Jack’s Story

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.

Why do you believe in research?

When the doctors first told us that there was no effective treatment we were devastated. There has been limited progress in this field of paediatric cancer treatment.

The National Cancer Institute allocates 96% of its cancer research funding towards adult cancer and the remaining 4% is divided up across approximately 400 types of childhood cancers, each with its own molecular biology and unique treatment options. It is not okay that our kids are only getting 4%. It is not okay to keep hearing doctors tell families to “Go home and make memories”.

What does research mean to you?

When we first spoke with Dr. Matt Dun (founder RUN DIPG), we instantly felt a connection. Someone who understood us, as he was a parent who had gone through this, but also a scientist who could help us understand what to look for when searching for experimental treatment options that doctors and scientists around the world may be working on.

The feeling of “hope” encouraged us to keep positive and continue fighting. We were able to send some of Jack’s stored tumour sample to Matt and his team to use in their research that attempts to understand how aggressive tumour growth occurs. We believe Matt’s ability to think differently and approach research in an innovative way will lead to survival statistics being improved. The reality for families like ours, to have to see their child suffer in pain, while they fight for their lives, is something we are determined to change.

How is RUN DIPG supporting you?

We wish to continue to carry on the fight against this disease, taking the baton when Jack left us. As a result, we are setting up a scholarship in the name of Jack Fong, our warrior. This scholarship will be for a PhD student to work on one of the projects in Dr. Matt Dun’s lab, as they are determined to help find the cure for DMG/DIPG. Through RUN DIPG, we will be looking to raise money to fund this scholarship, so that kids like Jack may have a better, fighting chance, of life in the future.