Hard to believe how fast time passes. Percy and family have been home since mid-February. The time in Boston was well worth it, and Percy received tremendous care from the staff at both Spaulding and Massachusetts General. When he arrived in Boston, he could sit in a chair for about 20 minutes before requiring a rest. When he left the rehab hospital, he walked out on his own.
After arriving home, Percy had a few weeks break before starting chemotherapy. This time allowed him to visit his classmates at school, reconnect with family and friends in Ottawa, and rest and recuperate. Percy’s physcial rehabilitation has continued, and he has begun working with a tutor to catch up on some schoolwork.
Percy has now had two rounds of chemotherapy, and is facing four more, planned until August. The effects of the medicines are taking quite a toll, but Percy is showing remarkable resilience and his spirits remain good.
We have been overwhelmed by the amount of kindness and support that we have received from friends, family, and complete strangers.
A heartfelt thank you from Percy and his parents for all the donations received to date.
9-year old Percy loves football, books, and hanging out with his friends. He is happy, full of promise, and the light of his mom and dad’s life. On November 13, 2017, his world got turned upside down.
It was at 9 am that Monday morning that CHEO’s chief of neurosurgery informed Percy’s parents (Sophie and Keith) that what they had hoped was just a stomach bug was in reality hydrocephalus (water on the brain), caused by a brain tumor about the size of Percy’s eyeball that was preventing the normal flow of spinal fluid.
After two surgeries that totaled about 40 hours on the operating table over that next week in November, the tumour was virtually all gone. However, this was only the start of Percy’s journey back to his old life. Following his second surgery, Percy developed posterior fossa syndrome, a condition that affects some children after this type of brain surgery. For Percy, it caused mutism, partial facial palsy, and limited mobility which would be frightening enough for any adult, let alone a child.
More devastatingly, it was found that the tumour found on Percy’s brain was medulloblastoma, a fast-growing, malignant tumor also called cerebellar primitive neuroectodermal tumor (PNET), that starts in the region of the brain at the base of the skull, called the posterior fossa. About 20% of childhood brain tumors are medulloblastoma. There are around 40 cases a year in Canada. Treatment includes surgery, radiation, and chemotherapy.
The best course of treatment for long-term outcomes is proton beam radiation. This is an advanced radiation treatment technology that reduces the radiation dose to surrounding healthy tissue compared with traditional radiotherapy. There are about 20 centres in the United States that provide this treatment, but it is not available anywhere in Canada. Five provinces will refer patients like Percy to the United States for this treatment on a case-by-case basis. Sophie and Keith are fortunate that that Ontario is one of those provinces and that Percy was found to be one of those cases.
Since December 20, Percy has been receiving treatment in Boston, at Spaulding Rehabilitation Hospital for physical, occupational, and speech therapy, and at Massachusetts General Hospital for proton beam therapy. Overall, treatment is going well, and Percy is making fantastic progress with his strength, mobility, and speech … as we all know, kids are truly resilient in so many situations.
But his treatment in Boston will last until mid-February. When he returns home to Ottawa, he will undergo several months of chemotherapy.
Percy has spent just one night in his own bed at home since this odyssey began two months ago. Every other night, either Sophie or Keith has spent at his bedside in the hospital. When the three of them return to Ottawa, it is expected that Percy will spend some time in hospital, but that he will be home reasonably quickly. The road ahead includes aggressive chemotherapy along with continued rehabilitation therapies.
To maximize Percy’s outcomes and restore his life’s promise, Sophie and Keith plan to spend as much time as possible with him, but they will require additional home care support. To achieve the best results for his rehabilitation, they plan to work with supplemental physical therapy, occupational therapy, speech therapy, and tutors as necessary. These supplemental services that are not covered by OHIP may cost as much as $75,000. While they truly don’t know at this time the extent of the expenses they will face, they do plan to make every resource they have available for Percy to make a full recovery.
Family, friends, and complete strangers have been extremely generous in their time and have expressed interest in helping financially. Funds received from this appeal will be used to cover out-of-pocket expenses for these health services related to Percy’s continued recovery. Any remaining funds will go to support families who find themselves in similar situations. Please consider supporting Percy today and sharing this story with your friends and family through social media.
- elena aminkova
- Steve MacLean EDP
- Jonathan Allard
Organizer and beneficiary
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