now. Jesus said not to worry about tomorrow, today has enough to worry about. Some days the battle is harder than others. As we get closer to April, please pray for the peace of God to guard our hearts.
Christ said if we would speak to the mountain and had faith, it would be removed. Please join us in praying for Noah, for every cancer cell to die at the root, that this mountain would uproot itself and be cast out of his body and that he would grow up to be a Godly man in an ungodly generation.
Thanks for praying!
Spread the word, Pray for Noah
In other news, we had a scare last night: he was sitting on a bench at our kitchen table, and just fell off and hit the back of his head on the floor. He was screaming in pain, John and I began to panic, and I paged the nuerosurgeon on call. I'm sure she has had many calls from frantic parents like myself whose child has hit their head after a craniotomy, so she reassured me he would be fine, and children are going to hit their heads from time to time. I felt a little silly for being so paranoid, but better paranoid than apathetic, right? With some Tylenol and rest he felt much better. Now I make him sit in a chair with a back if he is at the table alone. :) Geesh.
John is doing well and working hard. Noah is not happy that he is back to work, and he protests every time John leaves the house. It's really pitiful. I've tried to explain that Dad has to work so he can take care of our family, so we can have food, a home, cars, and toys. This afternoon he scolded John for getting ready to head back to church, saying, "We don't need food!! Just toys! No food, no house, just toys!!" I guess he only wants John to work enough to buy toys. :)
We have a follow up appointment with his neurosurgeon next Monday; he will have the stitches removed then. I hope he will be cleared to return to school; he misses his classmates and teacher. We aren't sure what, if any, treatment will be available or best for him following this surgery. I'm assuming an MRI will take place in the next few weeks (one month or so after the last scan). We have received several emails regarding alternative therapies that are available, and if you have sent one of those, thank you (I haven't responded to very many emails lately). John and I are still trying to decide what the next step will be based on what would be best for Noah and our family. Above all we are praying the surgery removed every cancer cell from his brain and we will not need to make any more treatment decisions because no tumor will ever grow again, and he will live to be a very old man with an amazing story of how God used Noah's physicians along with His healing hand to spare Noah's life. For this child we will pray, for His glory to be made known, and for His will to be done. Thank you all for joining with us in prayer! I am beyond humbled and amazed at the evidence of God working in Noah's life and I hope that all who pray for him have been encouraged by this win...this "YES" that is so big to us!
Monday, 1/9/12 -Jess
Just because we are in a not-so-ideal environment and situation, we still like to laugh and have fun! Last night we had a popcorn-pajama party and watched Wipe-out and America's Funniest Home Videos, two of our family's favorite shows (yes, we find pleasure in laughing at people as they injure themselves doing ridiculous things). Between laughing at people, playing with Star Wars toys and Noah's new Temple Run fascination, its not 100% a bad experience. :) Thanks for your continued prayers as we wait!
Noah in occupational therapy.
"Wait on the Lord; be strong, take heart, and wait on God" (Psalm 27:14).
Saturday, 1/7/12, 6:30pm, Jess
Noah is disappointed that we will be here another night, but I tried to explain this is the best place for him to be when he doesn't feel well. He is sleeping again, along with Dad. :) Please pray that this is just a normal temperature change, and for it to go back down quickly. Also pray for his nausea and vomiting to subside, and for infection to stay far from him. John David will be preaching tomorrow morning and evening, and I know it will be difficult for him to be away from Noah while he is feeling sick...so you could say another prayer for him to feel at peace about this, and for the Holy Spirit to direct his words so those who hear it would be motivated to read God's word and grow closer to Him through the message.
Thank you for everything you have done and are doing to support our family! Much love to all. :)
Saturday, 1/7/12 - Jess
Noah had a rough night last night. He tossed and turned, talked and fussed, persuaded and manipulated to try to get out of bed. We tried everything to coerce him to sleep; he didn't get a nap yesterday so I knew he was exhausted. Finally at 2 am he dozed off with the help of some Benadryl. Then his CT scan was at 5am - so much for a good nights sleep! He did well for that and went back to sleep when we arrived back in the room. He is sleeping now thank goodness so I hope he can get caught up. Good news is the scan looked good so his drain will be coming out sometime this morning. He will not get a topical medication at the site so I'm hoping he does will with the removal and stitches to close up that area. He should come off fluids also, then we will hang out while he is monitored to rule out anymore headaches/vomiting, or any other issues that could arise after the drain is pulled. If all goes well, we could look at going home this evening or tomorrow. Now, this is wonderful news for us and we will all be relieved to be back home. But good grief does this make me nervous. Noah has already been requesting to walk all the time and wants to try things that he just isn't ready for. We will obviously have to restrict his activity at home, and that will not go over well with him. As his "wobbly" feeling subsides he gets more confident, which is once again wonderful from one angle, but also frightening from another - one small fall would send us back to the hospital. We are also going to be watching for any changes in his incision, bleeding/oozing/etc. It will be quite a task to keep his little fingernails from scratching it. So even with all of my motherly worries, concerns, and stresses I am completely blessed at how this has turned out. Dr. Wellons is without a doubt an amazingly skilled surgeon and along with his OR team, nurses that have cared for him, (and the grace of God) Noah is doing so well that he is forgetting about the limitations he has had for the past four days. Praise be to God.
We have received lots of encouraging emails and facebook messages and are so grateful to everyone who follows Noah's progress and prays. We are seeing our prayers answered one at a time. John and I have been overwhelmed by His goodness through the hard stuff!
Noah’s drain has been removed and he is doing well. His iv line was also disconnected and I guess he wasn’t paying attention when that happened. I just helped him up to use the restroom and he walked a few steps, stopped, and started slowly spinning around with a big smile saying, “Look! I’m not tangled anymore! That makes me happy!” It was really cute. :) So we will hopefully be discharged around 6pm if all goes well for the next few hours. We will continue to keep you informed. It’s going to be a good day!
Friday, 1/6/12 -
When the physical therapist came to visit, Noah decided he would try to walk from the bed to the sofa. He did very well, though he is still complaining he is "wobbly." He has since walked (with assistance of course) to the restroom and the sofa again. We are very proud of him and very pleased with his progress! He has not vomited today, thank goodness; neither is the pain as bad as yesterday. So he is pushing along, and we will just wait and see what tomorrow brings with the CT scan. Thank you all so much for your prayers and encouragement! We still have a fight ahead of us so please continue to pray and spread the word!
Noah taking his first walk
Thursday, January 5th 2012
Occupational therapy came today to check out his movement and encourage him to sit up and move his neck. He has a pretty sore neck and didn't want to move too much. He hasn't stood up on his own yet and hasn't had a desire or tried to walk. This evening he asked us if he could sit on the couch with us. We were excited that he was the one making that decision. We got his out of the bed and managed to carry him over to the couch.
We are so thankful to God for the abilities Noah has. There were (and still are) so many things to worry about going into this surgery. It is so easy to take for granted everything our bodies can do. Today, when Noah looks at me in anger and says "your stupid", I'm so thankful he can recognize me with his eyes, cognitively reason that he is mad at me - figure out a good insult and use all the faculties that make speech happen and say it with all the gusto of an angry three year old. It's a new perspective I have. Jessica and I have told him over and over how much we love him every time he has said it. Some parents would give anything to hear their child speak one more time - I don't type this lightly. Parents would trade it all for their child to walk again, see again, live again. Knowing precious families in these positions makes it difficult sometimes to publicly rejoice over Noah's abilities after all he has gone through. We are so thankful to God for everything Noah can do.We give Him praise and hope Noah's story will bring Him glory.
I encourage you in view of what you just read, to examine the great abilities God has blessed you and your loved ones with, and take some time today to bless Him for His goodness and His mercy and pray for those who struggle with the loss of abilities or the loss of loved ones, and reach out to those who need help or extra grace. Don't take for granted you children for one moment, don't let anything deprive you of loving on them and spoiling them every day, and don't ever assume that you are promised tomorrow - make the most of every opportunity you have.
thats enough preaching for tonight :)
Please pray that Noah will be able to eat without nausea, that his pain will be managed, that he will be able to move his neck completely and when it comes time to walk - that nothing goes wrong.
Spread the word - Pray for Noah
Wednesday, January 4th, 2012
We had a great blessing this morning. We were told yesterday that Noah was 7th on the list of patients scheduled for MRI. That meant it would be sometime in the afternoon before he would go to the machine. He wouldn't have been able to eat anything until then. But we received a call from one of our favorite MRI nurses who gave him the 7:00am spot first thing in the morning!! We are praising God for His favor on Noah! He did very well before the scan. They put him to sleep and after it was over wheeled him back to the PICU. After a short time, Dr. Wellons, His Neuro surgeon, came for a visit (He's the guy in the blue scrubs).
The scan results showed no residual tumor in the brain. Dr. Wellons was very optimistic and pleased with the surgery. He was able to remove everything he could see that was tumor and the tissue surrounding it. This does mean that he removed more of Noah's brain, but it seems that he has not been affected by this.
Tomorrow, physical therapy will come by to help him take his first steps after surgery. Please pray this doesn't cause him any discomfort.
This website had almost 18,000 hits from individuals yesterday. I still haven't wrapped by brain around that many people reading about and praying for Noah. Today 8,000 people checked in. Its is overwhelming to think about. The family of God is not bound together by denominational ties, geography, race or gender ~ but by the love of Christ who has encouraged us and given us his sustaining peace in the midst of the storm. Thank you, my family, for loving us though this crazy time.
Once again I'm reminded that Jesus told his disciples to get into a boat and take a trip to the other side. He never told them about the storm they were headed into, or the very possible threat of death that laid before them. What he did do was take a nap. They panicked - He slept. He knew what the outcome of the trip would be, they had no clue. It seems this scenario is a trend in the kingdom of God - know what I mean? When Jessica and I married, we never saw this coming. When Noah was born, we never saw this coming. And here we are. Sometimes during this journey it has felt like Jesus was napping. Every time we have heard disappointing news or watched Noah suffer I wrestled with fear and anger - and even panic. I have asked tough questions to God that haven't been answered yet. I may never get some of the answers in this life. But I don't believe I am in this boat alone. Now that we are though this surgery, perhaps the Master will stand up and speak to this horrible thing called cancer and say "peace- be still" and we can move on to the next part of our lives. Until then, we are going to do our best to remain in His peace.
We had a visit from the CEO today in our room on 6th. He was very kind to Jessica. (I was home getting a short rest) It does my heart good that so many of you expressed your concern for the PICU policy. Perhaps parents who are in our situation in the future will have a less stressful experience. Our voices have been heard. Thank you.
Noah saying "thank you" to all who pray for him
If you would like to let the CEO know what you think of this policy you may send him an email at
The Children's Hospital of Alabama
Mr. Wm. Michael Warren, Jr.
Chief Executive Officer
Nothing seems to change in this world until people rise up and voice their opinion. For the sake of the parents who will have to experience this after us until the new PICU is built, please voice your concern.
We are in recovery!
His surgeon came by and checked him out. He squeezed his fingers with both hands, raised up both arms high in the air, wiggled his legs around and was able to count the number of fingers he held up in front of him. Praise God for His goodness that Noah has not shown and negative effects of this surgery so far!! He has asked for Darth Vaders ship (a toy) and called his IV lines "stupid" - so we know his personality hasn't been altered : )
We will be in PICU for 24 hours at least then move on to a recovery room elsewhere. Hopefully they will take him to the 6th floor. Until then Jessica and i will be beside his bed as long as we can.
God has once again answered our prayers. Our little hero has come through yet another dangerous surgery. We praise God for every person who had a part in todays events and are so very grateful for this hospital. We had so many encouraging words from so many of you and over 17,143 individuals visited this site today. I cannot express my gratitude to you who have kept up with Noah and lifted him up in prayer. This fight isn't over. We believe Gods plan for Noah's life is far from finished.
"He who began a good work in you will carry it on to completion until the day of Christ Jesus." Phillipians 1:6
Pray with us that God will complete this work of healing and use Noah's life for His glory!!
Pass it on -
Pray for Noah
1/3/12 2:30pm -
1/3/12 12:00pm -
1/3/12 10:45am -
1/3/12 9:38am -
Tuesday, 1/3/12 -
Friday, December 30, 2011 - Jess
Update on the Crowes: John David is doing well in Gatlinburg along with the senior high youth and chaperones; they seem to be having a great time at the conference. I am feeling better, getting over this cold, but feeling the stress of packing and moving compounded by the thoughts of surgery coming up in 4 days. But - it will get done! I have family and local friends helping me to pack, move, and clean. If we get everything moved from our apartment to the new house by dinner time Monday I will be a happy woman. :) Noah is doing ok, he hasn't been nearly as active as usual and still complains of headaches. The steroid he is taking was helping with the headaches at first, but today the dose was scheduled to be lowered and he complained of more pain after that happened. So, he is back to the full dose of steroids and sleeps for about 4 hours during the day now (he's been asleep for about an hour as I write), off and on. Before his trip to the hopsital on Monday John and I talked with Noah about the surgery and what to expect. We showed him pictures from the last one and so he is I guess as ready as 3 year old can be for it. He told me today he was ready to go to the hospital so the doctor could help him; I encouraged him the headaches would go away soon after "the boo-boo comes out." I just hope I am right. Someone made a comment today about us taking on a lot right now, with the move and surgery and all. I got to thinking on that, wondering if I am crazy for doing it now, but I realized that I am really glad we are doing it now because it keeps my mind occupied and my hands busy. Especially with John not here, if I didn't have this huge task to accomplish I would probably always be on the verge of an anxiety attack, worrying about the outcome of this resection. I have been on the fence about this decision for a long time, solely because I am worried to death about something going wrong during the procedure and Noah not being "Noah" when it's all said and done. Honestly, I am more afraid of him losing his ability to do the things he loves the most more than I am afraid of him dying. (I know that sounds backwards and ridiculous, and I'm sure the comment would be "wouldn't you rather have him here and alive, even with handicaps than for him to die?" and of course, obviously, yes I want and deeply desire him to live - regardless. But my fear of his regrets of loosing so many things that are just, "Noah" has eaten at my heart for months. I can't imagine living without him, and I won't think on it...but I have imagined him living without be able to do things he loves to do, and that scares me.) It would kill me to not be able to watch him run, or jump on the couch, or hear him sing in his sweet toddler barely-on-key voice. For him not to be able to communicate with us or even let us know why he's angry at me would rip out my heart. I am so in love with who he is, every bit of him, even the faults and flaws, and I am praying so hard that all will be well. I don't often give myself the chance to "what if" and worry, because he is usually with me and my attention is on the present. But times like now when he is sleeping and my mind is wandering...these times are difficult and stressful. So I wrote it all down for you to share in my stress! Sorry about that, haha. :) But I know if you're still reading you are willing to bear this burden with us, right? I can't thank you enough for joining us in walking this road, and if only through reading and praying that is more than enough.
We are scheduled to be at the hospital at 5:30 am on Tuesday. Noah will go to MRI and have his scan then he will be taken directly to the OR. I have no idea when the actually procedure will begin, but right now I will guess around 8am -very rought estimate! If you would like to pray specifically for Noah during his procedure, John and I will be posting very short updates as we know his progress while in the OR. In the past they have let us know when they begin, when they are getting close to closing up, and when they are stitching him up. We will do our best to post this website page link through facebook when we get those calls from the OR, or have a family member do it for us if we are unable to. We need an uneventful surgery, all the tumor down to every last cell to be removed, Noah to retain all this movement and speech and vision and personality. We need God to guide the surgeons' hands, the anesthesiologists, the nurses, just everyone involved in the procedure. We need freedom from infection. We need Noah's blood pressure to remain at a safe level, and his blood loss to be as minimal as possible. We need a miracle healing from the Lord. God please use this procedure and these people that you have called and gifted to take care of sick children to heal Noah. He will do such great things for this world, and for You, if You would only give him that chance. He will be a man of integrity and leadership, like his dad. Noah will speak such a great witness because of what You will do in his life. He will be a man who follows You at any cost. I have prayed these things over him for almost 4 years and now is Your chance to show so many that You have heard their prayer, and Your answer is "YES." This answer of "YES" would be such a small thing for You, You who can just think a thought and it will come to pass. You who know every hair on every head, God You can just whisper the word and cancer will be gone. This would be such a small "YES" for You, but such a life-changing "YES" for me, for John, for Noah....and so many who love him and pray for him. We cry to You Father with everything we have for You to do this for us. We cast out anything that is not from You that is attacking Noah's body, we tell it that Jesus is Lord of Noah and nothing else. We say to this cancer to flee, and torment this child and his family NO MORE. Jesus You are his healer, and God You are his Father, and Spirit You are his comforter. We pray for healing, in whatever form it may come in. We pray for You will, Father. And we know that Your peace passes all understanding, and we ask for that as well. You are always good, no matter what circumstance we may be in. We may not understand Your ways, or Your love, but we know neither one of those fail. So to You be the glory in Noah's life, and may Your will be done. In Jesus' name. Amen, so be it.
"Again I say to you that if two of you agree on earth concerning anything that they ask, it will be done for them by My Father in heaven. For where two or three are gathered together in My name, I am there in the midst of them” (Matthew 18:19-20).
Tuesday afternoon update
Thanks to all of you who checked in to his blog today and prayed for him. Noah is a fighter and a great patient. He is tougher than nails and braver than most when confronted with needles, tests and strangers who work at the hospital. We are thankful God has blessed him with courage and grit. Now that he is on steroids - that grit has all but turned him green, expended his muscles and made him look like Lou Ferrigno. That being said - pray for Jessica's and my patience : )
We are headed home to pack what we can for our move to the new house next week. Hopefully Noah can come home to a new house with a backyard and a comfortable place to recover.
Thanks for praying & pass it on!!
This afternoon Noah is feeling much better; he has eaten breakfast and some lunch, and is understandably ready to go home. Hopefully he will continue to feel fine and his wish will come true soon!
ER Update 10:00pm
So for now, Noah is is a good place in good hands. We will find out tomorrow what the surgery plan is.
Thanks for praying - keep it up.
Monday December 26th, 2011 - Sitting in the ER
This morning he woke up feeling pretty bad. He has symptoms of a cold and has been coughing all day. He began throwing up around 1:00 pm this afternoon. He never complains about headaches, so when he laid down and told us his head was hurting and wanted to sleep we knew there was a problem. This afternoon has been a series of long naps, waking up and throwing up and drifting back to sleep. He has been complaining of his head hurting all day. We wrestled with the decision to bring him to the hospital. We hoped the head ache and nausea were just symptoms of the common cold. But we also have very little room to take risks, so here we are. His condition warrants that any change needs to be examined. Currently, he is unusually tired. He hasn't ran around at all today or had the usual energy. Jessica hasn't had to tell him to stop jumping on the couch once, so something is wrong. The good news about it all is that we spent no time in the ER waiting room. He was triaged and immediately put in a room. As you can see by the picture - he is thrilled to be here : (
So - keep praying. We don't know the next step. As of 8:13 pm we haven't seen a doctor yet. We will post something when we can.
Thanks for keeping up with Noah,
Please spread the word
Pray for Noah
Wednesday, December 21, 2011 - CT results
John David has had a youth trip planned for months; he leaves December 29th and returns the 31st. We have decided that he will go on this trip in a separate vehicle, just in case anything develops while he is in Gatlinburg, TN…but we are trusting that God will keep Noah stable until January 3rd. We have secured a new place to rent, and were planning to move the first week of January if all works out with the real estate group and the owner of the home (we wanted to get settled in at the new home before his surgery on January 10th) so now we have a new challenge there and will have to move after Noah’s surgery.
Prayer requests: Pray that Noah will not develop any symptoms or have any change in his abilities (walking, talking, clumsiness, vision, etc.). Pray that John David and his senior high youth group will have an amazing, spirit filled, life changing trip to the conference in Gatlinburg, and that John will not have to return home before it is over. It’s important to us that he spends that time with these awesome young people, and is there to help guide them and pray with them, etc. (That means REALLY pray for the first request - that Noah will be stable until Jan. 3rd!!!) Pray that Dr. W. and his family have a wonderful, restful trip; he, along with so many other physicians, sacrifices so much to take care of sick children and I ask God to give him amazing quality time with his family, and especially his own children. Also, pray for our new rental home, that the logistics will all work out with that and we can make a comfortable home for Noah as he recovers from the procedure.
I have more requests regarding surgery, but I will post those later as I have to make this short. I just wanted everyone to know what we are facing now. I’m very shaken by this news, even though I have known the reality of what Noah is facing….it hurts so much to hear that he could possibly not make it 2 ½ weeks. We are still believing for a miracle. Thank you for loving my son! We love and appreciate all of you that read these updates and pray. God bless you all and have a wonderful, merry Christmas. Make it the best one yet, and show your children how much you love them, no matter how old they may be. Love you all!
Tuesday December 20th, 2011
It is a huge relief that we get to celebrate Christmas and the new years holiday at home. This should be a pretty good Christmas. Playing the part of Santa, Jessica and I have gotten him two bikes. One that has pedals (and training wheels) and one that has a motor and is battery powered (in case after surgery he has trouble with pedals). Either way he will get what he is asking for - a new bike.
So unless we hear something different tomorrow, it looks like January 9th we will check into the hospital and prepare for surgery # 3 on the 10th.
Over 3,800 of you visited this site today. We are getting some of the most encouraging emails from strangers, words of love and strength from our friends on Facebook and even meeting people who know about Noah for the first time in restaurants. Folks all over are praying for him and we are so very humbled. Cards from all over have come to our house to encourage Noah and some of you have surprised us with early christmas presents for him at our apartment. God is strengthening us through you.
Thank you for your gift of love - your prayers for Noah. A greater gift could not be given.
Pass it on
Pray for Noah
Monday December 19th, 2011
We haven't posted a new bog since getting back and apologize to all of you who have checked in regularly. We needed some time to make some important decisions concerning Noah's treatment. On the way back from Florida, Jessica and I had a very long talk about what we wanted to do. We discussed every painful option and their potential consequences. We decided that as long as there was even a 1% chance something would work, it was worth trying. Some parents don't get the 1% chance, we feel fortunate we have it.
We called His Neuro Surgeon that day on the drive back and set a date for the surgery for December 21st. A few days later, Jessica received a call from his nurse informing us that since there were such big risks involved in this surgery, he wanted to postpone it until after Christmas. He wanted us to have the holiday with Noah and try to enjoy it. This shook us up a bit. We wrestle with the fear that this is the last Christmas we will have with him.
We met today with his Neuro surgeon, Dr. John Wellons at Children's hospital to discuss everything about the surgery option. Noah has already been through two very serious brain surgeries to remove this tumor. From what we have been told by our doctors - this is the last option he has. The tumor attacking Noah is best treated by complete resection. In this surgery, his doctor will not only remove the tumor he can see, he will also cut into the good brain tissue that is underneath and surrounding, tissue that could very well control Noah's functions of speech and movement on the right side of his body. There is a small chance of morbidity - the loss of control of key organs which will hasten death and a chance of stroke or worse. The chance this surgery will get every last cancer cell is very small - but it is still a chance.
Because Noah has already been through two surgeries and can still walk and talk, his doctor believes his brain has compensated for the damage the tumor has caused and he feels strongly that his motor and speech functions are on the right side of his brain. He is optimistic and we are very hopeful that this surgery will not change him in any way.
Due to the rapid growth of the tumor, we are unsure how much time we have. Noah will have a CT Scan early tomorrow morning (Dec. 20th). Noah currently is scheduled for surgery on January 10th. The CT Scan will show us if he can make it until then. If the scan shows that the tumor is too large and Noah is out of time, we are going into the hospital tomorrow for prep and will have the surgery Wednesday (Dec. 21st). If there is still some room for the tumor to grow, Noah will stay home for Christmas & we will wait until January 9th to be admitted, have a MRI and prep for surgery on the 10th.
Jessica and I are trying our best to be strong, to find the joy in life - in the blessing of the moment we are in right now. We are not sure how this is going to turn out. We haven't lost our hope yet, We know that with God all things are possible. He ultimately is Noah's great physician - Noah is in good hands.
Please continue to pray for a miracle. Honestly, I didn't think our story would get this far. I hoped the pathology report would come back benign. I hoped every MRI would show no growth, I hoped every surgery & radiation and every drop of chemo would do something to put an end to this horrible monster called cancer.
I have some hope left that God still waits until man cannot be credited with any success. He did it at the Red sea, Gideons army, the wall of Jericho, the woman with the issue of blood, the Centurion's servant, Jairus daughter and dead Lazarus.
He can do it for a three year old boy that doctors have said will not make it.
Pass it on
Pray for Noah
Here are more pictures of our Disney trip
Sunday December 4th
Today we are getting to stay after the park closes for the extended Christmas party and parade. I can't wait to sees the look on his face during tonights party. I will try to post some pictures.
We are waiting to hear a time we can meet again with the neuro surgeon when we get back. We still haven't landed on a decision and to be honest, I haven't wanted to think about any part of that down here. Once we are back at home a very tough decision must be made. But for now, we are gearing up for the big Mickey Christmas party tonight & dinner with Winnie the pooh, then tomorrow we wrap it all up with supper with Cinderella. He is an excited boy.
Thanks for keeping up with us! Please continue to pray for Noah.
Below is a video of Noah and me on Disney's fastest ride, the test track at Epcot. They say it gets up to 60 mph. His laugh and smile say it all - Noah loves it!!
(P.S. the woman screaming in the background is not Jessica,)
November 21st, 2011
John and I have been divided on the surgery option for a while, and we haven’t yet discussed the consultation with Dr. Wellons. This is such an extremely hard decision to make, and we can’t be leisurely about coming to an agreement. We are both praying for peace and wisdom from the Lord, and we ask that you pray with us that God will guide us to a solid decision, one that we will look back on and not have regrets about. His quality of life will be a major factor in our decision, and right now he is still doing very well, despite the scare we had yesterday. We are still leaving for our Disney trip this weekend, and if we do proceed with the surgery it will be sometime the week after we return. We also ask that you pray for his physical ability to not be hindered next week so he can have the most enjoyable experience at Disney World as possible. We have several super fun events planned for him, and we want him to have an amazing time with his family.
I can’t speak for John in this, but today I have felt very weak, physically and emotionally, and I find my peace and joy being tested. I told our hospital chaplain this morning that I was doing my best to push all sadness and grief aside because all I have is this moment and I don’t want to miss or regret anything that I could experience with Noah. But after loss of sleep, waiting, bad news, and pressure to make one of the most important decisions I’ve ever had to be a part of making, I feel just plain beat up and that leaves my heart not quite as guarded as I need it to be. So, I’m still claiming for our family Philippians 4:6-7 that “the peace of God which transcends all understanding will guard your hearts and minds in Christ Jesus.”
Even in my sadness today, I was able to give thanks to God. Noah was in the hallway outside of our room running as best he could, infectiously laughing, and giving out hugs (which looked more like full-body tackles) while another child pushed his walker in order to get a few laps in, a mom held her infant in a doorway with IV lines dangling as she tried to comfort her child, and behind closed doors in dark rooms other children tried to sleep, while still others didn’t have the ability to even get out and roam the halls. As we approach the Thanksgiving season, I’m often tempted to be reminded first of all the hurt my family has experienced surrounding this holiday: deaths, diagnoses, surgeries, etc. but no matter how bad a day may be I believe we can always find something good in that day - if only in the grace and forgiveness of Jesus Christ then that should be enough for us. I will have to remind myself of that truth again this Thanksgiving; we have so very much to rejoice in and praise God for, and we will live in today and make the most of it!
Thank you all for praying for us, for Noah, and I hope everyone has a wonderful Thanksgiving holiday!
Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus (1 Thessalonians 5:16-18).
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you (Philippians 4:4-9).
He began throwing up around 2:30pm and didn't stop for an hour. Jessica laid him down for a nap around 3:30pm. He has gotten out of the habit of taking naps, so we knew something was wrong. He was still asleep at 6:30pm. Jessica tried to wake him but he would not wake up. She called his nurse who advised us to get him to Children's hospital. By 7 he was still not responding. She placed him in the van and we started down the road. He woke up in the van and began asking for food, which was a good sign.
Once at the hospital he ate a few pieces of chicken but soon fell back asleep where he wouldn't wake up. He is being admitted tonight and is being scheduled for an MRI in the morning.
We have an appointment with his Neuro surgeon in the morning. The new image from the MRI should give us a clear picture of what's going on and what we should do.
We desperately need wisdom.
Thank you for praying for Noah. Spread the word.
Saturday, 11/19/11 - Jess
We have a meeting with Noah's surgeon on Monday afternoon, so I will update again once John and I decided what we are doing with that situation. Hope everyone has a great Sunday!
"Now faith is confidence in what we hope for and assurance about what we do not see" (Hebrews 11:1).
Tuesday, 11/15/2011 - Jess
There are some of you who are reading that believe the medical reality that Noah cannot survive because there are no medical means that can save him. There are some of you who are reading that believe that God will heal Noah if enough people have faith as small as a mustard seed to move this mountain that is brain cancer. I must fall somewhere in the middle at the moment...I believe with everything that I am that God is all powerful, all knowing, and has the ability to just think the thought that Noah will have earthly healing and it will be. No matter how I am tempted to doubt with my mind, my heart has always been full of faith in God’s ability and power. My fear for the past two years has been: if God chooses not to intervene, will I still have faith in His plan and His will for our lives. Now that I am so very close to dealing with this situation, I can honestly say that I am filled with a peace that passes all understanding, and that my heart and mind are definitely guarded from any attack by anything unholy or untruthful (I understand that this will be a daily battle). There are so many theologies and opinions out there, and many are being tossed our way. What we find truth in, we store up in our heart; what we discern as hurtful/ignorant, we disregard as good intention. Right now, I know that my desire for Noah to be healed on earth is a purely selfish motive - I need him here. My primary role for the past 3 ¾ years has been to love, nurture, protect, and care for him to the best of my ability. With that taken away, I will enter a completely new season, my roles will shift (with no other children, I will obviously no longer be a mother) and I will face something completely different and that’s frightening.
