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 treatment 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
To take a look at Noah you would not assume anything is physically wrong with him. Besides the scar on his head from his surgeries and the port under his skin on his chest, he looks and is acting like a three year old boy. His eyes are full of life, his laugh is contagious, his energy is full throttle all day & night. Noah gives no appearance of a child battling a brain tumor.
But the battle is raging...
In Clinic 8 of the Children's 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.
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. Philipians 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.
Who of you by worrying can add a single hour to your life? 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
How I long to tell you that Noah is stable...those words were such a sweet sound to my ear the past 2 times he has been scanned. This scan result was not so sweet; Noah's tumor is growing once again. It is a relentless beast and I have never hated anything so much more in my life. His oncologist called just after noon to let us know the tumor has grown a substantial amount, though not enough to obviously affect him at this moment and probably not in the near future, but it is getting larger nonetheless. We are meeting with her on Tuesday at 12:30 to discuss possible treatment options. I don't even know who all is still reading this blog, or who has in the past, but I need to call you to pray once again, that God would work a miracle and glorify Himself - once again - in my son. We are still holding onto hope that there is some treatment out there that will heal him, and/or that God will supernaturally heal him. We are still holding onto his promise in Romans 8:28, that He works all things for good...however that looks to Him, we are standing on that. We have an amazing support system in Athens, and we are beginning to see a new support system circle around us at our new church in Hoover. We are so thankful to all who have helped hold us up in the past, and I know it's a lot to ask, but we still need your prayers and encouragement! This is very difficult, and we are hurting. Please pray over the next few days that John David and I will hear the Lord and follow the leading of the Holy Spirit as to what our next step will be. I promise to keep you informed as events unfold. We love you all.
Hello friends! I hope this finds everyone doing well. We have been living in the Birmingham area for about two months now, and we are slowly settling into our new environment. There have been lots of changes for each of us - some good, and some difficult to accept. I believe that the move has been hardest on Noah; he doesn't get to see his extended family nearly as much, and he misses them a great deal...especially his Mimi and Grammy. Not having a backyard to roam and ride his 4-wheeler in has been difficult, and his behavior has reflected his anger and frusteration towards all of the change. But he has overcome much greater adversity than this and I believe he is beginning to adjust to his new life, and will be just fine. He loves going to school (MWF at our church's dayschool program) and is very proud of his lunchbox. I am very thankful that his frustrations and concerns for the past 6 months have had nothing to do with hospital visits, medications, radiation, sedation, etc. We have been blessed with many treatment-free days!! With Noah's upcoming MRI - this Thursday, Oct. 20 - we are asking for prayers that the coming months will also be treatment-free, that the effects of radiation will manifest in no other way than the deterioration of his tumor, and that the MRI on Thursday will show NO TUMOR GROWTH! We are praying that we can update this blog on Thursday with another diagnosis of "stable."
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!
Jessica and I have made some pretty big decisions in the last few weeks. One of the biggest decisions concerns my job at our church and where we live. We have prayed so much about this and asked the Lord to reveal His will to us and He has. At the end of August I will be leaving Friendship Church and moving to the Birmingham area to be a part of another ministry. Jessica and I didn't see this coming, and when God opened the door and asked us to leave Athens we wondered "why now?" and "why us?" The interesting thing about our faith in Christ is that we don't always get the 'why' questions answered. When Mary, the mother of Jesus was asked to be the vessel that God used to bring His son to the earth, the 'why' was not offered, and she said yes. Also when Joseph was asked to marry a woman who carried a baby that was not his, and live with the shame of that - in the culture of his day - and then leave behind everything he knew to move to Egypt - all of his "whys" were not answered. He said yes to God - even when it didn't all make sense.
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.
Thanks for praying for and checking on our son.
Spread the word-
Pray for Noah.
Jessica and I had a lot of stress and anxiety coming against us these last two days concerning Noah's MRI as you can imagine. Noah has been doing so well since his radiation treatments ended in April, that we haven't really focused on what this MRI could show. Neither of us really slept last night. Around 12:30am I was standing in the window of the 9th floor hotel room we were staying in trying to prepare myself, trying to fight off worry and praying. I was thinking about the verse Noah has learned and the significance of the timing. There are so many things we are asking God for and trusting God for in our life. I am sure you are as well. The part he hasn't memorized is the latter part of Proverbs 3:5 "and lean not on your own understanding." That is the hardest part of walking with God for me. I want to have clear answers to all my questions, clear answers to all my prayers. God is sovereign, and He is consistent in not giving us all the answers, but He tells us to trust Him with all our heart. Trying to figure it all out can wreck your faith. Sometimes the greatest leap of faith is to not ask God for the why, but to tell Him, "No matter what, I will trust you - even if I don't understand."
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 outpouring of love for Noah. Thank you to everyone. We love you!
Pass it on - Pray for Noah!
This week (July 11th - 16th) we have had an amazing time in Gulf Place Resort in Santa Rosa Beach, Florida. A ministry called "Lighthouse Family Retreat" housed us, fed us, loved on us, and reminded us how to have a great time in the midst of tough situations. Volunteers came from all over to put the retreat together. We met so many wonderful individuals and families who gave a week of their life to minister to us and ten other families with children with cancer. College students made up a group of summer staff who help make everything work smoothly.
This was Noah's first time to ever see the ocean. It was a great place to have this experience.
