Thank you for all the prayers about New York. I ended up contacting Oncologists from Chicago, Kansas City, St. Jude’s, Children’s Hospital of Philadelphia, New York, and of course we had more conversations with our good doctors in Iowa City. I had 3 main concerns:
First, that Iowa City was recommending TBI (total body irradiation) with the stem cell transplant. Our doctor at Iowa City said that TBI was a part of the protocol they are following, but agreed that many hospitals are no longer doing TOTAL body irradiation and most do localized radiation, so we could discuss doing localized instead of TBI. That makes stem cell transplant more attractive for sure (although it is still pretty hard on his body due to the massive amounts of chemo).

Second, I was worried that if we did stem cell transplant, we wouldn’t be able to do 3F8 antibody treatment in New York later. In fact, Dr. Kushner in NY confirmed that many patients come AFTER stem cell transplant to make sure they get every bit of the residual disease. From what I understand, 3F8 really works best with minimal remaining disease.
Third, I was concerned with some of the chemo drugs we were using and the dosage because I felt some of it wasn’t as aggressive as it could be. Dr. Loew agreed to sit down and discuss making some changes if we wanted to. They weren’t “dead set” on a protocol and not willing to make any adjustments. So, please keep praying that God will make it clear as to what we should be doing in Iowa City and what we should be doing in New York and when.
As Dr. Morgan from Chicago put it “You’ll ask 6 or 7 different places what they do for Stage IV Neuroblastoma and you’re likely to get 6 or 7 different answers. That tells you that nobody has the right answer. This is a frustratingly difficult disease and if anyone had hit a home run with treating it, we’d all be doing it.” Well said, and she was absolutely right. Knowing that to be true, we will continue to get Eli’s chemo done in Iowa City and evaluate how well he responds before it’s time for a stem cell transplant. Either way, it’s always wise to do a stem cell harvest just in case, so we’ll be doing that in Iowa City for sure.

Thanks to one of our new friends for pointing out the following verse. Hebrews 13:3 “Remember them that are in bonds, as bound with them; and them which suffer adversity, as being yourselves also in the body.” I have really felt that many of you are suffering through this with us as if it was happening to your own family and not someone else’s. That is exactly the calling of this verse in Hebrews and it is really encouraging to see it played out by Christ followers. It never ceases to amaze me how faithful people are to daily pray for Eli and our family. I, in turn, pray that God will bless your faithfulness and enrich your walk with Him.
Remember to keep checking http://photos.hornit.net for updated pictures as I update that much more frequently than the photos here!