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.
This week was the first time I was able to erase my Menu board. This was our menu the week of January 10th. It was just a reminder to me of what our week was like before, and it was hard to erase (just like it was hard for me to flip my house calendar from January to April).
I remember sitting in the doctor’s office that Friday. We were waiting and waiting on our doctor to hear back from another doctor, I didn’t know it was from St. Jude. I knew Noah had been diagnosed with Strep and the Flu earlier, and I figured something else like Mono or some temporary virus would be his diagnosis. I remember calling Tim after being there for almost 4 hours, and I told him the appointment was lasting longer than I thought, so instead of making pizza that night, we would just pick one up. But that never happened. A few hours later, we were heading to Memphis.
Just like erasing the Menu board or flipping the calendar, it is hard to look at “before” pictures. Pictures of a sweet little baby, or even from Christmas, knowing that I didn’t know then, but in just a few weeks my life would totally be different. But, I am so thankful for God’s blessing to us in the midst of this. He has taught me so much through this suffering, and even through the midst of it, He continues to bless us.
Noah finished his last scheduled inpatient stay. He had his last high dose Methotrexate on April 28th. Everything went well, except for being nauseous (something he is still battling). Now, I know that this probably won’t be our last inpatient stay, because in the next 2 1/2 years, if Noah runs a fever, he will be put inpatient and given antibiotics. But, this is our last scheduled stay.
Noah also got a port. He has had a line coming out of his chest that he was receiving his medicine through and labs were being drawn. This line served a great purpose but was high maintenance. Noah had been resistant to the idea of changing to a port. I think it was just the unknown that made him nervous. But who can blame him, he has been through so much, I think I would be unsure too. We tried to persuade him by telling him he could go swimming with a port, but that didn’t matter. So we moved to the next best thing, a bike. Thankfully that was all it took for him to get on board.
So, May brought us past many hurdles in this Leukemia treatment plan. No more scheduled inpatient stays, no more bags of fluids to deal with. No more Leucovorin (a medicine that has to be given at a precise time). No more dressing changes, no more flushing his line, no more sponge baths, and hospital bags that can be unpacked. Yes, we are excited!
We are anxious to find our new normal, one that lets us be home more. I’m not going to lie though, I would rather not find a new normal. I want to go back to the old normal. It just makes me sad for Noah and what he has to go through. But, then I am reminded of God’s blessing on our lives, even through this hardship, and I know that we can do this. I know this will all be used for His glory, and some day Noah will be an encouragement to many others. God has been faithful to us so far, and I know He will continue to be. So, new normal, here we come!