Wednesday July 20th, Noah has his second MRI since his last radiation treatment. For three months he has led a "normal" life of a toddler. His oncologist wanted him detoxed of all chemo and medicine so we have had no doctor visits, no port access, no treatment since April. It has been really great. To be honest, we haven't thought much about the MRI Wednesday because we haven't wanted to. We have taken advantage of the time we have had without the stress of cancer. This retreat was the perfect time for us to once again refocus on what we may face in the next few weeks. We met amazing parents, all with kids with cancer - some who have come through it and are in remission and others who have been told there is nothing more that can be done for their children. We all sat together three hours a day and talked about our struggles, stories, and fears. We all had a lot of common ground and pain...and hope.
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 don't 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.
No news is good news, and we have been having an amazing summer! I haven't completely forgotten about this blog, but every time I think, I need to write a blog, its at a time when I can't stop and write. For those that still check up on Noah, I apologize for not updating; the good news is, things have been quiet, and unusually normal - there hasn't been a need to request specific prayer for him or inform of his health status. Right now he is doing great, as far as we can tell! He remains full of energy - if you have met him, you can attest to that. People ask me all the time, "Does Noah ever stop moving?" Yes, but only when he is asleep! He is constantly a joy as well as a frustration. And don't judge me for saying he is a frustration!! :) He is so stinking cute and funny to make up for all the trouble he gets into! It's in the times when I am so frustrated that I have to remind myself...remember what he has been through. Remember that it is a gift that he is still here. Stop being completely selfish and don't act in your anger. Remember to live in every second and don't take it for granted. I didn't expect today's blog to turn into a confessional, but the farther out we get from treatment, the harder it is for me to be patient with Noah, and with just about anything, to be honest. I feel like the Lord was giving me an extra dose of grace during the hardest times, but now we are in a "normal" season of life and in its own way, it is just as hard. Maybe that sounds crazy, but regular doctor visits, hospital stays, spending most of my time driving back and forth to Birmingham and caring for a special needs child WAS my normal. It's hard to integrate back into society once you've been changed like that. Or maybe it's just hard for me. Anyway, life is normal, and good - full of 3 year old antics, bad attitudes, and hilarious statements that make you think, where did THAT come from?? (For example, as I typed the last sentence, Noah found John's chocolate-covered espresso beans and ate one. God help me when that kicks in!) He is not in school this summer, and he will start back to a half-day class in August.
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.
If you haven't heard through Facebook or word of mouth, we got some good news yesterday! Noah had his MRI yesterday morning, brain and spine, and Dr. Reddy's words were, "It looks good, it's what we wanted it to look like." The tumor has not grown during or since the radiation treatment. It wasn't a very clear MRI, but she said the next one (in 3 months) will show more how the radiation has affected the treatment area. So, Noah will not have anymore treatment until the next MRI...and hopefully he won't need anymore after that. Right now he is considered "stable." We are praying for and believing that his MRI's will continue to be stable, and eventually clear, that the radiation has done its job, and eventually his MRIs will be spread 6 months, then one year apart. While praying for these things, we are completely aware of the threat of a recurrence. After Noah's last surgery, the tumor grew to 3 cm over a 3 month period. We are praying that the radiation treatment will prevent this from happening again. So he isn't in the clear yet, and we still need you to petition to our Father for complete healing!
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 steroids." 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. So, here they are, hope you can see what a great time we had!!!
We moved out of the apartment in Birmingham and we are HOME!!! Noah had his last radiation treatment on Wednesday, then we headed to clinic to see his neuro-oncologist and get another dose of Avastin. The appointment went well, and we scheduled his next MRI for Tuesday, April 19th. Dr. Reddy doesn’t see a need to continue the Avastin treatment right now; it was only given to limit the side-effects of the radiation, and it seemed to work nicely at that. So Noah will have several weeks free of port accesses, medicines, and so forth.
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 too far into the future, and not dwelling on what-ifs 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 stabilized 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
This is a story I read today that I wanted to share:
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!!
9 more treatments left!!! Noah is still doing well - hardly any side effects except hair loss. His Dr. told us today that Continuing to take the Avastin has helped prevent some of those side effects, like swelling of his brain. I am SO glad Noah has not needed to take any steroids...God has given both of us grace there!
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 handful 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 stethoscope 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 information 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...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.
We are halfway through Noah’s radiation treatment! We are “over the hump” so I’m praying it will be downhill and smooth sailing from here. Noah has had a good week so far, but he is experiencing some hair loss and tenderness at the radiation site. He is not lacking for energy, though. This morning at the radiation oncology center he performed a tap dance routine for everyone in the waiting area, and after his nap the bed turned into a boat and we had to fight off the sharks with Elmo and Brobee pillows. This afternoon we met some friends at a local park with a playground and Noah could run and keep up with all the other kids…the only thing visibly different about him was the hair loss. It’s amazing how resilient he is.
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 Kids 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? Who 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 with 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 nap time 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).
Noah and I are back home and both of us are excited about that. We have had a pretty good week - a long week - and we are realizing that even though Noah doesn't have any physical side effects from the radiation right now, he and I are both having emotional effects from the situation. Like I said, it has been a good week - it could always be worse! - but it's also been a trying week as well. I feel like Thursday will be the hardest day of each week through the rest of Noah's treatment, and Thursday afternoon/evening seems like an eternity, because I know as soon as treatment is over Friday morning we hit the road. But 12 treatments down, 18 to go! Thursday evening I was bummed, tired, and stressed. I looked around the apartment and noticed all the cards and pictures that have been sent to us, and was encouraged. I know we have people praying/interceeding for us from many different parts of the country - I have the letters to prove it! The notes of encouragement you send may only take a few minutes to write and slip into the mailbox, but I will look at them for weeks and remember that my family is loved and covered in prayer, so thank you!
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!
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 every day, 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,
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.