Day 3 of Round 5 is in the books and tomorrow is the last day of chemo! Sweet! Today was slightly better, but mostly due to the steady stream of anti nausea medicine Eli got through his pipes. In fact, we were able to avoid the urgent care facility tonight by putting him on a 24 hour Zofran drip so that he is getting anti nausea medicine all night long without having to take it orally. For the most part, Eli slept through a lot of the day, but when he was awake he was noticeably more talkative and energetic than yesterday (ie, walked on his own, talked with the nurses, etc.) The vomiting did continue throughout the day, but there really just isn’t any avoiding that as hard as we might try. At least we know that we get to stop the chemo tomorrow!
One big prayer request is going to be the week or two following this chemo. They have definitely prepared us well for what to expect. We have been very fortunate to never have a fever between chemo rounds which would require a visit to the emergency room. However, 95-99% of kids end up in the emergency room with a fever at least once after a high dose Cytoxin round like this one. His white blood counts are expected to not just go low, but to go to ZERO! They also said it’s very likely he’ll need a platelet transfusion as well as a red blood cell transfusion (he’s only had one of each of those up to this point) after his counts start dropping.
I’d also like everyone to pray for Emmanuel and his mom Charisma. We met them here at the Ronald McDonald House and Emmanuel is a little over one month older than Eli. Emmanuel was diagnosed with Stage IV Neuroblastoma in 2006, had surgery, did 3F8, and went into remission. About a week before we arrived for Eli’s surgery, they got the news that Emmanuel had relapsed and they were right back here in New York. He is undergoing high dose chemotherapy to try to get it back into remission. We don’t know the feeling of hearing the news that your child has relapsed, but we can only imagine that it’s right up there with the news that your child has cancer. They were so elated that they had “beaten this thing” and then found out that they had to tear down the celebration banners and figure out how to get this thing for good. This is an all too common situation with Neuroblastoma, which has a 50% relapse rate or worse. Emmanuel is such a great kid and is probably even a bigger Spiderman fan than Eli! Charisma mentioned how hard it was to make friends with other Neuroblastoma families because then you get pulled into their lives and share their pains and sorrow as their kids go through hard times. It’s very true, but there’s probably nobody better to know what you’re going through either. Plus, we have an amazingly massive support group (that would be you guys, the ones reading this post) that love to lift people up to God in prayer, right? 🙂
We would finally ask for prayer about the Iowa City situation. We really, really, really love our group in Iowa City and we know they want the best for Eli. However, we’re not sure how they are going to feel about helping us with doing the chemo needed to do 3F8 because they don’t totally agree that it is the best course of action for him. We really want to maintain that team’s desire to work with us on getting Eli through this, so please pray that we can have some good conversation with them once we return to Iowa and can all agree on the best plan.
In an attempt to not disappoint, I will mention that tonight’s dinner was from Tony di Napoli on 2nd Avenue. It was actually catered at the Ronald McDonald House for a free “pasta gorge” before Sunday’s NYC Marathon and if you are into pasta, you have to check it out the next time you’re in town. They had 4 different kinds of pasta laid out and every single one was delicious! Since it was free to us, I can’t comment on the pricing, but whatever it costs, I’m sure it’s worth it. 🙂