Thanks to everyone who was praying for Eli today. I know that many are anxious to know how it went. Lacey and I discussed how to answer this question and determined that Eli handled his pain extremely well and the residual pain afterwards has been much less than we expected. That being said, it was probably the hardest thing we’ve had to watch as parents in our 4 years and 10 days of experience.
About 15 minutes into the infusion of the 3F8, Eli was getting uncomfortable and said he was itchy. Then his stomach started to hurt and after that he was writhing around crying and trying to get comfortable. He eventually ended up with his head on my lap while I held a hot pack to his back and stomach. I just massaged his stomach in a rhythm while Lacey told Eli stories to try to keep his mind off of the pain. He didn’t yell or scream out in pain like we hear some kids doing, but that isn’t really Eli’s way of coping with pain. He mainly just cried and occasionally said something random like “Close the kitchen door” and “Baby”. Our nurse said he was most likely having some hallucinations and that was normal. While we often find Eli’s drug induced babbling funny, this certainly wasn’t a time for laughing. On the famous pain scale of 0 to 10, he was at a 10. I would say the length of time he was in major pain would be about 30 minutes. Then he had another 30 minutes of restlessness before he eventually fell asleep and it was all over. The 3F8 research nurses are amazing and we were happy to have Cat taking care of us today. She was right on top of things with boosts of Benadryl and Dilotid when it was needed during the peak pain moments.
When Eli woke up, he was ready to drink and eat a little and we took off for the Ronald. He was awake for a few hours total, but has since been sleeping and will most likely sleep until we head for the hospital again in the morning. They have always told us, “The younger kids never remember what happened, they almost always forget about it by the next day.” Dr. Kushner stopped in today and said, “All the young kids forget about everything, but this guy is different. Eli’s smarter than I am, so I don’t know what he’ll say. I’m really curious to see how much of this he remembers and what he has to say tomorrow when you bring him back. Don’t feed him with any information about what happened, I want to know what he remembers on his own.” We told him that we were as curious as he was. In the few hours that Eli was awake, he didn’t mention anything about the pain at the hospital or what had happened, so it will definitely be interesting to his reaction to going back tomorrow.
1 day down and 9 to go for this round! 5 days down and 12 to go for the beta glucan. He really is doing better with taking his beta glucan, so I think now that we have established that routine, we’ll be able to avoid the NG tube.
Knowing that God is a God of compassion and emotion, I can only imagine His righteous anger when He sees and hears the pain that sin from man’s fall has brought on His littlest children like Eli and the rest of the kids on the 9th floor at MSKCC and in the rest of the world from past to present.
Matthew 18:10 (Jesus talking about a child) “Take heed that you do not despise one of these little ones, for I say to you that in heaven their angels always see the face of My Father who is in heaven.” God is moved by the requests and faith of His people as we can see time and time again in both the Old and New Testaments. That is why we don’t take it lightly when people say that they are praying for Eli, because we know that God hears and is pleased with His people coming to Him with requests. He wouldn’t want you taking them anywhere else.