Most of you are expecting news from our meeting with Dr. Kushner yesterday. It was actually somewhat uneventful. His counts are great as are his Electrolytes, so that is good news. The MIBG (which is much clearer than the ones in Iowa City) showed some Neuroblastoma spots on the bones of Eli’s knees, hips, abdomen, shoulders, and POSSIBLY his eye sockets (remember, this is really more “Unclear Medicine” than “Nuclear Medicine”). The abdomen will be irradiated already because they always irradiate the primary source spot. The other spots are actually possible to irradiate WHILE they do chemo treatments, which is what we might do. Also, the bone marrow results aren’t 100% in yet. They do a test on the aspirates (blood) and on the bone itself. For the first time ever, his aspirates came back negative for Neuroblastoma, but we’re still waiting on the results of the bone biopsy. Honestly, with spots still on the bones, even if the bone marrow comes back negative, you still know there’s disease in there somewhere. They are actually going to meet together as a team on Wednesday afternoon to discuss Eli’s results and brainstorm which option would be best for him. The nice thing about New York is that they approach things very optimistically with multiple options. So, here are the possible options we could end up with:
Another round of chemo with high dose cytoxin and Topotecan. The pro to this is that Eli hasn’t had Topotecan before and it’s been known to be very effective with Neuroblastoma. I know that St. Jude’s is using it now. The con is that Eli has had blood in the urine problems with high dose cytoxin and this could end up making that worse since high dose cytoxin is the cause of it.
Another round of chemo with an alternate drug. The pro to this is that it would still be a chemo that Eli’s body hasn’t seen before, which is good, but the con is that it isn’t known to be as effective as Topotecan necessarily.
A third option is to use something called “Hot” 3F8. Hot 3F8 is 3F8 that carries radiation with it. That way, the radiation gets carried right to the Neuroblastoma sites. It would probably be a good solution if the bone marrow is negative, but might not be as effective as another round of chemo if it’s not clear yet.
They also have something called MIBG treatment, which is a way to attach a marker to the neuroblastoma with radiation attached. The only difference (as far as I know) between this and the Hot 3F8 is that it doesn’t have any 3F8 to attack the Neuroblastoma with. It’s just radiation doing the fighting. This has typically been offered as a later option, so we don’t know much about this one yet.
Kushner told us to show up Thursday morning first thing and they’ll let us know what option we’re going to go with. They want to get started right away, even if that means doing outpatient chemo over the weekend. We will be hoping we can stay outpatient and don’t have to end up inpatient for it. It’s much harder to be together as a family when Eli is inpatient since they have a “no visitors under 11 years old” rule they are strict with.
So that is the word from New York! We are thankful to be here getting great care for Eli and thankful for all of your prayers and support. Please take time to remember and pray for the families that have recently lost their battle with cancer and are spending their first Christmas without one of their children. I know I didn’t really give it much thought until I was looking that very threat right in the eye. It is scary enough to be threatened with it, so I can’t imagine having to live with it. In either case, God’s grace is sufficient and enduring for His glory is well worth the pain. Count your many blessings and have a very Merry Christmas as you remember the eternally significant event of God coming to earth as a Jewish carpenter to offer the free gift of salvation to anyone who would believe and accept it!