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!
Noah’s counts were too low today for him to get his port tomorrow or to get his methotrexate treatment. We’re disappointed about this, and he is, too. He’s getting a blood transfusion this afternoon and then coming home for the weekend. We’ll take him back on Monday to see what his counts are then.
Please pray over the weekend that his counts on Monday will be high enough both to get the port and the methotrexate treatment. We need an ANC of more than 300 for the methotrexate and more than 500 for the port.
Tomorrow Noah will head back to St. Jude for the weekend for a couple of different things:
1. His final high-dose methotrexate treatment. After a rough start with the first one, the last two treatments have gone perfectly. Please pray that this one will go smoothly as well, that he’ll clear the chemo quickly and that he’ll get to come home on Sunday.
2. His port installation. Upon Noah’s leukemia diagnosis in January, he underwent surgery to install a central line in his chest. That line is how the chemo has been administered since then. It’s high maintenance, requiring a dressing change three times a week and a daily flushing. He also can’t get the dressing wet, which makes baths difficult. On Friday morning, Noah will undergo a procedure to remove the central line and add a port instead. The port will go under his skin, and the remainder of his chemo treatments will be administered by accessing the port with a needle. It will be much easier to care for and should be much more comfortable for Noah going forward.
However, it’s a significant change for him, and he’s understandably nervous about it. For a long time he insisted that he wanted to keep his line and not get a port, but that’s just not a viable option for the next two years. So, we bribed him by offering him a new bike. That did the trick. He has a much better attitude now about getting the port, even if he is still concerned about it. His bike came yesterday, and I’ll have it assembled and ready for him when he gets home from the hospital. Please pray that Noah won’t be scared about the port and that he’ll get used to it quickly.
Noah will spend Thursday at the hospital doing routine stuff in advance of his surgery on Friday. He’ll go in first-thing on Friday morning for his procedure and then should be admitted later in the day for the rest of the weekend.
Thankfully, this is the last time during his entire treatment regimen that Noah is schedule to be inpatient at the hospital. If he gets a fever sometime we’ll have to take him in, so we expect that there will most likely be some short inpatient stays still to come, but it’s encouraging to know that this is the last one that is scheduled. From here on out, assuming that all goes as expected, everything will be done on an outpatient basis.
If you’d keep Noah’s health in your prayers going forward, we’d appreciate it. We take for granted things like fevers in our kids. Kids get sick. They get fevers. They’re typically over them in a couple of days, and we move on with life. It won’t be that simple for us if Noah gets sick. If he gets a fever, we’re most likely looking at a hospital stay of at least a couple of days, which is a major pain. So please pray regularly that Noah will stay fever-free.
Last night I was reading back over some of the tweets that had been sent to me in mid-January when we took Noah to St. Jude and when his diagnosis was confirmed. In a lot of ways, that seems like a lifetime ago. I was greatly moved to read how many people were praying for us at that time, and I was reminded of how many people have been so faithful in praying for us since then. Thank you. Our journey with Noah is far from over. We’ve still got another two years to go. The Lord has been faithful thus far, and we know his faithfulness will continue.
Noah’s methotrexate treatment this weekend went much better than the last time. So well, in fact, that we’re heading back to Jackson today and won’t have to be back at St. Jude until Friday for a clinic visit. We’re thrilled with this news, as it seems to be an indication that life will return to somewhat of a normal pace for the next few weeks. Thank you for your prayers.
While we are happy, there’s a bit of a bittersweet element to it as well. We’ll take all of our belongings with us from the Habitat for Hope house today, which means that we’re likely moving out of there for good. Living there for the past two months has been such a blessing, and we’ll miss the new friends we’ve made. We can’t thank Mark and Mylissa Horrocks and Charlie and Jennifer Dover enough for their kindness to us since January. They were truly the Lord’s agents of help to us at a time of great need, and we will never forget their generosity.