Noah has been through so much in his short lifetime. He has always looked like a normal healthy boy (with exception his bald period and monstrous scar), and I have often wondered if people understand how much children with cancer have to endure. In his experience alone: Brain surgeries, drains, steroids, PICU isolation without parents, loss of peripheral vision, port accesses, hours/days of chemotherapy drugs through IV, days upon days of chemotherapy side affects (vomiting, diarrhea, lack of appetite, metal taste in his mouth, no immune system, isolation because of potential for infection, toxic urine requiring anyone changing diapers to wear gloves, sores in his mouth, blood and platelet infusions, drug reactions, hair loss, potential for hearing/vision loss, potential to develop other types of cancer as a result of the drugs, weakness/fatigue, daily GMCSF shots in an attempt to boost white cell count), radiation (daily sedation, hair loss, loss of executive function, potential for long term IQ loss), very long and tiring clinic visits, very long (even extensive) hospital admissions during neutropenic states, lots of time spent in a car seat driving back and forth to the hospital, loss of a normal childhood…..this isn’t even all of it. There are things we have all experienced that have been blocked from my memory. I read other blogs from cancer parents and think, oh yeah, we did that…that was horrible. And there are children we see every time we visit Children’s that have been through and are still going through SO MUCH MORE. Children who have lost mobility due to surgeries or treatments; we are blessed that Noah can run. Children who aren’t able to speak or have major speech delay; we are blessed that Noah rarely stops talking. Children who have not had nearly the quality of life that Noah has….for these things we are blessed. For the past 2 years WE’VE BEEN BLESSED, and so very thankful to God for Noah's abilities. If the day comes that we have to say goodbye to this dear sweet and precious child of God, we will not ask God, “why did you not give us a miracle?” because the past 2 years have been nothing else but a miracle. Yes, he has suffered a great deal. He holds up well, and you would never know what he has been through at first glance. But he has fought very hard, and very well with very little complaint. And for him to be completely healed and whole, though not with me and John, will hurt us more than words can describe and at the same time give us peace beyond understanding. It is a very hard thing to watch your child suffer so, and have no control over his pain and sickness.
I had not planned to bring up this subject, but please know that I want you to continue praying for Noah’s earthly healing, as I said earlier, pleading with God to grant Noah a long and healthy life on this earth, doing His will here and helping to grow God’s Kingdom. But know that sometimes God says no to our prayers, and that does not make Him mean, as Noah often says of me when I tell him no, and that does not make God unloving, because just as you want to give good gifts to your children and make them happy, you cannot say “yes” to every request they have of you, because you can see farther ahead then they can. We as children of God cannot understand his ways because we can’t see ahead, and we wouldn’t understand even if gave us His reasons. Have you ever tried to reason with your child? :)
I love this little boy in a way that I love no one else; it will never die, it will never fade, but only grow. And Jesus loves Noah immeasurably more. In that, I find my comfort.
Noah has at several times come to John and myself (unprompted/unprovoked) to say, “I’m going to live with Jesus.” We smile and say, “one day we all will (when we love and follow Him) Noah, but right now we’d like you to stay with us here.”
These days have difficult moments, but overall they are sweet and wonderful, and we are trying to make the most of each minute, and make memories along the way. Memories that “will last us the rest of our lives.”
Thank you for sharing in this difficult, winding road we have been traveling and please know we love you all for all you have done for us. I hope you can take away something positive and encouraging from this post; I just wrote what was on my heart and I am trusting God it needed to be written. The song I posted above is one of my current favorites, and the one posted below has reminded me to rest and trust in Him.
Thursday, 11/10/11 - Jess
So - now we are back to square one. One option down, three to go...we are hopefully meeting with his surgeon sometime soon to get his opinion on a third surgery. We have not wanted to go this route, since after each surgery the tumor has continued to grow. There are so many risks with brain surgery, and we don't feel comfortable allowing Noah to go through it once more if the tumor is going to come back again in 3 months (which it did after the last surgery). But we want his surgeon's opinion before we close the door on it. Chemotheraphy is out of the question - too many side affects with very little, if any affect on the growth. Maximum dose of radiation has been given already. Doing nothing - well, it's just not even an option for us right now if we can help it. So we are still praying for guidance, wisdom, discernment, and most of all healing. Please join us as we pray, and ask others to pray with us...please.
Saturday November 5th, 2011 - John David
After a quick stop to drop one Grandmother off and pick the other up in Athens we headed to Memphis Tn. for the Yo Gabba Gabba live show at the Orpheum theatre on Beale street. If you are not familiar with the Yo Gabba Gabba show, just know its Noah’s favorite show. He had a great time.
We stayed the night in Memphis and woke to eat breakfast with Jessica’s aunt and uncle, Kerry & Erik Eliason and then headed to the zoo. Noah loved the playground and the petting zoo with the chickens, goats, pigs, cows & ducks. He also had a good time watching all the monkeys playing in their areas. It was a good day to be at the zoo.
We parted ways with Kerry & Erik and met up with my cousin George Welty, his wife Dana and son Brenan. We had lunch at a very unique diner called The Caritas Village. I encourage you to check out the web site and be inspired. We had a great visit and lunch and were back on the road toward home.
Noah has handled the new treatment well so far. There are a few things going on that may be side effects. His stomach is more upset than usual and his skin is dry and itchy. We are very proud of his ability to swallow pills and go without breakfast until 11:00 am on the days he takes it at the hospital. His nurse Julia is a very sweet lady. We can see her genuine care for him in the way she treats him. It is very comforting. Noah has an MRI on November 28th. This will mark Noah’s two-year battle with cancer. We are praying the scan shows this new medicine can stop the tumor. Please pray with us.
Some very generous friends have given us lodging for a trip to Orlando Florida November 29th – December 5th. Thank you to everyone who has offered us help in this area. We have been so humbled by the offers sent to us. Noah’s oncologist Dr. Reddy has told us she doesn’t think Noah will be hindered in any way on this trip. Conversations like this pull us into the reality of Noah’s situation. We are trying to make the most of every opportunity we have with him. We encourage you to do the same with your family.
Please continue to pray for Noah to be healed, that his life would fulfill the purpose God intends and for him and for me and Jessica.
Spread the word … Pray for Noah
Wednesday, 11/2/11 - Jess
Hope everyone had a Happy Halloween! As you can see in the picture, we had a family theme going on. :) Big Darth Vader and the Storm Trooper just happened to be hanging around the RUMC Trunk or Treat event and jumped in the picture with us...it was great fun. Noah also went trick or treating at a friend's neighborhood on Monday night, and has now learned the meaning of Plex the robot's song, "too much candy's gonna make you sick!"
Noah had his first treament with this new clinical trial on Tuesday. He did very well considering I had to be creative in entertaining him at the hospital for about 6 hours. He did well during his port access, waited patiently for his line to clear so the nurse could get a blood return, swallowed 2 pills like a champ...and was promptly rewarded with two age-appropriate Star Wars action figures. (I've learned over the past 2 years that this kid will go along with any medical procedure if he is promised a prize...not sure what that is doing to him psychologically, but my philosophy thus far has been "whatever works.") The only side affect he has encountered was an upset stomach, and I honestly believe that was the candy's fault from the night before. (After this week's treatment he will visit the Dr. once a week for labs/evaluation, while taking his meds every other day.) He went today for labs, tomorrow we go back to CHS to take another dose of medicine and labs, Friday we go back for labs, and then we are off to Memphis! We have purchased tickets to a Yo Gabba Gabba Live show as a surprise for Noah (he wanted to meet the characters of the show for his Make-A-Wish but they weren't all available.) Hopefully it will be a good experience for him. Saturday we will tour the Memphis Zoo, so it should be a fun weekend.
Tonight I have been looking at some of the blogs I'd posted throughout our journey, and God has reminded me of His faithfulness through it all. Even in my moments of ultimate weakness and exhaustion (many nights spent in the ER, days upon days of in-patient stays, several bad MRI results, 2 lengthy surgeries, miles of separation from my husband/Noah from his dad, watching my son loose his childhood to the affects of chemotherapy...) I have written about his faithfulness and goodness.
From a post I wrote one year ago: "God is so good, and this battle is not only ours but His…and in that we find comfort. The Lord can heal Noah through a number of means, but whether that is in this life or eternity we cannot say for sure. We are not promised tomorrow and we don’t know what a day will bring forth (for ANYONE), so we live each day to the fullest and spend as much time together as we can." This is an uncomfortably real and present truth that we are facing tonight, but despite the fragility of life we have a peace that passes all understanding, because we know WHO is in control, WHO we follow and trust, and WHO allows each and every breath that fills our lungs. Not one of us is promised that we will make it home from work, school, or that quick trip to the grocery store.
From last March: "While reading today, the story of Lazarus jumped out at me and as I read I was encouraged. Jesus said to His disciples about Lazarus,'this sickness will not end in death. No, it is for God's glory so that God's son may be glorified through it' (John 11:4). Jesus loved Lazarus, and yet He tarried, and essentially allowed Lazarus to die only to raise Him from the dead, 'so that you may believe' (John 11:15). I don't doubt His power and ability to heal, but I also know that He may tarry and He is often 'slow to act' according to my watch. As I wait on the Lord to completely heal my son, I am encouraged by the letters and comments I receive from so many of you who are praying and believing with my family for a miracle. And I see how even now God is glorified through the work He is doing in Noah. Thank you for all you are doing and have done to show us the love of Jesus."
These past two years with Noah have been such a gift and a miracle, considering his medical condition, and we have been blessed to have the perspective on life that God has shown us. We are in no way giving up on Noah, and we are still fervently praying and believing for his healing on earth, but we also know that He belongs to the Lord and Noah's life is in God's hands. Thank you for continuing to pray with us for his healing and for God's glory!
"For this child I prayed; and the Lord hath given me my petition which I asked of Him; therefore also I have lent him to the Lord; as long as he liveth he shall be lent to the Lord." - 1 Samuel 1:27, 28
"But may the God of all grace, who has called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever. Amen." 1 Peter 5:10-11
Tuesday, October 25th, 2011 - Doctor Visit
But the battle is raging
In clinic 8 of the Childrens hospital in Birmingham today we sat down with Noah's Oncologist Dr. Reddy and our good friend, Chaplin Paul Byrd, and listened to our four options for treatment. We had hoped we would never get this talk. Other parents who have walked this path can identify it is a hard talk. It's nothing you ever want to hear.
The cancer attacking Noah has not responded to 4 different kinds of chemotherapy. It has grown back twice after two very intense brain surgeries. He was given the maximum dosage of radiation allowed and it has now grown larger than any other time besides when we first saw it in November 2009. I was not expecting it to be so large. When we saw the images from the MRI I was overwhelmed. It hasn't grown large enough to affect him yet. Unless God Intervenes, it is only a matter of time.
The first option we were given was more chemo. It would make him very sick, loose his hair again, kill his immune system and put him back in the hospital. It didn't work in the past and there is no evidence it would work now. We don't want that.
Second option was a third surgery. Neither of us had any peace about this. It's off the table.
The option we have chosen and feel peace about is a clinical study he is eligible for. A new drug is currently in trial for cancer patients called MK-2206. It has had good results in studies with animals. The clinical trials with adults also had good results. The trial is now being phased for children with cancer. Noah is qualified to be a part of this trial. It is not a chemotherapy drug, it is a biological drug. They tell us the side effects will be very mild compared to chemo. Noah will take a pill every other day and for the first 10 days go to the hospital every day for blood work, urine samples and a physical exam. After the first ten days he will go once a week. After 28 days they will evaluate how the treatment is working with an MRI. While they give us very little hope it will dissolve the tumor, they hope it will keep it from enlarging. Hope is good.
We have an odd peace. A very odd peace. Today his Doctor told us that there is very little chance Noah will survive. Our fourth option was to go home, do nothing and make the best of the time we have. We haven't landed there yet. But in the midst of this horrible appointment there is a peace in our hearts. I have had many scriptures go through my heart to my head today. I would like to share two.
6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Phillipians 4:6-7
Scripture doesn't tell us we will get everything we ask for, but it does promise us that we will have peace, and God will guard our minds. He hears our requests, and then helps us live with His answers.
25 Who of you by worrying can add a single hour to your life? 26 Since you cannot do this very little thing, why do you worry about the rest? - Luke 12:25-26
We have no idea how this story will turn out. What we do know is that worrying about it isn't going to do any good. God is God and we are not. His ways are not ours. His plans are not ours. His will for our life is that we glorify Him even in our suffering and disappointments.
We are still believing God for His healing. We are still asking God for a miracle. You can join in this prayer with us.
Friends of ours at the RAMP in Hamilton Alabama prayed for Noah in a service several nights ago. You can join in this prayer by going to this link and letting the video load and watching at 1 hour & 43 minutes --- 01:47:00. (give it time to load, it may take several minutes)
Noah's story could turn out very differently than what all the doctors expect. Only God knows - and we are trusting Him.
Many have asked what they could do to help. Here are some answers.
1) We are looking for a way to get Noah to Disney with his cousins. Some are working on this already. If you have a time share you would be willing to sell at Disney please contact us.
2) Pray that Noah will be able to swallow a pill. The new treatment requires that he swallows a pill every other day.
3) Pray for our house in Athens Alabama to sell. This will help relieve a lot of stress on us.
4) If you see Noah, treat him as normal as possible.
Many of you know us very well. Some of us have never met. For those of us who call Christ savior, we are family - and family is extremely important. I plead with you, my family - spread the word ... and please ...
Pray For Noah
Thursday, Oct. 20, 2011 - MRI Results
Tuesday, October 18, 2011 - Jess
This past Saturday the Ghost Warriors Motorcycle Club from Arab, AL hosted a very successful benefit ride for Noah, and we, once again, are at a loss for words to describe how grateful and humbled we are at the generosity of so many people. There were many businesses as well as individuals who contributed to help the event become a success, and we forever indebted to you!
I can't close this post without sharing about a sweet little boy who is fighting for his life in Vanderbilt Children's Hospital: Justice Perry isn't quite 2 weeks old and has an amazing story. His family has been an encouragement to us, especially in the beginning of our Noah's fight. Troy and Sara, their first son Noah, and now Justice are some of the finest examples of walking out faith that I have seen. Please watch this video for a glimpse into their lives, and what they are facing. You can also follow Justice's progress here on their Facebook page. And most importantly, please pray for Justice's healing, and strength for the family.
Thank you for reading this update, for wondering how Noah is doing, for continuing to pray for his complete healing, and for not forgetting that EVERY DAY 46 children are diagnosed with cancer, and 7 lose their fight.
We love you guys! Check back Thursday for an MRI update!
Noah and John playing starwars.
Big news for the Crowe Family! July 27th - John David
Now, Jessica and I have not been tasked with something near as important as Mary & Joseph. But when God reveals His will to you, it is paramount that we say yes. We don't understand God's timing, and the good news is - we don't have to. We trust in the Lord and we don't lean on our own understanding. When we acknowledge Him in all our ways, He directs our path.
So we are excited about the new season we are entering in our lives, but we are also sad to leave behind our home, family and friends. Our community has been so wonderful to Noah. Over the last 20 months we have received such an overwhelming display of love for Him. It is difficult to leave that behind. Friendship Church is one of the greatest churches I have ever known. It is not perfect - no church is, but the people there have loved us without conditions. They have stood by us through our darkest moments, cried with us, laughed with us and financially held us afloat. We love our church.
To clarify - and to put rumors to rest. (I have chuckled a little bit over what we have heard - why some people think we are leaving.) It isn't for more money, it isn't for bigger church, it isn't because we are mad at leadership, it isn't because things aren't happening the way I like or want them to happen. These reasons are not the truth and aren't even issues. None of those reasons are ever a reason to leave a church. When God puts you somewhere, you stay until He leads you to the next destination. My Pastors have prayed with me and given me a blessing to move into this new season of ministry. What an excellent way to move from one family of faith to another.
I love Friendship's leaders & staff like family, I love my church family like family. We love Athens and our community.
We are moving on because God is leading us to minister in another location. He does that quite often. I will bet you can find several examples of this in scripture.
Noah is doing very well. He is running all over the place staying busy, making noise and helping us have opportunities to practice self control : )
We have a big prayer request. Please pray that God would lead someone to purchase our house in Athens. We are not anxious or worried, but we know the power of prayer. You can click on and see the listing here
Thanks for praying for and checking on our son.
Spread the word
Pray for Noah.
MRI results Wednesday, July 20th - John David
We sat in the exam room waiting on his doctor to come in this morning. As we waited we played and laughed with Noah. She came in with bubbles and smiles and informed us that the tumor had not grown any. "In fact", she said, "it appears to have gotten smaller." We could not have received better news today. The spots on his spine have not changed since the last MRI so she has no concerns about them. It seems that the radiation accomplished what they meant for it to do.
We are so thrilled that for the next 89 days we can try our best to push cancer aside and let Noah live without needles, drugs or side effects. He has been through so much since November of 2009. We praise God that Noah has been given a "Stable" diagnosis for the next three months.
Over 700 people visited this site today and I have no clue how many posted on facebook a prayer request for Noah. Jessica and I are so humbled by such a great outpour of love for Noah. Thank you to everyone. We love you
Pass it on - Pray for Noah!
A great week at the beach! - John David
This was Noah's first time to ever see the ocean. It was a great place to have this experience. Please click on the lighthouse image below to find out more information about this wonderful organization.
This MRI will show us if the radiation treatment this spring worked to stop the growth of Noah's tumor. The threat of bad news is very real. The chances of remission are slim. The fear of a bad scan is at times overwhelming. We needed the time with other parents (and their kids) to get unique encouragement that only comes from those who have walked through this kind of pain. We were reminded about the sovereignty of God from parents who lost their daughter to cancer 11 months ago, who encouraged us so much that you can still say God is good when you dont get your prayers answered. We met Truman, an awesome kid who is full of life. He happens to be an amputee because of cancer, but can still do a great cannonball into the pool with only one leg. His mom & dad reminded us that it sucks to be forced to be grateful for things most take for granted, but be grateful anyway, and to rejoice (and not be angry) every morning your kid wakes you up (even if it is 5:30 AM) because it means they are still here. We met a mom who has been given the worst news you can get about your child's prognosis ~ and she is still able to say "God is good". They are all my new inspiration.
Only God knows what lies ahead for Noah. If we treat everyday as a gift, celebrate the moments we have as best we can, and use our situation to show that when things are so painful - God is still good, I think we can live without regret.
So, thank you lighthouse family retreat for a wonderful trip! Thank you to our new friends Julie & Jessica for loving & taking care of Noah during our small group time.
Wednesday July 20th is a big day. Please pray with us for Good news.
Spread the word ~ Pray of Noah
Wednesday, 6/22/11 - Jess
He has an MRI on Wednesday, July 20th. Because we haven't been to Birmingham in a while, it's easy for me to push the bad stuff to the back of my mind. The closer we get to July 20th, the more the "what-ifs" creep to the forefront. I am doing my best to stand on the promise that all things will work together for our good, meaning that Noah will be healed on this earth and live a long life, honoring the Lord and sharing his testimony of healing. But sometimes that promise means that your good = an early departure to eternity with Him. So many parents with cancer kids have to accept the latter promise...I can't imagine how hard it must be to accept that. There is a sweet young girl named Lindsey that I have written about before, and her parents are grasping for every second they can have with her. Please, please remember them in your prayers, especially Lindsey as she is suffering. You can read her story here.
There is no easy way to transition from the depression of thinking about Lindsey and all that she has been through, to being excited for some future trips we are planning. John and I use such sobering news to remind us, as I have mentioned above, that each day and even each second is a gift to be honored, cherished, and put to use. So, we will be traveling to Florida for a beach retreat, provided by an organization called Lifehouse Family Retreats, just before Noah's MRI in July. We also have a few short trips planned for Atlanta, Chattanooga, etc. and hope to go on some of those before summer is over. We have been so blessed to be given such opportunities to share in fun family activities and make some wonderful memories. We appreciate all who have contributed to allowing us to do this! Once again I have to reiterate how thankful we are for the love and support we continue to receive...even though life has been uneventful and I have neglected to update regularly, I know that you all are still sending love and prayers, and we appreciate you and love you back! If I fail to update before Noah's MRI, rest assured that you will be informed of the outcome of the MRI asap.
The past couple of weeks have been amazing for us. We returned from the Orlando area one week ago Wednesday. Noah's Make-A-Wish trip was awesome and we all had a great time. We stayed at Give Kids the World, which is an AMAZING place for children with special needs/serious illness to stay with their families and be spoiled for 6 days! Noah received a gift just about every day, swam in the pool and played in the splash pad, "drove" the train, played putt-putt golf and video games, ate ice cream any time of day he wanted to (hey, it was vacation!)...he LOVED it. It truly earned the name he gave it - "the fun place." Every Thursday there is Christmas, and Santa and Mrs. Clause come to visit with gifts for each child. Wednesday morning they offer horse rides, other mornings certain characters come from Disney and Universal to greet the children, they even have a carousel, Noah's favorite. It's a magical place, and I've described it so some as "an Emmaus walk on steriods." If you're part of the Emmaus community you'll understand that statement. Most everyone who works at the GKTW Village is a volunteer, and the love and compassion that you receive from the volunteers is just amazing. While eating breakfast one morning, a volunteer server approached me and John and just said, "has anyone told you how special you are lately? We all know that your little guy is special, but the sacrifices you make to care for him need to be recognized." It really touched our hearts. And man, they think of EVERYTHING! We were given tickets to all the major attractions in Orlando: all the Disney Parks, Universal Studios/Islands of Adventure, and Sea World. With all the fun things to do at the Village AND all the attraction tickets, we stayed quite busy. But it was a super fun and fulfilling type of busy. We made some great memories, got lots of pictures, and most importantly, Noah had a blast. He asks me everyday if we can go back to Give Kids the World. And we can, once a year, to spend the day playing and swimming, to remember what a great week we spent there. They have also given us a one-day pass to many different parks/attractions around the country for the next year. Needless to say, we will be doing lots of traveling before they expire, our first trip being to Six Flags in ATL. And I have to mention that this entire experience was made possible by generous donations to not only GKTW, but to Make-A-WIsh. I've really never felt so much gratitude and humility for what has been done for my family...the past year and a half has been a very hard, but amazing journey of faith, hope, and love and most days I walk around just overwhelmed by the love of Christ made evident through His people.
The Saturday after we returned from Noah's wish trip was the "Saddle up for Noah" fundraiser at P&L Farms, hosted by Larry and Pam Berzett and a slew of other volunteers. It was a cold day for April, but it had a great turnout and was a huge success. So many people worked so hard to put the event together and we are forever grateful! My love tank has been filled to overflowing after having so many people love and support us over the past few weeks.
Below are a few pictures from our trip. There are funny stories with a few of them that I will add soon. I also apologize that some of them are sideways! When uploading them the orientation was changed and we haven't figured out what went wrong. So, here they are, hope you can see what a great time we had!!!
Wow, what a journey this has been. Several days ago I was cleaning up a pull-up diaper mess, thinking, there are so many things about being a mom that I just did not sign up for, but I wouldn’t change for the world! Haha...so many of you understand that thought completely. The first time I held Noah I had no idea what I was getting myself into, and I knew nothing about raising a child...but in that moment I DID know that I already had enough love for him that I would take a bullet for him. I never dreamed that he would be fighting an illness that I couldn’t cure with a little tylenol and love. Since last November John and I have been doing our best to live one day at a time, or at least one week at a time. Not thinking to far into the future, and not dwelling on what-if’s of the past has helped to keep us grounded. Several people have mentioned to me that the 6 weeks we stayed in Birmingham really passed quickly it seemed, and it’s true. I was so worried about it, but God provided for our every need and gave us grace and strength to get through each day...and even a little joy each day! There was always something to find joy in, even though we didn’t sleep well, were away from dad a lot, and spent a lot of time trying to find our way around the area! It was not a horrible experience, and God is still good, all the time. I came across a poem yesterday that resonated with me:
What God Hath Promised
God hath not promised skies always blue,
Flower-strewn pathways all our lives through;
God hath not promised sun without rain,
Joy without sorrow, peace without pain.
But God hath promised strength for the day,
Rest for the labor, light for the way,
Grace for the trails, help from above,
Unfailing sympathy, undying love.
-Anne Johnson Flint
Very simple and sweet, this author got it right - life is hard, but God will get us through when we ask for His strength and guidance!
We are especially taking life one day at a time now as we wait for April 19th. All of our futures are hinged on the outcome of the next MRI. We are still praying for and believing for a GOOD scan - one that reveals no more tumor growth, and a stablized tumor, resulting in no more treatment for Noah! Please begin praying now for that good report.
We are preparing for our Make-A-Wish trip to Florida; we will leave April 6th and stay for a week. Noah is very excited about this trip, and I know he is going to have an amazing time! We are so thankful for this opportunity.
Please continue to remember 6 year old Lindsey in your prayers as she is struggling to fight this very aggressive cancer. They are in Maryland right now as she is undergoing more scans and tests. And as a praise, little Joel had a great report from his MRI scan and LP this week! God has healed this precious little guy and we rejoice with his family in that!
I say it all the time but you guys are so awesome to continue to read our blogs and pray for our sweet boy. Knowing that so many people love and care for us is overwhelming, and it’s hard to know exactly what to say (or write) to convey our feelings to you. But know we love you all, and we will keep you informed of how Noah is doing over the next few weeks prior to the MRI. Hope everyone has a great weekend and God bless!
"For this child I prayed; and the Lord hath given me my petition which I asked of Him; therefore also I have lent him to the Lord; as long as he liveth he shall be lent to the Lord." - 1 Samuel 1:27, 28
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day, however, the little soul was sad for on this day he saw... suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied. "Little soul, do not be sad, for the suffering you see unlocks the love in people's hearts." The little soul was confused. "What do you mean?" he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."
The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts, much like the sun and the rain unlock the flowers within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this ...it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer ...to unlock this love...to create this miracle...for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave, let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that Miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave, you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to take care of you on your journey. Those souls will help you create your Miracle; however, they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."
God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel you have suffered enough, just say the word, think the thought, and you will be healed."
Thus, at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys...some regained lost faith...many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place.
The Miracle had happened. God was pleased.
Please take a moment to pray for 6 year old Lindsey. She was finishing up her second round of radiation when Noah started his treatment. Her mother hasn’t posted details yet on their site, but she has had a turn of events and is in the hospital right now. I found the above story on her Caring Bridge page. Lindsey was given 9-12 months to live when she was diagnosed almost one year ago. She is a precious little girl who always had sparkly pink shoes, bracelets all up her arms, a sweet smile, and a stuffed animal in tow every time we saw her. You wouldn’t know by looking at her that she is under attack. She has been fighting a VERY aggressive brain cancer and needs your prayers!
Noah is doing well. He complained of feeling sick yesterday, but I gave him another dose of Zofran and after that he felt fine for the rest of the day. He has 5 more treatments left. He is settled in this new routine now. When we arrived at the apartment in Birmingham Sunday night, he was upset that we weren’t going immediately to “Dr. Fiveash’s office” to get his medicine from “the machine.” He enjoys seeing the radiation and anesthesia staff every morning we are here. It’s strange how something that was at one time new and frightening has become almost a comfort to him now. I know he will miss everyone that cares for him at the radiation center once his treatments are completed.
John is here today and once the clouds pass over we are planning on taking Noah to a nice park in Homewood and maybe meet up with some family for dinner. We are so thankful that Noah is doing so well and can still be an active 3 year old boy. I have to remind myself at least once a day that he has cancer…the only signs of his fight are his scars and hair loss. I think I mentioned in the last post that his MRI will be about 6 weeks after his last treatment. Please begin praying now for a good report!
We have met another radiation patient from Mississippi who has been very kind to us; you can read Mitch’s story on his Caring Bridge page here. Please pray for his healing as well.
I'm reading a book Mr. Mitch gave us called "The Red Sea Rules," by Robert J. Morgan. It has lots of wisdom for a person in a time of trial and pain. This excerpt is an entry from the journal of a South African pastor named Andrew Murray (facing a terrible crisis):
First, He brought me here, it is by His will that I am in this strait place; in that fact I will rest.
Next, He will keep me here in His love, and give me grace to behave as His child.
Then, He will make the trail a blessing, teaching me the lessons he intends me to learn, and working in me the grace He means to bestow.
Last, in His good time He can bring me out again - how and when He knows.
Let me say I am here,
(1) By God's appointment,
(2) In His keeping,
(3) Under His training,
(4) For His time.
It is a comfort for me to remember that there is nothing that I will go through, experience, no emotion I can feel that God does not understand; He will give me enough grace for each day. In the short 29 years that I've lived, I've found that it is when I am beat up and broken, hurting and confused that I feel closest to His heart. I have felt His love like never before in the last 16 months.
Thank you for the cards and gifts for Noah that keep coming! He gets so excited to check the mail, and most days there is something for him to open. May God give you His grace and peace as you let Him use you to bless our family!!
