Noah woke this morning with a temperature of around 104, and he began vomiting shortly after. He slept most of the morning away. When his surgeon came by he decided Noah needed to stay and have blood and urine samples taken to test for any infection. After a dose of Zofran, Tylenol/Motrin and lots of rest he is feeling better caps afternoon. I can't predict how long this process of waiting on the results of the labs will take, but from past experience with him being neutropenic we would wait days to see if the cultures grew anything suspicious. Our sweet neighbor Xavian ( http://www.caringbridge.org/visit/xavianbecketthall)and his parents have been waiting for infection to clear for weeks, so I have no room to complain about 6 days! I am doing my best to be flexible and patient, knowing that medically this is the best place or him to be right now, although emotionally it's stressful for him to know he had a new home, a new room and backyard waiting for him to enjoy. We will continue to pray for infection to stay away and fever and vomiting to not return again. Thanks for joining us in our wait for healing!

"Wait on the Lord; be strong, take heart, and wait on God" (Psalm 27:14).

Noah woke from his afternoon nap with a fever, and began vomiting shortly after he woke. He has thrown up twice already and says he feels sick again. We will stay at the hospital another night to have him monitored and make sure this fever goes. A fluctuating temperature isn't a cause for alarm, but one that rises to 101 or above and hangs around is...so it's best to stay put and see where this is going. He had a good afternoon with lots of visitors, which he enjoyed. Some special friends came to visit with gifts: a special Bead of Courage made just for Noah and LOTS of Star Wars toys! He was ecstatic that he was given "the Darth Vader ship to ride in," something that he has wanted for quite some time now. Thank you to the Newtons for such a special visit. :) 
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. :) 

Noah is feeling better today! He still has some improvements to make but he seems to be recovering nicely. His drain will be clamped tonight and he will have a CT scan in the morning to see how he does overnight without the drain. If everything looks good, we should begin preparation to go home, maybe on Sunday. 
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 was moved to a room on the 6th floor this afternoon. These are very nice rooms with an unlimited supply of Sprite and Ice cream. He is complaining a lot of his head hurting. He has thrown up some tonight and is trying to be very still. If he moves too much it hurts his head. He is still getting morphine for pain as well as other drugs. He has a CSF drain in his head allowing fluid to exit the wounded area. He hasn't wanted to walk yet, and thats not a cause of concern for us. He just wants to be still so he remains comfortable. We don't know how long we will be here. The previous surgeries, he didn't seem to complain about his head hurting near as much as this time. The surgery opened up the skull in the same place as his scar from the first two, but he also cut in a new place to get closer to the base of his brain. Our guess is that with this big of a wound, it's going to take some time before he gets any comfort outside of pain medication. He port is accessed now, so he has no IV's in his hands and feet anymore. this makes giving meds so much easier. 

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.


lastly, 
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. 

We disagree with the hospitals policy that makes parents leave their children in the PICU every few hours. Tonight at 10:00 pm we were asked to leave Noah while he was awake screaming and pleading us not to leave him. He was scared and very upset. He is in pain, has multiple IV's and hasn't eaten anything since 8:00PM yesterday. We walked out listening to him scream for us, pleading us not to leave him. There is no worse feeling I know of. It made me upset enough to post this. 

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 
(205) 939-9896
mike.warren@chsys.org


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. 

It's done! Noah is in recovery, and unfortunately they will not let us see him for about 40 more minutes (last time we were allowed in recovery so this is very frustrating for us!) We spoke with the surgeon and he said everything went very well, the tumor he removed was about the size of a tennis ball. He opened part of the old incision and also made a new incision behind his left ear. He did remove several cm of brain that he believes to be non-functioning. As Noah was waking up he moved his left AND his right arms!!! He is also speaking, answering the nurse's question about pain, etc. *Insert huge sigh of relief here!!* We are anxiously waiting to see him now, and we will update more once we get to visit with him for a while and experience how he is doing for ourselves. Thank you all so much for praying for him today! 

Everything is going well. :)

So far so good!!! No one knows how long the procedure will be, last surgery was about 5 hours. So we will keep updating! Thanks for checking in on him. :)

They just began the surgery, it took them a while to get him positioned. We will receive updates every hour to 1 1/2 hours. 

Noah went in to the MRI room to begin the scanning process at 7:50. He made sure before hand that everyone knew he wanted either marshmallow or donut smell in his mask. :) He has been nervous all morning and very angry that this has to be done, but as soon as we arrived downstairs at MRI he was all smiles. They really take care of him, and us, down there and it was familiar to him. Before John took him back to the room, he gave me a hug and a kiss and said, "I love you, Mom, I will be safe in there." John and I have been praying for peace for him this morning, and it did my heart good to hear Noah say that. God has got him, and Jesus is with him. He will be taken directly from the MRI room to the OR. I will post again once he is moved for surgery. Thank you so much for praying and believing with us.

If you love this sweet picture of Noah on the left, then scroll down for more! Thank you so much to Faith Blessing of Faith Blessing Photography (www.faithblessing.com) for squeezing us into her schedule and giving us one of the most precious and amazing gifts we could receive right now, memories of moments with Noah captured in such an artful and beautiful way. :)
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).

Got a call from neurosurgery nurse today, and the scan showed the tumor has grown ½ cm, which is a definite cause for concern. Dr. W. wants to move the surgery to Jan. 3rd (which is the day he returns home from traveling out of town). If we see any symptoms present in Noah, or notice any change in his abilities, we will take him in for an emergency surgery….which we definitely don’t want. All of the other neurosurgeons are booked for next week, so an emergency surgery for Noah would mean that he would be worked in around other planned surgeries, with a surgeon that has never operated on him before. I have total confidence in all of Dr. W.’s colleagues, but I do find comfort in the fact the Dr. W. has operated on Noah twice before with amazing outcomes, and I would so prefer that he do this third surgery as well.

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!

I feel like I need to make an addendum to the last blog. If you haven't read my post from Tuesday, I wrote "My primary role for the past 3 ¾ years has been to love, nurture, protect, and care for him (Noah) 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." Most comments I've received have reassured me that I will always be a mother, and I do agree with that. But what I was referring to in my statement was my "role" as a mother. With no other children in our family, that role would change to something else. I wouldn't have anyone to "mother" anymore, and that would be an extremely difficult change for me. I decided I should expand on that comment a little more in hopes it will be interpreted the way I intended it. Thanks for all the encouragement you all have given me since the last post; I really didn't expect all the responses I received and I'm very humbled that God would use my writing to encourage others or remind them of the importance of trusting Him.

