I have bad news. Originally this update was to tell you all about the wonderful experience Cain and Dylan had singing on stage along side Alice Cooper on Monday night, but more on that later since I would prefer to end the entry on a high note. Dylan had an MIBG scan on Tuesday, postponing his usual IMC-A12 treatment until today. Unfortunately upon arrival to the hospital, Tim (I was at work) was told that Dylan has officially progressed with that questionable spot on his skull now more defined and increased. It was seen 2 scans ago but as it was so faint the team decided that it was not progression, but this scan has changed things. This is the first time in 6 years that Dylan has changed from stable to progression. Dylan is no longer able to continue on the IMC-A12 study as any progression disqualifies you from eligibility. What now? Well first step in to do an MRI and CT of the brain to ensure there is no brain involvement, bone marrow aspirations have also been scheduled. We do not no the pace of the progression either. Is this a new bone metastases that will sit there stable for years? Or is this the beginning of rapid disease growth? We do not have the results of the urine markers yet, and the result of this should give us some direction. If his HVA VMA levels are the same then hopefully it is slow, but if they have increased, then this will be devastating. Dr Modak said he will also see if we can harvest stem cells now that he is off study. He does not want Dylan to be on no treatment, so our options now are to go back on oral Perifosine (Inhibitor) or Irinotecan (low dose chemo). Irinotecan does not agree with Dylan as he already suffers from chronic colitis, and Irinotecan gives him even worse diarrhea, which will mean major weight loss. Dr Modak said there are some clinical trials coming down the pipeline, humanized antibodies are due in August at this stage (most likely even further than that) so we are going to have to wait until the Neuroblastoma Team has their meeting next week and come up with a plan. Dylan is doing ok, he is tired and very dark under the eyes but his main concern seems to be the MRI…he hates them. How are Tim and I doing? We are just numb, don’t really know how we feel, but I know one thing…we have to get back on the horse and be strong for him, there is no choice in that. So today I will grieve and tomorrow I will go to work in the morning and put on that poker face.
Now I don’t feel like writing about the Alice Cooper thing, so I will save that for another day. I will say to those who get channel FUSE, watch on the 20th March to see the Rock n Roll Hall of fame induction of Alice Cooper and you will see the boys singing on stage with him at the Waldof Astoria NYC. Take this link to find out if you have the channel HERE