Yesterday we decided to do something fun while Dad was in town, and we were given some tickets to the Barber Vintage Motorsports Museum. We did not think it would be that big of a place, and thought Noah would like to look at some motorcycles. When we arrived we realized, this is a serious place with some serious money invested into it! It was amazing, and was DEFINITELY not for a 3 year old who wants to touch and climb on EVERYTHING. There were about 5 levels filled with all kinds of motorcycles and cars. John was drooling, and Noah was trying to be as patient as he could...we lasted about 10 minutes. From now on I will do some research before we blindly head to a place someone gives us tickets to! You live and you learn...
Just to keep you updated on some of Noah's favorite activities: Lately he has really developed an interest in Star Wars. He has 2 older friends Mikey and Devin that have all the Star Wars guns and swords and movies, etc. and he wants to be just like them. He got a light saber and a Star Wars gun for his birthday, and he now only wants to use "pow-pow" stickers on his sticker chart. (We ran out of SW stickers today so he settled for Spiderman. I had to promise a trip to the store to re-stock our supply!) It is too funny to watch him try to recreate the positions and stances of the characters as they fight each other. And I think I've mentioned before that he often talks about going to "fight the boo-boo." Usually once a day he gets a handfull of markers and crayons, tells me I need my medicine, and proceeds to take me to "Dr. Fiveash's office" (the bedroom). He tells me to lay down, gets his syringe (marker/crayon) and gives me the magic milk so I can take my nap under the big machine. (He is pretty good at making the loud humming sound he hears from the radiation machine every morning.) Then after he has shoved a marker into my chest a few times where a port should be, I am all done! Sometimes he even grabs his yellow stethescope and tells me, "you ok!" It's really cute.
There are a few fundraisers planned for Noah; these are the 2 that I am aware of: Saddle-Up for Noah Family Fun Day will be held on Saturday, April 16th from 10:30am until 5:00pm. This event is hosted by Larry and Pam Berzett at P & L Farm located at 6315 Upper Snake Road, Rogersville, AL. They are encouraging people to "please join us for a Trail Ride (bring your horse!), Mule & Wagon Rides, Bands/Music, Silent Auction, 'Baked Goods' Auction, Volleyball, Horseshoes & of course Food & lots more!!! YOU DO NOT HAVE TO RIDE A HORSE...THERE WILL BE SOMETHING FOR EVERYONE TO ENJOY! DON'T FORGET YOUR LAWN CHAIR!!!"
The second event I am aware of is a benefit motorcycle ride being held on October 15th, and is sponsored by a motorcycle group called the Ghost Warriors from Arab. I don't have much information as of now, but since it is so far in the future I will post more infomation later.
We are so thankful for all of you who are planning and organizing events to help bring in more money for Noah's medical bills. We are praying that after Noah's next MRI, which should be about the first week of May, he won't need any more treatment. If...nevermind...WHEN the radiation is shown to stop the growth of his tumors, he will just continue to have an MRI every 3 months to make sure everything is still stable. I'm trusting for that day when I can tell you that the cancer is not growing and he is stable, requiring no more treatment - for the glory of God!
As always, thank you for your prayers, gifts, encouragement...we are so appreciative of all who are caring for us at this time and we love you! Seeing the love of God through everyone who is loving us is one of the reasons I am still sane!! We couldn't do this without you, and know that you are prayed for and loved in return.
Monday was Noah’s birthday and we celebrated on Saturday with family. It was a Yo Gabba Gabba party, complete with balloons, colored lights that danced with music, some of his favorite foods, his “jump-jump” (an inflatable basketball court), power wheels races in the backyard (which turned into power wheels and lawn mower races), and his birthday gift, a new trampoline. The kids (and some of the adults…) had so much fun I think we’ll do it again this weekend!
Another exciting bit of information: we have Noah’s Make-A-Wish trip planned! We actually just got it rolling today. We will be going to Give Kid’s the World, where we will have access to the Disney Parks, Universal Studios, and Sea World. It will be Noah’s first plane ride, and he is very excited. I have a feeling we will be spending a lot of time in the swimming pool, the splash pad, and the ice cream shop on the GKTW property. Our trip will begin on April 7th, so I’m praying now that Noah will feel at 100% to be able to run, jump, swim, play, and enjoy every fun and amazing thing that will be presented to him.
I’ve written about this before, but after Noah was born I would pray the same type of prayer over him most every night after he went to sleep: Protect my son, grow him to be a strong man, a man of respect and integrity, a man who follows after You, Lord, and will be a righteous man who leads many to Your love and grace. But above all, use Him for Your glory; He is Your child. I could not have anticipated how the sincerity of that prayer would be tested. But above all, use Him for Your glory. I have to be honest, it took me a while after Noah’s diagnosis to begin praying that last part of my prayer again, because I realized that oftentimes when we ask for God’s glory, it isn’t an easy route to find it. I wanted people to see God’s glory and provision through our lives, but not in this way. I’ve never doubted God’s sovereignty or purpose, but I’ve been angry lots of times, at God, for permitting this to happen. Why my son? Would wouldn’t ask this question? I spoke with another mother of a child with cancer, and this is basically what she said about that question: “Why my child? I have seen so many families struggling with this horrible situation that could not deal with it. They did not have Christ as the center. I thanked God that He chose my family, my daughter, and not another family that didn’t know Him and have God to lean on and help them through.” I was so taken aback my her selfless statement that I didn’t know what to say, but just cried. I wasn’t there yet. I’m still not completely there, but I’m getting closer to completely accepting this with open arms. This world is full of heartache and pain, death and destruction, and it’s what I do what my pain that shapes my life and my relationship with God.
This Sunday morning at church I was very upset, just overwhelmed with the thought that I would have to leave in a few hours to drive my son back to Birmingham without my husband. John had just preached a great message about the importance of the Holy Spirit and His activity in our lives. During the invitation I just pleaded with God to heal Noah, and give me strength to finish this part of our journey. I remembered that prayer I’ve prayed so many times, but above all, use Him for Your glory. And I felt the need to just let it go, and release my son to God. I’ve been holding so tight, trying to control what I can - whether it be planning and preparing for emergency or cleaning obsessively, etc. - and I really felt in my soul He was urging me to let go. Man, it’s a hard thing to do. It’s a hard thing fully trust God. But I’m allowing Him to give me strength to do that.
Tuesday before naptime Noah and I were snuggled in the bed; he was looking through his bible, pointing out the stories he knows and likes to tell in his 3 year old vernacular. He stopped all of a sudden and clasped his hands saying, “Dear God, please make my boo-boo better. God thank You for fixing my boo-boo.” And then he went back to looking at his stories. I tried not to let him see my tears…it was so sweet and I thought, I know You heard that Lord…grant his request!!
We are almost done with this week, and we appreciate your continued prayers and support! I still love getting your letters and emails…it’s good to be reminded that you’re still reading and praying. We love and appreciate you all!
“Not that I speak in regard to need, for I have learned in whatever state I am, to be content: I know how to be abased, and I know how to abound. Everywhere and in all things I have learned both to be full and to be hungry, both to abound and to suffer need. I can do all things through Christ who strengthens me” (Philippians 4:11-13).
Birthday Pictures and more...
Friday, 2/25/11 -
It's hard for me to remember for some reason that I need to write blogs more frequently. I guess in my mind I think, this day is just like any other...nothing new to report. I appreciate those gentle reminders that you who read would like an update. Tomorrow is Noah's birthday party and our family will come over tomorrow evening to celebrate. I'm sure many pictures and videos will be made so I will post them asap, along with a few others from this past week. Hope you have a great weekend, and keep praying for Noah!
Thursday, 2/17/11 -
Everything is going well for Noah right now…well, as good as can be considering he has been moved from his home 5 days a week and has to be put to sleep every morning so the medicine can “shoot the boo-boo.” As long as I put that in a Star Wars perspective he is ok with it. He will get his play sword and gun, run around the apartment making light saber and gun noises shouting, “Fight the boo-boo! Get it! Fight!” Every morning of treatment gets a little easier; he is still slightly anxious while walking to the treatment room and he clings to either me or John until he goes to sleep. But there is no screaming or fighting, which means a lot of stress off of Mama. We have a super nice team that takes care of us at the UAB Radiation Oncology center. Everyone we come in contact with always has a smile and is willing to answer any questions we may have. Their love for Noah is evident, just as it is with the oncology clinic at Children’s, and John and I appreciate that so much. It is SO much less stressful to watch your child go through these treatments when the staff is gentle, caring, and loves your child almost as much as you do! Today Noah had an issue with his port; during his playtime yesterday he came to me and said his noodle hurt (he calls the line attached to the needle that accesses his port his “noodle”). It didn’t appear irritated where it was inserted so I didn’t think much about it, and didn’t remember it had happened until this morning when Noah started crying, “it hurts!” while the medicine was being pushed. The needle had slipped out of the port so the medicine was pushed under his skin and was burning. I felt so awful for him, but there was nothing John or I could do. We were afraid we would have to load Noah up and drive to Children’s to have him accessed again, but Miss Anita (his nurse anesthetist) came to the rescue! She worked the needle back into place, not causing him any pain, and we were able to continue with his treatment. I thanked God for her being there in that moment to fix the problem, especially because she has such a gentle way with Noah. It may sound like a small thing, but she took a huge weight off my shoulders this morning. Everything went smoothly after that, and we are now home and about to have lunch.
I was really worried about this part of our journey before we began, but the Lord has so far sustained me (and will continue to do so!) emotionally, financially, logistically, I could go on. He has done it through our friends and family, and people we don’t even know, but they love and pray for Noah everyday. I feel so lucky to be in this position with so much support and love. Cancer happens - to so many people everyday, young and old, and I don’t know how families get through it without a huge support system, and without the Lord. I know I’ve said over and over that God doesn’t promise us sunshine and rainbows, but WHEN those hard times come He WILL provide and pull us through, - no matter what the outcome….and if we just let Him. I am aware that a lot of times these situations end in death, but even then we are promised a new life if we will just know and love the Lord.
When I am tempted to worry about our future, I am reminded that no one is promised even the next breath. I am so thankful that over the past year and 3 months my family has been “forced” to spend lots of time together. Maybe not in the most ideal environments, but we are together nonetheless. I get tons of quality time with Noah, and I am so thankful for that. John doesn’t get quite as much time with Noah as I do, but he does his best to make up for that when he can be present. I feel like our situation is much harder on John because he has to split his time between family, work, and traveling to get to one of those. I’m blessed to have a husband who loves his family first, and knows providing for us means being dedicated to his job (which just happens to be something he really enjoys doing!). He is such a hard worker, and I just want to publicly affirm him for being amazing! I love you John David Crowe!
Please pray specifically for John and what I mentioned above, and for our fellow apartment dwellers next door and especially just below us; the have no peace and quiet until Noah is asleep! :) (Right now he is tap dancing, clapping, and screaming his own praises - radiation hasn’t slowed him down, either.)
Thank you for everything and much love,
Noah was a little scared at the new surroundings and all the new faces as we made our way down the hallway toward the treatment room. Once we were inside, he settled down. He has his port accessed so putting him to sleep was a breeze. He went to sleep and they immediately began the process of positioning him correctly and placing his mask over his face and chest. Noah will never be awake during this part of the process, so he will never know or remember being bolted to a table with a mask over him. Thank God.
Once he was secure, everyone left the room and a very large door, over a foot thick, closed him in. I was able to stand at the operator's desk and watch as they positioned the machine in just the right spot. Four cameras monitored his every move and we could hear him if he made any sounds. Once everything was correctly positioned, they began his first dose of radiation. This part of the treatment only lasted two minutes. Once it was over, Noah was woken up and brought to us in the waiting area. He was very loopy but wasn't crying or unhappy. We waited about ten minutes then he had a vitals test. Everything checked out just fine and we were released. We came home and Jessica made eggs, grits and toast. We sat and watched 'Super why', one of Noah's favorite shows and ate our breakfast.
Jessica has made a chart for Noah to put stickers on marking off each day of his treatment. He has picked out his favorite characters to go on the Poster. Spiderman made it to the first block : ) He also gets a sucker after every treatment. He loves that part!
We want to thank everyone who has helped us in this new chapter of Noah's journey. Many of you have sent encouraging cards and notes to Noah and Jess and I. Many of you have made financial contributions to help in Noah's expenses and we have recently heard of several fundraisers people and some organizations are putting on in Noah's behalf. All of this support has been such a blessing to us. We cannot say thank you enough.
Noah has another treatment tomorrow, then he and Jessica will come home to Athens for Friday and Saturday night, then return to Birmingham on Sunday.
Please continue to pray for Noah's healing and all the other children who suffer with cancer.
Spread the Word
Pray for Noah
Tuesday, 2/8/11 - Jess
Tomorrow morning he will begin his tumor-starving therapy again, with the radiation treatment beginning on Thursday. The radiation is Monday through Friday, but I’m not yet sure of the frequency of the other treatment.
Ok, so I’ve had some texts with questions about the Make-a-Wish visit - sorry I’ve kept everyone is suspense. The visit went well; two volunteers from the North Alabama area came to the house on Sunday afternoon and brought Noah a toy 4-wheeler, so they were instantly his friends. J We are so grateful that they gave almost 2 hours of their Sunday afternoon (Super Bowl Sunday, at that!) to spend with our family. They had Noah color a picture and asked lots of questions to try to find out his interests. He wasn’t as sociable as he usually is, and didn’t give up very much information, possibly because he was really distracted by all his toys in the house, and it was naptime. But we had a good visit, learned a lot about Make-a-Wish and the possibilities of his wish (which are almost limitless). It really is amazing what this organization, through it’s volunteers and donors, has done for so many families. After an hour and a half of trying to coax a wish from Noah, the adults decided on some options for him. Swimming with the dolphins is out because he is too young. His new favorite show is “Yo Gabba Gabba,” so meeting the characters/attending a recording of that show is an option. My personal favorite potential wish is Give Kids the World, which is such a cool place for children with life-threatening illnesses to stay while touring the different theme parks in Orlando. The third option is an amazing tree house/play house area in the back yard. Noah would be super stoked about any of these, so we will soon see which one he will receive. The next step in the wish process is finding a sponsor for Noah, and moving forward with the logistics of the wish. Fortunately, a school in Marmaduke, Arkansas has voiced interest in financing Noah’s wish. My aunt teaches at a school near Marmaduke and word of Noah’s story has spread in her area also. We are praying that everything works out with the sponsor and after his radiation is completed he will get his wish!
Thanks again for your prayers of faith for Noah, please keep them up; we need them now more than ever. Believing with you for a miracle for my sweet boy.
Friday, 2/4/11 - Jess
I've been trying to teach Noah about his wish - what it means, what he could possibly do or have, and how endless the possibilities are. At first it was hard to distinguish the wish from a "witch" (he loves watching the Wizard of Oz and couldn't get past his wish being "mean and green"). I think he is finally understanding the concept and is trying to decide what he would most like to do. He talks a lot about swimming with sharks, but somehow I don't see that one coming to fruition. :) I will post more after our meeting with the Make-A-Wish volunteer on Sunday. Thanks so much for still reading and praying!!! Have a great weekend!
Thursday, 2/3/11 - Jess
We drove back home to Athens late last night, and will be driving back to Birmingham for a simulation appointment on Friday morning where they will do a mapping scan and make Noah's mask. His treatment won't begin until about 10-14 days later.
Because of Noah's circumstance the Make-A-Wish Foundation has been working quickly to grant him a wish. They are coming to our home this Sunday afternoon to talk to him about his wish, so I hope he is able to communicate to them what he most would like to have or do.
I will post more after our appointment tomorrow...happy weekend to everyone! Thanks for your prayers and support.
Tuesday, February 1st, 2011
We received so many offers from some amazing people of places to stay during this new treatment. Thanks to all of you for opening your heart to us.
Noah had another MRI this morning and a spinal tap. The Doctors are looking at his spine and spinal fluids. Our hope is that the cancer attacking Noah is only in one spot. If it is spreading, the spinal tap will reveal it and the MRI will show where.
Currently we are in limbo. The scan came back with a few questionable spots on his spine. They are comparing todays image with Noah's past images and also passing them on to some colleagues for their input. The spinal tap usually takes 24 - 48 hours to get an answer. So we have a long night and day of waiting. We had hoped for a routine scan and an "all clear" report. We still hope to hear the all clear.
Our appointment with the radiation oncologist is tomorrow at 3:00PM. He will explain the process and answer all of our questions. After this initial meeting, they will schedule us for a "practice run" where they will put Noah to sleep and fit him for his mask. From what we have heard from other patients, it is a hard mesh cast that goes from the top of his head to his chest. Noah will be put to sleep everyday and the mask will hold him perfectly still during the treatment. If anything is found in his spine, he will be treated in both head and back with radiation.
On a lighter note, Jessica discovered that the D.I.Y. network, Food network and HGTV network are all beside each other on the cable down here. I heard her say with delight "Oooo" at the discovery. Noah has his toys all over the floor and is singing every song he knows. As abnormal as this chapter in our life is, some things don't change : ) I saw a sign in the mall today (after we got off the carousel) that said "happiness isn't a destination, it is a decision" Not sure if I have settled into agreement with that statement, but I do know that even in the worst of situations, there are still reasons to smile, moments to laugh, and joy to be had.
Spread the word, Pray for Noah
Sunday, January 30th, 2011
I was very reluctant to stay in Birmingham through the duration of Noah's treatment, especially since the actual treatment shouldn't take very long. I was ready to drive back and forth every day, just to be able to crash in my own home every evening. But John has convinced me that the most "stressless" thing would be for Noah and I stay in the ham. John will be able to come down on Tuesday evening and stay through Thursday morning, which will be great.
I spoke with a sweet friend who unfortunately has experience with a child undergoing radiation, and she has graciously re-lived those awful memories in helping me to prepare for what will happen over the next 6 weeks. It seems terrifying, and unimaginable, but then again, so did the last year and 2 months, and we survived it. So, each day I will tell myself (as we count down every treatment with a super-fun sticker chart!) that we take one day at a time...because He will give us strength for each day. And we will just do this, and blast every bit of that cancer from Noah's amazing little brain. You know, since Noah got sick I've known that this would be hard, and I've known that statistics weren't on his side. But if you've ever looked into his eyes you will see a pure, honest, fighter with curiousness and love just oozing out of every pore on his body. He is honestly one of the most stubborn kids I've ever met and DOES NOT give up easily. So we can do this, with God's strength and favor and with your prayers and petitions...we can do this.
I've seen some posts and comments about it not being fair, and about people being sorry for us. And I've thrown enough pity parties for us all over the past 5 days, but I'm done with that now. (Someone remind me of that statement in week 3 when I'm severly tired of it all!!) Wednesday I was walking through the galleria mall trying to get to the carousel without crying. I looked at moms, their kids, families, eldery couples...all the while thinking, it's not fair...why can't we just be normal...why does MY kid have to have cancer? I won't know the answer to those questions, but I do know that no one has a "normal" existence (and what defines normal??). Everyone has their something that causes them pain and difficulty in life. That mother I saw sitting with her family, feeding her new baby...the elderly couple that walked hand in hand...the teenagers waiting to ride the carousel...the businessman in a suit rushing through lunch to his next appointment...they all have their something, and every something is just as real and painful as the next person's. So I appreciate all of you with your own somethings helping and praying for my family in ours. We may come out on the other side looking and feeling like we've been beaten with a baseball bat, but we will come out on the other side, nonetheless.
I'm posting a video below that I think is worthy of watching. Thank you for seeing our story and following our struggles, and helping us through them. Noah will have another MRI along with a lumbar puncture on Tuesday - please pray and believe with us for no other growths or free floating cancer cells. We will update those results as soon as we can Tuesday.
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand" (Isaiah 41:10).
Thursday, January 27th, 2011
Jessica woke up feeling really bad and went to the family doctor this morning to see what was going on. Turns out she has strep. Please pray for her, (and Noah and I as well)
The gears are turning down in Birmingham as Noah's social worker is trying to get us temporary housing. So many families have similar situations at Children's Hospital and temporary housing is very limited. I hope he can find us a good spot to land over the next six weeks. We really appreciate his hard work. Pray we get a room.
We have not lost hope, we have not lost faith. We don't understand why, but then - does anybody? What we do know is that we have today. That means - ice cream for lunch, cake for dinner, and whatever we can do to make us laugh.
spread the word - pray for Noah
Wednesday, January 26th, 2011
He went in so brave. Jessica had a good talk with him about what was going to happen. He went into the “big tube” room and didn’t even whimper. When the process was over he began waking up to the sounds of the next patient fighting the nurses and screaming. It was pretty scary for him and he wasn’t very happy by the time we got to him. It is amazing what a mothers hug and a little sprite through a straw can do!.
We were escorted by the radiology nurse to the Oncology clinic and placed in a room. We waited around two hours before Noah’s doctor came in. During that wait we had good conversations with Noah’s new social worker Wes, and our favorite Chaplain, Paul.
When Dr. Reddy came into the room, we were not ready for what she had to say. The MRI showed that the tumor that had been removed twice has now grown back again. It is 1 ½ cm in size. That is bigger than the last time it was discovered. The treatment Noah has been on since December has not worked. Dr. Reddy does not want to do another surgery at this time. Instead since Noah is so close to being three years old, she wants to try radiation therapy. She thinks that right now it’s our best shot.
Noah will have 30 treatments, One every day for six weeks excluding weekends. All of these treatments will happen in Birmingham at the Children’s Hospital radiology department. Tuesday Febuary 2nd, he has another MRI. This will be longer than the one he had today. He will get the complete head and spine scanned as well as having a spinal tap (LP). The spinal tap is to look for “free floating” cancer cells. It is a precautionary procedure. We want to make sure that the cancer is only in the brain. A spinal tap will let us know if it is anywhere else. After the MRI we will meet with the radiation oncologist. Noah must be fitted for a mask he must wear during the treatments. He will be put to sleep for every one and the mask will keep his head perfectly still in the same position every time so that the area targeted will be treated. The treatments don’t last very long. They estimate about ten minutes for each treatment.
Our social worker is working on some temporary housing for us. Jessica and Noah will stay in Birmingham and I will go back and forth to Athens for work. It doesn’t sound very fun but it’s what we have to do. We are fortunate to have great caregivers so close.
We left the hospital today in a daze. We headed down the road to one of Noah’s favorite places, the Galleria mall. It has a carousel. We rode the carousel and Noah had a blast. He named his horse “Yee Ha!” We got off and sat down to eat. None of us were hungry, but we needed something in our stomach. As we sat there we saw Christy Steltenpohl, and she walked over to our table. Christy is the mother of Lindsey, a six-year-old brain cancer patient at Children’s who is presently going through radiation. ( www.caringbridge.org/visit/lindseysteltenpohl )The exchange between the two moms was tough to watch. Two moms with kids who are fighting cancer, facing tough odds, who cant think of anything to say to each other. The only thing they could say to each other was “This really sucks!” – well said.
We don’t know what the days ahead have in store. We know it is going to be hard. We also know we are not alone. Thank you, reader, for caring about and loving Noah enough to keep up with this blog. To be honest, I hate this blog – every time I have looked at it in the last few months, it reminds me Noah has cancer. In the last two months, Noah has grown a full head of hair and been home more than any time in the last twelve months. If it weren’t for the two outpatient treatments a month, I would say he (and us) have got to be “normal” for a short period. It has been nice. Just the other day someone saw him running and yelling and said “You wouldn’t know anything is wrong with him” That is now over. Noah will once again loose his hair; he will once again get nauseated and be away from home and all the people that love him. Jessica and I will once again be separated and stretched.
I said I hate the blog, but I am also thankful for it. I am thankful for the encouragement we have received from you and all the support. I am thankful so many people know Noah’s story and so thankful so many people, like you, pray for him. Please continue. Please don’t stop. Ask everyone you know to pray for our little boy.
Monday, January 24, 2011 - Jess
Wednesday, January 19, 2011 - Jess
As always, we are very appreciative of all the prayers and help we've received, and we thank you also for continuing to follow Noah's progress (as much as you can with my infrequent blog posts!) and most of all for praying for his healing. We have pictures I will post tonight, from Christmas and with more hair. :)
There are a few families we are keeping constantly in our prayers and hearts; please join us in praying for little Lindsey who has been given several months at most and needs a complete miraculous healing from the Lord, for little Joel who has an MRI the same day as Noah and has been fighting really hard for the past year, for Garon and his wife Katye as he is undergoing testing for seizures and waiting for his next brain surgery, and for sweet Emily who recently said goodbye to her young husband who for several years fought a rare cancer called Rhabdomyosarcoma.
A friend sent us this link to a great song of encouragement that I'd like to share; it really describes the attitude of my heart the past year - through the pain and trials of life we never leave God's hands as long as we are seeking His direction. John often says that He never promises us sunshine and rainbows, in fact he promises that we WILL have trouble in this life, but hallelujah He overcomes this world. Keep the faith even when it hurts. We love you.
Tuesday, December 21, 2010 - Jess
Our family has had a very good holiday season so far and we expect that to continue. We had so much to be grateful for this Thanksgiving; the one year anniversary of discovering Noah’s tumor was November 21. I am just ecstatic that one year later he is doing so well. He is still developmentally on track and loves going to his nursery class at church to play with his buddies there. He runs pretty fast, is talking a mile a minute (some words are still intelligible but that will develop with time), and he can play the heck out of a drum set. This Christmas season has been great since he understands more about Santa and how that situation works. Last year he didn’t want to even be near Santa. (Bless the sweet “Santa” who paid us a visit at our home last year shortly before Christmas - Noah ran crying from him!) This year he mustered enough courage to sit with me while sitting next to Santa, and told him he wanted a “big truck to ride on” for Christmas. I do believe Santa will be able to fulfill that one request.
John and I are proud to announce we just celebrated our five year wedding anniversary. I jokingly tell people it feels like ten, in some ways good and in some ways bad. We have had to deal with some difficult situations that could have threatened our marriage if we hadn’t taken measures to protect it. Many of you know the strains that life in general can put on a relationship, and some of you know what happens when you throw a sick child into the mix with lots of stress and traveling and separation from one another. We enrolled in an 8 week course called Dynamic Marriage, which helped us to place a much needed focus back on each other while caring for Noah. It was very effective for us and we recommend it to any couple that is, well, married!
Lastly, I have to write about an experience I had while Christmas shopping last week. I’m sure a lot of you have noticed that many stores are accepting donations for St. Jude’s Hospital, among other organizations. I was in a particular store that was supporting St. Jude’s, and a customer in the check-out line in front of me was asked if she would like to donate. Her response, with a laugh, “No, Honey. I’m not at St. Jude’s.” She continued to talk about how all her purchases were for her, and it’s “all about me.” I felt like she had slapped me in the face. I was angered, red-faced, and wanted to tell her what horrible things I thought about her. I got so discouraged, thinking, five dollars, lady…that’s all it takes. Even one dollar. You just spent two-hundred and you can’t give five to a child that is dying. I left the store in tears because I realized how many selfish, uncompassionate, self-serving people are in this world. And then I remembered you, reader. I remembered how many letters of encouragement, donations, gifts for Noah, offers to clean my home, gift cards for dinner, acts of kindness, blood donations (I could go on) that were given to my family in honor of my little guy, and I praised God for you. I then decided that for every person that feels no need to help support a sick child and his/her family, there are at least 200 more that make the decision to give. That has to be the ratio, based on the love and generosity my family has received. After much thought about that one woman, I prayed for her, asked forgiveness for thinking the horrible thoughts I did about her, and moved on.
So thank you all, again, for helping my family through a very difficult time. I pray God will return the blessing to you times one hundred. I pray you have the most amazing Christmas season, and that you know joy, peace, and comfort in the midst of whatever it is that is trying to steal all of the above. Even though the world seems to be dying at times, I think about people like you - who give - and I see that His Spirit is still alive. Merry Christmas and much love to you all.
Wednesday November 17th
His Doctor is confident that he will not become neutropenic. He will only have his blood checked once next week, and that is a blessing. His treatments will be every two weeks. We should be on our way home as soon as they are in his system. This new way of treatment is a relief to Jessica and I and especially Noah. We have grown accustomed to being home in the last few weeks. I am glad that isn’t going to change (hopefully).
In four days it will mark the one-year anniversary of when we first heard the horrible news about Noah’s condition. It seems like a lifetime ago and it seems like yesterday all in the same thought. So much has happened in his life in the last year. He has been such a champ through it all. I can still remember the day in 1997 when God put it in my heart that I would have a son and that his name should be Noah. The moment Jessica told me she was pregnant I knew it would be a boy. I know that his life, like all of ours, has purpose. He will be a righteous man in an unrighteous generation – that is why I feel like we were to name him Noah. To some I bet that sounds weird or flakey, but it is my reality. I have questioned so much in the last 12 months. I have given into doubt at times and have been angry at God as well. But through it all there has been so much evidence that Gods hand is on his life. I can’t explain it all, and don’t want to try, but I know that Noah’s life is in God’s hands and so far He has decided to keep him here. I hope he decides to keep him here for a long, long time.
Please keep him in your prayers. Please specifically pray that this treatment would finish the battle with cancer and that Noah would suffer no long-term effects for the rest of His life.
We take the blessings we have in this life for granted until we are threatened with the possibility of loosing them. Hug your children and kiss them goodnight. Make time to spend with them. Take advantage of the time you have now and don’t wait. You aren’t promised and have no guarantee that your loved one will be here tomorrow. Carpe Diem!
