Today was a difficult and disheartening day for the Ellsworth family. I’ll do my best to explain the situation as clearly and concisely as I can.
To recap, on Sept. 9, Noah had surgery to remove his port, but the surgeons were unable to remove all of the catheter that was attached to it, so he still has about three inches of that inside him. We were hopeful that there would not be any problems with that. Unfortunately, that was not to be.
An echocardiogram today revealed a small blood clot at the base of the catheter. The catheter actually extends about a centimeter into his heart. While the blood clot is not big enough right now to be a lethal threat, that could change if the clot continues to grow. That basically left us with three options:
1. Do nothing and continue to monitor the clot to see what happens with it. Not a good option.
2. Have surgery to remove the catheter. While this is certainly a possibility, it’s very invasive. Considering that it’s open heart surgery, it also carries a decent amount of risk. This option remains on the table in the future, but we have opted against it for now.
3. Begin a regimen of anticoagulation medication that will likely keep the blood clot from getting any larger and that could actually remove the clot entirely. This is the option we are pursuing. The bad part is how that medicine is delivered. It’s an injection that Noah will have to get twice a day for the next three months.
Needless to say, Noah is not thrilled about this, and our hearts are breaking for him. Here we thought we were finished with his treatment, finished with the needle sticks, and finished with the enslavement to a daily and nightly administration of medicine. So much for that.
The hope is that while the anticoagulation medicine will keep the blood clot from growing, Noah’s body will at the same time begin to “wall off” the blood clot, so to speak, so that when he’s done with the medicine, the blood clot will not be any threat to him in the future. This is a very real possibility, and it’s certainly what we’re praying for. We have reason to be hopeful, since this is essentially what happened with the catheter, thus the reason it was not able to be removed.
If, after three months, the treatment does not stop the growth of the blood clot, he’ll likely need surgery to remove the catheter fragment and the attached blood clot. The tricky part is that an echocardiogram will not reveal whether or not Noah’s body has naturally contained the blood clot. The only way we’ll know that has likely happened is if further imaging tests show that the blood clot has not grown back, or not grown larger, after he has been off the anticoagulation medicine for a while.
So, the best-case scenario is that after three months there will be no signs of the blood clot. We deeply desire your prayers to that end. Please pray also that Noah will continue to be brave and adapt to this difficult treatment that he’s facing for the next three months. It won’t be easy for him. I’ll take him in later tonight for his first shot. Sarah and I will have to learn how to administer the shots to him at home. We have to stay at St. Jude until tomorrow afternoon at the earliest, and possible even until Friday afternoon, as they do tests to determine the appropriate dosage for him.
We’re very discouraged, and we’re very weary. We greatly need your prayers to be strong for Noah and our other two kids, and that we would remain faithful in circumstances that continue to be trying and burdensome. But most of all, we need your prayers for healing for Noah.
Thank you for the prayers and encouragement that you’ve offered throughout this journey.
Why do I run? I’ve asked myself that question a lot over the past few weeks as I’ve pounded out mile after mile on the pavement, preparing for what I first planned to be six miles in the St. Jude Marathon relay on Dec. 5. Now, however, I’ve decided to go even farther – 13.1 miles in the half-marathon. I’ve never done anything even close to that before. So why am I?
The most obvious answer to that question is this: I run for my son Noah.
I run for the silly little boy with such a happy, joyful outlook on life who has endured more pain than any 6-year-old should have to. Who has suffered through dozens of needle jabs into his chest. Who has accepted corrosive toxins into his body to kill an even greater poison. Who has taken hundreds of pills. Who has spent countless hours in a hospital when he would rather be somewhere else. Who sometimes has to wear an uncomfortable mask that is hot and annoying when he goes out in public. Who occasionally misses out on fun things with friends because it’s just not worth the risk of him getting sick. Who often can’t find anything to eat that sounds even remotely appetizing. Who spent eight weeks away from home when he was first diagnosed. Who endures pain in his legs and back because of the chemo coursing through his little body.
