Dear Friends and Family,
Michael had his scans last week in Fort Worth at Cook Children’s Hospital.
His MIBG scan continues to show that he does not have any MIBG avid cancer at this time.
His CT scans and MRIs showed that the cancer in his left eye socket has shrunk and is barely noticeable on the scans. The cancer in his spine (T2/T3 area) has shrunk a tiny bit, but not significantly.
Certainly things are moving in the right direction, but until he clears, we have to consider more aggressive therapy in the near future. We are currently consulting with several neuroblastoma specialists about vaccine therapies, immune therapies, and various other clinical trials.
He will continue to have chemotherapy every third week until we make a decision about next steps. His next set of scans will probably be right after the holidays.
Michael is in good spirits and is doing well. He does not like missing school and other activities due to his frequent treatment. But his teachers, coaches and friends have gone above and beyond to help him through it.
Scans are always hard on Michael, but he did attempt to do this round without sedation. Michael has been under general anesthesia more than 70 times over the last 22 months, so he was ready to try staying awake. He sat in the CT scan machine for 30 minutes without moving, the MRI machine for 90 minutes without moving, and the MIBG machine for 80 minutes without moving. In two of the machines, his head was locked down on both sides, and he wore two levels of helmets to hold his face still. Then the machines circled him constantly, coming less than an inch from his face and making very loud noises. It was an unbelievable achievement.
As the technicians pointed out, he did what many adults cannot do. Michael said the reason he could stay so still was that he kept thinking he may get done in time for the last hour of school or in time to make his soccer game. His new name in Y Guides is Brave Bear, which is very fitting. He got to go to a Rangers game, which he loved. And he ran the Wipe Out Kids Cancer Fun Run 1K without stopping or slowing down once. Mike and I never knew how fast we could run a mile until we had to chase our son the entire way in fear of losing him in the crowd. He outran all of us.
As always, we are deeply grateful for the love and support of our friends and family. We appreciate every kind word and every prayer.
With love and hope,
Alison & Mike