Monday, November 15 2010
Over the next few days please remember Noah in your prayers as John and I begin to explain that he will start getting his "medicine" again, begin his shots again, etc. Pray that his body will not have any negative reaction to the new drugs, that the side effects will be minimal if at all, and that they will WORK. I'm sure you can imagine my biggest fear...but I'm continuing to push that fear aside and believe that through this last surgery and the new treatment Noah will be healed. I've had several people ask me, REALLY ask me, in the past few days - "how are you Jess?" And to be very honest, I am tired. Before Noah's tumor recurrance I had complete confidence that he would have finished treatment before Christmas and wouldn't need any more. I was praying, "Lord just get me through December." Now I've had to change my prayer to, "just get me through this Wednesday." I'm trying not to think about another year of treatment, but just getting from day to day. So if you want to pray for me also, please pray for strength, and peace, and rest. Not just sleep, but emotional rest and freedom from stress. I haven't done a very good job at managing that lately. I didn't mean to get so personal, just thought I would give a quick Noah update. I will post again after Wednesday's treatment, either Wednesday night or Thursday morning. Thank you for continuing to follow us and to God be the glory!
* John preached this past Sunday at our church; if you would like to watch that message you can do so here. I'm very proud to be his wife and I am thankful for the work God does in his life. :)
Thursday, November 4, 2010 -
I believe I have mentioned before about Li Fraumeni Syndrome, which some of my family members have and Noah and I were assumed to have based on family history. A blood test confirmed that Noah and I do have the syndrome; my sister tested positive for the defect about 2 months ago. With Li Fraumeni Syndrome there is a defect on a tumor suppressor gene (p53) that will allow tumor cells to grow uncontrollably, whereas someone without this defect is able to recognize the cell growth pattern and destroy most rapidly growing cells. Because of the defect, a person with Li Fraumeni Syndrome has a much greater chance of developing a tumor/cancer than a person without the defect. Noah, my sister, and I will need to have preventative scans and tests done for the rest of our lives. Women with LFS are almost guaranteed to develop breast cancer before the age of 60. Some even undergo preventative mastectomies to greatly reduce their risk. There are several different cancers that are associated with LFS: brain, breast, and soft tissue sarcomas to name a few. Children with choroid plexus carcinoma are tested for LFS regardless of family history because of the correlation between the two. Noah has brain cancer because of this defect, and for the rest of his life he will be susceptible to forming other cancers, and that is a lot to think about along with my own susceptibility. We have many lifestyle changes to make as cancer can occur from environmental factors as well. We ask for your prayers as we make positive changes and remain confident in God’s will and promises.
Needless to say, when someone asks “how did it go?” regarding our visits yesterday, it’s hard to answer that question with a simple, “good” or “bad.” We are completely blessed that Noah is doing so well right now, but this battle is far from over. I wish I could write to you that Noah is in “remission” and we are stopping treatment. I wish I could guarantee that he will be free from cancer for the rest of his life – but I can’t. I am writing this only to inform and not to foster sympathy or for you to feel sorry for us…but so you know how to pray. God is so good, and this battle is not only ours but His…and in that we find comfort. The Lord can heal Noah through a number of means, but whether that is in this life or eternity we cannot say for sure. We are not promised tomorrow and we don’t know what a day will bring forth (for ANYONE), so we live each day to the fullest and spend as much time together as we can. Over the past 11 months John and I have become very intentional in how we spend our free time and how we view the time we spend together.
I have more to say, but am going to be late for an appointment if I keep writing. Thank you for your continued prayers and encouragement, and I will post more soon, especially as we make decisions regarding Noah’s treatment.
"But may the God of all grace, who has called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever. Amen." 1 Peter 5:10-11
Tuesday, November 2 2010
Wednesday October 27, 2010
We have had a very, very good recovery. Noah has been full blast since we have been home. Our biggest challenge was to try to limit how active he has been. He is 100 % little boy. He loves to run & jump, climb on furniture, jump off furniture, run up to furniture, climb up it run on top of it then jump off it and roll in the floor – then repeat. All Day, all night. In the back yard – he swings, slides, plays with the dog, plays in the dirt, etc. You get the point.
At times I forget that he has just come through brain surgery. I have to remind myself of how careful he should be. When I see him acting “normal” it is hard to tell he has had anything happen.
We have an appointment with his oncologist next Wednesday at 9:00 AM. We will be discussing further treatment. We ask for your prayers as we approach this decision. There are other treatment options we have not tried. Radiation is one. There are also experimental drugs that could be a possibility. We really don’t want to see Noah go through anything else. We want it all to be over. Please pray that we will have wisdom and discernment.
We have not yet heard about the pathology report. Dr. Wellons was confident that the growth he removed was the same thing as before. He is also confident that he removed all the new growth and the tissue surrounding it. That is great news! It is what we can’t see though, that concerns us. These cells, if left unchecked, will multiply and again grow into something that threatens Noah’s life. The best treatment is total resection. Let’s all pray that that is the case.
Thank you for all the prayers and messages of encouragement. We are so blessed as a family to be supported by so many. Noah received a package in the mail yesterday from a couple we have never met. Inside were several toys. One of these toys was a small stuffed puppy. He quickly named it Charlie Brown (his new favorite cartoon). He tried to take it in the bath with him – we had to intervene. He went to sleep with Charlie brown last night. I know this seems like a small thing, but as a father to see Noah comforted by an act of kindness from a stranger is somewhat overwhelming. I am constantly reminded of how much he is loved by things like this. The words “thank you” don’t seem to be enough – so until I can find better words – Thank you!!!
We are about to be dismissed!
We are sitting in the room packed and ready to go. We are just waiting on the discharge papers and we are out of here! Noah is ready to go. He has already been roaming the halls and climbing on the furniture.
As soon as we get home - we will party !!
Thanks to all who have checked this blog to keep up with Noah. Continue to keep him in your prayers as in the coming weeks we decide what kind on treatment if any he will get. God Bless!!
Thursday October 14th (revised)
Noah has been talking up a storm, eating popsicles and playing with the Ipad. All of his blood work looks good. If he continues to do this well, we may be coming home tomorrow night! It is amazing how well he is doing. His face isn't swollen as bad as last night so he can see. He hasn't complained very much about pain, only about the I.V. in his foot. He has been a little sick to his stomach, but that is about as bad as it has gotten.
Jessica and I are doing well. We feel a tremendous weight lifted off our shoulders. We really slept well last night and are both looking forward to going home. We thank God for his grace, and for bringing Noah this far.
God dosent always say yes to our prayers. He often allows us to walk in valleys where we are confused and unsure, grasping for hope. He allows us to go through painful situations, experience loss and disappointment. It is easy to question your faith in these times. It's easy to give into anger and doubt. It is easy to walk away from God and turn your back on Him when you are devastated by tragedy. What is not easy to do is to let go and just trust Him. When we make our requests and say our amens, thats when we must leave it in His hands and believe that He knows best. I have made many sighs these last five days. Almost every one has been reminding myself that Noah is in God's hands and not mine. Sometimes His decision are not at all what we want, but He has always been faithful to work out all things for good.
For some reason God has allowed Noah to go through these things. For some reason He has allowed pain, disappointment and sorrow. We are not alone in this. From the beginning of mankind, pain and hardship has been a large part of life. Some people we know have never experienced pain like what we have experienced, and others have had it much, much worse. Through it all, in every circumstance, Jesus words have been true. "In this world you will have trouble, but take heart, for I have overcome the world"
When we lay our pain and worry at the feet of Jesus, He allows us to experience victory. That victory is either here or on the other side of eternity. Either way - it's still victory!
I hope to do the next blog from my living room : ) JD
Surgery is finished!
God is good! We are so thankful for every prayer and message of encouragement from so many of our friends, family and those of you we have never met. Thank you so much for loving our son.
Surgery update ..
Surgery begins in about 30 minutes ...
Please pray for Noah's safety. There is a risk of stroke and other more serious complications. Please pray for the clarity of his physicians and the attendants. Pray for calm hands and quick minds. Pray that this is the end of Noah's life with cancer. The best and only known way to cure this type of cancer is total resection. Today could be the best of days for Noah, The end of a long and hard chapter in all our lives.
Tuesday morning, October 12th
One of the risks involved in the surgery tomorrow is that the area of the first tumor resection is now a fluid filled hole. Once the fluid is removed, the brain may fall in on itself, and the surgeons will have to dig to get to the new growth. This MRI will give them accurate information on where they should go, instead of them just having to look for it .
Noah's surgery will begin at 1:00PM. We have to be at the hospital at 10:30 AM for preparation. He will not be able to eat breakfast or lunch. The Surgery is estimated to last five hours, after that he will stay in the pediatric intensive care unit. We do not know how long he will have to stay in the PICU but we hope it will not be for long. We are not allowed to stay with him over night and during the day we have to leave every two hours. This is one of the hardest things for us to do.
After he wakes up from the MRI today he will be dismissed. We are so thankful to Jarrod and Marci Harrison and the Hanna Grace foundation for putting us up in the hotel. If you do not know their story, it is worth your time to read it. They are amazing people. www.hannahsgiftsofhope.org
I would also like to thank our family at Friendship. Your generosity gave us a great weekend to enjoy being with each other and it relieved a lot of stress.
Tomorrow Noah will need your prayers.
Thursday night, October 7th
Noah had a full day of fun. We took him to his Grandmothers house in Florence and he played with his cousins Evie and Aaron all afternoon. My mom said he played well with everyone and it was a good time. Jessica and I have planned a quick get away trip for us. We will be leaving early Friday morning headed to Atlanta. We want Noah to have as much fun as possible in the short time we will be there. Six Flags has a special Thomas the Train section I think he will enjoy, and I know he will love the aquarium. I hope that he has the time of his life.
Next week will be tough. On Monday we meet with his neuro surgeon, Tuesday we meet with the anesthesiologist and have another MRI. Wednesday he will have surgery. As of right now, we don't know what time the surgery will be.
For the next three days we are going to try not to think about it. A few weeks ago, our pastor preached a sermon in a series called "one month to live". In the message he showed a clip from the movie "Dead poets society" where Robin Williams whispers into the ears of his students "Carpe Diem" - Seize the Day! I can think of no better time than now to Seize the Day. So for the next three days I may not answer my phone, check my email or update this blog. I plan on disconnecting from everything except the laughter and giggles of a 2 year old boy who holds my heart strings. We may have as much fun in the next 72 hours as the average person does in a year. Why not - we might as well while we can. : )
Thanks for the prayers and the kind words. For those of you who know how to grieve with those who are hurting.. thanks for what you have said .. or rather what you have not said.
It may seem awkward to tell someone that you cant think of anything to say when they are hurting. In that moment give in to the awkwardness and just say the most important things - "I am sorry for your hurt" Most of the time, that is enough.
I imagine thats why Jesus wept when he arrived at the tomb of Lazarus. He saw his friends grieving and hurting. He was hurting too. Instead of telling them "everything will be alright", He chose to weep with them. He understood that sometimes the best things to say when someone is hurting are usually things not spoken. There is a time to grieve with those who are hurting, a time to encourage those who are discouraged and a time to celebrate with those who have something to celebrate.
I spoke with a man last night who has been through some tragedy in his own life with his children and he said to me "you can usually tell when someone has gone through something like this, they are the ones who only say 'I am sorry you are hurting"
We know Noah is in God's hands. We know his story isn't over. We know that God can and will work good out of every situation.
Now its time for me to sleep - for tomorrow we party!
Wednesday, October 6th - News we didn't expect
In the meantime John, Noah, and I are quickly planning a last-minute mini vacation to spend some quality time together before next week. We are unsure how long we will need to stay at the hospital following surgery. I'm praying that one night will be sufficient, but preparing for several nights. Of course this news is devastating to our family, but we also knew there was a possibility this could happen. We will continue to stand in faith, pray, and ask everyone to pray with us for Noah's healing and most importantly God's will. This is just another bump in the road and we will get through it, hopefully revealing even more of God's glory. There will be a time of prayer and laying on of hands at our church (www.friendshipumc.org) tonight during the 6:15pm believers service. We believe in the passage "Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing psalms. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much. Elijah was a man with a nature like ours, and he prayed earnestly that it would not rain; and it did not rain on the land for three years and six months. And he prayed again, and the heaven gave rain, and the earth produced its fruit" (James 5:15-18). Please join us in prayer wherever you are.
We will keep updating as we have more news, especially on Monday evening once we have a surgery time and more information about the procedure. Thank you for continuing to support us and lift up our little boy.
James 1:2-8 - My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. For let not that man suppose that he will receive anything from the Lord; he is a double-minded man, unstable in all his ways.2 Corinthians 1:20 - For all the promises of God in Him are Yes, and in Him Amen, to the glory of God through us.
Thursday, September 9th
I haven't written in quite a while because life has been pretty normal and quite boring until his treatments began again. (Boring is good, in my opinion - I don't particularly enjoy these "exciting" trips back and forth to the hospital in Birmingham.) There is a gap between the end of June and the beginning of August where I didn't blog at all. During that time we went to Disney world (John calls it a TRIP, not a vacation!), we spent time visiting with family and friends, had some play time with other kids, got a new puppy (who already weighs 20 pounds), grieved with my dad's family over the loss of a loved one, tried to find just the right color green to paint my dining room. . . and we didn't think about cancer very much. There were no shots or sickness or mad rushes to the hospital. We took our time and made it quality. It was good, and in a few more months we will have that back!
A few developmental updates on Noah: We have had some concerns since Noah's surgery that he would not be able to speak clearly or have complete mobility of his right side (mostly in his leg), and we were concerned about his vision. Since November he has had several physical/occupational therapy visits and there is nothing wrong with the movement of his arms and legs. He has learned lots of new words and has begun making sentences, but he will still need some speech therapy. His neurosurgeon assured us that he will catch up to his peers by age 5 if not before. We shared with his neurosurgeon that when Noah "reads" a book or looks closely at anything he turns his head so his left eye can do most of the work. Dr. said whatever damage is there will be permanent. (We have yet to take him to an ophthalmologist.) We are so thankful that Noah is developmentally on track for the most part.
We have been so blessed by many people from all over the country who have supported us through this season of our lives. I haven't been able to recognize everyone and thank them publicly for their gifts and support, but I would like to share with you about "The Naked Gospel Project." This project was a competition for musicians to enter an original song that best represents the premise of Andrew Farley's book "The Naked Gospel." Terry McNeal and his band entered their song "Transparent" (terrymcneal.com) and along with a lot of help from Terry's wife Sally and lots of determined voters, they won the competition and $5000. What's amazing and selfless of this group is they are donating the money to help us pay for Noah's medical bills. Here is a letter that Terry wrote to the author of the book and it is posted at www.thenakedgospelproject.com:
I am so thankful for you and The Naked Gospel Project for sponsoring this contest. Through your efforts, many people will surely be blessed. This has been an amazing journey of hope and faith for those who voted for “Transparent.” What started out as simply an opportunity to promote my music and ministry has ended up blessing a precious little boy and his godly parents, thanks to you and The Naked Gospel Project.
Several months ago, my guitar player Scott Owen was searching the web for promotion opportunities for the Terry McNeal Band when he came upon your contest. We talked about it, prayed about it, and read through the contest rules to make sure we fit the criteria. I watched your videos and decided on the one tune that would best fit. How much more “naked” can the truth be when we become “transparent” and let God's truth and love shine through us?A few weeks went by and the trials of little Noah Crowe were becoming more and more serious. He was diagnosed with a very rare form of aggressive brain cancer. John David and Jessica Crowe, parents of Noah, are dear friends of ours and true servants of the Lord.I was thinking about what we might do with the money if indeed we won the contest. Almost immediately, the Lord impressed on my heart that it needed to go to the Crowe family. Noah's medical bills were starting to become astronomical. I mentioned the idea to my wife and she said the Lord had told her the same thing! I immediately called Scott and yes, the Lord had told him the same thing! So that's how the concept was born. The Lord told all three of us simultaneously!Sally, my wife, started a FaceBook campaign and got literally hundreds and hundreds of people to join and participate. These dear people voted for “Transparent” and prayed for little Noah. Your contest facilitated literally thousands of prayers going up to the Father for this little boy!
Noah is still battling this awful disease. I believe he is going for his eighth chemo treatment next week. His parents have kept an inspirational blog going about his journey at this link:www.PrayForNoah.com . Please go to it and read about this precious little boy.
Again, Andrew, God bless you and your ministry.
We are very grateful for amazing family, friends, and community, and we will do our best to continue to pay forward the kindness we have received. Please pray for Noah to be free from sickness during this treatment and to be free from infection and fever in the coming weeks.
No place like Home!
Monday August 23rd
We are glad to be home - Jessica more than anyone. Noah at least has had a bed for the last week. Jessica has slept on a fold out chair. She is a very tough woman - the toughest I know of any way. She will enjoy her own mattress and pillow for at least a few days. Noah is scheduled to have Chemo # 8 in nine days. It's not a long break, but at least we get one. Noah has ran from room to room all night. The first thing he did when we got home was run to his room and throw every one of his toys on the floor. Typical boy! He beat his drums, played mom's guitar and sang his own made up songs for us, jumped on all the furniture and got into everything he isn't supposed to. I think he is glad to be here. Currently he is laying on my pillow in my bed and we are in a debate about where he is going to sleep. I am bigger than he is which renders his argument invalid. As soon as I finish typing this I will enter the ring and wrestle this little boy into his room and his own bed which is so much better than doing it in a hospital room trying to get him into a hospital crib. I never thought I would be glad about having this fight, but tonight I am thrilled to get the opportunity.
This last week has been very hard. Thanks for all the prayers and support. We know that God has surrounded us with amazing friends - some of whom we have never met.
I want to share a quick story about an act of kindness shown to me I hope I never forget. On the way to Birmingham Wednesday night, my goal was to make it to Chick-fil-a before they closed at 9:00 p.m. I led worship at Friendship that night and was on the road by 7:45. I did not make it in time. I pulled into the parking lot at 9:06 p.m. The parking lot lights were off and the dinning area had chairs on top of tables. As I drove though the lot I saw people cleaning up and pulled into a parking space. I am a pretty stubborn person - many of you know that - I was determined to get some chicken.
Noah will not eat much hospital food. His favorite food is Chicken nuggets made by - guess who? I walked up to the window and looked in just at the right time to see a manager walk by. I banged on the glass and got his attention. I waved him over to the locked door. He opened up and asked if he could help me. I explained my problem. I have a sick boy who isn't eating well and if i could just get him some chicken it would make things better - if for just a moment. I told him I knew they were closed and I would be glad to pay whatever I had to to get it. He told me to wait at the door and walked away. He came back with a small bag. There were no nuggets left, no strips and no sandwiches at all, but he handed me a small bag with one hot fillet - just for Noah. He didn't charge me but just smiled and told me he hoped Noah was better soon.
Twenty minutes later I watched my son eat that chicken breast with a big smile on his face. It was one big nugget! To see him eat anything on his own gives me great pleasure. I know that manager didn't have to open the door or even talk to me. He certainly didn't have to give me anything. It may seem like a small thing to most people - but to me it was an amazing act of kindness I will not forget. You never know what your act of kindness can do for someone else. It may seem like something small to you, but for someone else it could mean the world.
So If you ever find yourself at the Chick-fil-A in Fultondale Alabama at the Walkers Chapel road exit, tell the manager you wish more people in the world were like him - I certainly do.
Please keep praying for Noah. Pray for healing and strength. Pray for a cure
Thursday August 18th
Chemo is hard. It is hard on his body and his emotions but he is handling it well. He was telling Jessica last night how he wanted to go home. He was telling her all the things he wanted to see - his tractor, his puppy, his room and his toys. She told him he would be able to see them when we get to go home. At that point he looked at her and said, “all done” which is his way of saying, “lets go home!”
Please pray for his body to bounce back and be able to come home soon. Thank you for your continued encouragement and prayers.
Wednesday August 10th
Normally, a two year old would fight and cry and be terrified of needles. ( no wait, that sounds like me) but Noah patiently sat there and watched Jessica inject the needle and slowly push the medicine in. He didn't even flinch. Not even a whimper.
I hate the fact that he has gotten used to being pricked and poked every day. I hate the fact that he understands what it means to have blood work done. I hate the fact that this is the normal in his life.
But I love the fact that he is one of the toughest kids I have ever met. I love the fact that God has given him courage and a tolerance for pain beyond what I understand. I love the fact that he is a fighter.
Below is a video I took the day we started back chemo treatments. Noah has a deppo port in his chest. It allows the hospital staff to give him whatever he needs without putting an IV in his arm or leg. Blood is drawn from the port, He gets antibiotics and chemo through the port. The needle to access it is 3/4 of an inch long.
If I were having a needle that long shoved into my chest I would sweat blood. (I hate needles) But Noah just watches it go in without even flinching. He is such an inspiration to me. Watch this video and see what I mean.
My request for prayer tonight is that God would grant Noah even more courage and strength, that in the coming months God would use this horrible situation for something good - in his life and others as well.
Jessica and I have met and talked to so many people who know about and pray for Noah. It humbles me every time I am asked by a stranger "are you Noah's dad?" To know that so many people who have never even met Noah kneel before the Father on his behalf is completely overwhelming. Thank you - and please don't stop.
Wednesday August 4th
Also, please pray for an amazing family from the Dothan area, the Harrisons. Their sweet little girl passed into the arms of Jesus on Sunday morning. She had been battling brain cancer for about 2 ½ years. Her parents Jarrod and Marci reached out to me and John in our pain with advice, understanding, much love, and the best homemade red velvet cake I’ve ever had. J They’ve been a blessing to us, and I ask that you pray for the Lord to give them what they need at this time. You can read their story at www.caringbridge.org/visit/hannahgraceharrison.
Wednesday, 6/30/10 - Jess
Even though we're left with a tough decision today has been an amazing day. The chemo is working, the tumor has not grown back, and because of the skill of so many (nurses, doctors, amazing neuro-surgeons and oncologists) our little guy is alive, happy, full of energy and ready to see Cinderella ( yes, much to John's dismay, Cinderella is the only Disney character he is familiar with, aside from Lightening McQueen and Mater, but I don't think they'll be walking around in costume). It's going to be a great week. Thank you so much for praying on behalf of our son and for your continued words of encouragement.
I am about to ship the last of the t-shirt orders; these are local addresses so it shouldn't take long to get to ya...sorry about the delay.
And we will definitely take lots of pictures and video at the Disney parks...it may take us a while to get them posted on the site, but we'll do our best. God bless everyone and have a great 4th!!!
We've had a good day: Noah had his port accessed in clinic today for general anesthesia in the morning, then we did some shopping and had a nice dinner. Even after a relaxing evening, I'm still really stressed and nervous about the scan. This is a really big deal, with one of three outcomes. 1. Noah has no residual tumor, the chemo has been effective and he will be declared in remission. 2. The spot that was found on his last MRI is still present and large enough to warrant more chemo treatments. 3. The spot that was found on his last MRI is present and growing, large enough to warrant another surgery and chemo treatments. Of course we are praying in faith that Noah is cancer free. Depending on the scan, Noah's neuro-oncologist and possibly his neuro-surgeon will read it to decide what our next step will be.
After Noah's scan we will go back to the oncology clinic and wait for the results. I cannot promise that I will report through a blog tomorrow, but I will do my best. If anything I will report through facebook since I can do that through my phone. I want to say thank you to all who are praying, and to Julie for organizing the prayer vigil at our church. I've already got some encouraging emails about those who have had special experiences in prayer for Noah. No matter what comes of this test, we will still continue to trust in the Lord to bring glory to Himself through this circumstance. Pray with us that this season of our son's suffering is about to come to a close. Love to you all.
Wednesday, 5/26/10 -Jess
Thank you for your prayers , and I will post a more detailed blog tonight.
Ok here's the more detailed blog:
We are home! As I wrote earlier today, Noah's blood wasn't quite as strong as it needs to be for the next treatment. We will wait until Tuesday to check his counts again and go from there. More than likely he will be able to go ahead with treatment number 6 on Wednesday. Now here's the news I wasn't expecting to hear. Treatment number 6 may not be the last. What I don't remember hearing when we began this chemotherapy process was that there are 17 treatments in Noah's specific protocol. All we heard and understood was that there were 6 scheduled treatments and an MRI after that which would determine the next steps. The nurse practitioner did encourage us that the previous 2 patients (and only other patients) that have used this protocol (at this hospital) did not need the full 17 rounds of treatments, and they are both doing well today. She seemed confident that he wouldn't need the full protocol. Anyway, right now we're definitely looking at one more chemo round and an MRI; the concern of the spot on the last MRI is ever constant in my mind. Still praying it won't be there at the end of June. The possibility of more treatments still exists, but we're also praying that number 6 will be the last! Noah has had a long day of traveling but still has lots of energy to get into EVERYTHING he shouldn't be getting into at home. So he is doing great. :) I will be sure to post when I have a definitive answer about next Wednesday.
Monday, 5/24/10 - Jess
John had a great time in Chicago with the ABTA team and will post a blog with pictures about his experience there. We are still selling t-shirts to help support the American Brain Tumor Association; you can purchase them here. Thank you to all who have donated to ABTA in honor of Noah or bought a t-shirt to help support their cause. Through the 5k run the organization raised over $750,000 for brain tumor research funding. We are excited that we were able to be a part of that this year. Next year we plan on having our entire family there. :)
Prayer requests for this round of treatment are no different than what I requested for the previous rounds. We pray for Noah to keep his appetite and energy, for nausea and vomiting to be far from him, for cancer cells to die and good cells to live...I will post more on Wednesday after he begins that LAST treatment. God bless.
Wednesday, 5/12/10 - home sweet home :)
Tuesday, 5/11/10 - Jess
Monday, 5/10/10 - from Children's
Saturday, 5/8/10 - T-Shirt Order Time
Quick Update: Noah is neutropenic, but is holding his own. No fever, a little energy to play outside w/ Dad and ride the lawn mower (before I get emails - not while cutting the grass, just a ride!) so we're just hanging out, having fun, and trying to make every minute count before the dreaded hospital stay. Hopefully that won't come until maybe Monday when he will more than likely need some blood products. So we're still home! I will notify of any changes. Hope everyone has a happy Mother's Day!! Love you Mom!
Tuesday, 5/4/10 - Jess
I don't have much to say except thank you - I hope that doesn't get old - to our family, friends, and community, and anyone who has ever lifted a prayer or supported us in any way. Everyday I am overwhelmed by the generosity of others. I will update if Noah's health changes so you will continue to know how to pray. Once again we're asking God to keep infection far from Noah, and keep fever at bay. Hope everyone has a great week!
Wednesday, 4/28/10 - Jess
On a better note, we were able to meet up with a couple of families we've met through Children's that are going through all too similar experiences. It's unfortunate, but at the same time good to have friends to talk with that have "been through it" already, or are going through it with us. There is an instant connection, especially for me, with a mom who can look at me and not have to say anything, and her eyes speak to me, "I know." There is level of comfort in that; I hate it that there are others struggling through this same situation...but at the same time I'm thankful for their friendship and help.
Right now Noah is getting his first chemo drug...the one that requires his blood pressure to be monitored during the entire drip (2 hours or so) and he is NOT enjoying being hooked up to two lines at once! This drug also will begin to make him nauseated, so please also pray against nausea and vomiting for him. He will have one more chemo drug tonight, two more tomorrow, and an antibiotic on Friday morning before we leave.
It is dinner time, so I'm going to close for tonight. The pictures above are from last week...good times. Thank you guys for everything and much love!
Tuesday, 4/20/10 - Jess
This week has brought some unexpected media attention; there will be a story airing on our local Ch. 19 about some of the fundraisers for Noah, ABTA, and his oncologist's research. Also, last week John called the Dave Ramsey show to announce our freedom from debt (except for our mortgage!) and left a detailed message about our situation as of late. A respresentative called him back yesterday and wants us to be on the show this Friday. They want us to mostly talk about the importance of tithing and the provision of God. We will speak with them via skype on Friday morning, but I'm not sure what time the radio show will actually air, or if we will be on the Fox News program. Please pray the the right words will be said and will bring encouragement to others and glory to the Lord. (And pray I don't sound or look as completely uncomfortable as I will surely be!) Thank you for praying!
Thursday, 4/15/10 - Jess
Our Path for Progress team has already met nearly 70% of our fundraising goal. I am waiting on a price quote for our t-shirts and will get the order page set up as soon as I clear everything with the printer. I also spoke with a representative from ABTA today and we are able to request our donation to be set aside specifically for pediatric brain tumor research, which I am VERY happy about. I asked him what percentage of their funds go to pediatric research, and he estimated between 8%-10% (around $150,000). He said this ratio is consistant with the ratio of adult to pediatric brain tumors. The sad part of that percentage is that of all pediatric tumors, brain tumors are the leading cause of solid tumor cancer deaths in children through high school age (tbts.org). There isn't that much funding for it's research...and that sets a fire under my butt. Now, I realize that ABTA isn't the only organization funding pediatric brain tumor research; there are several other organizations that are dedicated to childhood bt awareness/fundraising/etc (cbtf.org, braintumorkids.org, pbtfus.org). But I know there still isn't enough money floating around in the sea of research funding to figure out why my son had a life-threatening tumor that grew rapidly inside of his brain, and how to effectively get rid of the cancer for good. His treatment regimn is still experimental...and that's kind of scary.
Anyway, it's late and I'm rambling...but please know how much we (my family) continue to appreciate your prayers and gifts and encouragement. I will update again when I know our next date for treatment. Have a great weekend!
"Many are the plans in a man's heart, but it is the Lord's purpose that prevails" (Proverbs 19:21). Holding firm to His truth and promises. :)
Tuesday, 4/13/10 - Jess
Sunday, 4/11/10 - Jess
Thursday, 4/8/10 - Jess
We had some friends visit on Tuesday, and Noah also got to visit with a sweet dog from the "Hand in Paw" program. Yesterday was rough; Noah didn't feel well and I was really tired, so neither one of us had much patience with the other! Thankfully John was able to come down yesterday afternoon to break up the monontony. It seems like the days drag when he is not with us, and then when he is here they fly by...I really miss my husband.
