As I sit here, thinking about what we were going through a year ago, I am thankful that I can hear my son in another room, playing and acting like himself. I am thankful to hear “life.” A year ago, we were sitting at St. Jude Children’s Research Hospital wondering if our son was going to die. There were several possibilities of why he was sick and we didn’t know yet what that was. Was it a virus that could cause great damage to his organs or even kill him, was something called aplastic anemia that there isn’t a great solution for, or was it a cancer that would require us to ask our other two kids to be a bone marrow donor? All of this just sickened me to think about. The only way to know for sure, was to do a procedure called a bone marrow aspirate. We got word late that night that Noah had cancer. Words a parent never wants to hear.
Noah has Leukemia (ALL), a very common childhood cancer. We live near the best children’s hospital for this treatment – St. Jude Children’s Research Hospital. A hospital that has changed ALL’s cure rate from 4% to now 94%. And a hospital that not only gives the best care, but doesn’t charge us anything that our insurance won’t pay! Seriously! You see, there is blessing after blessing IF I just look for it. God is so good to us.
I know now that eventhough I really didn’t want to hear this diagnosis, it was a blessing. The alternatives were so breathtaking, that Leukemia really was a gift. A gift that I didn’t want to receive, yet would gladly take it over the other options. A gift that isn’t easy, yet has made me more dependent on God. You see since then, I have learned how God is so gracious and kind to us. Many times we don’t even know how good God is to us, unless you look. But I look at things differently now. He protected my thoughts before Noah was sent to St. Jude. He has provided for our needs. Our church, friends, and family have wrapped their arms around us and cared for us so well. We rejoice in the normal things now – normal days, normal behavior, normal eating. He has even given us new friends that are in the pediatric cancer family like us. He has given us a Christian doctor and team to take care of Noah. Am I joyful that we are going through this? No! But I do know God that can give me the courage I need, and I remind myself daily that joy is found in Him.
Tomorrow (Tuesday, September 2nd) marks the beginning of Noah’s Reinduction 2 phase, which is 3 weeks long. This is the last Reinduction in his treatment plan, which means this is the last time he gets hammered with some strong chemo. Yes, we are ready to get this part behind us! We still have 2 years of weekly/nightly treatment left, finishing up in August 2016.
Praises – Noah has had a few days recently where he hasn’t been quite so nauseous. He still hasn’t had an appetite, but he is able to tolerate some food smells, and for us to even mention food names without it being terrible. He has acted more like himself, which is a HUGE blessing, it had been a very long time and we have missed his spunky personality.
Prayer requests – Tomorrow is a big day. Noah will not be able to eat until after his procedure, which will probably be around 3:00. He hasn’t had an appetite, so it shouldn’t be a problem, but sure enough, tomorrow will be the day he does.
He has spinal procedure at 2:00. Pray that this goes smoothly. He has had several of these, but it still isn’t easy. (He has had a traumatic spinal in the past that have hurt his legs, so it worries us.)
We are scheduled to start his chemo at 6:45 tomorrow evening and it should last about 2 1/2 hours. One of the chemos he gets will make him feel crummy all week. We are very thankful that since he is low risk, he will only receive this chemo one more time during his treatment (in 2 weeks).
Noah starts another big round of steroids. Pray that it doesn’t give him mood swings, etc. that most children have with it.
I have seen the power of prayer first hand many times. We covet your prayers. Pray that this medicine does the job it’s supposed to do while protecting his healthy cells, and causing no ill effects. Please pray that cancer doesn’t dominate our life. We have had a hard summer, and I pray that after these next 3 weeks, it starts to get easier on Noah (and us). He has been such a trooper!
Noah came home this afternoon. He’s been without a fever for a couple of days now, but his counts remain low. Thanks to everyone for praying for him during this stay in the hospital.
Sarah and I brought Noah to St. Jude about 2 a.m. Monday morning. He’d been running a low fever, so the doctor told us to go ahead and come. Turns out his hemoglobin is low, so he’ll have a blood transfusion here in a little bit. His ANC is also still at zero, which is a bit puzzling since he was on steroids and wasn’t on his oral chemo this week. The doctor thinks it could be some kind of virus that’s keeping his counts down.
So, it’s almost 4:30 a.m. now, and we’re about to be admitted. Sarah and I haven’t slept. We’re guessing Noah will likely be here at least until sometime Tuesday.
Please keep us in your prayers. We’re ready for Noah to get some kind of relief from the crummy couple of months he’s had.
Would you please pray for Noah, specifically for his nausea? Ever since the reinduction period ended about a month ago, he’s been much more nauseous than he was in the weeks before. He has trouble finding things he can eat. He’ll regularly ask for something because it sounds good, only to see it or smell it once it’s before him and not be able to eat it.
This has been consistent for about the past three or four weeks. He has thrown up several times as well. It’s frustrating for us, and I know it’s got to be terribly frustrating for him. The doctor said today that sometimes even with nausea medicine, this is just the lot for some kids throughout the duration of their treatment. Please pray that God would take away Noah’s nausea and allow him to eat and function somewhat normally.
Many thanks for your prayers and your constant words of encouragement.