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). 

The steroids have helped to get rid of Noah's rash, but they have in no way helped his personality or already short fuse. He has been re-named the little Hulk. He finished his last dose today and he has pretty much gone back to being just a strong-willed child. (A strong-willed child on steroids is a tough match I would think for even the most seasoned of disciplinarians!) He spent the weekend visiting with his Grammy, aunts, uncles, cousins, and friends, and Mimi came down for a visit Saturday night. Many of us have loved him through his irritated comments and angry tirades last weekend. :) This boy will tell you to "Stop talking to me!" one minute and run to give you a kiss and tell you he loves you the next. He has always fought with everything he has and loved with even more. I know, as his mother, you expect me to believe he is wonderful. But beyond my relationship to him and my deep love for him, there is something so special that I would hope others could recognize...a God-given sweet spirit that loves Jesus already, that has compassion for others. There is slight glimmer in his eyes that tells me, "I'm going to do great things." I've written this story a while back (humble me if you've already read this), but when Noah was born I began praying a specific prayer over him most nights as he slept: "God grow this child to be a mighty man of Yours, a man who will follow you at no cost, who leads many to Your Kingdom, who will be a righteous man in an unrighteous generation. This is Your child that You have loaned to me and John, and He will be used for Your glory." I believe that to this day God is answering my prayer and unraveling His plan for Noah's life. This young man has an army of evil against him, but we will not cease praying for His power and goodness to overcome the evil of this world. Right now that evil is in the form of cancer.Tomorrow it could take another form. We don't know what tomorrow will bring forth, but we do know that we stand on Jesus the solid Rock, with a Holy Spirit that interceeds for us with groanings that we cannot undestand, but that the Father does. When you are out of words to pray for my son - which I find myself in this position often, because I am asking constantly for healing - ask the Holy Spirit to pray for you. Please don't give up storming the heavens with prayers for Noah. 

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.

It’s been a good weekend for the Crowes. Noah began Friday with a short visit to the doctor to have his blood tested and then have his port de-accessed. He is always very brave in these situations. Getting his port de-accessed is a little uncomfortable for him due to the adhesive that holds the tegaderm bandage over his “noodle”.  But as always he toughened up through the process and we were out the door.

            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

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



  

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!

Guess who is playing the part of Darth Vader?

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 "why's" 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. You can click on and see the listing here

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 outpour 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. Please click on the lighthouse image below to find out more information about this wonderful organization. 

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 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

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 quite, 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 recurrance. 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 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!!! 

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 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

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 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.

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 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).

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 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,

Jess

Noah had his first radiation treatment this morning. We arrived at the UAB Radiation Oncology building at 7:00 AM. Noah was greeted in the lobby by Dusty, a 9 year old shih tzu that is part of the 'Hand in paw' dog therapy program here. Children are scheduled for treatment first every day and the hand in paw program has a dog in the lobby every day for the children to enjoy while they wait. 
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

Noah and I are settling in our new "home" tonight. John will be here for a couple of nights with us, and will thankfully be present at Noah's first radiation treatment on Thursday. Noah and I went grocery shopping - quite a larger feat than in the small town we are from where it takes 5 minutes to get to "the Walmart" down the highway. It will take some time adapt to the way of life in the city; the traffic, the parking, the TRAFFIC...but we can do it!

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.

It is just after noon and we are already home from Birmingham; I believe this is the shortest trip we have ever made down there. Noah had his port accessed this morning at Children's and then we headed to UAB radiation center to have his scan and mask made. He woke up from the anesthesia a little quicker than I could get to him, so he wasn't happy about that but otherwise he did great. His treatment will begin a lot quicker than we expected - this Wednesday he will resume his tumor starving therapy and then Thursday morning he will begin the radiation treatments every morning (M-F) at 7am. So Noah and I will be officially "moving in" to the Birmingham apartment on Tuesday evening. It's a nice place, built in the 40s, plenty of space for our necessities, neat and clean, and only a few minutes drive from the treatment center. God is really providing our needs during this time, and we thank all of you who have contributed in some way or another! 
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! 

We met with Noah's radiation oncologist on Wednesday afternoon to discuss his treatment. During the meeting we found out that the LP results were clear and there is no concern with his spinal cord, praise God! So the radiation will focus on the cavity in his brain and really hit where the new growths are located. Noah may be receiving some additional chemo/tumor starving therapy during the weeks he gets radiation; Dr. Fiveash said chemo often aids in the effect the radiation has on the tumor. There are some risks involved as with every other treatment Noah has had, but the greatest concern we have today is saving Noah's life. I've mentioned before that Noah will have another MRI once this treatment is completed; what we need to see is a scan that looks the same as this last one. Our doctor explained that when the radiation works the growth will die, but not change size...it's not going to disappear. Please, plead with the Lord on Noah's behalf that He will use these amazing doctors, nurses, and technicians to heal our little guy. 
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. 

We arrived in Birmingham last night. We have been given a place to stay by the Homewood Church of Christ here in Birmingham. They own a series of apartments and offer them to families with medical crisis free of charge. It is a very nice place and we are so blessed to be here. 

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 

John 

Since the last blog we have secured an apartment in Birmingham, only about 1 1/2 miles from the hospital, free of charge. The Homewood Church of Christ owns a series of apartments on 29th St. South and allows patients and their families to stay there during their treatment/recovery. What a huge blessing it is to be so close to Noah's treatment facility! We appreciate all other housing offers that have been made to us as well. I have a list of homes and people in the Birmingham area in case this apartment doesn't work out or if I ever need to call on anyone locally. I am so thankful for everyone who has responded to our recent news with love and kindness, and especially prayers.
 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).

Over 3000 people visited this site yesterday. We are totally blown away by the love people have for Noah. We have received so many great words of encouragement and support from so many of you. Thank you for your love!