I'm not sure how long this stay will be, but please keep praying for Noah's neutrophils to grow, and for us to stay positive and full of joy and life while we're confined to this small, not very interesting space. :)
Monday, 4/5/10 - Jess
Sunday, 4/4/10 - Jess
"Who taught the sun where to stand in the morning
Who told the ocean you an only come this far?
Who showed the moon where to hide 'til evening
Whose words alone can catch a falling star?
Well I know my Redeemer lives
I know my Redeemer lives
All of creation testify
This life within me cries
I know my Redeemer lives
The very same God that spins things in orbit
He runs to the weary, the worn and the weak
And the same gentle hands that hold me when I'm broken
They conquered death to bring me victory
Now I know my Redeemer lives
I know my Redeemer lives
Let all creation testify
Let this life within me cry
I know my Redeemer, He lives
To take away my shame
And He lives forever I'll proclaim
That the payment for my sin
Was the precious life He gave
But now He's alive
And there's an empty grave...."
It was 230am on Easter Sunday, and in my selfishness and weakness, through this song the Lord reminded my soul, "I am alive; I've conquered death and the grave, and now I offer you My freedom and My love." What an appropriate time for me to hear that song, a "divine appointment," if you will. And how often do I forget that in the middle of my struggle and weakness I must think on God's goodness and all He has done for me, and sing His praise in order to distract myself from my momentary struggles and be filled with joy and comfort? Quite a bit. So I thank God for His persistence in reminding me. :)
We made it up to 4 Tower at 3am, and were greeted with warm smiles and offers of assistance...I love our 4 Tower nursing staff! They really have a special gift of compassion and sensitivity towards the plight of the patients and families here, and they help to make this journey a little less difficult. I didn't sleep much between getting settled in, clorox-ing everything I can (I'm just slightly obsessive), checking Noah's diaper (when he's on fluids we go through a lot) and keeping an eye on his temp. There was also a child next door that I believe was having night terrors - which I had never experienced until then - or he/she was in a great deal of pain...it was pretty startling. Mom and Noah are asleep again and instead of sleeping I'm writing....it's that 20 oz. Diet Dr. Pepper I had at breakfast - it will keep me awake but doesn't help much with brain function, thus the randomness of my blog!
Noah's lab results look about the same today as they did last night: no neutrophils, very few total white cells, low platelets and red cells...same old same old....so we just wait for those neutrophils to grow, and pray against any infection. He was still a bit feverish this morning, and not feeling very well. He perked up a little before lunch, but then hit another low probably because he's just plain worn out.
Our team's campaign for the American Brain Tumor Association "Path to Progress" is off to an amazing start - we have raised over 50% of our goal and expect to surpass that goal with the help of our t-shirt sales. We've had several people interested in joining our team, which is traveling to Chicago at the end of May to participate in the 5k. Please let me know if you are interested in taking part in this event to help raise brain tumor/cancer awareness, and visit our team page to sign up to run or donate $. The t-shirt order page is coming soon to our website.
Thank you so much again for prayers and encouragement; I will post more on Noah's condition as the week goes on.
Thursday, 4/1/10 - Jess
Noah's lab results today confirmed that he is once again neutropenic, and we should expect a fever to spike at any moment. Our bags our packed, so we're just waiting for 100.5 while praying it won't come. Maybe my next blog won't be from Birmingham...
Wednesday, 3/31/10 - Jess
In addition to signing up through the ABTA website, please send me an email at email@example.com if you plan to race.
Thank you so much for your help in raising brain cancer awareness and funding research!!!
"Fighting the Flood" for Noah team page - click here to donate or join our team and race down the "Path for Progress!"
Tuesday, 3/30/10 - Jess
While reading today, the story of Lazarus jumped out at me and as I read I was encouraged. Jesus said to His disciples about Lazarus,"this sickness will not end in death. No, it is for God's glory so that God's son may be glorified through it" (John 11:4). Jesus loved Lazarus, and yet He tarried, and essentially allowed Lazarus to die only to raise Him from the dead, "so that you may believe" (John 11:15). I don't doubt His power and ability to heal, but I also know that He may tarry and He is often "slow to act" according to my watch. As I wait on the Lord to completely heal my son, I am encouraged by the letters and comments I receive from so many of you who are praying and believing with my family for a miracle. And I see how even now God's is glorified through the work He is doing in Noah. Thank you for all you are doing and have done to show us the love of Jesus.
Monday, 3/29/10 - Jess
We are still waiting on someone to call about his latest MRI; not having the surgeon's or the oncologist's opinion is leaving my mind open for a world of worry.
We are about to go to his ENT to get some ear molds made to keep water out (Noah had tubes put in 5/09) since he pushed his down the drain while Dad gave him a bath. **We're also having a hearing test since a side affect of the drugs is hearing loss...praying there is none of that! Thank you all for still thinking and praying for us; I'll keep you updated if there are any changes in his health. Hope everyone has an awesome week!
**Passed hearing test!
Friday, 3/26/10 - Jess
I saw a post on another cancer patient's blog, wanted to share:
WHAT CANCER CANNOT DO
Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.
Thursday, 3/25/10 - Jess
Noah took a little longer to wake up after the procedure this time, and he is still a little drowsy in the above picture. He is eating well right now and we hope that will continue through the treatment.
MRI results (sort of): Noah's neuro-oncologist and neurosurgeon were both out of town today, so we couldn't get an "official" reading. The nurse practioner showed us the image, and she agreed with the radiologist that there is a place of concern. There appears to be a "spot" or "enhancement" that was very very small on Dec. 30 (his last MRI) and has grown a noticeable amount. They don't know what it is - could be scar tissue, could be edema, could be tumor - so we're waiting for one of his doctors to take a look at it. It is definitely something we have to watch. Right now all we know is that if it continues to grow, it will more than likely be residual tumor and have to be removed. It's located on the edge of the brain next to the space that remains from the tumor. Hopefully this is something harmless, and if not then the remaining chemo treatments will take care of it.
We will keep updating over the next few days while we are at CHS. Thank you for your continued prayers!
Wednesday, 3/24/10 - Jess
He had his port accessed around 2pm and saw his doctor, then we went searching for our hotel. It a good drive from the hospital, but it's a nice place to relax before our hospital stay (thank you Jennifer!). We need to be at CHS at 830 in the morning for Noah's MRI...I really doubt his MRI will take place before 9, but remember him in prayer all morning if you can! I'm getting anxious about it, but I know that this is in the Lord's hands. It does no good to worry - I'm telling myself that over and over.
Thank you for your thoughts and prayers; I will update tomorrow evening with more information.
Sunday, 3/21/10 - Jess
Since we are still not completely familiar with the Birmingham area we don't know what's available as far as fun things for Noah to enjoy (a zoo, kids' museum, etc.). If you have any suggestions please let me know - you can email me through the "how to contact us" link above, or post a comment on our guest book.
P.S. - Anytime Thursday morning, if you think about Noah, please lift up a special prayer for his MRI experience, that he will do well with the anesthesia, that all staff involved will take every precaution possible to keep him safe (once your child is burned in an MRI you will never completely trust those staff members again), that there will be no sign of regrowth, and that John and I will be at peace while Noah's in what has become a questionable machine - yet one that saved his life. I have to tell myself that the risks are worth it.
Tuesday, 3/16/10 - Jess
I wanted to share that story so you know what a sweet little boy we have...no to mention brave. I know I said many times before how amazing he is about getting his shot, but even his nurses have marveled at how well he does with it. As John said to me tonight, "He is my hero. " :)
He is doing well; white count and platelets are still low, but hopefully that will change by Thursday when we get his blood tested again. Thank you for praying!
Sunday, 3/14/10 - Jess
Saturday, 3/13/10 - Jess
Friday, 3/12/10 - Jess
We are scheduled to be back in Birmingham on Wednesday, 3/24 for an MRI and his next round of chemo. Until then, we're going to enjoy our time at home. :)
Thursday, 3/11/10 - Jess
Wednesday, 3/10/10 - Jess
John came down last night and will be here with us through this afternoon. Pray for safe travel for him please. I'm about to leave the hospital for a much needed break from our recent "normal" activities. I will more than likely return with a(nother) new toy for Noah. :) I'm not sure if we should get him out of the room today, so hopefully a new toy will hold his interest for a while. It's been really hard on him to be in the room for the majority of past few days...I have cabin fever and I can't imagine what that's like for a 2 year old. Thank you for praying and encouraging...Coming home Friday is our new goal!
Tuesday, 3/9/10 - Jess
I had a great visit with some of my "sisters" that drove down last night, and Noah had a blast showing out for them. John will come down this afternoon and spend some time with us until he has to get back for service preparations on Wednesday. Please pray for him as he spends so much time driving back and forth from Birmingham to Athens...and praise the Lord for our reliable transportation! I don't know if I've actually posted this on the site, but we were blessed about 2 months ago when some of our friends gave us a van. That's right, GAVE us a van. It's a 2008 Dodge Grand Caravan. And they GAVE it to us. It wasn't even one they just had sitting around that wasn't being used. They went to the dealership and bought it for us. They saw our great need and had the faith to meet it. Oh my word...I can't even begin to describe what a help it has been. The engine in my car had gone out several months prior the Noah's diagnosis, and John's Jeep is great for getting around town and for hauling his trailer, but it still needed a lot of work. With all of the upcoming medical bills, I was stressing about what to do. (We could not afford another montly payment, or the interest that would come with it.) John had enough faith to tell me, "stop worrying - God will provide." And He did. And we're praying that one day soon, we can pay this forward...and we're working on that. :) That phrase "to whom much is given, much is required" is on my mind. I'm not sure who said it/where it came from...is it biblical? I don't know. But I do know that the level of expectation I've placed on my family is..well...BIG. It's obvious to me that the Lord allows trails and tribulation in order to grow His children, to shape them like a potter shapes his clay. I believe we are being molded and crafted, sanded and scraped for a greater purpose...to resemble Him more. And if this is what it takes to develop my character and move me closer to the likeness of Christ, then so be it. Who am I to question His ways? We have been SO taken care of through this entire journey, I have no doubt that in the future He will provide in ALL ways - physically, materially, spiritually, etc.
And you know I have to close by saying, THANKY YOU for your gifts and prayers and encouragement and love and support....we are so glad to be in the family of God.
But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you (2 Corinthians 4:7-12).
I'd also like to share about Beads of Courage. A friend posted the video below on facebook and I wanted to share with everyone who reads our blog. These Beads of Courage program help so many childhood cancer patients; it gives encouragement and hope. Noah is still too young to understand the concept (he just wants to put them up his nose) but I find great satisfaction in having a tangible thing to represent everything he's been through. And one day he will really appreciate them as well. But it needs funding just like any other program like it. You can click on the link above and follow these directions to give specifically to Children's Hospital Oncology Group Beads of Courage program:
2. Choose Shop, then Donate
3. Choose donation amt...
4. Location: Just because I care
5. Designate My Donation To: Child in Treatment
6. Write in the Note - Children's Hospital in Birmingham, Alabama - Oncology Group
* Step 6 is crucial to make sure it gets to Children's!
Monday, 3/8/10 - Jess
Today has been a good day. Noah's nurse asked the docs if we could take him off the fluids since he was drinking so well. They consented, so he is (almost) a free man! He has been freely running and jumping around the hospital room, and we took a walk down to 3rd floor where the Lily Pad is located (a play room for Noah's age group). He had a great time down there. Just before we left, we heard a med-flight helicopter approaching, and he was able to watch it land on the roof across from the playroom. So he is one happy boy today!
Last night nurse Jennifer came in to check on him, and he "wooed" her into staying a little longer and playing and dancing with him. He is such a flirt. (For those of you that don't really know us, he gets that from Daddy!) He loved on her, sat on her lap and looked at a book, played with her flashlight...it was really sweet that she spent so much time with him. All of our day/evening shift nurses have been so great with him, and I appreciate their compassion and love for him. I never get to really meet the night shift, because I'm trying to get as much sleep as possible, but I'm thankful for them also. I know their job comes with rewards as well as heartache, and I'm so glad they've sacrificed to be in their position.
As I'm writing Noah is sleeping while receiving some platelets. His blood levels were still about the same as yesterday, so we will be here for a few to several more days, depending on how quickly they rise. Best case scenario, we could be leaving on Wednesday. Whatever day we leave, Noah will get some blood and possibly another platelet infusion. John has to work today and tomorrow, then he may come back down on Tuesday afternoon and stay until we know if we're leaving on Wednesday. Wow, the flexibilty one must develop in a situation like this. I've always considered myself a somewhat flexible person, but this is pushing the envelope...well, my envelope anyway. I know other people are capable of so much more - but I'm a "planner." I want to know what is going to happen and when. I don't like suprise birthday parties. I usually guess what Christmas and birthday gifts are before I open them. I make lists, and I check off each item as I finish it. In my world, organization = peace (but my home and my life don't reflect much of that right now). The past few months have been just the opposite of what I can handle, and my stress/anxiety levels, as well as my blood pressure, are proof that I'm not as flexible as I thought! But I'm growing towards flexibility with every chemo treatment and every fever that warrants a hospital stay. Hopefully when all this is over I will more skilled at handling the surprises life throws at us.
The pancake breakfast and the blood drive were both a huge success...thank you! (I posted a thank you blog below; I just can't say it enough!) John is already planning another blood drive in Noah's honor in is hometown of Florence. I'm really excited to see the outcome of it.
When John arrived Saturday he came bearing gifts - cards, baked goods, etc - and the best one was a book called "Curious George Makes Pancakes." The book begins with George waking up excited about a Pancake Breakfast he is going to attend with the man with the yellow hat. (I really wish the author would have given the man with the yellow hat a much shorter name, like Bill or Bob.) Anyway, the breakfast is a fundraiser for the local Children's Hospital. As usual, George goes to the event, does his monkey business, gets dirty, makes a mess, but ends up saving the day. The book was given to Noah by the son of family friends. Brennan's mom told me it was his favorite book, and on several occasions he let her know that he wanted Baby Noah to have it...he made the connection about the fundraiser and he wanted Noah to share the joy he got from reading this story. This little book about pancakes has blessed my heart and I know one day when Noah is old enough to understand, it will bring him joy to know his peers were praying for him and loving on him from a distance. My mother relayed a story about a little girl named Hannah (daughter of a church friend) who took her bald-headed baby doll and drew a purple line down it's head "so it would have a scar like Baby Noah." These stories are so sweet, and I love to hear and document them...so please let me know if you have any more. :) We can learn so much from the compassion and love of a child.
Then Jesus called a little child to Him, set him in the midst of them, and said, “Assuredly, I say to you, unless you are converted and become as little children, you will by no means enter the kingdom of heaven. Therefore whoever humbles himself as this little child is the greatest in the kingdom of heaven (Matthew 18:2-4).
Sunday 3/7/10 - Jess
3/6/10, Saturday - Jess' attempt at a thank you...
I don't have words to express my gratitude...I am so humbled by and indebted to my community for the gifts you've given, the blood you've donated, and the prayers you've lifted up for us. I am perpetually moved by the compassion and sacrifices made...I've never experienced the love of Christ like I have through this situation with Noah. I wept tears of joy and thanksgiving when I saw the pictures from this morning's fundraiser. You have given gifts, you have given blood, and you have lifted us up in prayer...and I thank God for you daily. Thank you for serving and honoring the Lord by loving on Noah - he would throw you a kiss and give a big hug if he could. Much love from an overwhelmed and thankful mother.
3/6/10, Saturday...REALLY early - Jess
God is good, and in a few hours our church will open it's doors for another fundraiser for Noah, as well as a few FUMC ministries. John stayed behind in Athens so he could be a part of this special event...please know I would be there if I could. I can't wait to hear about it from him this afternoon. I get emotional thinking about how many people are lifting us up in prayer and standing with us and "holding up our arms" when we are weak. I have never experienced the love of Christ like I am experiencing it now through my brothers and sisters in Him...thank you.
And now I really need some sleep! :)
Monday, 3/1 - Jess
The day Noah was born, I had no idea what his life would bring to mine and John's. Even though he looked like a really wrinkly, skinny old guy, he was the most beautiful, sweet thing to me. Two years later he has less hair than he had at birth, and a ginormous scar on his head, and he's still the most handsome, sweetest little man ever. :) I never thought I would be so thankful to the Lord for Noah's 2nd birthday. But for the past week, every night he lays down his head and every morning he rises I give thanks for this child that almost didn't see 2. I think about what I would have missed had the tumor overcome him - his laugh, his smile, his sense of humor, his joy, his screams, his tantrums, his resilience. He's my miracle.
I forgot to let everyone know that we returned home on Friday (2/26). We will have Noah's blood tested tomorrow and Thursday, and we expect to be back in Birmingham by the weekend for fever/neutropenia. It seems that Noah has had less side effects since this last treatment; he is eating better and has been more active compared to the first few days following the previous treatments. It would be awesome if he didn't run a fever and we could take our time getting him to Birmingham for blood/platelet infusions (which are pretty much inevitable), because once his temperature starts rising we're told it's a very risky situation and he needs antibiotics asap. So we're taking precautions and praying against anything that could cause fever (while monitoring him very closely) and hoping for a leisurely, worry-free trip to Birmingham instead of a ride in an ambulance.
This weekend is the Pancake Breakfast at our church, where the men's ministry will be trying to raise money to help with Noah's medical costs. There will also be a blood drive in Noah's honor. If you happen to be at the breakfast, please give blood as well. And wherever you live, if you're able, please donate your blood! I was led to give blood for the first time about a year ago, and though uncomfortable it was rewarding to know that I was quite possibly giving someone else life. I've read that the cancer population really depletes the donated blood supply. My son has already had 3 transfusions, the first one more than his entire blood volume. Each time we stay at Children's, the hematology/oncology floor is filled with patients of all blood types who need your healthy blood. The next time you see a Red Cross "blood bus," please don't pass it by - give! :)
Once again, I have to close by saying "Thank you!!" to everyone who has helped us in whatever way you can. WIthout our support system, we could not survive the day to day stresses of the situation. I'm happy and grateful to say that with each medical bill/pharmacy bill that comes, we have been able to simply write a check and not think twice about it. Thank you for your blessings.
Wednesday, 2/24 - Jess
We've had visits from a neuropsychologist and dietician today, and should see a dentist at some point during our stay. Everything is going really well, and we appreciate the prayers!
Monday, 2/22/10 - Jess
Please remember us in your prayers these next few days as we prepare for the trip to Birmingham, the treatment, the side effects...pray for Noah's body to respond well to the drugs, for his appetite to rage, for his taste, for his temperament, for him to feel no pain. I had some blood drawn today, and I forgot how it hurts. This little guy was getting stuck in his arms twice a week for a while. He's tougher than I am! We appreciate all the help that has been given to us, and all the prayers for healing and comfort. We will update on Noah's condition while in the hospital. God bless you!
Monday, 2/15 - Jess
When Noah was diagnosed, I knew immedietly what a long, physically/mentally taxing journey we, as a family, were about to begin. But I had no idea how my spiritual life, my relationship with the Lord, my theology, basically everything I knew/thought about God would be stretched, tested, doubted, increased, etc. I guess you could say I'm spiritually and emotionally worn out. I went for a drive Saturday (which I sometimes do to get away and think/pray) and I found myself, once again, asking the Lord to take this away from us, and most of all, from Noah. After crying and fussing and whining for a bit, I begin to just ask the Lord to come quickly. Come and relieve us from this world filled with sickness and broken hearts; come, and bring Your Kingdom with You. I know that anticipating the Lord's return is good, and we should all desire that. But I feel like my prayer was selfish in nature, because I'm tired of this world and it's sickness. What I haven't prayed in a while is, Lord use this trail to bring glory to Yourself. Lord use my son’s story to bring someone closer to You that hasn’t cared about You. Lord show someone who feels unloved by You that even in their pain, even in their “desert” that You are there, sustaining them, because of Your love for them. You never promised in Your word that we would be free from pain and suffering. You never promised that You would not give us more than we can handle. Paul pleaded many times to be relieved of the thorn in his flesh. When we are allowed to be given more than we can handle, more than we can bear, that’s when it’s so much easier to give it to You. Father take this burden and carry it for us. Let us be an example to others in pain, in grief, in the desert that in EVERY season of life You are still God. In EVERY season we still have a reason to sing, and most definitely still have a reason to worship You. It may be a little (or a lot) harder at times, but because of the hope we have in You we will get through this.
I'm posting a song below that I've been listening to about praising God in the different seasons of life. I hope it encourages whoever will listen.
Thank you again for still praying and encouraging us though this season. God bless!
P.S. And a special thanks to the Lion's Club for their fundraiser coming up this Saturday to benefit Noah and the medical expenses incurred for his treatment.
Thursday, 2/11 - Jess
Thanks for your prayers and encouragement (and offerings of food and other forms of assistance)! You are amazing servants of the Lord. God bless.
Tuesday, 2/9 - Jess
If anything changes I will post again tomorrow; otherwise, we're just waiting!
"Wait for the Lord; be strong, take courage, and wait on God." - Psalm 27:14
Monday, 2/8 - Jess
Sunday, 2/7 - Jess
Right now we're doing a lot of waiting again. Labs are drawn between 3-4am every morning, then we find out sometime after 8 what they look like. Tomorrow we will know if he has an infection or not. Then we'll keep praying as we wait for the next step. Thanks for your encouraging comments! Will keep you all posted.
Saturday, 2/6 - Jess
John is still in Athens since he has to lead worship in the morning. That's hard on all of us to be separated right now. My mom is staying with me until John can come down tomorrow afternoon.
Someone told me in the beginning of this that we had a long, hard road ahead of us - that it would get harder before it got easier...I'm praying this is the "harder" and from now on will be the "easier." Somehow I know that's not the case. Don't get me wrong I have lots of hope for my little guy and faith in the Lord, but this is still hard. I've cried a lot, I've been plagued with guilt, been angry at people, been breaking my back to try to keep Noah happy...but it's almost tomorrow and I know He brings joy in the morning. Maybe not that joy that comes with happy, no-problems, peaches and cream stuff...but the joy that raises from deep within when I realize that He is walking this really crappy road with us, and carrying us when we get too weak to stand. Joy that gives my arms that extra boost of strength when they feel like they will fall off from a 28 pound monkey constantly hanging off my hip. Joy that whispers, I will never leave or forsake you...especially in times like this.
God is still good, even when I don't understand. Thank you for still reading, praying, encouraging, and loving on us. You guys are amazing.
10Hear, O LORD, and be merciful to me;
O LORD, be my help."
11 You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy, 12 that my heart may sing to you and not be silent.
O LORD my God, I will give you thanks forever.
Thursday, 1/28 - Jess
This stay, as John mentioned last night, has been better than last month. Being here is like a wake-up call for me; we run into familiar faces that have been here since our first visit, we hear kids screaming in pain down the hall, see the scared faces of parents heading to the PICU, and realize that "it could be worse" or "at least we're not dealing with this".....helps us keep our perspective. And that seems horrible and makes me feel guilty when I think about it - us comparing our situation to others and counting our blessings, because that means someone else is dealing with a heavy load. I just pray God gives them strength and power to get through it.
Dr. Cook just came by and we will definitely be heading out sometime before lunch tomorrow, as long as Noah does well through the night! Good news, cause I am ready to get out of here. :)
I've been keeping up with a little guy named Joel Green from CO. He just had surgery to remove a tumor on his brain stem and is doing well as far as I can tell. His parents are still awaiting lab results and are rallying people to pray for his healing...please add him to your list as well. You can read about his story and see his sweet pictures at the website:
God is good, all the time. And all the time, God is good. He will draw near to us when we seek Him, and prepare us for what lies ahead! We are still trusting in His promise for healing and taking it one day at a time. :) Thank you for your prayers and encouragement, and God bless!
Wednesday January 27th 2010
Noah was glad to see his nurses on 4th tower again. He knows many of them by name. He knows how to help make the blood pressure machine work – seriously – He presses the right buttons to make it start, he helps with his temperature readings and did very well with his port access. He is getting used to all of this. In one way it is a relief. He isn’t as scared anymore and we don’t have to fight him as much to stay still. On the other hand it is a tragedy that any child is familiar with any of this at all. So far we have had no adverse reaction to any meds and he is sound asleep in his bed. It is quiet in the room tonight and I think we will sleep well. This is a much better trip than the last one so far.
We would like to thank all of you who have contacted us with cards of support and all of your prayers. Noah is here because of the grace and power of God and the prayers of His saints. We can’t say thank you enough!
We may get to come home Thursday night or early Friday. Please pray for Noah’s continued healing through this difficult time.
Tuesday, 1/26/10 - Jess
I think this stay at the hospital is going to be better; we will definitely be more prepared as far as what to expect and how Noah will react. During the last treatment his nurse gave him a stethoscope to keep. They take his vitals a good bit, and in the beginning it was nearly traumatizing for him. Now, he helps put on the blood pressure cuff and actually pushes the button to start the machine, and he "helps" take his temperature with the "beep-beep" as he calls it. (The stethoscope is considered a "beep-beep" as well.) It's cute, but sad at the same time, that he knows the routine.
I know this blog is very random: but right now Noah's working on a puzzle of motorized vehicles and yelling "race car" and "helicopter," which sounds more like "heh-cot-ker." He just learned those words in the past couple of weeks. I remember sitting in a small office with his surgeon moments after he removed Noah's tumor, with him telling us Noah could most likely be a special needs child. He would have to re-learn to walk, talk, even move his arms. He said there were a few moments when he almost just had to close him up because Noah was loosing so much blood - they almost lost him. Now looking at him running, playing, screaming, singing, dancing, throwing a tantrum, being disobedient....I have to praise God. If I'm not chasing him around the house, at least once an hour I find him in the bathroom washing something in the sink - yesterday it was the DVD player remote - but in those moments of frusteration I am SO thankful that he is here for me to be frusterated with!
Just to be honest: I've been in a pretty low spot this week. I know I've written before about staying strong and focused by comparing our situation to others, remembering that our situation could be so much worse, and letting the Lord remind me of the bigger picture, and I still believe that. But this week I decided to just grieve my loss of normalcy, to just be angry, to just cry, to just let those emotions go that I've been trying to pretend weren't there. John and I talked about how it's getting harder and harder to answer the question, "how is Noah?" 'cause that question is so relative. Some days I can say, he's doing great for his circumstance. Other days I want to say, well, he has cancer, and his life is in jeapordy if these chemotherapy drugs don't do their job. And even if they do the job, there is still a chance that this tumor could recurr and metastasize to other parts of his body. Now, this is nothing against anyone who would ask about Noah...it's just that this journey is an EMOTIONAL ROLLER COASTER; some days are harder than others to keep my emotions in check. So it's probably best that I am a bit ostracized from the public right now! :) Anyway, that's where I am. I know the road is long, but I also know that my God is FAITHFUL to provide what He has promised...healing for my son, in one form or another. Last night He reminded me that I can grieve for a time, and I may be angry for a time, but joy will come in the morning. And it has.
"Therefore we do not lost heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." - 2 Corinthians 4:16-18
Don't focus on present suffering, but on His joy to come.
Tuesday January 19th
We have one week until his next chemo treatment. His energy is almost back to normal and his appetite is getting better every day. Once he has his treatment though it will be back down hill. We are more prepared for this now I think. Knowing what to expect makes it a lot easier to deal with. Noah is strong and God has given him a sprit of a fighter. I sometimes wonder if Jess or I could handle this situation as well as he does if we were the ones going through the treatment. He is a tough little guy.
I want to express my thanks to some old friends of mine and my brother who took my jeep and repaired some parts that had made it unsafe to drive. In this season of trials and difficulty, some amazing people have allowed themselves to be the hands of God to provide for us what we could not do on our own. Thanks guys - its good to have the jeep back!
I also want to thank the youth ministry at Friendship church for the bracelets that say "Pray for Noah" To be quite honest, I get choked up every time I see someone who has one on. I received an email tonight from a Pastor asking for 20 of them. Most of these people we have probably never met, but they are praying for our son. There is no way to express the gratitude in our hearts for such an outpouring of love.
I have heard that there was some confusion concerning what the donations for the bracelets go to. There is an account at Friendship Church in Athens specifically for Noah and his expenses. All the proceeds from the bracelets go into this account. Thanks to the Youth Pastor and good friend of ours Jody Hooven for making this possible!
And thanks also to you for keeping up with Noah. I looked at the stats of this website today and over 700 times this website was looked at - today! We are so blessed to be supported by so many with your prayers and encouragement. I know that one day we will have an opportunity to explain to Noah just how much he is loved by friends and strangers and how great is the family of God!
Friday, 1/15 - Jess
Noah's dr. spoke with me briefly before we left on Tuesday about the potential of genetic testing/research in the future. I am all for this, since the first thing I questioned when I heard Noah's diagnosis was, have I passed a "cancer gene" to my child? I've written before about my dad - he was diagnosed with an astrocytoma grade II when I was a child, and died in 1988 from it. His mother passed about 6 years later from breast cancer that had spread to her lungs and other areas. Her mother also had breast cancer and eventually died from lung cancer. Dana Farber cancer institue began a case study on my family shortly after my grandmother died, and found that she had Li-Fraumeni syndrome, which is a defect in a tumor suppressor gene and increases your risk of cancer. My died was suspected to have the syndrome, and I believe one of his five brothers was tested and has it as well...correct me if I'm wrong guys! All that being said, Dr. Hawthorne is very interested in my family history, and hopefully Noah and I will have some testing done in the future. She (Noah's dr.) did encourage me to be on the lookout and have regular dr. visits since I could potentially be a carrier of the gene.
