Saturday we had a birthday party for Eli at the Ronald McDonald House. It’s really neat because all you have to do is tell them when and where in the house you want to have it and they provide everything. The gifts, the ice cream cake, the party favors, the decorations, and even the guests! The nice thing about being in a house full of kids is that you have a ready supply of birthday party guests. 🙂 It was really neat to hang out with the families we have come to know over the past several months (plus Lou and Griffin whom we had met only 2 days before)!
Sunday we went to the Metropolitan Museum of Art in Central Park. It is absolutely massive and we didn’t even get past the first floor before it was time to head home. One suggestion, avoid the weekends, it was really busy and it took a long time to walk from room to room. Definitely a neat thing to see, and remember, it says $20/adult, but really it’s just a suggested donation, so you can give as much or as little as you feel appropriate. I did see one guy try to get away with $0 and that didn’t work, so bring at least a buck or two if you come. 🙂
That brings us to today. As if this post wasn’t long enough. 🙂 So today we went in to do our simulation with the Radiology Department. They made a mold of Eli’s body so that he will be laying exactly how they need him to be when he comes in for the radiation and did some scans to pinpoint where they want to radiate. They then marked out with Sharpie the spots and put tape over them so that they won’t wear off before they put the tattoos on him on Wednesday. They are doing it Wednesday because he’ll already be knocked out for his port “installation” and central line removal.
Tomorrow we meet with Dr. LaQuaglia to talk about the surgery to put in Eli’s port. Wednesday we start the beta glucan for this 3F8 study! Let me take a second to answer a few questions we’ve received over the past week or so. First of all, they have been doing protocols with 3F8 (attaches to the neuroblastoma cells and causes your own white blood cells to attack) and beta glucan (sugary drink) for over 2 years, but the protocol Eli is on is a phase 1 protocol because they are giving him more beta glucan than they have used in the past. Second, I mentioned that there is a possibility of Eli developing HAMA and some people weren’t sure what that meant. HAMA is Human Anti Mouse Antibody. Remember that 3F8 contains 25% mouse genes. Well, if your body develops HAMA, that means it has basically grown an immunity to 3F8 and it is no longer effective. So developing HAMA early on is not a good thing.
Ok, I think this post is long enough. 🙂 I’ll post more after Eli’s port installation. Eli has my camera, so if I don’t stop him now, my card will be full of thousand of pictures of our room at the Ronald. I think he’s up to 50 right now. 🙂