Well, chemo is going well so far. I have been surprised at how Eli has been handling the chemo, but maybe I shouldn’t be by now. People always say, “Um, he is on high dose chemo this week, right?” as he is running around with one of his buddies at the Ronald (Justin, Ber, Sam, and Dakota as of late). He’s a strong kid, that’s for sure. I thought we might have had a nauseous moment yesterday, but to be fair, we were walking through Central Park when it was 86 degrees and he had just eaten ice cream and was riding the carousel. I think there were perfectly healthy kids getting nauseous there as well. 🙂 We really like the Central Park carousel. As I’ve mentioned before, the owner Sal has a 16 year old son (Daniel) that had Neuroblastoma and Dr. LaQuaglia was his surgeon years ago and Kushner was his doctor! Whenever Sal sees Eli, the entry fee for the carousel is waived. 🙂
The Irinotecan is infused over an hour and the Temodar is a huge 180mg pill. When I saw the pill, my eyes got big, but I didn’t say anything so I didn’t influence Eli’s ability to take it. He just popped it in his mouth and swallowed it down with some Gatorade. He didn’t even think twice about how big it was. I laughed because when the nurse saw him pick it up, she said, “Don’t drop it!” I didn’t ask how much that pill cost, I don’t think I want to know. 🙂
Monday night we went to see a New York Pops concert because some kids from the Ronald were actually going to play a song! They played “Conjunction Junction” with the guy who wrote all of the School House Rock songs. It was fun. Carnegie Hall was amazing and we really enjoyed the concert. Eli was really enjoying the band and was clapping and cheering at the end of each song and asking questions about the instruments. We listened to one song called the Ohio River Boat Song and when it was over Eli said, “Daddy, that song was half beautiful and half scary!” I laughed because it was such a good interpretation of the song. I love listening to live music. I get goosebumps listening to a symphony orchestra (pops and jazz much more than classical) and as the tempo was rising, I looked over and saw Eli rising out of his seat and pretending to conduct the music with increasing intensity. It made me smile as I thought that I might be able to pass on my alto saxophone to him after all. 🙂 He did fall asleep just before intermission and slept until it was over, which of course meant he wasn’t tired enough to sleep until after midnight, but that was ok. He ate 4 drumsticks from KFC along with a corn on the cob before bed. When it comes to KFC, the boy can EAT!
So, we continue on this week and are so grateful for all of your prayers. Yesterday we were in a cab and the cabbie was listening to a station playing Christian hymns. The DJ came on and said “The verse for today is Romans 8:28” If you look on the inside of your Eli’s Army bracelet, you will see that Romans 8:28 is debossed there. It made me smile as I realized that so many people are praying for Eli and that he is under God’s grace and care and that while things might not work out like we expect, we do know that things will work for God’s good purpose.
Romans 8:28 – “And we know that for those who love God all things work together for good, for those who are called according to his purpose.”
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