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

John

Today started very early. We woke at 5 and were on the road by 6 on the way to the hospital. We are so thankful to our church family for putting us up for the night in a hotel so we wouldn’t have to drive down this morning. We didn’t have to wait very long for the MRI. Noah was first on the list, and that was a huge blessing. These kids cannot eat or drink anything after midnight before the MRI and sometimes the wait can be all morning and into the afternoon depending on what emergency’s come up at the hospital. He was in the MRI before 7:15 AM.

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.

John

We have an MRI time for this Wednesday (1/26); we are to be at One-Day Surgery at 630am, which means his MRI will be around 730-8am. This is great news because Noah shouldn't have to wait very long without food or drink and we should have results back even before he begins his treatment. Thank you so much for praying for us, especially Noah, and we will update the site as soon as we get information and get to a place where we can do so. God bless!!

Well, it's been almost a month since my last update and not much has changed. We had a great Christmas holiday season and had to clear out old toys to make room for the new ones. Noah got his "big bike to ride on" and I will have John post a fun video of him riding his gift from Santa. As far as Noah's condition, he is doing well as far as we can tell. He looks great and still has only a few side effects from his treatments. He started pre-school a few weeks ago and is enjoying his new class. I do have a few speciific prayer requests: Noah has an MRI scheduled for next Wednesday, Janurary 27. I don't have an exact time at this point, but it should be in the morning. He will go from MRI to his clinic where he will receive his sixth treatment from his new protocol. John and I are trying to be as confident as we can that he will get a great report and the scan will be perfectly clear, but there is ALWAYS a lingering "what if" that hangs out in the back of our minds. We need the Lord's comfort and control of our anxieties during this scan. Like I mentioned before, Noah seems to be doing really well - he appears to be a normal (almost) 3 year old with a very short haircut - but I have been struggling emotionally. I've heard that this is common, but anytime I see a picture or video from any past treatments or surgeries, or even if I think on it for too long, I feel an even greater emotion than I did at the time of the occurance and wonder how in the world I was able to keep it all together at that time. It's very frusterating to not be able to control those emotions.
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.

We have made it through Noah’s first new treatment. We arrived at the hospital this morning by 8:45 and were in at the clinic before 9.  Noah had a very good attitude in the waiting room. Jessica did a great job explaining what was going to happen today last night to Noah before he went to bed. When it came time for his port to be accessed, he did it like a champ – not even a whimper. We were able to stay in one of the exam rooms for the entire time of the treatment. Noah only received 1 chemo drug and one tumor starving therapy treatment today. Before these drugs they gave him zofran for nausea and Imodium for diarrhea. So far they have worked. While the machine was pushing the drugs in, Noah was able to play in the floor with a few toys, take a nap and play with the Ipad. The only side effect we have seen so far is that he made sounds and gestures that he had a bad taste in his mouth, which is common in chemo, and he wouldn’t eat dinner. Jess bought him an m&m cookie and he wouldn’t even eat it. I hope we can make it through the next few days without him throwing up. That would be great.
 
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! 

I finally made the dreaded call today to Noah's oncology clinic and we are scheduled for Noah to start his treatment this Wednesday (11/17) at 9am. As I mentioned in the last post, this is a different protocol than the previous one. He will receive the treatment about every 2 weeks for the next six to twelve months. The side effects of these new drugs are somewhat similar to the others, but less severe, so we've been told. Of course there are always potential serious side effects with any drug, but the chances of that happening are very low. Dr. Reddy believes that Noah will no longer need to be admitted for fever/neutropenia as he has before since these drugs shouldn't knock his immune system down so much. The treatment on Wednesday will be in clinic; he should be finished before Wednesday afternoon.
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. :)

Well, I was supposed to post an update last night but I failed to do so because…I fell  asleep. So sorry. Our meetings yesterday were once again overwhelming and filled with information that John and I will have to chew on for a while before we make a decision. Noah’s neuro-oncologist was very glad to see him doing so well. She had nothing but great things to say about his appearance, how the incision is healing, his energy level, and his speech, everything of that nature. However, she has chosen a course of treatment that she would like for him to try for at least 6 months and possibly for one year. Due to the aggressiveness of this cancer, there is a huge chance it will come back. She is worried that if we do nothing but wait from MRI to MRI, that he will have another recurrence. The two drugs she has chosen (through research and discussion with her colleagues) are Irinotecan (CPT-11), a different chemotherapy drug, and Avastin (bevacizumab), which is not a chemotherapy drug but a fairly new tumor-starving therapy designed to block the VEGF (Vascular Endothelial Growth Factor) protein that is produced by normal cells and overproduced by cancer cells. Because Avastin is a new therapy long-term side effects are not known. As I understand, this drug has never been used on anyone with Noah’s diagnosis. John and I are still learning about these two drugs and have not made a decision yet.

            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

Just a reminder that tomorrow at 830am is our meeting with Noah's oncologist. Please be in prayer that Dr. Reddy, John, and I will make the right decision regarding Noah's treatment. We are also meeting with our genetic counselor tomorrow afternoon. We appreciate your prayers for wisdom and discernment and will update tomorrow with the outcome of our meetings. Thanks!

We made the trip down to Children’s hospital early this morning for our post surgery check up. Noah had his stitches removed and was so tough while they took them out. He had the Ipad to distract him while the nurse pulled them out and he sat very still and for a two year old I think he did pretty well! He didn’t whimper, cry or squirm. In fact – I was more nervous about it than he was. Nadine, his nurse, pointed that out to Jessica and I. We all had a laugh.

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!!!

 JD    

4:07 PM    We are in a room! #682 Noah had a good night of sleep. He woke around 6:00 AM. We were not allowed back to where was is until 8:30, but Noah can be a handful when he isn't happy so they let Jessica back around 7:30 AM. At 8:30 we all went to the MRI and Noah did great!  Dr. Wellons (his neuro surgeon) came and gave us the report. From looking at the scan he saw that he was able to remove all of the tissue affected by the tumor and a lot of scar tissue. He was very pleased with the scan and very pleased with Noah's recovery. 

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

5:54 PM    Noah is now in recovery. The surgery went very well. Everyone on the team was pleased with how everything went. Noah is still asleep and we are waiting for the moment we can go see him. Dr. Wellons was able to remove all of the new growth and all of the scar tissue as well. He is sending all of it off for pathology report. Noah has an MRI scheduled for in the morning to look at the area. He will stay in the PICU overnight and hopefully be moved to a room tomorrow. 