Through it all, Noah has not lost his joy, his smile, or his silliness. He has, with grace that makes me marvel, accepted his lot without complaint or bitterness. Most of the time, you’d never know that any of the above is true of him. Noah is all boy, and he loves life. He loves Star Wars and Minecraft. He loves baseball and puppy dogs. He loves Legos and Nerf guns. He loves Monopoly and Pick-Up Sticks. He loves farting and burping.
And he loves his mommy and daddy. A few weeks ago, he went through his piggy bank and brought some money to Sarah and me – just because he loves us. A handful of change for me, and a handful of change for Sarah. As I counted the quarters, nickels, dimes and pennies, I was amazed at the result — $1.27 exactly for each of us. That wasn’t an accident. Noah had counted it out and made sure to give each of us the same amount of money.
Over the past 22 months, ever since Noah’s leukemia diagnosis in January 2014, I have, on many occasions, given thought to things I should write about our journey, about him, about those who have been such tremendous blessings to us, about our frustrations, about our triumphs. And I have written a little. Not much. I’ve often wondered why I haven’t written more. Why haven’t I felt compelled to take to the keyboard and share with others about this experience? Why haven’t I been driven to document this path for posterity?
The simplest answer I can give is that it’s difficult for me to go there. Writing about Noah’s battle with leukemia takes me back to the early days of this journey when I lay awake at night wondering if my son would die. Writing brings back memories that are painful and hard to deal with. Even now, tears fill my eyes as I struggle to find the words. Much of the time, it’s far easier to focus on the present and the future than it is to relive the past.
But as painful as it is, I don’t want to forget. The path that we’ve walked over the past couple of years has been the most difficult challenge I’ve ever faced. Through it, though, I’ve seen the Lord pour out blessing after blessing upon us. I hope, in the days ahead, to write about some of those blessings. They are, after all, memorial stones in the river of my life. What do these stones mean? I want to give an answer, however incomplete it may be, to that question.
One of those blessings, I can say with absolute certainty, is St. Jude Children’s Research Hospital. Since Danny Thomas founded the hospital in 1962, St. Jude has been on the forefront of cancer treatment and research for children. Thanks to St. Jude, the leukemia that once would have ended Noah’s life has been largely neutralized. The cure rate for Noah’s leukemia is now about 95 percent.
Sadly, not everyone’s story ends as happily as we expect Noah’s to. We’ve encountered children at St. Jude who have lost their battle with cancer. That’s why the ongoing work of the hospital is so important – to save the lives of precious children who one day might be spared.
Thanks to generous and gracious supporters, St. Jude operates without ever charging patients a dime. Dealing with childhood cancer has been challenging enough. I can’t imagine what it would be like with the addition of hefty medical bills. Because of St. Jude, that’s not something we’ll ever have to worry about.
That’s why events like the St. Jude Marathon are so important. They enable the hospital to raise the money needed not just to treat kids and cure cancer, but to do it without families ever having to pay. Won’t you join me in supporting this noble cause? Every donation, no matter how small, helps. Because of St. Jude, my son Noah is not just alive, but is full of life – with the hope of a lifetime of health ahead of him.
Why do I run? I run for Noah and for so many kids like him. I run for those who cannot, and for those who never will. And I run for those who, by the grace of God and the work of St. Jude, will one day run again.
“Do you work at St. Jude?”
I was standing in line at the Sam’s Club snack bar today, getting ready to order lunch for my family. The man behind me in line — tall, with long gray hair and a gray mustache — saw my St. Jude Children’s Research Hospital jacket.
“No, I have a son who’s a patient there,” I replied.
The man’s name was Bill. We struck up a brief conversation about Danny Thomas, his vision for St. Jude and the amazing place it is. I then placed my order. Two pretzel combos. A pizza combo. A frozen yogurt. Two extra drinks.
“Add a hot dog combo to that,” Bill told the server. “And all that is on me.”
“You don’t have to do that,” I replied.
“Now, you’ve got enough to worry about without having to pay for your lunch,” Bill said. “I’m happy to do it.”
I brought Noah over to meet Bill, a retired fireman who lives in Medina, Tennessee. I told him a bit about Noah’s treatment regimen and the positive prognosis for his long-term health. I thanked him again for his kindness.
And I left feeling incredibly blessed by the generosity of a stranger.
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.
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.
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.
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.