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!