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. 

4:20 PM   I just talked to one of Noah's Physicians and so far so good. He is doing well. They have given him a unit of blood already. The Neuro surgeon currently is using a microscope to look at the area where the tumor is. No word yet on how much longer it will be. Hopefully we will be able to update that its all over. 

We are in the surgery waiting area. Noah has just fallen asleep which is a huge blessing. Soon the anesthesia doctors will come and give him some medicine (versed) to help calm him as they take him to the O.R.   Once inside Noah will have about 4 I.V.'s    We we just told he is anemic so he may need a blood transfusion during the operation. It is scheduled to last about 5 hours. There is a good possibility the incision will not be as large as the first surgery, and that will make recovery easier. We will be kept informed of the progress as the surgery goes on. As much as I am able, I will pass on the information.

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. 

It is 8:30 AM and Noah is in the MRI at the moment. Todays scan will give his neuro surgeon a 3d image of the area of the surgery. He will use this data to map out the procedure before the first incision. The small green tabs on his head are reference points he will use to know exactly where the tumor is. Dr. Wellons explained to us that the area the tumor is in is not the place we thought it was originally.  For months we have looked at a small area of scar tissue and wondered if it was tumor. The new growth is not in this place. 

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. 

We got great news this morning. One of Noah's doctors came into his room around eight a.m. and told us we would be able to come home today. Not because he is any better, but out of compassion for him. He hasn't had a fever in seven days and his blood is clear of any infection. His neutrophile count is still very very low. Noah currently has .017% of an active immune system - which is better than what he had yesterday. They didn't want to see him in a hospital room any more than we wanted to be there. They let us leave on some strict conditions - continually monitor for fever, no crowds, no playing with the dog, no going around barefoot, etc...  


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


John

On Saturday August 14th, Noah began running a fever. By nine o’clock that night it was high enough that he had to go to the hospital. We loaded him in the van and Jessica and our good friend Rachel Quinn made the drive down to children’s hospital. Around three o’clock that morning he made it to a room. Since then, his ANC count has stayed at zero. The ANC count shows how strong his immune system is. When it is at zero, his body has little to no white blood cells. At this point he is in the room without a fever. He gets antibiotics every day and platelets when he needs them.  When his body begins making white cells again and gets stronger he should be able to come home.

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.

 

John

We have a tough little boy. Sometimes I am just amazed at how Noah handles some situations. Because we are again going through chemo, we must give him a shot every night to help boost his white blood cell count. Jessica was preparing the syringe and asked Noah "Where do you want to get the shot tonight?" Noah was lying in the bed beside me and pointed to his left arm. He usually gets his shot in his leg. We were a little nervous about how he would react to the needle. If he wiggles at all once it is in it could cause him more pain. She asked him again and he pointed at the same arm. As she prepped the spot with an alcohol swab he started pointing to his leg and saying "shot, shot" but it was too late.

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. 


John David

We are on our way to Birmingham to begin Noah’s 7th chemo treatment (of 10).  We have had a great break from this sickness, with our trip to Disney World, and the Chattanooga Aquarium, play dates with friends, etc. and have been spoiled with a “normal” life for the past few months. Emotionally this treatment has been hard for me to swallow.  I don’t want to start this process again, but who would? I’m not sure how long these next 4 treatments will last, but I’m guessing about 5 months based on past experience.  Please pray for Noah just as you have during his previous treatments, to be free from nausea/sickness and for his blood to stay strong, for infection to stay far from him, etc.

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.  

As I stated through Facebook updates earlier today, Noah's MRI went really well, and pretty much as scheduled. We were very pleased with how quickly we moved from one day surgery waiting to MRI waiting and then to the clinic. Once in clinic we were sent directly to a room to wait for Dr. Reddy. Once she was able to see us she gave Noah his usual check-up and stated he looked great and she was pleased with the results of the scan. "The scan looks good," she said. "There were no changes from the last MRI." All the enhancements from the last scan were there, but none had changed, and that is what they are looking for. So that was good news. She still cannot say for sure what the "enhancements" are, especially since the brain tissue is so abnormal due to the enormous size of the tumor. There is of course still a large void where the tumor once was. He will have another MRI in 3 months and will continue that trend for the next year. Because there are 11 treatments left in this particular protocol of treatment, Dr. Reddy said it is reasonable to consider doing 4 more treatments, which would give Noah a full year of treatment. The other patient she has had with this same cancer did 10 treatments. John asked if it would be possible postpone that treatment for 3 months, and then re-asses after the next MRI. She also said that would be reasonable. Basically, she left the decision up to us. John asked her what decision she would make if it were her child, and she couldn't answer that question. "I don't know, I would have to be in your shoes," she said. So, to re-cap, John and I must decide within the next week whether to continue with 4 more chemo treatments, ending somewhere around January 2011, or take a 3 month break from chemo, then have another MRI to see how these "enhancements" have responded. There are risks involved with either decision. We will have to prayerfully weigh the pros and cons of each choice and come to an agreement...it's going to be tough. Fortunately, we have planned a vacation for the next week, so hopefully some time away will aid in the decision making process...we are taking Noah to Disney World and are super excited about it.
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!!!

Tomorrow is the big day - Noah's MRI is scheduled for 7am, and we were told to arrive at 6am. Based on past experience, the actual scheduled time for the scan means nothing; we hope Noah doesn't have to wait for hours without eating or drinking as he has in the past. 
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.

Noah so far is doing really well following his 6th chemo treatment. We went down to Birmingham on Tuesday afternoon so Noah could see the zoo once again. We were in the hospital from Wednesday through Friday morning. We expect his counts to drop in the next few days and a fever to hit him again, so we will more than likely be heading back to Children's towards the end of the week. Noah has an MRI scheduled for June 30th, and we should know that afternoon what the results are and if he will have to continue treatment. Please pray for a clear MRI! I will post when we have to go back to Birmingham.

