Let’s play “Where in the World is Eliâ€. Alright, so most everyone knows he is in New York (if you don’t, you haven’t logged onto this site for quite a while), but we’ve stayed in 4 different rooms in 3 different buildings since arriving. Tonight…. The Ronald McDonald House! Yeah, we were surprised as well. I thought we were looking at another 2 days in the “inpatient†room, but Dr. LaQuaglia came in this morning and said, “Hey, this kid looks great, let’s get you out of here today.†We sure didn’t argue. On top of that, they had us discharged within an hour or so! Dr. LaQuaglia said, “I want you guys to go back to the Ronald McDonald house for a few days and check back in with me on Thursday to make sure everything is still going ok. You should be able to go home on Friday.â€
Here’s where it got a bit complicated. Eli needs to start his 5th round of chemo ASAP since he has been off of it for a while due to surgery and it’s important to get right back on that. Dr. Kushner pointed out that we could actually do the next round of chemo here in NY and it would also be done by Friday. However, we might have to stay a day or two afterwards to make sure everything is ok. So, we could wait until Friday to come home, or come home a day or two later and have his 5th round of chemo done as well. We decided to do the chemo. The kicker is that this is not the same chemo that Iowa City was planning on using for Round 5.
As you know, we have done all of our chemo in Iowa City. And as many of you also know, Iowa City hasn’t been overly thrilled about us coming to New York and didn’t want to administer New York’s chemo plan because they don’t really believe that the 3F8 antibody treatment is the right thing for Eli. They thought that their surgeons could do a fine job at the tumor removal and believe that the autologous tandem stem cell transplant is the best option for Eli. Here’s where I have a problem with that. Eli is still testing positive for Neuroblastoma in his bone marrow. Therefore, the stem cells that we did harvest in Iowa City have a good chance of having Neuroblastoma in them, which means we’d be reinfecting him with Neuroblastoma if they were indeed infected. The best case scenario is to use stem cells that have come from disease free bone marrow which Eli does not have yet.
3F8 is known to do a good job at getting Neuroblastoma out of the bone marrow. So, our philosophy is that we should do the 3F8 and if it cleans the bone marrow, we’ll try another stem cell harvest and have the option of still doing the stem cell transplant with the clean stem cells instead of the potentially “tainted†stuff. Sloan has no problem with this as they usually do a harvest as well, but for other reasons, not for stem cell transplants which they no longer believe in (they used to do them all of the time, but now feel they aren’t necessary.) There are no guarantees either way, but if 3F8 totally did its job on Eli, we wouldn’t even HAVE to do a stem cell transplant. Or, perhaps it will clear it and if it comes back (like it does over 50% of the time), we can do the stem cell transplant then. None of that is known, but our thought is that we’d rather try the 3F8 and have it fail and fall back on the stem cell transplant than to have the stem cell transplant ruin our shot with 3F8.
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