Not news we wanted
To take a look at Noah you would not assume anything is physically wrong with him. Besides the scar on his head from his surgeries and the port under his skin on his chest, he looks and is acting like a three year old boy. His eyes are full of life, his laugh is contagious, his energy is full throttle all day & night. Noah gives no appearance of a child battling a brain tumor.
But the battle is raging...
In Clinic 8 of the Children's Hospital in Birmingham today we sat down with Noah's oncologist Dr. Reddy and our good friend, Chaplin Paul Byrd, and listened to our four options for treatment. We had hoped we would never get this talk. Other parents who have walked this path can identify it is a hard talk. It's nothing you ever want to hear.
The cancer attacking Noah has not responded to 4 different kinds of chemotherapy. It has grown back twice after two very intense brain surgeries. He was given the maximum dosage of radiation allowed and it has now grown larger than any other time besides when we first saw it in November 2009. I was not expecting it to be so large. When we saw the images from the MRI I was overwhelmed. It hasn't grown large enough to affect him yet. Unless God intervenes, it is only a matter of time.
The first option we were given was more chemo. It would make him very sick, loose his hair again, kill his immune system and put him back in the hospital. It didn't work in the past and there is no evidence it would work now. We don't want that.
Second option was a third surgery. Neither of us had any peace about this. It's off the table.
The option we have chosen and feel peace about is a clinical study he is eligible for. A new drug is currently in trial for cancer patients called MK-2206. It has had good results in studies with animals. The clinical trials with adults also had good results. The trial is now being phased for children with cancer. Noah is qualified to be a part of this trial. It is not a chemotherapy drug, it is a biological drug. They tell us the side effects will be very mild compared to chemo. Noah will take a pill every other day and for the first 10 days go to the hospital every day for blood work, urine samples and a physical exam. After the first ten days he will go once a week. After 28 days they will evaluate how the treatment is working with an MRI. While they give us very little hope it will dissolve the tumor, they hope it will keep it from enlarging. Hope is good.
We have an odd peace. A very odd peace. Today his doctor told us that there is very little chance Noah will survive. Our fourth option was to go home, do nothing and make the best of the time we have. We haven't landed there yet. But in the midst of this horrible appointment there is a peace in our hearts. I have had many scriptures go through my heart to my head today. I would like to share two.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philipians 4:6-7
Scripture doesn't tell us we will get everything we ask for, but it does promise us that we will have peace, and God will guard our minds. He hears our requests, and then helps us live with His answers.
Who of you by worrying can add a single hour to your life? Since you cannot do this very little thing, why do you worry about the rest? Luke 12:25-26
We have no idea how this story will turn out. What we do know is that worrying about it isn't going to do any good. God is God and we are not. His ways are not ours. His plans are not ours. His will for our life is that we glorify Him even in our suffering and disappointments.
We are still believing God for His healing. We are still asking God for a miracle. You can join in this prayer with us.
Friends of ours at the RAMP in Hamilton Alabama prayed for Noah in a service several nights ago. You can join in this prayer by going to this link and letting the video load and watching at 1 hour & 43 minutes --- 01:47:00 (give it time to load, it may take several minutes).
Noah's story could turn out very differently than what all the doctors expect. Only God knows - and we are trusting Him.
Many have asked what they could do to help. Here are some answers.
1) We are looking for a way to get Noah to Disney with his cousins. Some are working on this already. If you have a time share you would be willing to sell at Disney please contact us.
2) Pray that Noah will be able to swallow a pill. The new treatment requires that he swallows a pill every other day.
3) Pray for our house in Athens Alabama to sell. This will help relieve a lot of stress on us.
4) If you see Noah, treat him as normal as possible.
Many of you know us very well. Some of us have never met. For those of us who call Christ Savior, we are family - and family is extremely important. I plead with you, my family - spread the word ... and please ...
Pray For Noah
How I long to tell you that Noah is stable...those words were such a sweet sound to my ear the past 2 times he has been scanned. This scan result was not so sweet; Noah's tumor is growing once again. It is a relentless beast and I have never hated anything so much more in my life. His oncologist called just after noon to let us know the tumor has grown a substantial amount, though not enough to obviously affect him at this moment and probably not in the near future, but it is getting larger nonetheless. We are meeting with her on Tuesday at 12:30 to discuss possible treatment options. I don't even know who all is still reading this blog, or who has in the past, but I need to call you to pray once again, that God would work a miracle and glorify Himself - once again - in my son. We are still holding onto hope that there is some treatment out there that will heal him, and/or that God will supernaturally heal him. We are still holding onto his promise in Romans 8:28, that He works all things for good...however that looks to Him, we are standing on that. We have an amazing support system in Athens, and we are beginning to see a new support system circle around us at our new church in Hoover. We are so thankful to all who have helped hold us up in the past, and I know it's a lot to ask, but we still need your prayers and encouragement! This is very difficult, and we are hurting. Please pray over the next few days that John David and I will hear the Lord and follow the leading of the Holy Spirit as to what our next step will be. I promise to keep you informed as events unfold. We love you all.
A new home
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!
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.