Now What

30. May 2016 Uncategorized 0

Thursday March 24, 2016 is a date that I’ll never forget.  It was the day that we were told Grayson had “a mass.”  Due to Grayson’s Opsoclonus-Myoclonus-Ataxia, the doctors were pretty sure the the mass was Neuroblastoma.  Approximately 50% of kids with OMAS have Neuroblastoma and approximately 3% of kids with Neuroblastoma have OMAS. Grayson was scheduled for another MRI and an MIBG scan for the following week, but first we needed to do something for his OMAS symptoms.  The longer we left his OMAS untreated, the more damage it was doing to his brain.

Since his immune system was attacking his brain we needed to do something to calm down his immune system; so his neurologist ordered his 1st round of IVIG to be given that night. Once again, placing an IV was difficult and Grayson didn’t have many veins left to poke; so the nurses had to place the IV in his head. The infusion was expected to about 6 hours, so he received it over night as he slept.


Grayson handled his 1st round of IVIG like a champ; so another round was scheduled for Friday evening.  We were hoping to bust out of the hospital in time for Easter, but we weren’t certain that was going to happen.  In addition to the 2nd round of IVIG, his neurologist prescribed Dexamethasone (a steroid) to combat the inflammation in his brain.

Saturday morning arrived and we were excited that Grayson had handled his 2nd round of IVIG and 1st dose of Dexamethasone great (no roid rages, yet).  There wasn’t a reason for us to remain in the hospital, so we were discharged and able to go home before Easter Sunday.  Since it was Grayson’s 1st Easter, it was important that we spend it together as a family at home.