I've been walking around the past 2 days with one of those sticky link rollers in hand...Noah's hair has started falling out and it's worse than a long hair cat! I'm constantly rolling his clothes, the pillows, basically anything his head touches...and his head. :) It's a game for him now. I'm guessing he will probably be completely bald within a couple of weeks.
We have been notified of several fund raisers that have been scheduled for Noah, and we are SO grateful to those who are organizing these events. The bills have started coming, and every little bit helps to offset the cost of keeping him well! I'll say it again - we have such an amazing community and are so thankful for all the support we've received. We thank the Lord for you daily, and ask that you be blessed in return. I hope everyone has a great weekend - try a time of "house arrest" with your family like we are...it's actually a lot of fun! :) We're going to get some takeout, watch a good movie, play some Wii baseball...good times. I'll post more after lab results on Monday. Be blessed!!
Wednesday, 1/13 - Jess
I'm slowly learning how to upload videos to the site...I will do my best to get more posted so everyone can see how great Noah is doing. I'm so thankful for all the support and prayers! Will post a full blog soon.
Tuesday, 1/12 - Jess
I'm really glad we may get to come home, but I'm also nervous...since his counts are so low I'm going to probably go into overtime trying to keep the house free of germs! Please keep praying for Noah's health, for a successful transfusion, and for us all to have strength for today. God bless and I'll keep posting when I know more.
Monday, 1/11 - Jess
Thank you for your continued prayers, and I'll let you know what's going on tomorrow!
Friday, 1/8 - Jess
Back to the visit on Wednesday: Dr. Reddy's fellow, Dr. Hawthorne, did a short exam and explained the lab results. John asked her what she thought about Noah's recovery from surgery and his reaction to the chemo., and she said, "he is doing spectacular, and you are blessed." Praise the Lord! We credit his amazing progress to God, and to all the prayers that are being lifted up on his behalf every day. I don't know why Noah was chosen for this...but I pray that his continued healing and the answered prayers on his behalf will be a testimony to millions throughout his lifetime. I know in my heart that his little life has a big purpose, and knowing that helps me not to focus on the "problems" but on the good that has come from his situation.
Thursday December 31st - John David
I stood back and let Noah and Jessica go ahead as I took this picture. I looked at this hallway and was thinking about how far we have already come with this process - and how very far we have to go. Six months seems like a long time to undergo treatment, but in some of the other cases we have met here, six months is a short time.
I experienced something yesterday I did not anticipate and wasn’t ready for. We were sitting in the Oncologist exam room talking with one of the doctors. He asked if we had filled out the consent to treat form yet. We had not. In the business of Christmas I had forgotten about them. They are documents we have to sign to allow Noah to receive the drugs involved with chemotherapy. Some of the sentences in these documents are hard to swallow. I read about how nothing is certain in this practice of medicine. It could work, then again it could not. It could possibly cause him get another type of cancer down the road. It will weaken his immune system making him vulnerable to infection and even death. The line at the bottom of the page for my signature was blank. I had to make a decision to sign it. I immediately knew what that meant. I was agreeing to trust other humans to put toxic and somewhat poisonous chemicals inside my son, chemicals I know nothing about. I am agreeing to allow him to undergo discomfort, pain and to have the potential for infection. I am putting my trust in something that scares me to death. I saw what chemo did to my grandmother, aunt and father. I didn’t make the decisions for them to receive it, they did. But now I am making a decision for my son. I have felt a tremendous weight of guilt from all of this.
The first round of chemo didn’t go so well. Noah didn’t react to the first drug like they hoped so they stopped it. As I watched him cough and get red all over I felt helpless, afraid and guilty. They stopped the drug after a very low blood pressure reading. Noah immediately changed after the drugs were stopped. He came back to normal very quickly. This gave us a lot of relief. A Chaplin came by to check on us. He had heard we were new to the floor and had had a rough day. He asked us how we were doing and I decided to bear all to him. I told him how I was feeling guilty about Noah going through this. I know chemo is our only option but still we put our names on paper allowing him to go through this. He spoke a great word of encouragement to me.
He said God gives us children, and the responsibility to take care of them is ours. We can only do what we know, think and feel is best in our heart for them and the rest we have to leave in God's hands. We must trust that in the options God gives us, He also provides wisdom to make the best decision. We have to trust that He will perform what we cannot.
I know Jessica and I cannot fix Noah. God has granted him the blessings of surviving brain surgery, recovering remarkably and having some of the best Doctors around. We are trusting that this treatment is something God uses to heal, and that as Jessica wrote yesterday - He isn’t abandoning the ship during the storm.
Noah will really feel the effects in 7 days. We have to give him a shot everyday to keep his white blood count up, get blood work done twice a week and come to children's every 4 weeks to do the treatments. I know that we have the strength and faith to make it through this - I can’t wait till it's all over. But until then we will take it day by day, smile by smile and step by step.
Thanks for all of you who have prayed, sent letters of encouragement, cards and gifts, Noah is one blessed boy because of your love. We are eternally grateful!
Wednesday, 12/30 - Jess
The first drug he was given was called Etoposide; they had to stop about 15 minutes in because he was having a slow reaction to it. Typically the reaction occurs immedietly, but the Dr. on call came down and decided to try a "cousin" drug in the morning that usually doesn't cause a reaction at all. They had to make sure there was no blood in his urine, then he was given a drug called Cyclophosphamide. So far he has been ok with it.
It is after midnight and Noah is still awake. I hope he can get some sleep before the next round starts in the morning. I feel a lot less stressed now that we have started the treatment. If it's possible to have peace in the midst of the "storm" of stress/anxiousness, that's what I feel. The devotion I read today came from Mark 4:35-41, where Jesus is asleep in the boat with a storm raging around Him. His disciples woke Him up saying, "Do you not care that we are perishing?" He calmed the storm then asked them, "Why are you afraid? Where is your faith?" In the past few weeks I have prayed that God would give John and myself that calm assurance that Jesus had in the boat. He knew there was a storm, but he also knew that He had a much greater purpose and that storm would not kill Him. Calvin Miller stated in the study, "Peace:" Can it be that most of our lives are lived without this recognition? Doesn't God have much more for us to accomplish? Should not our own security in troubled times come in remembering this? We have God's living Son on board in our lives. Therefore, we may have confidence that in our own stormy situations He will calm the turblence and give us the confidence of His presence. Then, once our storms are all at rest, like His disciples we may remark, "What manner of man is this Jesus that even our private tempests are subject to His calm?"
Praise be to the Lord for the peace that He gives, and for protecting Noah today. Thank you for your continued prayers...we will post more tomorrow/ as soon as we're able. God bless!
Monday, 12/28 - Jess
I can honestly say that I have experienced more joy in this Christmas season than I have in seasons past. We spent Christmas Eve with my extended family and Christmas day with John's. Watching Noah interact with everyone and play with his new toys is just like watching any other normal 2 year old. His recovery after the surgery really has been phenomenal. His physical therapist commented today that his motor skills are where they should be for his age, and his hair hasn't even grown back yet (referring to the time it normally takes to recover). He has recovered really well, and John and I are very lucky, she said. We're not lucky...we're covered in prayer!
Because it has been such a wonderfuly normal past couple of weeks, I had pushed Noah's situation to the back of my mind, only to be reminded today that our Birmingham trip is quickly approaching. With that realization came the temptation to worry and fear. Chemotherapy is such a scary word, and with it comes so many unknowns. John and I are about to lead our son down what appears to be a dark path; I've read so many stories about how chemo affects children, and each one is different. We don't really know what we're getting into. It is here where there isn't any light showing us where our next step will lead that we must cling to the Light of the world. I have to keep reminding myself that He knows...and that is all that matters. I can only pray in faith, and that is what I'm doing - praying that the MRI will reveal there is no residual tumor and chemo won't be needed!
I write all this through tears, because I am really struggling to fight this fear. The enemy is trying to steal my joy, but I am fighting hard to keep it. When you pray for Noah, please also pray for me and John. Noah is so intuitive, and he knows me well...I don't want him to sense any fear from either one of us. We have got to be strong for him - be warriors for him. Pray for the Lord to encourage us and replace our weakness with His strength.
Noah won't be able to eat after 7am on Wednesday, and we are scheduled to begingthe 3-day process at 12:15pm. Noah's port will be accessed for the first time, and I'm unsure how he will handle that. After the MRI he is scheduled to begin the treatments. As always, John and I are so thankful for everyone who reads our blog and prays for our comfort and Noah's healing. We will try to post a blog as soon as possible after we get in a room on Wednesday and know exactly what the plans are. Happy New year to all and may it be blessed and filled with joy only the Lord can give. :)
The Lord is my Light and my Salvation - whom shall I fear? The Lord is the stronghold of my life - of whom shall I be afraid? When evil men advance against me to devour my flesh, when my enemies and my foes attack me, they will stumble and fall. Though an army besiege me, my heart will not fear; though war break out against me, even then will I be confident. One thing I ask of the Lord, and this is what I seek: that I may dwell in the house of the Lord all the days of my life, to gaze upon the beauty of the Lord and to seek Him in His temple. For in the day of trouble He will keep me safe in His dwelling; He will hide me in the shelter of his tabernacle and set me high upon a rock. Then my head will be exalted above the enemies who surround me; at His tabernacle will I sacrifice with shouts of joy; I will sing and make music to the Lord. Hear my voice when I call, O Lord; be merciful to me and answer me. My heart says of you, "Seek His face!" Your face, Lord, I will seek. Do not hide Your face from me, do not turn Your servant away in anger; You have been my helper. Do not reject me or forsake me; O God my Savior. Though my father and mother forsake me, the Lord will receive me. Teach me Your way, O Lord; lead me in a straight path because of my oppressors. Do not turn me over to the desire of my foes, for flase witnesses rise up against me, breathing out violence. I am still confident of this; I will see the goodness of the Lord in the land of the living. Wait for the Lord; BE STRONG AND TAKE COURAGE AND WAIT FOR THE LORD. - Psalm 27
Thursday, 12/24 - Jess
Other than that Noah is still doing great. He's as active as ever, and is really getting into Christmas. He loves opening all the gifts he's been receiving, and now he thinks that every gift under the tree is for him. I've had to re-wrap several times. :)
We've been to the store a few times and have been stopped by several people. I want to say thanks to those who approach us to see how Noah's doing and to let us know they're praying for us; it means so much that our community is standing behind us and is lifting us up in prayer. Just wanted to let everyone know we haven't officially heard anything on the radiation report, but we'll post another blog as soon as we do. I hope everyone has a blessed Christmas!
Tuesday, 12/22 - Jess
You're probably wondering why I posted this picture of the back of Noah's head. I'll get to that in a bit.
First I'd like to apologize for not posting anything in such a long time; we've had a week of PT/OT visits, Christmas shopping/preparation, and just normal life stuff. John and I had a great anniversary dinner at Ruth's Chris (we're high cotton now - thanks Abby & Courtney!), we fought the wait-'til-the-last-minute-to-buy-your-Christmas-gifts-traffic in Huntsville, and we took Noah to Santa's Village (where we did not see Santa), then ran into Santa at our church on the way home. Noah likes him from a distance but did not want to get close, so I'm glad we didn't wait in the line to see Santa while standing outside in 39 degree temperature!
I posted the picture above because John and I noticed a small patch of Noah's hair had worn away (a few days ago) and last night we realized the small patch had grown to be a 1x4" area that looks dry and irritated. We had no clue what was going on (why would his hair just randomly fall out?), and we remembered a report on a local newstation about a woman who suffered hair loss (among other things) due to over-radiation from a ct scan at Huntsville Hospital. The hospital is being investigated right now, and we have contacted a staff member about this situation. Some people may think we're being paranoid by assuming he could have been given too much radiation, but it's happened to 60 other people in our area, and with everything else Noah has been through that "typically doesn't happen" we decided it's best to check into it. We are going to the hospital at 10am tomorrow to pick up a report that will tell us how much radiation he was actually given during his ct scan. If he was mistakingly given more than the normal dosage, this will mean that Noah was given too much radiation in his ct on Saturday 11/21 and then was burned during his MRI procedure on Sunday 11/22. I'm praying this was not the case. This could also more than likely affect his chemo. schedule which will start on Wednesday 12/30. John has spoken with a lawyer who is handling many of the other cases that have occured at Huntsville Hospital.
I have no idea what else could cause Noah's hair loss. Because of everything that has happened to him, I am assuming the worst possibility...please pray that whatever has caused this will not affect anything else in his body. If you have any other suggestions as to what can cause this please let us know. We will also contact his dr. in Birmingham in the morning about this situation. Please pray for God's will to be done in this. Hopefully our instincts are wrong and it's nothing to worry about!
I will do my best to post an update on this situation tomorrow afternoon/evening after we have more info.
I hope everyone is having a great Christmas week, and remember the "Reason for the season!" Tonight John and I were discussing how this "holiday" has become something it shouldn't be; I hope this year will be free of stress and full of joy and peace....and family. We have 2 miracles for praise God for this Christmas - His son...and our son. :)
*We also apologize for the video error...John is working on getting that fixed.
Wednesday, 12/16 - Jess
Today was a sobering day, but a good day. Noah responded well to all the medical staff, he did great during the long haul back and forth to the hospital, he even lasted through about 30 minutes of our church's recognition dinner tonight. When we finally arrived home, he played the drums, "sang" and "played" his guitar, hit the baseball off the t a few times, ate some ice cream, hammed it up for my mom's new video camera....you would never guess my little man was ill. And that made it a good day.
Once again, thank you for your prayers, support, and love. Our story should print in the new "Athens Now" this week for those in our community that haven't heard our story. I pray Noah will continue to bring encouragement and hope to those who are searching for it...and I pray he will point many to the One True Source of hope - Jesus Christ. May God bless you!
Monday, 12/14 - Jess
Today Noah began to have a little hop in his step, as if he is trying to run. He's moving pretty quickly now. It's amazing to see when I think about where we were 25 days ago, wondering what was wrong with him. We are still waiting on the definitive pathology report from Johns Hopkins, and the LP results. I'm praying those will be ready when we go back to Children's this Wednesday for Dr. B. to check out his arm.
Today I have a little girl (EB) on my mind...she also was diagnosed w/ a brain tumor, and was still in the PICU on Friday after a surgery complication. Please pray for EB. A man from church, Bobbie Lassie, is awaiting results from a CT scan...there was a mass discovered on the R side of his brain. Please pray for him also. I trust God will work miracles in both these situations.
"God has not given us the spirit of fear, but of power, love, and of a sound mind" (2 Timothy 1:7). Over the past 24 days I have experienced a myriad of emotions...one of them being fear/anxiety. But each time this feeling tried to take over, I was reminded of this verse. I knew I had to have a clear head to share with John in the decision making process. The Lord has reassured me so many times of His soverignty, even in the midst of chaos and confusion. The devotion I read today reminded me that we need not fear "because greater is He who is in you than he who is in the world" (1 John 4:4). If I attempt to look too far into the future, I become overwhelmed with "what-ifs" and begin to loose my head. I just keep telling myself to take it one or two days at a time. Right now Noah is sticking a plastic drum stick up his nose, and shouting, "ho, ho, ho!" I'm praying that he will still be able to do these things after we start chemotherapy. But I'm not going to worry about or fear the upcoming treatment. I may be tempted to, but that is just a thought I can take captive and put out of my mind. (Remind me I said that!) I don't know what is causing your fear or anxiety today, but no matter how "big" or "small" it may be, you can take that thought captive and cast it into the sea. Ask God to lead, and think of those two scriptures above with me, and we'll kick the enemy, together, right in the face. I hope everyone has an amazing week! We will post a blog as soon as we hear anything about the reports. God bless!
Friday's Events, 12/12 - Jess
We were told Noah did really well; all the procedures went as expected - he didn't need a skin graft!! So we were able to be discharged last night, and we drove home while Noah devoured several mini packs of Pringles and lots of milk and ice cream! At this point - I'm just glad he eats. :) He is doing great - right now he is walking around with a basket on his head and playing the drums.
Yesterday mine and John's patience was tested to the MAX...but we did ok. We had a small explosion occur when Noah returned from recovery to his room - we discovered staple marks in several places. The nurse explained that the drapes are stapled to the body to hold them in place. We never realized this was common procedure in the o.r. so we had to have to Dr. paged to explain it in detail. We now realize it is for the patient's protection from infection, etc. But when John saw those small knicks on Noah's legs and stomach, it was all he could do to keep his hands to himself. I was proud of the way he handled the situation. (Before that we had been told by a different Dr., once again, that the investigation board was not certain they had found the cause of Noah's burn, and they may not ever come to a definite conclusion. That was like throwing oil on fire.) All throughout the day I had to keep telling myself that other people have been in our shoes...and much worse. We can make it through this, and we can do it in a godly way. We just had to keep asking the Lord to guide us...and it ended up being a great day - Noah did well in surgery; he didn't need a skin graft; we were able to come home to our own beds.
On a different note - Thursday I was making preparations for our trip to Birmingham and decided to take our cat to the vet (she had fleas and needed shots). I dropped her off and planned on leaving her for the night since we wouldn't be home. I received a call from Dr. Pitman around 5 - our cat had FIV, or kitty AIDS! He told me that with all we were going through we didn't need this, and Noah definitely did not need to be around her; he could get a bacterial infection. Jones had to be put to sleep...another unexpected bump in our plans. Dr. Pitman so generously offered to take care of her for us, with no charge, and bury her little body so we didn't have to come get her and worry with that. We are SOO grateful to him and his staff for having compassion on us and helping us out in this way. During our wait yesterday, I discovered online that only 2% - 3.5% of all cats in the US contract FIV. 2%. I believe that we heard about 4-5 times yesterday, "this typically doesn't happen but you should be aware of this risk...." I don't want to hear that anymore! For the past 3 weeks events that have occured in our lives "typically don't happen." They told us there was a small chance that Noah's lung could be punctured during the port procedure...I prayed really hard during this surgery! Praise God that He kept Noah safe and everything went well.
I don't know why these strange things keep happening...why God has allowed them to happen. But I do know that John and I will continue to call on the name of the Lord, because He is the source of our strength. If we didn't have Him, His word, and our brothers and sisters in Christ we would be crazy!
Thurs 12/10 - Jess
God sent His Son, they called Him Jesus; He came to love, heal and forgive
He lived and died to buy my pardon, An empty grave is there to prove my Savior lives
How sweet to hold a newborn baby, and feel the pride and joy he gives
But greater still the CALM ASSURANCE this child can face uncertain days because He lives
And then one day I'll cross the river I'll fight life's final war with pain,
And then as death gives way to victory I'll see the lights of glory and I'll know He lives....
Because He lives, I can face tomorrow; Because He lives all fear is gone...
Because I KNOW He holds the future, and life is worth the living just because He lives!
The constant reminder that God holds my son...our son...in the palm of His hand, that His protection surrounds him, that I can have calm assurance knowing that because Jesus lives Noah doesn't have to worry about his future...this gives me peace and floods my heart with love.
This is becoming my online journal I suppose, but I had to this down. He is so good and constantly giving us encouragement through many different ways. It's going to be a good day! :)
Wed 12/9 - a short note from Jess
We have a pretty "musical" family; we loves all genres. John and I both grew up immersed in anything music related, and we want the same for Noah. Right now he loves Michael Jackson and will dance around the house yelling, "Woohhh!" when he hears his favorite song. I've just recently picked up playing the piano again, so I was thumbing through my old Baptist hymnal, butchering most of the songs I attempted to play. :) I came to one that I'm sure is an old favorite for many. The words brought tears to my eyes, and I was encouraged in a way I never have been before by this great melody. Christ is my Rock...I will not be shaken by disappointment or grief, anger or sorrow. Here are the words penned by Edward Mote:
My hope is built on nothing less than Jesus blood and righteousness,
I dare not trust the sweetest frame, but wholly lean on Jesus name.
When darkness seems to hide His face, I rest on His unchanging grace.
In every high and stormy gale, my anchor holds within the veil.
His oath, His covenant, His blood, support me in the whelming flood.
When all around my soul gives way, He then is all my hope and stay.
When He shall come with trumpet sound, oh may I then in Him be found.
Dressed in His righteousness alone, faultless to stand before the throne.
In Christ the solid rock I stand, all other ground is sinking sand, all other ground is sinking sand!
I hope these words speak to someone else who is trying to stand strong in the "flood." He is our Rock!
Wednesday December 9th
Our first appointment was with the burn Doctor who took one look at his arm and said she wanted to fix it as soon as possible. So Noah has surgery this Friday. It will be a skin graft taken from his hip. The Neurologist Nurse came down, looked at his stiches and head and said it would be great to install a port for chemo in his chest at the same time. Then we took him to the Oncologist and she wants to do a spinal tap to make sure there are no free roaming cancer cells in his spinal fluid. So on Friday, Noah is getting a three - in - one surgery. We feel pretty good about it because it saves him the pain of getting ready for these procedures by two times. I know he will be very sore and uncomfortable when he wakes up which only means one thing - unlimited ice cream! (And by the way as you can see in the picture he is eating a corn dog, He has gained 4 pounds since the surgery!)
In speaking to his oncologist today we learned his pathology report had been sent to one of the best pathology Doctors in the world at Johns Hopkins Hospital. They are awaiting conformation before finalizing the plan of action. We discussed what kind of treatment they are recomending and how long it might take. Chemotherapy treatment has come long way in the last years and they have a lot of confidence that we could be finished with the threat of cancer in 6 months to 1 year.
It is so odd saying my son has cancer. It doesn’t seem to make sense coming out of my mouth. The last 24 hours have been a little bit difficult for me spiritually to be honest. You know that feeling you have when you’re pretty confident that things are going to work out one way, and then they totally don’t?? It's not a good feeling. I know many of you reading this perhaps had the same feeling as I did. So many people praying the same thing all over the place and God still says no?? Man - what a disappointment. I have no problem saying it. I am extremely disappointed. I had very high hopes that we had come to the end of our trial. But it is not the end. Not by far.
During these last few weeks, different parts of scripture have suddenly begun making sense to me. I have been in church all of my life, heard countless sermons and read many books and bible studies. Many parts of the bible I can quote you the scripture, but not really sure why it's there. I can give a text book answer for why it's there, but when it is time for scripture to really come alive in your heart, it is only the Holy Spirit that makes it happen. And that’s when it becomes Rhema.
I have read this passage a lot of times. I have understood it to mean Jesus was tempted in the same ways I am - in anger, lust, greed, pride, doubt, envy etc... and that He can identify with my struggles,
Hebrews 4:14-16 Seeing then that we have a great High Priest who has passed through the heavens, Jesus the Son of God, let us hold fast our confession. 15 For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin. 16 Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.
But I have never thought about Jesus being disappointed in God saying no to a prayer He prayed.
Matthew 26:38-40 Then He said to them, “My soul is exceedingly sorrowful, even to death. Stay here and watch with Me.” 39 He went a little farther and fell on His face, and prayed, saying, “O My Father, if it is possible, let this cup pass from Me; nevertheless, not as I will, but as You will.”
Jesus knows what it is like to want one thing from the Father, to pray for it, and receive a NO for an answer. I have thought about this scripture all day. He asked "let this cup pass from me" and God said "No”.
I have never noticed that God said No to his own prayer. I have read this time and time again, but it really didn’t make sense to me until today. In order for us to have a High Priest who can identify with us in every area, He must know what it feels like to go through such deep disappointment, to have a prayer not answered, and still be able to say "Not what I want, but what You want."
I still have no right to be upset with God. I can still trust God. I can still lean on God, I still have hope in God - My faith is still in God to heal Noah. Oh God, Not our will, but Yours be done in Noah.
We covet your prayers during this time. I am asking specifically that you pray for Noah to remain full of joy and peace as he goes through this treatment, that Jessica and I remain strong, that our light shine and that God be glorified through this season of our lives.
To God be the Glory, Great things He has done.
Pathology report: 12/4, 2pm
A quick note about my statement of being disappointed about the news segment last night: I was frusterated that we had so much good to say and it wasn't broadcasted. I do however want to thank all of the staff for the hard work they put into the segment; I know it wasn't easy creating a story from nothing in a matter of 4 or so hours. Maybe in the future we can do a story on the miracles that have occured as God is bringing us through this difficult situation. Anyway, I appreciate the channel 19 news team and apologize for my candidness last night. :)
Here is a short excerpt from a book we were given at Children's called Childhood Brain & Spinal Cord Tumors, a Guide for Families, Friends, and Caregivers by Shiminski-Maher,Cullen and Sansalone: "PNET and medulloblastoma were once considered the same type of tumor that arose in different locations in the brain. Historically, medulloblastoma was the name given to this tumor when it grew in the posterior fossa and PNET when it grew outside of the posterior fossa in the cerebral hemispheres. For many years, the two names were used interchangeably regardless of where the tumor grew. Recent research has shown that the two tumors are biologically distinct. However, they are usually treated the same, although some institutions are using high-dose chemotherapy with stem cell rescue to treat PNET."
I will post the excerpt about medulloblastoma later tonight; I'm sure you can find tons of information online also. We still have hope, and we still trust God's plan for us, and we still believe Jesus is Noah's healer. Praise God for His soverignty; we don't have to worry about this.
Waiting for Tuesday...
John posted on facebook that a guy from newschannel 19 showed up at our door today around 1pm - unannounced by the way - and wanted to do a story on Noah. We accepted, and suprisingly Noah cooperated during the entire shoot! We talked mostly about the miracle of Noah's story and how the Lord has helped us through the entire process. We talked BRIEFLY about the burn Noah received. What we saw on the 6 o'clock news only spoke of the burn Noah received, and hoped the 10 o'clock news would offer up the ENTIRE story, but that didn't happen. I guess "controversey" is all that they were after. I'm deeply dissappointed in the outcome of the interview; I've been very nervous about the entire burn situation with the Athens newspaper and now the local Huntsville newstation becoming involved. Children's Hospital helped to save my son's life, will continue to treat his medical condition, and I want no ill repute with them. We've given them an opportunity to make this right without taking legal action, and I have faith that they will. I just hope that they don't feel that we have instigated these reports in order to make Noah's situation more "public."
That being said, I'm off to bed. :) We should receive the pathology results in the morning - keep praying! We will post the news as soon as we have it! Here is a scipture that has comforted many times in my Christian journey, and I'm falling back on it tonight: "Wait on the Lord; be strong and take courage and wait for the Lord" (Psalm 27:14). He hasn't failed me yet - and I know He never will. So I will wait on Him to bring good news in the morning!
Well folks, we are still waiting for the pathology report. We will be calling the Doctors office in the morning and should have the answer. Thanks for praying and checking in. We wait for good news!!!
Monday 12/7 Mid day - - - Waiting.....
(Romans 5:3-4 We also rejoice in our sufferings, because we know that suffering produces perseverance; 4perseverance, character; and character, hope.We did have a great few moments at church yesterday. We were able to take Noah to the 11 o'clock service at Friendship. We were not sure how he would react to all of the people. He did ok for about 30 minutes. Jessica took him home after that so we didn’t get to say goodbye to all of our friends who wanted to see him. But at least we got a little bit of time with him there. That’s a huge lesson I have learned from this. Maximize the time you have and celebrate every moment!
As you can see, daddy got a new hair cut. Noah was very attached to his hair. He has been rubbing his new bald spot every day with a sad face. He doesn’t like to look at himself in the mirror. So I thought I would get a matching cut. (He likes to rub it.) Since seeing me we have laughed a lot about our weird hair. I hope this will help him deal with the many changes he is experiencing.
Please pray for him today. We hope to get the call soon.
Friday 12/4 No news about pathology - but we did get a burn update
I did receive a call today from Vickie Atkins, Patient safety / risk management officer at Children’s hospital. They still think it was the space blanket (Thermoflect is the product name www.thermoflect.com in the picture above ) which was placed on Noah metal side down. It was not the warming blanket. She assured me the hospital would take care of everything and even said she was mailing a letter to confirm it. She said they would contact the EPA and tell them about the incident and make sure these blankets never get near an MRI again. The blankets have been removed from the MRI unit at UAB and they are taking every step they know to insure this never happens again.
I would like to thank Athens News Courier for their story on Noah's burn and for also contacting the hospital to get their comments.
God assures us in His word that if we allow Him, He will take care of us. It seems very unnatural to not step in and follow what the world does in similar situations. We know that God has a plan in all of this and that He is taking care of it.
It was today two weeks ago that Noah and our lives were changed forever. I will never forget that moment when Doctors walked in, sat down and told us about his tumor. Through all of this I have learned the value of something that has been in my life all along but I took for granted. That thing is - Family.
First of all our immediate family. They have been such a source of support and strength. It is in the moments of tragedy when you really realize that family is so very important. They sat with us all night in the waiting room of the PICU, stayed with us for days just to be there to help and pray, They were there to cry with, laugh with and sit with. For those who don’t have the blessing of family like we do, I don’t know how they make it.
I say this to encourage you - reader, that if you are at odds with your family - do whatever it takes to settle it. You need them and they need you. God gives us family because He knows we are designed to help each other and lean upon each other in times of trouble.
Secondly I realize the importance of friends (second family : ) When you go through trouble you really see who your friends are. For everyone who has called us, visited us, reconnected after long years apart, sent us encouragement - we love you so much. I couldn’t imagine walking through these last two weeks without my second family holding up our arms through so many encouraging messages and your prayers.
Our church family - Friendship Church in Athens - You hear all the time "You don’t have to go to a church to be a Christian" I agree with that. It is only the blood of Jesus Christ and His death and resurrection that insures us of salvation when we give our lives to Him, not going to a church. You don’t have to go to a church - but I can tell you this, God designed the church to be like family. He designed it to be a body, and when one part of the body hurts, the other parts jump in to help. What a blessing to have such an awesome family!!!! If you are not a part of a Bible believing church - you are really missing out.
