Evan's life took a cruel twist and his new journey began in January 2017 with what was originally thought to be side effects from strep throat. Evan began having headaches and upset stomach. His parents said they knew it was serious when he pulled himself from hockey practice a few times. Following a week of exhaustive testing, cat scans and MRI's, Evan was diagnosed with a brainstem glioma (tumor) inside the pons section of his brain, and it was spreading :: quickly. This kind of tumor is rare and considered inoperable because of its location and the prognosis for is generally poor. Evan's regression was rapid and severe. Within four weeks he went from a kid flying around the hockey rink dreaming of his next big game to being confined to a wheelchair with limited motor skills requiring full time assistance with most of his daily activities.
In Calgary, Evan's only current treatment option through the Alberta Health Care System has been radiation and an experimental study using chemotherapy. Evan's treatment began March 5, 2017 with 33 radiation treatments at the Tom Baker Cancer Center ending April 19th, 2017. In addition, Evan was put on a clinical trial at the Alberta Children's with weekly chemotherapy treatments followed by a 2 month recovery period. Phase 2 of the clinical trial began on June 4th with daily trips to the Alberta Children's Hospital for intravenous chemotherapy treatments.
Unfortunately, Evan has not tolerated the chemotherapy very well and like so many others, he has suffered through many side effects that go with the treatment. Despite this Evan has maintained a positive outlook and looks forward to being able to play ball and hockey again with his friends. His parents John & Shawna have been encouraged to consider Evan's quality of life when choosing a method of treatment with accepting the condition for what it is and seeking palliative care being one of them.
Evan and his parents have chosen to explore options aimed at fighting this disease while providing a better quality of life. Recently they learned of a ground breaking new clinical trial being administered at the Memorial Sloan-Kettering Cancer Center in New York City. Dr. Mark Souweidane, Director of Pediatric Neurological Surgery, received FDA approval for a clinical trial for young patients diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG). A trial will use novel one-time surgical technique (convection-enhanced delivery, or CED) to deliver a tumor-fighting agent directly to the site of the glioma, bypassing the blood-brain barrier that prevents most drugs from reaching these deadly brain stem cancers in children. In May the first patient, a little 4 year old girl from Florida underwent a successful surgery. Although the information hasn't been made public, indications are that the post MRI images are encouraging.
With the support of the team at the Alberta Children's Hospital, Evan applied for and after a visit to New York for a consultation was accepted into the trial! His surgery is scheduled for July 17th, 2017. Evan's parents believe that this form of treatment gives him his best fighting chance while reducing many of the side effects that go with chemotherapy. Although the treatment is deemed experimental and it doesn't improve his prognosis, it is believed that Evan's quality of life will be improved dramatically. Bypassing the blood brain barrier will hopefully shrink the tumor and restore some of Evan's mobility.
Unfortunately, Alberta Health Care does not cover the cost of surgery and post-care treatment in New York. Treatment and travel expenses are estimated to be in excess of $200,000 in addition to any possible urgent care costs that might arise due to complications during the trial because Evan is not eligible for travel insurance.
Evan will be a pioneer in pediatric cancer research. Only 12 to 18 children will be accepted into the trial with the goal that it will become a standard therapy that is more accessible for future children diagnosed with this horrible disease.
With your support, Evan's journey represents renewed hope and a departure from the standard, ineffective, therapies. This has the potential to create a whole new paradigm in brain tumor treatment and perhaps down the road a cure for many. Should we exceed our fundraising goals the excess funds will be used to help finance pediatric cancer research.
Thank you .
- Eva Mark
- Fred Troy
- Mark Wilson
- Doe Fernand
- George Mick
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