Well, we had our clinic visit this morning in Birmingham, got Noah’s port accessed, and realized when his labs came back his ANC had dropped considerably. Because of this, Dr. Reddy thinks it will be best to wait another week before we begin treatment no. 6, and John and I are both in favor of that! We are now leaving the hospital and on our way to have lunch and spend a few hours in Birmingham before we come home. I hate that Noah’s body is having a hard time coming back from the last treatment, but I’m very glad that his doctor is willing to give him another week of rest. We are looking forward to a week without shots and some normalcy!

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.

It has been 12 days since I last posted, and I've been told that is too long. So, for that I apologize! I have been so caught up in life the I haven't made time to let you know what's been going on with Noah. He has had a really great 12 days. Since we left the hospital two Wednesdays ago he has not  had any problems at all. His blood counts came up really well, and his platelet levels are high enough to go ahead with his LAST scheduled treatment this Wednesday. After this treatment and the neutropenia that is sure to follow, we pray there will be NO MORE TREATMENT needed and our boy will be cancer free.
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.

Noah's ANC came up remarkably this morning and we were told we would be going home. This was such a surprise for us. He is still neutropenic so we will continue to watch for fever and give him a nightly shot to stimulate his white cell growth. We will return to Children's on Friday morning for lab tests and a platelet infusion (outpatient). This is such a blessing for us since we expected to be in Birmingham through Friday! Thank you for your prayers!

Noah's ANC went up a little today and he hasn't had a fever at all. Hopefully after a few more days of this trend he will be well enough to return home! My mom saw the first printed t-shirt and she said it looks great; I will post an actual picture of the shirt on the Order Noah T-Shirt page as soon as we get home. I won't be able to blog for the next few days (my hp won't let me edit our site from the hospital & John will have his computer at home) but you can follow my status updates through Facebook. I'm sure the next few days will be pretty uneventful as we just wait for his counts to rise. Please pray for his neutrophils to grow! I will post again sometime on Friday - hopefully from my home. God bless, hope everyone has a great week. 

I had a great Mother's Day yesterday; Noah and I were lazy during the morning and then we had lunch with Daddy and Mimi. He even played outside for a while during the afternoon. His temperature started slowly climbing around 6pm, and by 9pm we were on our way to Birmingham. He had his port accessed and labs drawn while in the ER, then we were admitted upstairs around 230am. He is getting an antibiotic dose, has already had platelets this morning, and is now getting some red cells. His ANC is 2 today; I'm expecting that to bottom out and then begin the slow process of climbing up. We should be here about a week. I'll continue to update as the week progresses. Thank you for your prayers! 

I have created a T-Shirt Order Page; See the Order Noah T-Shirt link at the top of the blog for more info!
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!

If anyone has asked about Noah this week, I've replied, "so far, so good!" We got a good report on his blood test yesterday; he has a pretty good amount of energy and has been visiting with family every day since we returned from his last treatment. Nevertheless, our bags are packed and we're prepared to head back to Birmingham at a moment's notice.
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! 

This picture is of Noah's last dinner before the chemo...he loves turkey and corn on the cob, so we had a Lawler's feast. I expect his appetite to dwindle as early as tonight. We are currently in Birmingham for his 5th treatment (of 6 scheduled) and should be here through mid-day Friday. The past week has been a great one. Noah's blood counts were pretty good, so we were able to get out of the house and even do some grocery shopping with him. He played outside when the weather permitted, and visited with his cousins for a day; he hasn't seen them since December, due to low white cell counts and sickness. Things were almost as good as "normal" so going into this treatment has been hard, knowing his health will begin to decline pretty much immediately and I will be back in hyper-sensitive keep-my-son-safe-mode! So keep praying for us please, especially for John as my patience decreases and my nervousness is on the rise, due to Noah's impending neutropenia and potential for infection. 
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!

I spoke with Noah's nurse practitioner yesterday and after talking his lab results over with the oncologist they decided it would be best to wait a week on the treatment and let his body bounce back a little more. So the next treatment will be Wednesday the 28th. He has lots of energy right now and is eating really well so I'm glad he will get an extra week of that.
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!

Noah's lab results came back ok today; white count/neutrophil count is rising, but his platelet count is a little low. He won't get an infusion, but if his platelet count doesn't come up enough by Monday then we will push his next treatment up a week to give his body time to recover (it is scheduled for this Wednesday). This is fine with me as I would like to see him have a week of good blood counts, and let him have some social interaction, which he is starving for!
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. :) 

This one's short and sweet: We arrived home around 3pm yesterday afternoon! Noah is doing well and enjoying his toys and is happy to be able to run and play freely without the interruption of vital signs check or being hooked up to an iv, etc. We have 7 more days before we return for Noah's 5th round of treatment, and we're going to make it as fun-filled as possible. His blood counts will be checked again on Thursday, so hopefully they will be high enough to continue with the next treatment as planned. Thank you for your prayers; we are so excited to be back in Athens. :)

I knew I shouldn't have got my hopes up...I had convinced myself that today was the day, prayed in faith and stood my ground, but we're still in Birmingham. Noah's ANC was up from yesterday, he just got more platelets, and we're still waiting. I'm very disappointed, so I'm trying to recover from that. John and I have a marriage enrichment class later this afternoon that I was absolutely certain I would get to attend in person; now I have to try to "be there" via skype. This morning after breakfast Noah wanted his shoes on, then found his ball cap and put it on, then asked for his coat...he is ready to get home as much as I am, if not more. He looks good today, is feeling good, and wants to run and play in the sunshine...come ON neutrophils! So my hope is for tomorrow, while I struggle through the long wait for John to get here. Please excuse my negative tone, but I'm just being real. :) It's been a LONG week. Thank you for your continued prayers, hopefully tomorrow's blog will be from Athens.

We're still in Birmingham. Noah just got more platelets and is now playing with his new Thomas the Train set & helicopter (John had an emotional breakdown in the hobby shop). He's feeling a little better today. Yesterday afternoon he spiked a fever again and is now getting an additional type of antibiotic. His ANC is still zero, so we are waiting and praying for that to start going up. Blood was drawn yesterday for cultures, but I haven't heard anything about them - I'm assuming no news means no bacterial infection.
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. :)

Noah woke up this morning very tired - he usually hits the ground running, but his blood counts are very low today (ANC is zero). If anyone has been around him for any length of time they know that he is ALWAYS  on the go. He will get blood and platelets today. John is with us but will have to leave for Athens tonight for a meeting. I may not get updates out every day due to computer issues, but hopefully I can get John to keep the site updated from home. Thanks again for prayers and support; we're hanging in there!