Friendship - You have helped us so much with prayer and encouragement and support. God has and will continue to use you to be His hands and feet. So to you - reader - if you’re not a part of a good Christian family, don’t stop searching until you find the place God wants you to be because believe me, when tough times come - you will need them!
To our community on face book and those who have contacted us through this site - We may not live near each other, we may not really know each other but know this - we love you. So many people we have never met have sent us messages of hope and encouragement at just the right time. I own a blackberry. You have no idea how many times I would feel a moment of weakness or frustration and see that red light on the phone blip and look at the new message or email God would use to strengthen our legs one more time.
I talked to a few people today who commented how "great a faith" Jessica and I have. I don’t really understand that comment. We believe that God is the one who gives us faith when we need it. There is nothing special about us; we just serve a very special God who has chosen to lead us down a path that is difficult. He has never left us, and has not forsaken us. His peace has guarded our hearts and minds and His Holy Spirit has given us comfort in our most desperate hours. He has used our family, friends and church to encourage and speak to us and to provide many of our needs. If you trust in Him, He will lead you and provide and protect you and give you wisdom and self control, you can walk through situations like ours and even ones that are worse.
So to sum up today’s thoughts -
1) If You haven’t given your life to Christ and trusted Jesus as your savior, you need to do that. He is the way, truth and the life. No one comes to the Father (God) except through Him. He is the only thing in life you need.
2) Get your family junk sorted out because very soon either you will need them or they are going to need you
3) Get into a Church family, one where you can bless others and that can be a blessing to you. One day you are going to need them, and they are going to need you.
4) Don’t be afraid to use social network sites like face book to witness your faith or be an encouragement. I tell you the truth, I have heard from God so much because of that web site! Let your light shine on the web.
I didn’t mean to get preachy, but sometimes you just got to say what's on your heart.
We hope to hear on Monday what the pathology lab finds out. Until then please keep praying.
Love John David
Thursday, 12/3...We're Home!!! -Jess
Being home has been great; there is now some normalcy back in our lives. Even so, I've realized that nothing will be normal again. All day long John and I have been jumping at the sound of the phone ringing, hoping it would be Dr. Wellons or his nurse with the pathology results...no such luck. So, we'll just keep praying and expecting good news to come tomorrow.
Oh, by the way, Noah decided to walk last night! He slid off the couch, grabbed John's finger, and took off to change the DVD he was watching. Still a little wobbly, but he was pulling up his left leg, and placing a considerable amount of his weight on it. (A HUGE improvement from even Tuesday's PT session.) Praise the Lord, this child will be running before we know it.
For some reason, tonight I am at a loss for words as to what I should write in this blog. The only thing in my mind right now is the scripture from Matthew chapter 17: "When they came to the crowd, a man approached Jesus and knelt before Him. 'Lord, have mercy on my son,' he said. 'He has serizures and is suffering greatly. He often falls into the fire or into the water. I brought him to Your disciples, but they could not heal him.' 'O unbelieving and perverse generation,' Jesus replied, ' how long shall I stay with you? How long shall I put up with you? Bring the boy here to Me.' Jesus rebuked the demon, and it came out of the boy, and he was healed from that moment. Then the disciples came to Jesus in private and asked, 'Why couldn't we drive it out?' He replied, 'Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, Move from here to there, and it will move. Nothing will be impossible for you.' " (v14-23). Right now my husband is praying ceaselessly for our son. Cancer is our demon. We are believing in faith that the Lord will drive it far from Noah. We know this mountain can be moved by our faith...if the Lord choses to grant us that. But if He doesn't....we will still continue to fight this battle, knowing that He alone is faithful. This is a daily battle and we are so grateful for all the prayer warriors that are fighting with us. We can't do this on our own, and we praise God for the support that has been given by so many. Because of the prayers of faith of so many, maybe one little boy will receive a healing that will bring glory to the Lord even beyond the days of his life...this is my prayer of faith.
WE ARE HOME!!!
Jessica is going to write the big blog tonight. I mainly wanted to tell you about something the Youth Group at our home church - Friendship - is doing. To help remind people to pray for Noah and help offset Noah's medical cost, the youth ministry is asking for a $5.00 donation for the PRAY FOR NOAH bracelet. The color grey represents brian tumor awareness and research.
If you would like some of these bracelets, you may contact Friendship Church in Athens Alabama 1-(256) 232-4906 or email the youth Pastor Jody Hooven Jody@friendshipumc.org
Thanks for all of your prayers and encouragement and contributions. God has really shown Himself faithfull through all of this.
We serve and awesome God!
Tuesday November 31st
Tomorrow we will be going home!! Noah has recovered so well that his doctors are letting us go home. He will begin therapy soon as we get home to get everything working back to normal. We met with speech, occupational and physical therapists today. Some things he hasn’t lost - like most of his speech and motor movement in his right arm. He will have to learn to walk again. It was a very hard thing for me to watch him not be able to stand on his own. But after everything he has been through I am glad that is one of the few problems we know of so far. I have heard some stories from some amazing parents these last few days. They have called us to encourage us and help us maintain hope. Their stories have inspired Jessica and I and have also made us realize just how blessed we are that Noah has recovered so quickly, He is still weak and swollen but he has got a lot of fight in him. I praise God for His mercy and goodness and that Noah is still here and has a future and a destiny!
This morning we laughed a lot, ate breakfast together, played with some toys and watched Elmo. The Doctors came and examined him and told us to expect to leave sometime Wednesday. I was so thrilled. After they left I asked the nurse if we could speak to someone from the burn unit to help us know how to tend to Noah's arm. They arranged for one of the nurses and a burn Doctor to come up. This is where our day turned sour.
I have received several emails about this blog where people have thanked me for my transparency. I have put off writing tonight because I really don’t want to be transparent but ... here goes anyway, I've got to vent!
All this time, nurses from the burn unit have been tending to Noah’s arm with bandages and a cream called silver sulfadiazine. It helps the burn heal and also sooths the skin so he won’t hurt as bad. We thought that this treatment was the only thing Noah would need in order for his wound to heal. When the Doctor took a look at Noah's arm, she remarked that the burn was so bad; he would need a skin graft. She explained the burn had gone deeper than the hair follicle root and the skin would not grow back, they could wait for six weeks to see how it would heal on its own then try to sew it together, but she told us it more than likely wouldn’t work. A skin graft was the best solution. Man - this hit us hard. Noah has an appointment next Wednesday with her to evaluate and set up the day for the graft. This is another procedure where he will be pricked, cut and put to sleep for. He will have skin removed from his buttocks or thigh. I can’t tell you how upset this made me.
Talk is so cheap these days. If we are to check out and leave the hospital Wednesday, I wanted some assurances that what Dr. Young told us in the MRI would be honored - that the hospital would take care of everything concerning Noah's burn. All costs, prescriptions, travel reimbursement and whatever else goes with it. The Doctor told us she would get a representative from the hospital to come talk to us. I took a while and I had to ask our nurse to make a phone call to get them to our room. When they got there they told us the strangest thing.
They made the remark that they didn’t believe Noah's burn occurred in the MRI with the space cloth like we were told before by the scientist, but instead it may have happened in the recovery room after they laid a cotton towel on him. The towel had been in a warmer.
I couldn’t believe my ears. It was probably the stupidest thing I have ever heard. Jessica and I were very insulted. We may not be scientists or physics majors but we are intelligent enough to know how hot something has to be to burn to the third degree.
Before I go on I will say that this was no scientist or technician who reported this to us. So perhaps she left out a ton of information. And I mean a ton. And by no means am I saying these people are stupid or uncompassionate or un-empathetic. They have a job to do and are doing it their best. We just wish we could talk to the boss who gave them this information.
The last time I checked a cotton towel cannot burn to the third degree unless it is on fire itself. And if it was in fact a towel or heated blanket, why in the world would you heat one up so much that it could burn through every layer of skin??? And how is it that it only burned one part of his body - and how how how how did you figure we would believe such a thing.??? We are wondering - "Is there something they are trying to cover up?" Why change the story?
We felt a great sense of closure last Wednesday morning when Dr. Young sat us down and explained their findings. He said that the anesthesiologist had placed a blanket on him to keep him warm before going into the MRI room and it contained aluminum, The MRI staff did not remove it and they think it reacted with the machine and it arced and burned his arm, now they change the story?? What’s the point? They say they tested the blanket and it doesn’t react to electric charge. I wish I could remember the name of the blanket. Perhaps some of you smart guys out there could help me out. (It has a blue cloth top and the bottom is shiny & reflective.)
I really wish they could recreate the scenario they are talking about because I really want to see this super heated blanket they say burned him. Remember - they did not say it was an electric blanket - they said it was a blanket that came out of a warmer - something to warm the blanket -
I grill a lot at home and I know how hot something must be to sear and burn. If the person who put it on Noah's body could not tell that it was too hot, then obviously it didn’t do it. If they did know it was too hot then they should be held liable and face criminal charges. If it were so hot, how could they even hold it?? All of these questions raced through my mind.
If the hospital would give us a clear definitive answer to the cause of Noah's burn - that would be great. Something that makes sense and isn’t absurd.
If they could guarantee in writing that Noah will be taken care of in every area that would be great - we haven’t got anything like that yet - only the word of mouth and as you know these days - talk can be very cheap.
As you can tell I am upset. I have already taken two walks tonight and have held my tongue and my anger. Thankfully Jessica's uncle John was here for a time and it really helped to have him in the room while I was talking to a hospital representative. Jessica said I did alright which means perhaps I didn’t say things out of my anger.
You know, we had such a good morning and were having such a good day until all of this. Now frustration comes to spoil the celebration that we have in Noah’s swift recovery.
As I took my long walk tonight I began hearing that "still small voice" of the Holy Spirit. "Cast your care upon me.... take my yoke upon you.... Don’t worry about your life...."
I realize all these frustrations are on my shoulders. I must give them over to God and let Him handle my family's situation. He can deal with them a lot better than I can. My thoughts tonight as I walked shifted to the Israelites on the boarder of the promise land. Twelve spies went in to check out the land. Ten came back saying the people were too great to be overtaken, two believed God and said "let’s go! The battle is the Lords!" (My paraphrase) The ten held their fears and frustrations on their shoulders and allowed them to dominate their actions and decisions. Joshua and Caleb, The two spies with a good report, believed God would fight for them and give them victory. I know that in my frustrations here I am in no way in a fight like Joshua and Caleb, but I am in a fight. I am fighting frustrations, doubt and fear. I fear that the hospital won’t honor their promise since we have nothing in writing, I am fighting doubt - holding on to hope for a good pathology report, and I am fighting frustrations with these answers that make no sense. It all adds up to a lot of stress to be honest.
God tells us to "Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. 7Cast all your anxiety on him because he cares for you. Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour" 1 Peter 5:6-8
Notice the devil prowls looking for an opportunity to devour us, steal our faith, our witness, our joy, our hope and our peace. But God has a mighty mighty hand that we are to stay under. We cannot handle the frustrations in this life on our own, the best thing to do is to stay under God's hand and let Him handle it for us. If we step too much in the way we mess it up. The ten spies did, they stepped in front of God and told the people false information.
When fear comes, most of it is false or bad information, when frustration comes, unless we give it to God we can’t see our situation like he sees it.
I must remind myself that this burn on Noah's arm did not happen by chance - God allowed it for a purpose. It's not my place to question and ask "Why God?" What I must ask is "What now??"
We are leaving Birmingham tomorrow after meeting some of the finest medical professionals in the world. God used their hands and this hospital to save the life of our son. We are so very thankful for those who work in the PICU, the surgeons, the nurses and staff. We are thankfull for this Hospital, We have seen some big miracles here,
Our biggest hurdle is next - the phone call that will ultimately change our life. The pathology report. We pray for a good report - Gods will be done!
Please pray that in all these things God will work it out for good and be glorified. Pray that Jessica and I will represent Christ even when we are angry, "In your anger do not sin" Ephesians 4:26
please pray we will really get a closing answer on this burn mess.
But most of all Pray For Noah - That He will be healed and God would get the Glory for this! Pray that God would mold him to be a man after His own heart. Pray that God would use this do change the world for Christ!
God bless you!
Noah's got a brand new do!!
Today was a great day. Noah had the tube removed from his head that drained the fluid off his brain. This morning’s CT scan showed his body working just right managing the fluid level and pressure on its own. He was also disconnected a bit more when they removed the IV from his right ankle. Tomorrow they will remove the GI tube running down his nose into his stomach. One day at a time, one step at a time we are seeing progress. Progress feels good.
Noah began physical therapy today. We worked with his right hand and his neck. He is having some trouble sitting up. They tell us it's a result of the surgery and should go away very soon. He was able to reach out and grab everything the therapist wanted him to, hold it and even put pieces into a puzzle they were working on, it takes a little longer with the right hand and he isn’t as strong as the left, but at least its working! We tried walking and he couldn’t get the right foot moving well enough to take a step. Noah is going to be a fabulous drummer one day - so let’s get praying on that foot.
We laughed a lot this evening, so much that I really began to recognize my little boy again. Let me explain that statement. Seeing him all swollen and moaning and crying all the time with tubes and bandages all over him made it hard to recognize my son. For those of you who don’t know Noah, he loves to laugh. I mean He LOVES to laugh! The cutest thing I think he does is playing jokes on us at home, like hiding. (He will open a closet door and go in and shut it to hide from me.) He likes being chased and being surprised and he loves being tickled. Not seeing him in the normal state has been very hard for me. Noah is my buddy. We play a lot together. We were told that after a brain surgery, his personality might change; He may not be the same little boy we love and know.
He sat in his bed and laughed tonight at Jessica as she played with him. I just soaked it in. I realize tonight that if we had not gone to the hospital and had him examined last Friday, that by today we would have already had his funeral and I would be wondering how to make it a day without his laughter in my life. Jesus said in Matthew 6:19-22 (NIV) 19"Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. 20But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. 21For where your treasure is, there your heart will be also.
I know that the main point of this verse is not about spending time with your family. But I see in it a truth that I have ignored. I admit that I am somewhat driven. I spend a lot of time doing a lot of things I consider important. I have close friends who for years now have said "John, You have got to slow down - You’re too busy" I am driven for success. I want it - I feel I need it. It’s a treasure to have - but a treasure here on earth only. And at what cost? In my efforts to be as good as I can at what I do I have sacrificed so much valuable time with my family. As I type this, tears come into my eyes because it has taken something as drastic as this to make me realize that success will never be more important than the quality time I have with my family. I could be the most successful man in the world, but I would trade every bit of it just to hear Noah laugh. God has used these days to rearrange my priorities.
"For where your treasure is, there your heart will be also" Again, I understand the main point Jesus is making in this passage, but he has also used this passage to reinforce my heart that my son and my wife are treasures, and that I should treat them as such. I should cherish every moment I have to chase Noah and laugh with him. I should take every opportunity I have to play with him, teach him and just be with him. I should cherish every moment I have to love my wife and spend time with her. These treasures are more valuable than any title, position, power or amount of wealth in this world;
We came close to losing our son ........ But for the grace of God. I hope from now on I will no longer loose time laughing with, loving on and living with my son and my wife. Besides living a life that honors Jesus, there is nothing more important.
Many of you who have followed this blog have contacted us telling us how this has ministered to you. We are so humbled that God would use this situation to speak to you. We are very thankful for your emails. As you can imagine, there is very little time in the day to respond to them all, but as we have time we hope to write all of you back. Your encouragement has been so valuable. Thank you for taking time out of your life to minister to us. God has used it to strengthen us when we have felt weak.
God Bless you all!!
P.S. I know he may get mad at me saying this, but if you want a great stylist, look Grant up in Huntsville. He and his wife are one in a million!
Sunday November 29th
This week has been so long. It seems we have been here for months. So many things have happened in our lives that we were agreeing today that nothing will ever be the same again. Coming home to Athens will be so great, but it will be different. We have a different outlook on life, different priorities, and even different values. Noah one day will ask us about this week. He will more than likely not remember any of it (thank God). But Jessica and I are forever changed. We have seen the hand of God move in such a way that it can never be explained away by chance. We have felt heartache like never before and experienced the peace that really passes understanding. We have wrestled with doubt - taken captive bad thoughts - spoken God's word in faith - really taken it to heart the words of Jesus "And which of you by worrying can add one cubit to his stature?" Luke 12:25 we have seen the devil work against us to distract us and try to cause us to lose our focus and our faith.
I was thinking about these things this morning. James 1:12 NIV says- "Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him" There will never be a trial in our life where God is absent or unaware of our situation and our suffering. In fact - God sets the boundaries of our trial - how far it can go and how much we can handle. Jesus spoke to Peter in the book of Luke 22:31-32 31 And the Lord said, “Simon, Simon! Indeed, Satan has asked for you, that he may sift you as wheat. 32 but I have prayed for you; that your faith should not fail; and when you have returned to Me, strengthen your brethren. Do you think that was a onetime occurrence? I don’t. We all know what Peter went through and how God restored him - even used that story to restore countless others who have walked away from Him. I believe the enemy still approaches God and asks who he can sift. Sometimes He chooses us. When our name gets called, we have to believe that God sets the boundary. I know that God has allowed this to happen for a reason. Many could say He is cruel and unjust to allow a little boy to suffer. I have been tempted to meditate on this thought and many more like it. But who are we to question the will of God? Romans 9:20-22 (NKJV) but indeed, O man, who are you to reply against God? Will the thing formed say to him who formed it, “Why have you made me like this?” 21 Does not the potter have power over the clay, from the same lump to make one vessel for honor and another for dishonor?
God has his own plans for these events. God has His own reasons for this happening. We don’t have the right to ask "Why me?" what we need to ask is "What now??"
As I type this, my wife lies sick on the bed in this hospital room unable to stand up, my son lies in the same bed he has been in for over a weak, recovering from a surgery that has drastically changed his life. He is facing the threat of cancer. He has a third degree burn on his arm causing him pain & discomfort. I feel weak and stressed and am battling a hoard doubt and worry in my thoughts. I know that boundary lines have been drawn by the Father and that the enemy is right on the edge of that line. But in all this
BLESSSED BE THE NAME OF THE LORD!
God will see us through the hard times in life just as He sees us through the good times!
We have a big hurdle to overcome - the pathology report. Please pray and tell everyone you know to pray that God would give us a good report.
Thanks again to all of you prayer warriors from 5 years old to..... You know how old you are.
I have received numerous emails from people who have dedicated their lives to Christ though this experience, To God be the GLORY - Great Things He Has Done!
Thanks also to those who have followed this blog and have become family to us through this ordeal.
Thanks to the Athens News Currier for the story on Noah and to faithblessingphotography.com for providing the photo.
God bless you all!!
Noah - lookin hardcore! Saturday night Nov. 28th
Well we are in our room tonight free from alarms, buzzers, phones and constant light and talking. Noah has been in a room (the PICU) with 24 hour light for 6 days straight. He also heard constant talking and noise so needless to say he is completely exhausted. He has slept so well this afternoon and we are so thankful.
We have made it through some pretty big hurdles this last week. We are breathing a sigh of relief right now because of the blessing of being with him in a room 24 hours a day and the peace that comes with it. It is a great room with a good place to sleep for one of us and a very nice bathroom.
The big hurdle comes next. Noah had a tumor - which could mean cancer. His pathology report comes back this week.
We are asking for every person possible to pray and ask everyone they know to pray for a negative report of cancer. We do not know what day the report will come but until then - Everyone pray!
He has recovered so well which is only because of His heavenly father. We believe his recovery will continue and be a testament to all who hear that the God we serve is indeed the one true God and that He still works miracles!
Saturday 11/28 - Noah is 22 months today!
Ahhhhh.....It's about 1 pm and Noah is sleeping soundly in his own room! Praise God! John and I feel as if 5 pounds of burden have been lifted from our shoulders. The lights are low, it's quiet...no screaming, no beeping...just peace.
Early this morning Noah had a ct scan, Dr. gave the ok, so we're free from PICU! They removed the turban, as you can see in the picture, but he will keep his drain in for as long as it's needed. John wants to shave the other side of his head and leave a mohawk....we'll see. :) One of the neuro surgeons stopped by the PICU this morning before we moved, and really encouraged us that Noah is progressing very well...his words were "considering the situation, he's doing wonderfully." We are soooo blessed, and we're giving thanks for the "win" we've had today.
We are in room 687, but we've decided not to have any visitors today until Noah gets settled in, used to the new room, and until he understands that either Mommy or Daddy will be with him at all times. Hopefully when he wakes up we can clamp the drain, find a comfy chair and I can hold him for a while...it's been 5 days. Last night and this morning were really rough for me, as far as thoughts and what-ifs...I was remembering times when Noah had wanted me to play with him, or hold him, etc. and I had "other important things" to attend to. My arms, and my heart, ached for him. As far as "what if's" go, I've been reading some material we were given by our social worker on brian tumors - statistics, types of tumors, etc. - and this new education is doing a number on my mind. I don't think I've mentioned this before, but my father passed away when I was 6 years old from a brain tumor. Needless to say, when I hear those words I equate them with death. When I first found out about Noah, I really had to rely on the Lord to sustain me - mentally and physically. I know medical science has changed so much in 21 years, and it really is amazing how people can recover from this situation...but the enemy is using that experience in my life as a means to impart doubt. So I have a constant battle in my mind, but for seven days I have won (the God of peace will soon crush Satan under your feet, Rom 16:20)! I know that my son is beyond a statistic, because John and I have placed his life and his spirit in God's hands. The Lord is working in him, and apparently THROUGH him...He is turning what could be a bad situation into good, for HIS glory.
Thank you for your continued prayers, and we will continue to keep udating the good news!
Friday November 27th
He was still frustrated at the bandages around his head. If you have ever had a surgery, you know that sometimes stitches can itch and become irritated. He wanted to scratch and pull of the bandages all day. Our nurse during the day was Suzan. She had a great idea. She went over to the burn unit and grabbed a mesh hat - kind of a net - to put over the bandages. Worked like a charm, He was no longer able to pull the bandages off and that gave us a little bit of relief. Noah was talking more today than ever. He would wave bye bye and say it to those he didn’t want around. He even was holding his sip cup with his right and left hand, something he couldn’t do before surgery. He is improving with every moment. We pray this keeps up. The kept him in the PICU again today and tonight. We have accepted the fact that we can’t be with him 24/7 which as any parent knows is so hard. He managed to push himself up on his knees this afternoon and reach for me in his bed. I took him in my arms and sat down in a chair with him. This was the first hug he has had in four days. We are a very affectionate family - I realized this was more than likely one of the big things he wanted yesterday. I didn’t know if I could sit down with him but the nurse gave it an ok and adjusted all the tubes and wires and we had the best 30 minutes of the day. He sat in my arms so calm and peaceful. But six o'clock rolled around and there was a situation in the PICU with a child so everyone non staff had to leave. Putting him down was heart breaking. I had to walk away while he was screaming my name. He doesn’t understand what's happening when we leave and that is so hard to deal with. The PICU has been closed ever since. So we missed our visit from 8 - 10 and more than likely 12 - 2. When they have to do emergency procedures on kids in there, no one can be around. We called his nurse every hour to check on him. Thankfully she said he was calm and that she was by his bedside taking care of him. Praise God.
It's difficult to let go of control and trust that he will be ok. It's difficult to let go of control of anything. As we left tonight, Jessica said to me "when Jesus spoke to the disciples and said follow me, they dropped everything and went after him. They didn’t get to choose their path; they just did what He asked them to do. They were walking by faith" That’s giving up control. To be put in this situation where we have little or no control has taught us a little bit more about faith. We are both control freaks, so naturally this goes against everything we want - God's ways are not our ways.
We are learning that to say YES to God is to say "I will follow you and go through what you want me to go through with blind faith." We can only trust that God is and will take care of Noah - in life and in death.
Hopefully we will be put in a real room tomorrow. This means that tonight is the last night for a while that Jessica and I will be together. One of us must stay at the Ronald McDonald house at night to secure the room and one of us will be with Noah. We will rotate the nights. This is another thing we have to trust God with. Noah is the main priority. His healing and recovery are what is forefront on our minds. We also realize that our marriage will also be tested in this trial. Pray for us so we can be strong for Noah.
There is so much heartache here. We left the waiting room with families everywhere devastated with disaster. A sweet couple that had been told their 4 year old may not make it 48 hours. A sweet mother with a child fighting sickle cell anemia, A couple that has been here for 3 weeks with a daughter fighting for her life only to be set back with a stroke. And the stories keep coming. On top of it all, we witnessed a dad who trying to escape pain, got so drunk he was passed out in a chair in the waiting room. The police came and escorted him out of the hospital and banned him from coming back. He can no longer see his son.
The odd thing about today is that in the midst of all this pain, at 3:30 during closed visitation hours, we had a short moment of normalcy - the Auburn/ Alabama game. It was a bit odd. Several of us sat under the TV watching, commenting and even letting out a few quiet cheers here and there. It reminded me that there is still a world out there still moving on - a world we will get back to very soon. As soon as 4:00 rolled around we shot out of that room and all of us were back where we really wanted to be - at our kids beds. It really put things into perspective - there is nothing more important that taking care of your family. Even though today was a big game, it was still just a bunch of young men pushing each other around trying to get to a small leather ball hoping to win a game and get some bragging rights. For once in my life I really could care less who won that stupid game, all I wanted was to hold my son and see him smile. I hope I will always have this as my priority and never put anything in front of my family.
As I close for the day I need to say thank you. Thank you my facebook family - Your encouragement and prayers have kept Jessica and I standing. You have no idea how much of an impact you have made in our life with your "just in time" words of comfort. There are too many miracles to mention regarding this so I just say thank you to all of you!
To our wonderful family at Friendship Church in Athens - the video you made for us was one of the greatest gifts ever! We laughed we cried, and we felt your love and we know Noah will never be able to misbehave in that church and get away with it because he has 800 family members who love him!!!!!!
To all of you who have given to us to help with our medical expenses, words cannot do justice to our gratitude. We are so humbled that you love our little boy so much. Thank you from the bottom of our hearts.
Below is a video I made some time ago for a teaching on discovering God's will. It is about Noah and I wanted to share it with you. I hope it blesses you and that God would use Noah to speak to you.
Goodnight all - thanks for the prayers and for being part of our family - we love you!
John & Jessica .......... and Noah!
Thursday (technicaly Friday morning 12:08 am)
Jessica and I felt so helpless. He couldn’t tell us what was hurting. We couldn’t fix it and every time they came to do something needed for his recovery it involved discomfort and pain. He looked at us all day saying "Momma - Dada" and we could only stand by and watch him squirm in pain. After eleven hours - the staff told us we had to leave because the unit was closing to all parents. I didn’t understand how Noah would do any better without us there. Walking away from him was the hardest thing I have ever done. I pleaded my case to the head nurse asking if I had rights to stay by his side as a parent but they were solid on their policy. So off we went as his nurse attended to him by the bed side.
It felt as if all of the life had been sucked out of us. We had done everything we knew to make him feel comfort and figure out his pain and take it away and we felt as if we lost the fight and let him down. There is no more horrible feeling I have ever experienced - to know your child is in pain and you can’t fix it.
I must admit that around 4:00 this afternoon I began to have weak faith. I was saying over and over to God "please stop his pain, please give him peace” I couldn’t see any change and I began to feel that anger start to rise in me again. "God, why aren’t you helping here? Why are you letting this happen? What’s the deal?" Jessica and I both admitted to each other in that moment that we were struggling in our faith. It is so awesome to be yoked together with someone who loves and follows Jesus. She helps me so much and is truly my help mate - the better half. Accountability means honesty with each other...and we were able to get our feelings out before we meditated on the wrong thoughts. In life - how you look at situations determines how you react to the situation. We had to get Gods viewpoint back in our eyes. That’s why God had us leave the PICU.
We had some friends visit at just the right time, to give us the encouragement that we needed at just the right time. And God refreshed us at just the right time. When 8 o’clock rolled around we had different hearts - ones that were no longer questioning, but accepting and trusting again. We still had to go back and hold Noah and assist the Nurses as they worked on him. We are so blessed by knowing his nurses are divinely appointed. Don’t believe me?? You should see them with him. We left him tonight sound asleep on peace with a nurse to care for his every need. We can rest!
I thought about Paul and Silas in the jail in Acts today. (Acts 16) They had no real assurance of rescue. In fact Paul knew persecution very well and I figure he knew it was coming for them in the way of torture or death. As they were chained to the wall they did something so odd. They didn’t question or get angry or give up - they worshiped. Jessica and I realize that we had a much different heart than that in the midst of today’s events. It is so easy to praise God when everything is good and you have good news (like yesterday) but if you’re not careful, when the worst day of your life rolls around tomorrow - you'll chose not to worship and choose to question - which only weakens your faith. And faith is what God is looking for when He wants to work miracles - like busting down a prison and setting people free - or calming a little boy who can’t tell anyone where it hurts.
By the time we left Noah tonight at 10:00pm, He was sound alseep, rubbing his face with his sock and we were at peace. Peace with each other and peace with God.
“Let not your heart be troubled; you believe in God, believe also in Me. John 14:1
This thanksgiving, I am thankful for my father in heaven, who loves me enough to Give Jesus for my salvation - A wife, who is everything I need to be complete, and a son - who God is using to teach me He can still work miracles, move mountains and change hearts.