6 months into this journey and 110 weeks to go! (We should finish up treatment in August 2016.) So thankful to have the past 6 months behind us, and praying that the next two years can be somewhat “normal” and fever free!
Tomorrow morning begins a three-week period of more intensive chemotherapy for Noah. We’ll leave the house at 6 a.m. Monday, and the morning will consist of lab work, a spinal tap and an MRI, for which he will be sedated. The rest of the day, Noah will get three different drugs — one of which he hasn’t had before. The day will end at St. Jude about 9 p.m., which means it will be close to 11 before he gets home. It’s going to be a long day.
Patients are normally required to stay in the St. Jude vicinity for their reinduction treatments, but they are allowing us to return home. We are immensely grateful for that. The chemo will likely have a detrimental effect on Noah’s immune system, so we’ll have to be watchful to make sure he doesn’t get a fever. We also are unsure what other side effects from this amount of chemo will be.
Noah has been feeling great in recent days. He hasn’t had to wear a mask in public, and to be around him, you’d never know that he was being treated for leukemia. That certainly makes this whole ordeal more manageable.
So, a few specific requests for Noah for the next three weeks:
1. Please pray that his MRI shows nothing of concern. We’re not expecting anything, but we’re always a bit uneasy that something could be wrong of which we aren’t aware.
2. Because of the procedure Noah is having, we won’t be able to give him his nausea medicine in the morning. He’s been a bit nauseous the past couple of days, so please pray that his stomach will stay settled until his procedure.
3. Pray that he will stay fever-free in the days ahead, especially since we are expecting his ANC to plummet as a result of the extra chemo.
4. Pray that the side effects from the chemo will be minimal.
5. Pray for strength for Noah tomorrow. I’m sure he’ll be exhausted by the time his treatment is over.
6. Pray for wisdom for us as we enter this brief phase with which we are unfamiliar. We’ll be keeping an extra close eye on Noah to see how he responds to the treatment, and we’re uncertain what to expect in this stage.
Thank you for your continued prayers, encouragement and concern. We know that the Lord has been our strong tower over these past six months, and we continue to trust his grace for us going forward.
We’ve had interest in ordering more Team Noah t-shirts. So, if that’s you, you can order here. Deadline is June 20th. Thank you! https://docs.google.com/forms/d/1ZgzjHDXI0-L7vlo9UKPl4KNlKFKyHHyRzGPWW8pTbxE/viewform?usp=send_form
The last couple weeks have been pretty good for Noah. His days at St. Jude are hard, but he’s much better the rest of the week. We are thankful that the better days have outweighed the bad ones. We are thankful for days he can run in the sprinkler, or jump in a little pool. It wasn’t long ago where he couldn’t even take a normal bath. So, we are thankful for medical devices like a port, that makes Noah feel a little more normal.
Tomorrow, he gets the same chemo he got a few weeks ago that caused him a lot of nerve pain. Please pray that he will not have that this time. We are giving him some medicine that will hopefully prevent it. Also, he will be back on a steriod this week. Please pray that he has no ill side effects from it, which would be a miracle. We know we serve a mighty God that still performs miracles. And with God, all things are possible. (Matthew 19:26)
My kids got me the Jim Henson biography, written by Brian Ray Jones, this past Christmas. I became aware of the book through Kimberly Thornbury’s multiple tweets about it and knew it was something I wanted to read. I grew up with Sesame Street. I watched the Muppet Show and Muppet Babies. Kermit, Ernie, Fozzie, Miss Piggy and Big Bird feel like old friends. And as a father, I’ve become reacquainted with these old friends during the past decade.
I began reading the book shortly after Christmas and had made it about a quarter of the way through by Jan. 10.
Jan. 10, 2014. The date that our pediatrician told us to get Noah to St. Jude, immediately, because he probably had leukemia. I’ll never forget taking that call from my wife while I sat in my office, nor the terrifying hours that followed.
As I came home from work to get packed for the trip to St. Jude, I remember thinking that I needed to take something with me to read. I’d undoubtedly have a lot of down time on my hands, I thought, so I’d need a book. I should have reached instinctively for the Henson book.
I almost did. But something stopped me. I remember thinking that I most certainly did not want to take the Henson biography. Absolutely not.
At the time, I didn’t know what the future would hold. For all I knew, I was facing the very real possibility that my son might die. For all I knew, the days I’d spend with him in the hospital would be the last days of his life. I didn’t want to take the Henson book, because I didn’t want the Muppets to be what I was reading about when my son died. I didn’t want to go through the rest of my life being reminded — every time I saw the Muppets — of the pain and anguish with which they were associated. I didn’t want to break down in tears when my other kids — and maybe even my grandkids — asked me to watch something Muppet-related with them.
Of course, by God’s grace, that’s not how things turned out. Yes, Noah did have leukemia. But the doctors and the drugs kicked its tail quickly. Though we still have a couple of years of treatment left, and though the chemo still makes life difficult sometimes, Noah is healthy and happy. We expect him to recover completely.
I finished the Henson book tonight. Unlike on Jan. 10, tonight I have every reason to believe that I’ll get to spend many hours with Noah in the years ahead watching Henson’s creations.