Archive for Leukemia
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.
We are celebrating today! One year from today, Noah will receive his last chemo at St. Jude! One. year. Wow!
We wanted to document our weekly Monday visit, and thought we would share it with you. This is what a normal appointment day looks like. Of course, there are weeks that sometimes involve other things like, procedures or nasal washes.
While our ultimate hope is in something greater, Jesus’s saving grace. We are also thankful God has given us St. Jude Children’s Research Hospital, that gives us much hope in the healing of our son and many others kids.
I can’t believe it, but we are going to do another Team Noah t-shirt order! Last year, all proceeds went to Habitat for Hope, a place we lived at a couple months during Noah’s first part of treatment. This year, all proceeds will go to St. Jude!
Shirts Youth XSmall – Adult XLarge is $10, 2XL-3XL are $12.50, 4XL-5XL are $15.00. If we need to mail them, we will notify you on the cost for shipping and handling. Deadline for orders are Friday, July 24th. Follow this link to order!
It was such a refreshing time for Noah. He did get tired, and food was still hard for him to smell. He still had to take his medicine and his nightly chemo, but having a change of scenery was wonderful for him and us! We are so thankful!
To do the math, you have to take the first 17 weeks of treatment from Phase 1 & Phase 2 + the 120 weeks of the last phase of treatment, divide that by 2 = 68.5 weeks, the halfway mark for Noah’s Total Treatment.
Now take –
the 17 weeks of Phase 1 & Phase + 51.5 weeks of Phase 3 = 68.5 weeks.
That means today, since we are in the middle of week 51, is the halfway point of Noah’s total treatment. I am so thankful to be halfway done! We are celebrating by getting discharged from the hospital today (after being here a few days with a fever).
Isaiah 41:10 “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”
Noah goes to St. Jude every Monday and gets chemo in an IV. He gets chemo every night at home in a pill. And then he goes and throws people out, hits the ball, and runs home. He really should get the “game ball” every single time. What a trooper!
“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.
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!