Today we are standing on this scripture Romans 5:3-5 (New International Version)
3Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; 4perseverance, character; and character, hope. 5And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us
I realize that Jodie sent out a prayer request for Noah - please don't worry it's not life or death. John and I have had a REALLY rough, stressful day. As I mentioned early today Noah has been very hard to console. I believe he's in some pain, and it's possible the steriods have made him pretty much miserable, and very hard for us to deal with. When John sent the message we had been in the PICU with him since 7am, we were standing up hunched over his crib for hours, stressing out, trying to restrain him from ripping out IVs and hitting his head, biting his fingers, etc. It took both of us to try to keep him calm. So we were at our ropes end at that point (neither of us had eaten much or drank much). The nurses have given him several different drugs to try to minimalize his pain and calm him down; they really haven't had that much of an effect. The PICU dr. contacted neuro. surgery and they said since his vitals were fine, his drainage levels were fine, that he should be ok. He's still getting saline to raise his levels, but they had to put a tube in his nose to administer it since he wouldn't swallow it. Anyway, John and I are struggling today. Still praying, standing on the word...but it's been a little harder. We appreciate your prayers and we'll keep you updated on our little boy!
Well, it's been a stressful day but still a blessed day so far. John and I didn't sleep well knowing Noah was in and out of sleep and calling for us as we left last night. We got a few tips on how to work the sleep number bed, so hopefull we'll rest better tonight! :)
We got called around 7 this morning to come up and sit with Noah; he had been awake for awhile and was pretty much unconsolable, screaming for us. So we got to come back to the PICU a little earlier than usual. His sodium levels dropped pretty low last night, so they're monitoring that and Dr. says he will need to stay in PICU again tonight. Jennifer (nurse) took out his art. line, and it took quite a while to clot. John was helping hold Noah's arm down. When peaking to see how it was doing, Jennifer moved the gauze and blood squirted all over. Ok, John and I had rushed to the hospital w/o breakfast, or even a drink. Needless to say, John nearly ended up on the floor at the sight of the blood!
Noah has been really irritable today, frusterated, whiny, angry...he keeps hitting his head and trying to pull the bandage off. Please pray for him to have peace, settle down...if anything is hurting him I pray that God would reveal that to us. I'm having a hard time understanding what he wants or need...a very helpless place for me to be. That is the main source of my stress - my baby needs something, and I can't give it to him or even really comfort him. He was given some Benadryl (sp?) and is hanging out with John so I'm praying that he will soon get some sleep!
Also, he supposed to be drinking clear liquids to see how he will handle it, and we've only got about 3 sips down him. He is asking for milk and ice cream, but he can't have those just yet. He is very hard-headed and won't drink what I'm offering.
Despite the stress, we had a nice surprise this morning. If you scroll down to the bottom of the page, I started a section about all the "God-sequences" that have occured. I wrote about Noah's nurse Katie from Huntsville Hospital. She and her husband actually came today to see how Noah was doing. She had not received any updates so far, so we gave her the website link. I didn't get to visit w/ them, but John says they are amazing people of faith, and her husband prayed for us before they left.
I just want to take a minute to thank everyone at Huntsville Hospital...I'm not sure if I've typed this before...but b/c Noah was throwing up he was admitted there. While there, we were trying to figure out what was wrong w/ his leg. When US and xrays came back fine, we really felt like a ct scan was needed. Because of that scan, Noah's life was saved. Our Neurological surgeon told us if he hadn't come to Birmingham and started steriods when he did, he would have been dead in 24 hours. I am forever in debt to the staff at both Huntsville and Children's hopsital - the nurses, the doctors, the registration clerks, med-flight folks, the PICU staff...I could go on and on. Every bit of the timing was perfect. All of you were under the divine direction of the Lord, and I praise him for that!
I think I've said a million times that I'm overwhelmed by His grace, His faithfulness, and the glory that He is receiving through my sons situation. Please continue to pray that God will be glorified in everything that happens. I will do my best to continue posting every God-sequence that occurs in the section below. God bless you guys who are keeping up w/ our story, and I pray you have the most amazing Thanksgiving of your lives. I know that I have never been more thankful than I am right now.
Oh my word...I mean that's all I can say. I am so incredibly overwhelmed by the love from my brothers and sisters in Christ. I want you all to know that I've read every one, and I want to respond so badly to each of them! Aside from the Lord, these emails and facebook posts are what keep us going. Just to know that our baby boy is being lifted up by so many is enough to make my heart explode!
I don't know what's going on with our video posts, but we're trying to get it fixed. John posted a video of Noah calling for me today on facebook - my prayers were answered!! When that little guy said my name my heart just melted. He is doing really well, and communicating with us as much as he can (calling our names, he asked for milk several times, he says "unh-uh" if he doesn't want something...it's awesome. I'm trusting that in the morning he will be able to drink, and then hopefully by afternoon/evening he can eat something. I'm also trusting that he will be free from infection and the wounds will heal quickly. Oh, and pray for John because he is about to throw this sleep-number bed out the Ronald McDonald house window!! :)
Seriously...we don't have to words to describe how much we appreciate every person that reads this blog and follows our story. Know that we lift you up as well...and praise God for your emcouragement. There is a scripture that always has amazed me. In John chapter 17 Jesus says this amazing prayer, and towards the end he prays for all believers saying:
John 17:20-26 (New International Version)
Jesus Prays for All Believers 20"My prayer is not for them alone. I pray also for those who will believe in me through their message, 21that all of them may be one, Father, just as you are in me and I am in you. May they also be in us so that the world may believe that you have sent me. 22I have given them the glory that you gave me, that they may be one as we are one: 23I in them and you in me. May they be brought to complete unity to let the world know that you sent me and have loved them even as you have loved me. 24"Father, I want those you have given me to be with me where I am, and to see my glory, the glory you have given me because you loved me before the creation of the world. 25"Righteous Father, though the world does not know you, I know you, and they know that you have sent me. 26I have made you known to them, and will continue to make you known in order that the love you have for me may be in them and that I myself may be in them."
One day while reading this I realized...Jesus was praying for me here...I am one of those that believes because of the message and writings of His disciples...
Today I thought about how many people said they were praying for Noah, and how DIFFERENT all these people all. From different states, different countries, different cultures, different churches...despite our difference one thing is the same - we are all crying out to the Lord, and our faith is being strengthened.
Jesus said above in verse 21-23, "...that all of them may be one, Father, just as You are in Me and I am in You. May they also be in Us so that the world may believe that You have sent Me. I have given them the glory that You gave Me, that they may be one as We are one: I in them and You in Me. May they be brought to complete unity to let the world know that You sent me and have loved them even as You have loved Me."
Jesus asked the Father to make us one body - a body united for the cause of Christ - to share His love with others, and to pray for each other, and encourage each other, so that the world will see that Jesus is real and His love is real and His hope is real and His salvation is REAL. I've often thought how amazing it would be if as believers in the One True God, the God of our Salvation, we could put aside our differences, whatever they may be, and just love each other as Jesus intended us to. I see that happening through your prayers and emails. We may not go to the same kind of church, or worship in the same way, or listen to the same kind of music, etc. but we are loving on each other and encouraging each other in the Lord and that warms my heart. I see that prayer Jesus prayed so many years ago being answered today. The next time you see your neighbor across the street who goes to the church that has loud guitars and drums...or your relative from another town who loves the Lord and prays in tongues,...or a friend from work whose church doesn't use instruments to praise Him...or your daughters best friend who raises her hands during worship...just remember that the Lord asked for us to be united, and sometimes the "details" get in the way of that.
Please know once again that John and I are so appreciative of every form of support we have received. And please also remember the other children at this hospital as well. This is an amazing place and much healing is going on here. I saw 2 new children come into the PICU tonight - let's UNITE and pray for them and their parents also.
Happy Thanksgiving everyone!
Burn Update Wednesday night 7:35 pm
The Chaplin and social worker showed up just at the right time. They helped settle me down and get my emotion under control. I asked everyone to try to see this scenario from a parent’s perspective. My boy is hurting and I want positive assurance he will not get hurt any more. I apologized for reacting in anger. We began another long walk down the hall
When we arrived at the unit, we were met by a man who had the air of importance around him. He introduced himself to us as Dr. David Young.
He sat us down and asked us our level of education in science and mathematics because he wanted to know where to start with the explanation. As he began to tell the amazing power of the machine we understood how important it is and how much of a GOD send this thing is.
Then the reason for the burn came. This is their best guess, and not a 100% positive answer.
Sunday's MRI on Noah was an emergency procedure. The anesthesiologist (sp?) wanted Noah to be warm so before the procedure he placed a new blanket on him. It was what they call a "space blanket." Cloth on one side, aluminum on the other side. The blanket radiates the body's heat back to itself. It’s a great invention. The blanket is new to the hospital and was not supposed to be in the MRI.
The MRI techs have their own blankets they usually use. They did not operate according to protocol and kept the blanket on Noah to keep him warm - not knowing it was unsafe.
Inside the MRI, the magnetic field is 20,000 times stronger than the earth’s natural magnetic pull. What they think is that the the electrons of the aluminum were excited and created a current which arced onto Noah's arm and burned him. We are very lucky it was the only place he was burned.
We were assured this would never happen again. All of these blankets have been pulled from the shelves. The manufacturer I believe is being contacted and hopefully this hospital will tell every other MRI unit in the world the dangers of the blankets.
Because we know it was unintentional, that they had Noah's comfort in mind when they placed it on him to keep him warm, - we choose to forgive the techs and all involved. Jesus has taught us to be people of mercy and grace. After being told all this information, Jessica said "If this was supposed to happen to Noah so that others would not be hurt then we accept it."
We are thankful to the staff at GE and the staff at UAB for such a deep investigation. We wanted closure - now we have it.
Please forgive those involved along with us and let’s not use this as an opportunity to tarnish an institution that does so much good for so many children.
Because of lack of time, I have copied and pasted an email from our church contact, Celia. John contacted her earlier today to give Noah's status. I'll also quickly add that as of 615 pm, Noah had been extibated (sp?) and was really moving his limbs; he took his passie out with the left hand and handed it to me....He was aware that John and I had to leave so started crying , "Mama! Mama!" then he also said "Dada! Dada!" Praise God! We were told that he may not be able to speak for a while due to the part of the brain that the surgeons had to go through. He was also able to communicate that he wanted some milk. And once he shook his head no when I told him he needed to go night night! That is SOOO Noah!! So, needless to say, we are praising God for His faithfulness and for healing. He is good!! I will do my best to post more after visiting hours are over at 10pm. Once again, thank you SOOOO much for all of your prayers, and support, and for loving my little boy. He's going to be ok. God bless!!
As we rely on God today for everything, I share with you a scripture Jessica Crowe shared in their blog regarding Noah: “Many are the plans in a man's heart, but it is the Lord's purpose that prevails.” - Prov 19:21
We spoke with John David a short while ago. I quote John David, “This is a VERY GOOD day!!!” They have just met with the surgeon who says that from the MRI, it looks like they got ALL of the tumor!!!!!!!!!! Also, and very unexpected, they see signs that the brain is moving back over into it’s normal position!!! Also, tests are showing that his motor function is better than the surgeon expected it to be!!! They will be taking Noah off of the ventilator later today and he may even be moved to a room (out of PICU) tomorrow!!!! AND, the surgeon is now not expecting Noah to have any more surgeries during this hospital stay!!!!!
PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!!!!
Please continue to pray that Our LORD will restore all of Noah’s motor function and speech and that God will be glorified in this! Pray as well for strength and perseverance for John David, Jessica and all of their families.
This morning I (Jess) woke up thinking of Noah and immedietly called his PICU nurse. She said he was awake and watching Elmo! They had given him a different type of sedative last night around 7pm (I'm not sure why) so he's coming in and out of sleep. I'm very pleased with this, but it's really hard because I'm not there. I still don't know if he's able to communicate. And I'm assuming that he is still intibated. I just don't know! It is so difficult not to be able to be with my son, and not to understand all the medical jargon (all of Noah's nurses are VERY good at explaining everything to us, and they have all been so sweet and compassionate....but it's still all very confusing to me at times). My prayer right now is that Noah will be at peace and content in his little bed watching Elmo...that he recognizes his nurse (he's had her once before, and the next shift will bring another familiar face), and he is not afraid!! I told him last night before we left the hospital that Mom and Dad were coming to see him in the morning after his nap, so I pray that he remembers and is at peace.
He looked really good last night; there is some swelling all over his body. Especially in his eyes/face. He has 2 or 3 IVs and one art. line...he also has a draining tube coming out of his little head that will continue to drain spinal fluid/blood to relieve more pressure. He is a trooper. We saw him move his feet - both of them! - last night as well as his left hand. Still praying God will restore control to his right side. And I pray that he will also be able to communicate with us. I just want to hear him say "Mama." Sometimes I would get frusterated with him because he just loved my name, and would say it over and over...."Mama, Mama, Mama, Mama!...." how ignorant I was...
So...all that said, God has encouraged me with a word today. This is the path He has chosen for our family. It may not be what I had hoped, or what John and planned, but it is what it is. And I am trusting Him to take us step by step, never letting us look too far ahead as to not get overwhelmed. Here are some scriptures I'm thinking on:
Trust in the Lord w/ all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight. -Prov 3:5-6
Many are the plans in a man's heart, but it is the Lord's purpose that prevails. - Prov 19:21
Listen my son to what I say, and the years of your life will be many. I guide you in the way of wisdom and lead you along straight paths. When you walk, your steps will not be hampered; when you run you will not stumble.
- Prov 4:10-12
My steps have held your paths; my feet have not slipped. - Psalm 17:5
Your word is a lamp to my feet and a light for my path. Psalm 119:105
God is good, and He is going to see us through this. - Jess
Jessica's email address
I have had so many messages for Jessica through my emails. I know she has appriciated and is thankfull for every one of them. To contact her directly, her email address is
Thanks - John
Well folks, I was right - today was the worst day of our life - and also the best
We got a good report from the nurse around 2:00 that told us Noah had done well in the surgery and that the doctor had removed most of the tumor. We praised God and rejoiced in the good news
An hour later, the lead surgeon Dr. Wellons came out to meet us - and to take us to that private room - again.
Its hard to explain how long it took to walk 50 yards.
He sat us down and began telling us about the procedure. As they removed the part of the skull they noticed that the tumor was more agressive than what theyy had hoped. They had hoped to enter the inside of his brain through a small portion on the top left side. The tumor grew inside the middle of his brain. As they developed their game plan, they knew a tough decision had to be made. They had to remove the part of Noah's brain responsible for movement on his right side and speech in order to get to the tumor to remove it. Once they could see it they did say it was every bit as big as a grown mans fist. He told us only 5% of brain tumors in children ever get this big. If we had'nt taken Noah to the hospital on Friday and they had'nt found it and began steriods to stops it's growth, He would have been dead by Sunday.
The tumor had aggressivley attached itself to key parts of the brain and had several veins going through it, They had to work meticulously and slowly as a team to make sure noah remained stable. As the surgeons cut away parts of the tumor, they would have to stop frequently to put blood back in his body and get his blood pressure back to normal. It was very orchestrated - very good teamwork. Noah lost 1 1/4 of his total blood volume.
At a certain time during the surgery the doctor said he made it to the top of the brain stem. It was at the point much of the tumor had been cut away - especially the parts that supply it with blood. Tumors begin changing color as they loose blood and it became difficult to tell what was brain tissue and what was tumor, so they stopped, sewed him up and got him ready for recovery.
Here is the bad news. A tumor that looks as agressive as this one does usually means it is malignant - cancer. We will not know for sure for 5 days at least. An MRI will be preformed tommorow so they can see just how much is left in Noah's brain.
This will be a process - and we have jummped the frist hurdle in a long race.
Tonight, Noah is stable in the PICU. He is on life support to breathe for him and to help him maintain good blood presure and other vitals. He is still asleep and will remain asleep until after the MRI which will not happen until after 11:00.
Jessica and I felt like we had all of the wind knocked out of us in that room. We stayed together there after the doctor left trying to figure out how we were going to tell our family and friends waiting in the lobby for us. It was so hard just to put one foot in front of the other, much less stand, as we walked to the crowd.
An old school friend of mine, Rachel Bobo Faulkner, sent us a message. She has seen tremendous loss and heartache in her life and I have respected her for years because she has kept faith in the midst of horrible circumstances. Her encouragement was "God has chosen those He trusts for His glory."
We know God is being and will continue to be glorified through Noah's life and testimony. God is going to "Show Off" using Noah! God choose us to go through this. Asking "why me ?? " is useless - the answer is always "For God's Glory"
We are so exausted - I have never talked so little in my life - I have no words to say.
We know all things work for good for those who love him and are called according to His purpose.
The scripture we are standing on today is Hebrews 12:1-3
1 Therefore we also, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, 2 looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.
3 For consider Him who endured such hostility from sinners against Himself, lest you become weary and discouraged in your souls.
May God bless all of you who have prayed for noah. The gifts and outpouring of love have been overwhelming.
Just got a call from the nurse - they almost done and going to close him up! They got most of the tumor we think and he had to have a blood transfusion, but he's almost done!!! Going to recovery. Dr. will come talk to us in about an hour. Glory to God!!
Update 1:30 - John David
The stories of pain here are everywhere. A 3 year old girl was just place in the bay right beside Noah's bed in the PICU. She has the exact same tumor situation as Noah. Same symptoms, same place, same size. I spoke briefly with her mother and she has lots of tears and looks like we do - a deer in headlights. Pastor Steve gave me a vial of annointing oil before I left Athens. Believing Gods word is true in James 5 Jessica and I have been annointing Noah every day and praying in faith over him. I asked this mom if she was a believer - She is. So we grabbed hands, annointed her daughter and prayed the same prayer of faith over her daughter as we have over Noah. I have no idea what her name is but God does and she is gonna be just fine! Just like Noah-
Pray for this place, the people, the Doctors, the parents - the children.
There is no time out for the calling of God - We are called to be salt and light every where. To be His hands and feet in every situation. Remember Jesus on the cross?? He ministered to the thief on the his side and trusted his mother's care to the apostle. Ministry never stops - we are blessed to be used whenever for whatever.
As I walked out of the PICU I heard a familiar sound - one of the other parents had logged on to my myspace music page at myspace.com/johndavidcrowe and was listening to the music on it. Sonya had told him I was a writer and musician. He was listening to a song I wrote several years ago about the uncertainty of life and the certainty of Gods faithfulness. I havent listened to that song in a long time. It is interesting how God reminds us of his promises and His presence in such awkward ways. I wanted to share it with everyone to remind us all that worrying adds nothing to our life - the best thing to do with trouble is to know God has us in His hands no matter where we stand - in our chances and in our fear - as He holds us and until every question we have is made clear through His answers.
The song is called "Incredible You"
Surgery update 1pm
Just had the head surgeon's nurse, Nadine, come out to meet w/ me and John. She said Noah is doing good; Dr. Wellons is plugging aaway. He is taking him time, and is very meticulous in doing his best to cut away from the blood vessels in the tumor. She said the bleeding is contained. So they'll keep going as far as they can, getting as much as they can until they have to stop (too much bleeding, etc.) John asked how they handle eating, etc. Nadine said they don't...they just push through it until the job is done. He shed tears of gratitude, and thanked her for what they do. She said Dr. Wellons goes for a run to energize before the surgery, and they all do the best they can do and give the rest to God!!! We both thanked Jesus for a team of believers. Nadine also told us, with tears in her eyes, that she explained to her daughter last night that Mom would have to leave early to help a sick little boy. Her daughter asked if they could pray for him and they did. God is good, and He has Noah in His hands!!!
John and I feel the covering of everyone's prayers, and we are SOOO blessed to be surround by such love and support. We praise God for you every minute.
*I'm trying to organize this blog, I haven't really got the hang of it yet. I'll keep posting surgery updates at the top, but you can scroll to the bottom for additional stories, etc.
Tuesday November 24th 10:21am
Thanks to all of you who have contacted us about Noah. Your prayers and support have been overwhelming. For all of you who have researched and offered advice about his burn - thank you so much! We still have no answer from the hospital. He is scheduled for another MRI in the morning. Pray for his protection.
Noah is in the O.R. presently. The nurse has contacted us and said he went to sleep just fine and the procedure is going well. They estimate a ten hour surgery. Pray the Doctors and staff stay alert, strong and dont succumb to fatigue.
We will be contacted every 1 1/2 hour by the nurse for status updates.
Jessica and I have a lot of emails to respond to. We have never experienced such an outpouring of concern and love from our friends and community and even people we have never met. I cannot thank all of you enough. We expect to be here for a while. The doctors have prepared us to expect to stay for weeks to months. We have a room at the Ronald Mcdonald house. This is an awesome place. If you go to the Mcdonalds resturant and have the opportunity to drop some change in the collection box for the house - please do. There are so many families in the same situation as we are staying in this place. Everyone is so overwhelmed and in shock about the crisis surrounding their children that to think about lodging and laundry and food is just to much to handle. This place is an oasis - a God send!
As we find time we will try to respond to everyones email. Thank you for your patience.
We also want to thank the Athens News Courier for the story on Noah. To know our community is praying for him is . . . . I have no words.
As we know more we will update more
Thanks for Praying - This is going to make one great God story when it's all over!
Walking in Forgiveness - John David - Sunday night 11:15 pm
Noah's nurse in the PICU was questioned as well and said that he had no sores on him when we passed him off to MRI. We had spent time with Noah, examined him, changed him before the MRI and there were no sores on his body.
It turns out that somehow from the time we handed him to the MRI staff to the time he went to recovery he received a 2nd - 3rd degree burn on his right arm near his IV.
No one knows how it happened - no one knows when it happened - no one is taking responsibility - no one is admitting guilt. I watched a group of medical professionals from every area of medicine group together in a huddle 15 feet away from his bed and discuss it for some time - with no answers.
To say I am angry is an understatement - For those of you who know me well, you know I have a temper flaw.
My wife is my help mate - with one look from her I had the accountability I needed not to react in my anger but to step back and try to look at the situation outside the anger.
This morning before we saw Noah, I found myself very early in the book of Matthew chapters 5 - 7. I was reading the part Jesus spoke on forgiveness and loving your enemies - didn’t know God was equipping me for the day. I am not saying I am an enemy of any staff member here at the hospital - I know they are doing their best - And I really like our Doctors and Nurses. But when your kid gets hurt that bad - your flesh (sin nature) wants to put someone’s head through a meat grinder (my brother gave me that quote). Paul Wrote - "In Your anger, do not sin" God has given me the strength to keep my mouth shut and my wife has held back tears and frustration like a champion. She is a rock!
We know that in all things, God works bad for good - waiting to see how this one works out.
Please pray for Noah’s safety. The last thing he needs is another something in his body that hurts.
Pray for this staff here at the hospital - pray for the equipment they use - pray for Jessica and I to walk, talk and look like Jesus!
As of right now the entire MRI unit at UAB is shut down. GE, the company that made the machine is doing a complete diagnostic. A investigation is being done throughout the hospital. We hope we have an answer to what happened soon.
If you have any experience with or know someone who has recieved a burn injury from an MRI please email me at Johndavid@friendshipumc.org
The M.R.I result - John David
Currently, Noah is scheduled for surgery on Tuesday. We have no idea what time. Until then, they are giving him treatments of steroids and other medications to cause the tumor to stop growing and decrease the swelling of the brain.
He is eating more ice cream than what is allowed by law - at this point we could care less about getting what we want in his stomach. If he asks for it, he gets it. : ) He can still use his left hand. He can hold his juice cup and play with our faces. We have laughed a lot, hugged more and kissed constantly. As bad as this situation is, we have had some great quality time together.
We have met some great hospital staff and really like his nurses and doctors. We know that God orchestrated his transport down here and preordained those who are caring for him. We are in awe of Gods perfect timing.
We are so completley overwhelmed and humbled by the outpouring of love and support from our friends. Words cannot express what your prayers and love have meant to us.
Monday is going to be a long day of waiting; Tuesday will be the hardest day of our life. We know God works all things for good for those who love Him and are called according to His purpose. Noah is His. His life is in Gods hands. We were reminded by good friends Saturday night that the disciples were in the boat in the storm and Jesus was asleep in the boat with them. He didnt bail out and had total faith to make it to the other side - so much so he took a nap during the worst part, when every one else was freaking out. In our storm - Jesus was in the Huntsville Hospital, the helicopter, the PICU and the consultation room. He will be in the O.R. as well. We arent freaking out - but screaming at the storm "Peace be still!"
More to come when we know - Thanks!
First Night at Children's - Nov. 21
Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up (James 5:13-15).
Two of our Friendship brothers drove down and secured us a hotel room (since they kick us out of PICU after 2am) and made sure we had a hot dinner. Talk about walking out your faith and sharing the love of Christ. Even though we were beat up, we were loved on a lot more!
We thought Noah was going to be left-handed; he was beginning use that hand more and more. His right eye began to turn in slightly. And of course tthere was the issue with his leg not working as well. As we began to look back over the past few weeks we realized our normal, perfectly healthy baby boy had not been himself at all. When the doctor on call couldn't give us any answers she ordered a ct scan of his brain.
You know that "gut-feeling" that something really bad was happening? That's when I got it. I interpret that feeling as the Holy Spirit trying to prepare me for the news that was coming. We waited and waited. The sweet nurse on call, Katie, came in and informed us Noah didn't need to eat or drink anything else. That was all she said. John and I assumed they needed to do an MRI which meant either a) they couldn't get a good read of his brain w/ the ct or b) they were able to read it and it was bad. We waited and waited some more. Family and friends had come and gone, and John, myself, Mimi, and sweet Noah were the ones present when we got the news.
When the doctor pulls up a chair and looks like she's going to cry it's never a good sign. So I was as ready as I could be. "This is not good. The ct scan shows a mass on his brain. We need to get him to birmingham as soon as possible." It was like something from a movie, or an out of body experience. From that moment on, we knew this was out of our control. We are weak, but He is strong, and His strength is made perfect in our weakness. To God be the glory. Noah had his first helicopter ride to Children's Hospital, w/ His angles following close beside.
Stories of God's intervention, encouragement, grace....
But seek first His kingdom and His righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. -Matthew 6:33
Noah's pediatrician is located in Huntsville across from the Hospital. I got tired of driving 45 minutes for an office visit so I called a dr. in Athens in an attempt to get Noah an appointment on Thursday to have his leg examined. They weren't accepting new patients. Reluctantly, I called his regular pediatrician and they scheduled an appointment for him on Friday 11/21. Friday morning Noah began vomiting. When we arrived at Dr. Johnson's office at 245, Noah's vomiting was more frequent. The dr. said he was dehydrated and needed to be admitted. She had a theory about his leg and said they would check it out. After contacting Women & Children's, Dr. Johnson told us that the attending physician for the weekend was Dr. Knight, a friend of hers. I should also add that Dr. Johson was my pediatrician as a child, and we have mutual family friends. Dr. Knight was the physician who broke the news about the mass, and the compassion and empathy in her eyes made it....well, what it was. Dr. Johnson also came to the hopsital Saturday morning to check up on Noah, and when we realized they were doing a ct, she asked them to call her w/ results. When she realized he had to be transfered, she came back to the hospital to talk with me about the situation and express her sorrow and hope; she offered her prayers, and offered to spread work to others to pray. Praise God for the 45 minute drive - I won't complain again! Praise God that Noah began vomiting - he wouldn't have been admitted. Praise God that Dr. Knight and Dr. Johnson had a connection, and that connected her to us. Praise God that we had a sympathetic dr. to share the devistating news. Praise God from whom all blessings flow!
About our nurse Katie -
Katie was assigned to Noah's room at HH on Saturday for the 7a-7p shift. She was very sweet, very respectful of us, just had a great spirit about her. When we found out he was being med-flighted to Birmingham, she came in to check on me, making sure I had eaten lunch, wanted to see how I was holding up. Katie's parents live here in Birmingham, and we talked a little about the area surrounding Children's Hospital, and how to get there. As Noah was being prepared for the flight, Katie talked w/ my mom. She said, "I'm really not supposed to ask, but are you guys believers?" Mom shared w/ her our story, and Katie said she would have her brother, who is a pastor of a church near Birgminham, send out a prayer request for Noah to his congregation. She even offered to come visit us in the hospital when she came down for Thanksgiving. Thank you sweet nurse Katie for not just doing your job, but for encouaging us in the Lord, and sharing Noah's story w/ others.
On the way to Birmingham John and I were emotional basket cases. We did have enough sanity to realize that freaking out would get us nowhere. We quoted scripture to ease our anxiousness and grief. John turned on 91.3 the Fix (thanks Mark Allen!) and every song we heard was about standing strong, trusting the Lord, hope....and we were encouraged. John reminded me of why Noah has his name. About 10 years ago, God impressed on his spirit to name his first born son Noah. He would be a righteous man in an unrighteousness generation, and lead many to Christ. He would live and not die. In believing that God has a great plan for Noah's life, I knew John and I had a big responsibility in raising him. Just about every night after Noah goes to bed, I would sneak into his room and pray for God's protection on him, for the Lord to bring him to Christ at a young age, for peace and the Holy Spirit to live in his heart, and for God to use him for His glory. God is answering my prayers - not in the way I expected or would prefer - but God is using Him. And healing Him. I also trust that Noah has peace in this surgery (which he's in as I type), and that Jesus is with Noah. I'm reminded that a couple of weeks ago Noah and I were heading into church for a Thanksgiving dinner we shared with our young adult bible study...we passed the big stained glass window w/ Jesus holding a baby, and other children scattered at his feet. He raised his hand to the window and started singing, "Bible, bible, bible!" (that's his version of Jesus loves me). I know that in Noah's sleep, Jesus is holding him, and singing "you are weak, but I am strong!"