I am excited to announce that our ABTA Path to Progress team "Fighting the Flood" for Noah has already met it's initial "modest" goal of $500! We have now increased that goal to $1500. I am very close to being able to create a page on our blog specifically for our t-shirt sales; the proceeds will go to brain cancer research as well. We also have several more runners/walkers joining our team. If you are interested in joining/donating please contact me at hvnbnd182@msn.com or visit our Path to Progress Team Page.  Thank you so much for your contributions!!
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...

The American Brain Tumor Association is hosting a "Path to Progress" 5k Run/Walk in Chicago on Saturday, May 22.  Because of the lack of funding for brain tumor research, and specifically the lack of research/study of Noah's particular type of tumor, we have created a team in honor of Noah. So far John and our friends Dave and Rachel are participating in the race and in addition raising $ to support this cause. We are a little behind; we have less than 2 months until the event. If you are interested in donating money or joining our team to run please click on the link below to access our team page. Even if you are not from the North AL area, we would love for you to meet us in Chicago the day of the race and join our cause. Also, a donation of any amount will be greatly appreciated, and tax deductilble. We have set a very modest goal of $500 to begin with, but are hoping we can greatly surpass that amount as new team members join. In addition to donations we will be selling t-shirts to raise money for ABTA; I will post the t-shirt design (personalized for Noah) and how to purchase in the near future.
In addition to signing up through the ABTA website, please send me an email at hvnbnd182@msn.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!"

It's good to be home. :) Noah has been doing ok; he's still vomiting here and there, as I'm trying to wean him off the Zofran. It's just taking a little longer this time. He ate some yesterday and drank a little, but today he isn't wanting to eat much of anything (except ice cream). He's had a few sips of milk, and I'm praying the appetite will come back soon. His temp. is going up and down, so I'm watching that really closely. Dr. Hawthorne told us before we left on Saturday that she would expect us back around this Wednesday and Thursday, since it's harder for his body to fight sickness with each treatment. He has a pretty runny nose and a slight cough, so I'm guessing the fever could spike at any moment.
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!

Noah is finished with round 4, technically, but he will feel the effects of it for a few weeks to come. He is sicker this time. The Zofran hasn't worked as well as it usually does, and he has thrown up several times today. He did not eat or drink anything until dinner, when he ate a few bites of turkey and some m&m's (hey, whatever he will eat these days) and is still keeping them down. He's had a few sips of water tonight, and a small amount of Sprite. He will ask for milk but is unable to stomach it. His energy level isn't the norm...he's been sitting/relaxing with me and John a lot, which is pretty much unheard of. This season is going to get worse before it gets better, I'm afraid. Good news - we leave in the morning. We will begin his "white cell booster" shot tomorrow night, and begin the countdown 'til we come back to Birmingham. I'm praying for his nausea to subside and appetite to return soon.
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.

Author Unknown

We arrived at Children's at 815am, Noah had his MRI at 1215pm and hit the recovery room around 1. Now we are in our room on 4 Tower and will start chemo in about an hour. 
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!

As you can see in the picture, Noah wasn't very excited about the train ride at the Birmingham Zoo. He stuck pretty close to me and protested a few times before the ride started. About 2 minutes into it, he finally began to enjoy himself, and now he can't stop takling about the "choo-choo." The zoo was an ok experience for us. Because Noah is an active guy, he doesn't like being strapped in a stroller when there are new places to explore. Unfortunately, he doesn't respond to the word "stop" quite yet, and he fussed most of the time. Of all the animals at the zoo, he found the turtle the most intersting and wanted to watch him to entire time. Every exhibit we went to he would call for the turtle. :)
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.

Noah has had a great couple of days - his health is good, he has tons of energy, and his appetite is pretty much back to normal. But as soon as he reaches this point, it's time for another round of chemo and downhill from there. I'm especially nervous about this upcoming trip to Children's because he his having his 4th MRI on Thursday, which will show us what kind of progress he is making with the chemo - is it working, keeping the tumor cells at bay and killing any cells that remained after his extraction; is there any regrowth of the tumor...of course we're praying for an amazing outcome and for God's will, but it's hard not to be anxious. We have a clinic visit early Wednesday morning with Noah's neuro-oncologist; he will have his port accessed and labs checked, then we will be free to go for the day. Hopefully we will be able to plan a fun-filled day for him to enjoy and stay in a hotel that night. We won't know the exact time of his MRI until Wednesday afternoon. Hopefully it will be early Thursday morning so he won't have to go very long without food/drink, and also so that he can keep his chemo treatment on schedule. We are expecting to stay through Saturday, possibly Sunday, because of the set back due to the MRI. I am asking for prayer for the same things as before his last treatment (his health and response to the drugs, his appetite, strength, cooperation, etc.). Even though his white cell counts have dropped more quickly with each treatment and it has taken longer for them to climb back to where they need to be, he has not even seemed phased by it. Even when his red counts are so low that he needs an infusion, he still has so much energy and plays and laughs, and definitely hates being confined to his hospital crib...so thank you for praying. His resilience amazes me.
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.

John was home with Noah tonight while I was at a meeting for a few hours. I called on my way home to see how everything was going and Noah just had his shot and was enjoying his ice cream reward. John told me that he was worried the shot would hurt more than usual because the numbing cream we use was rubbed off before it had time to take effect. While he was putting the needle in Noah's leg he apologized to him for having to give the shot, and for it hurting worse than usual. With the needle still in his leg, Noah reached up and put his hands on John's face, leaned over and kissed him. 
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! 

This is a picture my mom edited. Just a quick update: Noah is doing well today; no fever. Hopefully the cut on his head will heal soon. We've had a fun day. Will check counts in the am and post on how he's doing!

Noah just had a small accident while throwing a tantrum and knicked his incision...it's a small cut - took a think layer of skin off, and his platelet counts are ok so it's clotting, but we are worried about infection since his white cells still aren't strong. Please pray with us against fever/infection...not only for his health, but to keep his next chemo round on schedule. The site has been cleaned with alcohol and covered w/ an antibacterial polysporan, but I'm still nervous. So please continue to pray for his health!

