In Spring 2017, then 2-year-old Chance had what seemed to be a virus; he was throwing up, was experiencing headaches and was extra tired.  When it lingered, he saw his pediatrician. Several appointments later, and now walking with a hitch in his step, his pediatrician sent Chance to the Children's ER. Within hours, a large mass was found in Chance’s brain and he underwent emergency surgery to relieve pressure caused by the CSF fluid that had built up due to the tumor blocking normal draining of fluid. This surgery resolved many of his symptoms quickly.  Tumor removal surgery was scheduled for the next week and it was successful.  A few days later, Chance had a permanent shunt placed in his brain to assist with CSF regulation. 

Initial testing of the tumor indicated it was cancerous.  Within a few weeks that was confirmed by St. Jude’s laboratory.  Chance was diagnosed with Grade 3 Supratentorial Anaplastic Ependymoma, RELA fusion positive. Chance’s type of cancer, diagnosed at his age, is aggressive with an estimated 50% ten-year survival rate. This meant that even though his tumor had successfully been removed, Chance needed to undergo further treatment with the goal of preventing a recurrence.  So, Chance followed a St. Jude protocol that had resulted in early success in a very small test group.  The protocol consisted of in-patient chemo, proton beam radiation, and oral maintenance chemo.

Chance had four rounds of in-patient chemo cycles - each round requiring two hospital admissions of 3-5 days, with bonus admissions for fevers when his counts dropped. The first round started the July 4th weekend and his last discharge was mid-October, in between there were around 45 nights spent in the hospital (bringing his total to 60) including several in the PICU after a brain bleed. 

After his chemo rounds were complete, Chance and family temporarily relocated to Rochester so he could receive proton beam radiation.  Chance had 30 rounds of radiation over the course of 6 weeks. Each weekday morning, he would be put to sleep with propofol and buckled into a mask that would hold him perfectly in place for his treatment.  Chance rang the bell signifying the end of his radiation treatment on December 13, 2017. Chance then had six months of oral chemo. Following radiation, Chance increased from intermittent to weekly PT and OT due to damage caused by his tumor and chemo.  Chance also spent a year wearing AFOs to help reverse the effects of chemo-induced neuropathy.  

Just over two years after finding his tumor, Chance graduated from PT.  He continues to receive twice weekly OT with the hope that he will be ready for preschool this September.  Chance undergoes surveillance scans- currently every four months and will continue to do so for at least ten years due to the high rate of recurrence of his type of cancer.  Chance is doing well and is enjoying being a kid.

Follow Chance's story on CaringBridge via this link...Chance's Story
 

*Click on the photo of Chance to see more from his session.