by Clare and Jordan Isaak.
On June 7th, 2019 our incredible son, Matthew, was formally diagnosed with a Diffuse Midline Glioma. This form of paediatric brain tumour is notoriously fast-growing and unresponsive to treatment. Until recently, it was considered unsafe to collect tumour samples by open biopsy due to the proximity of the tumour to the brainstem. We were incredibly fortunate that we had access to a skilled surgeon, and that there was an accessible portion of the tumour that could be removed; however, further resection is not possible. Matthew is currently undergoing radiation treatments 5 days a week at Cancer Care Manitoba, and is tolerating this treatment very well. The only symptom we have seen so far is increased fatigue. He has also been experiencing symptoms of the steroids he has been on since May 8th, which have caused weakness, dizziness, weight-gain, additional fatigue, irritated skin and mucous membranes, and delayed his body’s ability to heal, which, unfortunately, delayed the start of his radiation treatments.
Matthew will complete his course of radiation therapy on August 13th. For most children, with Matthew’s diagnosis, radiation has been the only option for treatment, simply buying a few months time. Thankfully, we have some hope, due to the fact that we were able to have the tumour biopsied. A sample of the tumour, along with blood and urine samples were submitted to the Terry Fox Foundation’s PROFYLE Program. This program gives us a chance to have complete genetic and molecular profiling of the tumour done, and we hope that it will give us some target for further treatment, either chemotherapy or immunotherapy. The other possibility that may offer Matthew more time is the small selection of clinical trials that are currently seeking a treatment for this type of tumour.
How You Can Help:
We are asking for your help to ensure that if and when we find an option for treatment, we have the means to ensure that Matthew is able to take advantage of it. Most clinical trials that Matthew would be eligible for are being conducted in the U.S. and while the trial drug is often provided at no, or low, cost, this is not always the case, making access to clinical trial prohibitively expensive. We will also be responsible for all additional expenses incurred, including travel, accommodations, scans, and any additional medical treatment associated with the trial. Most trials have a wait-list and require up-front payment. We are also using Cannabinoid oils in conjunction with Matthew’s radiation therapy, in the hopes of increasing the effectiveness. These products are prescribed by a family doctor who specializes in Paediatric Cannabis use. The cost of this medication is approximately $1000 each month, and it is not currently covered by our health plan. A portion of donated funds will go towards this medicine, which also helps with the side effects of both radiation and steroids.
More about Matthew:
Matthew has always been an astounding person; he spoke at 6 months, was reading independently at 2 1/2 years old, has always displayed social skills, compassion and empathy that you would be hard-pressed to see in any adult, and is a faithful friend to everyone he meets. Since the age of four Matthew has enjoyed playing sports, including soccer, tennis and baseball in the summer, and hockey every winter. He loves the French-Immersion school that he has been in since Kindergarten, and we hope that he will be able to continue his studies in the fall.
Our beautiful, active, fun-loving, enthusiastic boy now faces a challenge that no child should endure. On April 7thMatthew’s dad, Jordan, noticed that when Matthew was smiling, only one side of his face was engaged. This paralysis was diagnosed the following day, after a trip to Children’s Hospital Winnipeg Emergency, as Bell’s Palsy. Matthew was prescribed a 1-week course of steroids, and we were advised that the paralysis could take 3-6 months to go away. Unfortunately after 3 weeks his symptoms were only increasing, and there was no change in the facial paralysis. One month to the day from the initial diagnosis we returned to the E.R. at Children’s Hospital, and an MRI was ordered. We found out late that evening, May 8th, 2019, that Matthew had what appeared to be a 3-4 cm malignant mass growing on the right side of his brain stem. He was immediately admitted to hospital and a plan was devised to move forward as quickly as possible with an open biopsy, and follow-up would be required once a diagnosis was determined, with the Paediatric Oncology-Hematology team. This disease has not only stopped an active 10 yr old from doing things every kid should be free to do, but it has robbed him of his independence. He now has difficulty moving from sitting to standing; walking 100 meters is a challenge that leaves him exhausted. No child should ever have to have the things we all take for granted stolen in this way.
We are now striving to keep Matthew healthy, happy, and ensure that he maintains the best quality of life possible. Please help us to achieve our goal of $250,000 to give an amazing child a chance to, once again, run with his friends, play soccer, go to school, and perhaps even take his driver's test and receive his high school diploma. Right now these seem like impossibly big dreams, but with your help they just might come true.
Clare, Jordan and Matthew