We are home! We were discharged around noon today. We will continue to monitor Noah's temp. because he is still more susceptible to infection. He has had a great day and his appetite has returned almost to normal. Thank you so much for your prayers for his health.
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. :)

Well, Noah's lab test revealed he had made one neutrophil! And one is much better than none. His doctor did the neutrophil dance to encourage him to keep making them...I'll try to catch that on camera tomorrow. ;) His ANC (absolute neutrophil count) is about 8; the goal for a chemo patient is 500; the average ANC is at least 1500. Since Noah has not had fever since Saturday, his blood cultures have not shown any bacteria, no infection...we should be coming home tomorrow IF his neutrophils continue to grow.  So pray for those little white blood cells! I can tell my patience is wearing out with Noah and his patience with me. Yes, we're together all the time anyway but we usually have about 1800 square feet to move around in. This hospital room (which is a really nice size and fits 2 chair-beds comfortably) is starting to close in on us. I am thankful that Noah hasn't been sick and on lots of meds; he's been able to sleep comfortably with only an occasional vitals check at night and he gets to play at the Lily Pad about once a day. Things could be so much worse, I know. But that doesn't make me any less ready to get home - especially since that's where my sweet husband is. John and I have never spent much time apart at all, so this is an adjustment in that aspect as well. I will post tomorrow, hopefully with news that we are HOMEWARD BOUND!!!

Noah's counts pretty much bottomed out today. His white cells are zero, his ANC was nearly zero, and he is going to need blood today. We thought we would wait until just before we headed home (which has changed to Thursday, best case scenario) but his counts are low enough that he is getting an infusion this afternoon. He got to play for about an hour today - rode a tricycle, went to the Lily Pad, watched cars drive under the walkway to the Children's Harbor, then he played there for a bit. By the time we got back to the room for lunch and washed any germs away, he was exhausted and fell right to sleep.
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:
1. www.beadsofcourage.org
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!

I was searching through our family pics and came across this one, which I love! Noah has always been such a fun and happy kid. He was 9 months old here; we were getting ready to decorate our tree after Thanksgiving '08. I call this his "super-baby" picture. :)
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).

John is on his way down to Birmingham after service this morning and Noah is sleeping. He is doing well- no mouth sores, decent appetite, drinking pretty good, no more fever - but his counts are continuing to drop, so he will probably need some blood and platelets tomorrow. Hopefully after that his blood levels/ANC will begin to rise so we can head home. Thank you for your prayers!

"Then He took a little child and set him in the midst of them. And when He had taken him in His arms, He said to them, 'Whoever receives one of these little children in My name receives Me; and whoever receives Me, receives not Me but Him who sent Me.'" Mark 9:36-37
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.

It is about 2:45 am and I'm just getting settled into my chair-bed in room 451. My mom and Noah are already asleep, but the control freak in me had to get everything organized and put away in the designated drawers and cabinets in our room before my mind could rest. We arrived at Children's ER at 10:30 pm and hung out there until 1:30, when our room was ready. Noah has been neutropenic since Thursday, so we've been expecting a fever to show up at any time; it came around 9 pm.  Thus far he has been given some antibiotics, had blood taken for lab testing, and is/will be getting IV fluids...so I'll be changing diapers about every 2 hours. :( He hasn't been drinking very well the past couple of days, so he could be developing some mouth sores. Never sure how long this stint will last...from past experience I expect to be here 4-6 days. With many prayers and much faith in a quick healing, hopefully we will be home much sooner. Although I can't complain about this at all - I've been following the blog of a young woman from the Huntsville area with Burkitts Lymphoma who has been in the hospital for 25 days following her chemo treatments; she just returned home yesterday. You can read her story and send her words of encouragement on her webpage here.
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! :)

Yesterday was Noah's 2nd birthday. When he woke up I said to him, "Happy Birthday! Today is your REAL birthday, even though we had your party last week. You're 2!" He replied, "Me eat cake and ice cream?" So I asked my mom to pick up another cake for him and drop it by on her way to church. We had another party with Noah, Mommy & Daddy, which was a lot of fun - especially since Daddy was determined to get him the ultimate little boy birthday gift, which I will post pictures of above this blog.
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.

We arrived at Children's around 9 this morning and waited a while for a room to open up for us. Noah was very hungry and tired (which made those 4 hours pretty difficult); once we got in a room he ate a little and took a good nap. He got his first dose of chemo. shortly after he woke up and he's doing really well. He has played with his toys a lot, and just before he went to bed he had an audience of about four staff members while he played his harmonica, danced while Daddy played the guitar, and was just having a great time. He is now (finally) asleep.
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!

We celebrated Noah's birthday this past Saturday with our family. As you can see in the pictures below he was able to get outside and enjoy the beautiful weather and the birthday decorations some friends put in the yard. We even took him to the "kiddie carnival" where the Lion's Club was having a plate lunch fundraiser for him. It was a good weekend. And our house is now covered in EVEN MORE toys and balloons from one end to the other! Noah was really excited to have so many people in the house at once - he went from person to person hugging and soaking up the love. He definitely enjoyed all the attention he was getting! His actual birthday is Sunday (2/28) but since we have his third chemo treatment on Wednesday, we knew he wouldn't be well enough to have anyone over to celebrate this weekend.
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!

I just spoke with Noah's nurse practitioner about his lab results from this morning; they look pretty good. We will continue with the (GM-CSF) injection tonight and tomorrow night, then Wednesday night will be shot free! Thursday morning we'll check counts again to see if he can sustain without the injection. He is definitely getting used to the shot, and I'm gradually getting better at giving it, so there is less anxiety between the both of us each night. Last night we didn't have to restrain him at all; he just relaxed in John's lap and didn't even flinch when the needle went in. He's a tough guy now; I wish he didn't have to be.
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.

We're home! This morning Noah's ANC went up a little more, so after another platelet infusion we were on the road to Athens. As soon as I started packing and he saw me bring out the stroller he was looking for his hat and coat. The boy was ready to get home. :) We've had a good day; Noah has played with every toy he owns, just making sure that they are all still here I suppose. We're getting ready for bed and excited about sleeping without being awakened every few hours by someone with a blood pressure cuff and a thermometer. :) Though they are much appreciated! We're just glad to be home.
Thanks for your prayers and encouragement (and offerings of food and other forms of assistance)! You are amazing servants of the Lord. God bless.

