I'm writing from the hospital; Noah just received two chemo drugs (round #8) and is sleeping soundly. He has been telling me that his stomach hurts, and he pretends he is vomiting in the plastic tub we use as a "puke pan." So the drugs are taking effect. His ANC wasn't quite as high as his Dr. would have liked, but to keep him on schedule she wanted to continue with the treatment and reduced the amount by 25%. I'm expecting him to become neutropenic in a shorter amount of time than usual, so we could be back here at the hospital in less than a week. He will get more chemo in the morning, fluids for the rest of the day Friday, and hopefully we will be home Friday evening or possibly Saturday morning.
I haven't written in quite a while because life has been pretty normal and quite boring until his treatments began again. (Boring is good, in my opinion - I don't particularly enjoy these "exciting" trips back and forth to the hospital in Birmingham.) There is a gap between the end of June and the beginning of August where I didn't blog at all. During that time we went to Disney world (John calls it a TRIP, not a vacation!), we spent time visiting with family and friends, had some play time with other kids, got a new puppy (who already weighs 20 pounds), grieved with my dad's family over the loss of a loved one, tried to find just the right color green to paint my dining room. . . and we didn't think about cancer very much. There were no shots or sickness or mad rushes to the hospital. We took our time and made it quality. It was good, and in a few more months we will have that back!
A few developmental updates on Noah: We have had some concerns since Noah's surgery that he would not be able to speak clearly or have complete mobility of his right side (mostly in his leg), and we were concerned about his vision. Since November he has had several physical/occupational therapy visits and there is nothing wrong with the movement of his arms and legs. He has learned lots of new words and has begun making sentences, but he will still need some speech therapy. His neurosurgeon assured us that he will catch up to his peers by age 5 if not before. We shared with his neurosurgeon that when Noah "reads" a book or looks closely at anything he turns his head so his left eye can do most of the work. Dr. said whatever damage is there will be permanent. (We have yet to take him to an ophthalmologist.) We are so thankful that Noah is developmentally on track for the most part.
We have been so blessed by many people from all over the country who have supported us through this season of our lives. I haven't been able to recognize everyone and thank them publicly for their gifts and support, but I would like to share with you about "The Naked Gospel Project." This project was a competition for musicians to enter an original song that best represents the premise of Andrew Farley's book "The Naked Gospel." Terry McNeal and his band entered their song "Transparent" (terrymcneal.com) and along with a lot of help from Terry's wife Sally and lots of determined voters, they won the competition and $5000. What's amazing and selfless of this group is they are donating the money to help us pay for Noah's medical bills. Here is a letter that Terry wrote to the author of the book and it is posted at www.thenakedgospelproject.com:
I am so thankful for you and The Naked Gospel Project for sponsoring this contest. Through your efforts, many people will surely be blessed. This has been an amazing journey of hope and faith for those who voted for “Transparent.” What started out as simply an opportunity to promote my music and ministry has ended up blessing a precious little boy and his godly parents, thanks to you and The Naked Gospel Project.
Several months ago, my guitar player Scott Owen was searching the web for promotion opportunities for the Terry McNeal Band when he came upon your contest. We talked about it, prayed about it, and read through the contest rules to make sure we fit the criteria. I watched your videos and decided on the one tune that would best fit. How much more “naked” can the truth be when we become “transparent” and let God's truth and love shine through us?A few weeks went by and the trials of little Noah Crowe were becoming more and more serious. He was diagnosed with a very rare form of aggressive brain cancer. John David and Jessica Crowe, parents of Noah, are dear friends of ours and true servants of the Lord.I was thinking about what we might do with the money if indeed we won the contest. Almost immediately, the Lord impressed on my heart that it needed to go to the Crowe family. Noah's medical bills were starting to become astronomical. I mentioned the idea to my wife and she said the Lord had told her the same thing! I immediately called Scott and yes, the Lord had told him the same thing! So that's how the concept was born. The Lord told all three of us simultaneously! Sally, my wife, started a FaceBook campaign and got literally hundreds and hundreds of people to join and participate. These dear people voted for “Transparent” and prayed for little Noah. Your contest facilitated literally thousands of prayers going up to the Father for this little boy!
Noah is still battling this awful disease. I believe he is going for his eighth chemo treatment next week. His parents have kept an inspirational blog going about his journey at this link: www.PrayForNoah.com . Please go to it and read about this precious little boy.
Again, Andrew, God bless you and your ministry.
We are very grateful for amazing family, friends, and community, and we will do our best to continue to pay forward the kindness we have received. Please pray for Noah to be free from sickness during this treatment and to be free from infection and fever in the coming weeks.
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.