Jack Fong was our first born, our pride and joy. He had a wonderful sweet nature and his care and empathy was years beyond the maturity of a boy his age. He was a kind old soul who was proud to share his love for everyone who he met in his life.
On August 4 2020, we took Jack in for a routine eye exam where we were sent to the hospital to an MRI on suspicion of raised intracranial pressure. The following weeks became a blur – trying to celebrate Jack’s 6th birthday “normally” while anxiously waiting for pathology results of a biopsy to give us more information about the diagnosis and treatment plan.
In late August, we finally learned that Jack had a Diffuse Midline Glioma (DMG), basically a brain tumour the size of a golf ball that is malignant and fast-growing. It was located mainly in the thalamus but had spread to other areas of the brain. Being just above the brain stem and diffuse in nature, it was inoperable. Besides radiation to the whole brain (which was unclear whether it would be effective), there was no other treatment that the doctors could suggest. Prognosis for patients with DMG is poor, with a median survival of 9-12 months post diagnosis.
Jack endured 31 days of radiation therapy. He took it like a champ, skipping into the RT room. He had a bit of fatigue and nausea, and ended up with a new hair-do. We were and are SO proud of him!
We poured countless hours into researching the diagnosis and connecting with over 75 physicians around world for advice. We were fortunately introduced to Dr. Matt Dun. He and his team were so helpful in explaining the need for combination treatments for Jack and other children with DMG as there are so many biological forces that drive aggressive tumour growth. Through our links with doctors all over the world, Jack endured a long checklist of trial medications, supplements and natural therapies each day as he was determined to “make the cancer go away” as he said.
Initially, Jack didn’t present with any obvious symptoms, apart from the occasional headache. A few months post radiation Jack started to experience seizures, balance, speech and memory issues. He slowly continued to decline until his passing on December 31, 2021.
Despite all of the hurdles Jack faced during his journey, he still woke up with a smile, giving us his love and laughs with his big compassionate heart. All of which reminds us that we must continue to stay strong and fight this disease and to live each day with gratitude.