Michael Mosier: Defeat DIPG

It’s because of children like Michael Mosier that the Pediatric Brain Tumor Foundation and the Michael Mosier Defeat DIPG Foundation invest in the most promising pediatric brain tumor research. We thank Mark and Jenny Mosier for sharing their son Michael’s story as we team up to amplify our voices this Childhood Cancer Awareness Month. Learn more about how you can get involved and Go #GoldAndGrayEveryDay.

Michael was the special kind of kid who equally enjoyed baseball and art projects, playing in the mud and doing puzzles, wrestling and board games. He was confident and had no reservations about getting up in front of a crowd or aggressively going after a baseball — even if he was the smallest kid on the field. But Michael was also extremely kind, and we were so proud that he would make friends with everyone in his classes. He loved playing with his little sister Lila, and his smile would light up any room.

Just one week after Michael’s sixth birthday and his first day of kindergarten, Michael began complaining of double vision. His right eye alarmingly stopped moving and blinking normally, which led us to get an MRI. The results brought the tragic news that Michael had a tumor on his brainstem.

And not just any type of tumor, but diffuse intrinsic pontine glioma (DIPG) — a highly aggressive brain cancer that currently has no cure. We were forced to face the unimaginable news that our previously healthy and vibrant young boy would have less than a year to live.

We couldn’t believe this was happening. It simply did not seem possible. Less than two weeks earlier, Michael had been jumping off diving boards at the pool and bouncing across trampolines at his Sky Zone birthday party.

The neuro-oncology team at Children’s National Medical Center led Michael’s treatment, which included 30 rounds of radiation and concurrent chemotherapy meant to enhance the radiation’s effects. While many children see temporary symptomatic relief from this experimental drug, Michael’s symptoms unfortunately continued to worsen.

Just weeks after his diagnosis, Michael required a wheelchair, lost the use of his dominant hand, had difficulty speaking, and would often vomit due to pressure from the tumor. The steroids Michael took to counteract inflammation in his brain brought on rapid, significant weight gain and sleeplessness.

But we took our cues from Michael, and if he was not sitting around feeling sorry for himself, we figured we shouldn’t be either. Michael mustered the energy to go to school every morning before his radiation treatments and rarely complained during an unbelievably difficult eight and a half months. Even in Michael’s final days — when he could no longer eat, speak or move — Michael wanted his teacher to come to the house to go over school lessons.

Michael started creating daily to-do lists, which included a variety of items he wanted to accomplish that day — such as playing with LEGOs, going to school or drinking a milkshake. Michael insisted that the list be completed before he went to bed each night. When Michael turned six and a half, we threw him a Big Hero 6 movie party. It’s an unbelievable experience trying to happily celebrate your child’s half birthday, knowing that you may not see his next actual one.

Every step of the way, Michael inspired us and countless others to dig deep, overcome obstacles and live life to the fullest. His efforts raised more than $119,000 for pediatric brain tumor research, and his Team Big Hero Michael was recognized as the top fundraising team for Race for Hope — DC. Michael was able to generate donations from people in all 50 states and in over 60 countries across the world, showing that even a 6-year-old boy can make a big impact.

Michael passed away on May 17, 2015 after a heroic eight-and-a-half-month battle against DIPG. He is remembered, missed greatly, and continues to inspire us each and every day. Michael’s tumor tissue was donated to medical research in hopes that it will lead to breakthroughs and progress in treatment and ultimately a cure.

Determined to change the outcome for other families, we founded the Michael Mosier Defeat DIPG Foundation and draw on Michael’s perseverance, courage and determination as we fight for a cure. In the past four years, the Foundation, with our chapters in Defeat DIPG Network, has raised over $5.5 million. Our mission is to raise awareness and funds for essential research to complete the final item that was on Michael’s to-do list: Defeat DIPG.

Follow Michael Mosier Defeat DIPG Foundation at @DefeatDIPG on Facebook, Instagram, and Twitter to learn more about their work to find a cure for DIPG brain tumors.

The Pediatric Brain Tumor Foundation is proud to partner with the Michael Mosier Defeat DIPG Foundation in the fight against pediatric brain tumors. Go #GoldAndGrayEveryDay in Michael’s honor and help his family complete the most essential item on his to-do list.

Follow the PBTF on Facebook, Instagram, Twitter and LinkedIn to be the first to know about other ways you can raise awareness.

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