Archive for May, 2014
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!