It seems like we may be here for a while longer. Noah's neutrophil count was almost nothing so we may be here through the end of the week. I guess I should stop getting my hopes up that we may leave a certain day, because honestly no one knows. We just pray that his daily labs begin to look better and better. There is no "magic number" he needs to reach, but he just needs to set a trend climbing up instead of down. He is still confined to his room, and is doing really well considering that he's been in the same space for 4 days. John is here tonight and will stay through tomorrow, so I'm going to get out and find a new toy to keep him entertained. (We usually get him a new toy or 2 with each stay!) He is also eating better and drinking MUCH better, so he doesn't need fluids constantly and only stays connected to the iv for his antibiotics. This has allowed him to move about the room without me fussing at him to watch his iv, so he's enjoyed today much more than yesterday.
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

Just a quick update - Noah had a better day today. His ANC dropped a little, and he had another blood transfusion late in the day. He was completely worn out from not sleeping well since we've been here, so he slept for 3 hours. When he woke up after the transfusion he was full of energy w/ color back in his cheeks. He played for a long time, and now I'm still trying to get him to settle down at 11:15pm! Hopefully his ANC will go back up tomorrow, and we may get to go home on Wednesday. We won't know if he has an infection for 5 days (I don't think we'll have to stay that long though). Thank you for praying!

The boys are asleep, and I'm hoping I can get there soon. :) Noah is still getting fluids and antibiotics and is still confined to the room. He received some platelets today; his platelet counts weren't as low as they were this time last month, but because of his fall/bump on the head, Dr. wanted to give them as a precaution. She said even though the ct looked good, there could still be some slow bleeding. So far he hasn't needed any blood, but that could change depending on how low his counts get. I'm hoping they jump up tomorrow and continue to climb through Tuesday so we can get home! His temperature shot up last night, but that's been controlled with a few doses of Tylenol this morning. He's been pretty cranky at times today, but has had many more happy and playful moments than yesterday. I've posted a few videos made today on our youtube page. John arrived around 3pm, about the same time as some friends who came to rescue me from isolation for a while.
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.

It's almost Sunday as I write this...it's been another long day. Noah woke up at 8am w/ a fever, so we were told to go to Huntsville ER for some labs and antibiotics. It was a very stressfull experience; Noah decided to attempt an escape while I was reaching for a diaper and since his pants were around his ankles he dove headfirst for the ground, hit on the "fragile" side. His platelets were also low so he had a ct scan to make sure there was no bleeding or anything else going on under there. It checked out ok. He's just got a big bump and bruise on his head, and I've got one on my heart...it was something I could have prevented. After that he had to have his port accessed three different times, and another stick for labs (needed a different location). Labs showed him definitely neutropenic again, and he got some fluids and antiboitics over a few hours. By the time he finally got calmed down and was ready for a nap the hemsi showed up and stress hit us all again. Fortunately I got to ride in the back with him, and that helped him to nap for about an hour off and on while riding down to Bham. After arriving at Children's he continued to get fluids and antibiotics, and had a chest x ray. They think he may have a respiratory infection, but won't know for sure until Monday. Until then he is confined to the room, and basically "quarantined," where anyone coming in has to put on a mask and gown. We're praying that will end on Monday when they can determine what caused his fever this morning.
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.
Psalm 30
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.

We're having an ok day...Noah is a little stressed out and letting us know, but he is reacting well to the chemo. He is working on his last dose of etopophos right now, followed by another dose of Zofran (no vomiting please!). The last drug he will need here is a switch from Bactrum, which Dr. Reddy believes caused his rash, to Pentamidine, another prophylactic antibiotic, which he will only have once a month during his treatments. We're praying there is no reaction to this one. After some regular fluids overnight we should be free to go in the am after dr.'s rounds. Because of his drop in ANC after the last treatment, we are prepared to be back here in about a week to week and a half for treatment for neutropenia.
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:

http://www.joelevangreen.com

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!

I feel like I should be blogging more often, but there's really not much I can think of to write here lately, but I'll give it a try. Noah and I have been hanging out at the house mostly; I get out here and there when John or one of our moms can stay with him. Noah has been for a car ride several times, only to find he's getting out at the hospital or not getting out at all. But at least he gets a change of scenery. We had his labs done yesterday morning with good results. His ANC was as high as it's been since before the first round, so we got the thumbs up for the second round of chemo; we leave tomorrow morning at 7am and will probably stay at Children's through Saturday. Noah has a rash on his face, arms, legs, and bottom that's been sticking with him for about 6 days, and we're not sure what it is or why it's there. Hopefully we can figure that out tomorrow as well. He's had some headaches, and has been a little more clumsy and angry than usual. He is becoming even MORE strong willed than ever...he is approaching the 2 mark; I suppose that has something to do with it. It's SO hard not to laugh when I catch him doing something wrong (like sitting on the dining table) and he lookes up with a big grin and yells, "Hi Mommy!!!" in an attempt to distract me from what he's doing. 
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.

The pictures above are of Noah playing baseball on the Wii last night. He's a pretty good pitcher! :) We've had a lot of fun playing and just being together watching movies, etc. for the past few days since Noah and I have been under house arrest. We haven't had any visitors, even the grandmothers, for a while. We're trying to do everything we can to keep him healthy. When we left the hospital on Tuesday his white blood cell count was under 3000 (average counts for a "normal" person should be from 5000-10000). We go to Athens Hopital on Monday to check his labs again. Even if the counts look better, we're still not going to have any visitors; it's just too risky, after what happened last weekend. I'm not going to be getting out much either, in an attempt to keep myself well, and I will have my Germ-X with me when I do! John of course is around people everyday, but he's trying to take precautions as not to bring anything "unwanted" into the house. It's hard to do, but it's for the protection of our child and it's only for a season.

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!!

Just a quick note: We are home!!! We were discharged around 6pm last night. Noah's ANC went up after the transfusion, and hopefully it will continue to go up! We are going to Athens Hospital on Monday to check his counts again.
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.

Dr. Hawthorne and Dr. Watts came by earlie