Our 9 month old son was diagnosed Stage 4 in May 2018. He had primary tumor in the adrenal gland and secondary tumors in jaw, vertibrae, liver and probably other places I don’t recall. It’s mycn amplified and mibg non-avid.
We’re at Seattle Children’s on COG. The chemo went super well. Shrunk the main tumors effectively for surgery which removed all of the primary tumor and after the next round (5?) there was no signs of cancer on the PET scans/bone marrow biopsies. Onto the BM transplants. He cruised through those in record time with very minor side effects and (I think) had scans again that showed no sign of cancer prior to radiation.
Radiation at UW went fine. He just had it at the primary site rather than whole body. That finished approx a week ago and he’s just been rescanned at Children’s.
The PET scan showed a 7mm tumor in his femur and apparently his liver is showing brighter than before. We’re waiting to hear the results of the BM biopsy.
It honestly felt like we were going to get away with this. I think we’re were up to about 75% survival chances after the success of the previous treatments and yet to have this confirmed but I’m worried we just got dumped into the 1% survival chances bucket. I’m just shell-shocked.
Apparently the preliminary plan is to give him different chemo drugs with his immunotherapy that was planned to start next week.
I hadn’t previously looked at alternative treatment because they seemed to have a handle on it and I still trust them with it but I guess I just want to go into the next meetings informed and knowing my options better. I don’t think Sloane is financially viable at all but I’m a UK (and EU for now) citizen so in theory (I think) we could move to Europe and get treatment there if that would help.
Any thoughts or advice appreciated, thanks
Mark and family
edit> Just heard back on the BM biopsy. One side is clear, one side is clear of NB but includes precursor cells (gangliosides?). They’re going to postpone immunotherapy and get biopsy results from the 7mm lesion in his femur and then decide what to do after that.