Well, there was a bit of a schedule change. We ended up doing Eli’s trial dose of 8H9 today instead of this Thursday! We had counts done yesterday and his ANC was low again (.8), so they gave him a G shot to bring it back up over 1. They also did the brain MRI, although I don’t have any results on that yet. Today we came in to do a CT of the chest/abdomen/pelvis because Dr. Kramer realized that it had been quite a while since our last one. This afternoon we did the trial dose of 8H9 and all went well. They do a trial dose to make sure Eli isn’t going to have some big adverse reaction to the drug. They only give him 2ml, while the REAL dose next Thursday will be 50ml. That will make him so radioactive that he will have to spend the night somewhere other than the Ronald McDonald House and nobody will be able to be to close to him until the next morning! They are putting us in a hotel that is attached to the NY Presbyterian hospital for Thursday night.
My only complaint is that they pre-med Eli with the same drugs they pre-med him with for the 3F8, but with the 8H9, there is no pain. They just do it “just in case” a kid has pain (but no one ever has). It’s a lot of drugs that cause sleepyness/grouchiness if you ask me. Dilaudid, Tylenol (around the clock for 24 hours), Benadryl, Decadron, Zantac, Visteril, and Zofran as needed (it has NOT been needed). This is in addition to the Cytomel steroid and SSKI drops he has been taking in preparation for the big 8H9 dose. Oh well, he slept through the followup PET scan and after a little more relaxing back at the Ronald, he was back in good spirits and he very much seems like himself again. It was a pretty long day at the clinic since we were there from 9:30am to 6pm and the sound didn’t work on Eli’s TV and the playroom was closed. 🙂 He has been eating like crazy, so that’s a good thing!
This has been a great week since a lot of Eli’s good buddies are here now (Ber, Chloe, Dakota, Justin, and Kate to name a few). Thursday night is going to be another huge Candlelighters, NYC party at FAO Schwarz. Those are always great (if you are in NYC and didn’t know about it, e-mail me and I’ll get you more info, it will be a blast and it’s totally free).
I decided to throw together an Animoto video with pictures from our time in NYC since we got here mid February. Thanks to Eli’s buddy Sam’s mom for letting me know how to get around CarePage’s block on Animoto’s video embedding! 🙂
We go back tomorrow for another PET scan and a draw of Eli’s cranial fluid. We’ll do repeat that on Thursday and then be ready for the weekend! Thanks for all of the prayers. For those of you that missed it, here’s the MSKCC fundraising video Eli and I were a part of again:
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