Hello anyone and everyone...
I have written a few times before about my son Wyatt...
Briefly, he was diagnosed with Stage 4 NMyc amplified NB two months ago at 4 months of age. He had the tumor removed, but found nb in his bone marrow. He had a ct scan done and nothing was in his soft tissue... he had a MIBG done and it came out negative, nothing showed up in it(supposedly it doesn't work on all kids). We have gone through three rounds of chemo now and had the stem cell harvest done. Just before the third round of chemo last week we had another CT scan and a bone marrow biopsy done. Because of his bones getting soft with the chemo they could only get the bone marrow from one side, but they said it was good enough. We got most of the results back and all was clear. Yesterday they told us that there was no NMyc gene found... they are next (I think) looking for any residual amount found.
Our question is... if there is nothing found... they still want to go through the next three rounds of chemo and the BMT, and then radiation. Does anyone know if this is the same protocal at other institutions? We are at the U of M minnesota. We just wonder if the chemo and BMT are needed or could we just go to the radiation or something else? Wyatt is as healthy as can be (besides the cancer), and has no symtoms... we can't help but second guess the doctors. We just don't want to be putting him through all of this if not needed.
Does anyone have any suggestions of other procedures or anything at all? Any questions we chould be asking the doctors? We are elated that nothing was found, but confused at what should be the next step.
Thanks for your suggestions ahead of time,