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.
What a sweet surprise! We left at 5:45 am yesterday morning (August 22, 2014) for Noah’s last long day of treatment. And to our surprise our friends were up the road, ready to cheer us on! It was a great send off! A great way to start the last day after being diagnosed on January 2014. Here is my video and my friend’s video.
Our friend, Ginger, and her kids went with us to St. Jude a few weeks ago. She decided to write a story about us for Our Jackson Home, and how the Jackson community has encouraged us through our long, difficult journey. You can read it here.
He was counting his weeks left of chemo on his fingers and toes, now he can count the days! 20 days from today will be his last dose of nightly chemo at home! (He will have a week of nightly chemo following August 22nd, his last chemo in his port at St. Jude.)
Tim wrote about what our family has gone through between the time of the Olympics.
Noah’s favorite part of his neuro exam – His doctor added a funny trick to the end where he taps Noah’s forehead, and then Noah sticks his tongue out. They laugh every time. (Week 108. Counts are 1000 = perfect for him!)
A Union University student, Danica Smithwick, wrote a great piece about our family and St. Jude Children’s Research Hospital. You can read it here.
Steroid and vincristine week adds more pills to Noah’s normal week. And this is Noah’s last steroid week! We are SO excited! It doesn’t mean the weeks left are going to be smooth sailing. In fact, he’s a little sad to finish dex because he actually has an appetite during steroid week that he doesn’t have the other weeks. But, we are excited that this is one huge step in finishing his treatment!
Here’s the breakdown
Once a month he takes steroids (Dexamethasone) and at the same time he gets a chemo named Vincristine at St. Jude. This particular chemo causes Noah to have back pain and leg pain. So, during the same week he takes steroid pills, he also takes pills for the nerve pain (Gabapentin and actually he has to take the nerve pain medicine for 10 days).
Noah’s regular weekly medicine consists of Septra to help him fight off things like pneumonia, Kytril and Zantac to help with the nausea, and chemo pills at night. For these medicines, he swallows a total of 61 pills each week (some have to be cut in half because of the pill size). During the time of steroids and Vincristine, he adds to his normal pills, an extra 75 pills in a 10 period. That’s a whole lot of pills! It averages to about 15 pills a day, and that doesn’t even include any extra meds he might need: such as Morphine, Benedryl and Phenergan.
We are very thankful to have these medicines that help save Noah’s life and that they can also help make him more comfortable. Lord willing, after this month he will never need to take those extra 75 pills again. We are so blessed!