We were in The Big Apple this past week for 3-month scans and a chance to sit down and plan strategy with Nathan's doctors at MSKCC. Nathan is in a "second remission" after achieving "no evidence of disease" (NED) status and a soft-tissue only recurrence. We are primarily waiting for a Phase I clinical trial to open that has a focus on preventing multiple recurrence, which is common in aggressive cancers like neuroblastoma. One of the points the doctor touched on is that with new therapies more and more children that have recurrence are achieving a second remission, but with many of those having a second recurrence, there is obviously so much need for additional therapy. Susan began asking about the interim treatment Nathan is receiving (chemo followed by a biologically based therapy) and the doctor explained that they are currently treating three (yep, only three) children (including Nathan) in Nathan's situation with a soft-tissue only recurrence. The rest of their recurrent patients have bone marrow involvement. We have always felt good about the fact that Nathan had soft-tissue only recurrence that could be treated surgically, but hearing that they are only treating three patients with this scenario really hit home how much we will forever be flying blind with Nathan's care. MSKCC claims that they see 80 new neuroblastoma patients each year and this number represents more patients than any other facility in the country. And out of all of those patients, Nathan is one of three with a similar status.
There are pluses and minuses to each facility and philosophy out there regarding neuroblastoma treatment and sometimes parents can get pretty heated over discussing the relative merits of different facilities and therapies. I explained to a friend we saw over dinner in NYC that if we are going to be having decisions about Nathan's care based on what amounts to instinct or gut feelings, then I want those decisions made be people who see this disease exclusively, hoping that they have a better instinct regarding its behavior. There may be other facilities that have multiple kids in second remission after a soft-tissue only recurrence, but there can't be many and since Nathan has had continuing care at MSKCC, there is nowhere else where they have kids in similar circumstances that have had similar past treatment.