Last night we got the call we’ve been waiting for, for the last two months. Adam’s biopsy results came back and his neuroblastoma is not NMYC amplified, putting him in the 4s (intermediate risk) category. This is a HUGE relief to us, and a wonderful answer to all of your prayers. This means that his treatment will be 6 months long, and the chance of future recurrence is quite low.
Since the tumor removal on 2/28, we have been waiting for pathology to give a result. We heard back last week that from the sample they had found, there was no NMYC amplification, however, they were not confident in the result because the sample size was too small, and they were discussing whether or not they would need to do a repeat biopsy. That was frustrating for us to hear. But apparently yesterday, pathology went back to do a further analysis and found another part of the tumor that was still alive, and were able to get a satisfactory result.
It has been a long time to wait for this news, and we are so relieved. From initially being told that he was almost certainly high risk, to getting some hope, and then having to wait another month through various unsuccessful tests, we had developed a caution toward any positive news. So before posting an update we wanted to be sure that we had something conclusive. It brings us so much joy to share this news with you all now.
Last week, Adam had his 3rd round of chemo, which was administered over the course of 3 days (W-F). He now has 5 more chemo treatments remaining, which are spaced approximately 3 weeks apart. The hope is that he would be completely recovered by the end of the summer.
Adam has been rapidly recovering from his surgery, and while his incision was fairly large, he does not seem to be bothered by it at all. We have a follow up with the surgeon in one month.
He will likely have more emergency room visits, and difficult days ahead, but we now can see the light at the end of the tunnel.
Please keep us in your prayers. They are so much needed and appreciated.
Although Adam has barely gained any weight over the past few months, he still has good energy, and is hitting his developmental milestones, such as crawling (a week ago), and he can even pull himself up into a standing position.
Hannah, Mark, and Adam