It’s just not fair.
It’s just not fair that no one can help us.
It’s just not fair that I have to watch my child die.
It’s just not fair that I have to try and encourage him to fight to get better when I know he never will.
What do I tell my child?
How do I tell my child that he should continue to fight? That he should try and persevere?
How do I watch my child deteriorate, bit-by-bit, knowing that he will ultimately succumb to this horrific disease that is taking his ability to walk, talk, smile, and just be a kid?
How do I live the rest of my life having endured an experience in which my child never even had a chance? Never even had one shred of hope?
How do I do that?
The thoughts of a DIPG parent are paralyzing from the moment diagnosis is delivered to the moment their child’s journey on earth ends. It’s an experience no one should have to endure.
For the family of Michael Mosier, it was a whirlwind.
Michael was full of life. He loved to compete in sports — baseball, soccer, swimming — and had just completed an active summer. He celebrated his sixth birthday on August 27, 2014, and finished his first week of kindergarten. All was well with this family of four: Mom (Jenny), Dad (Mark), Michael, and little sister Lila.
Then over Labor Day weekend, Michael started complaining of double vision. His eye was turning inward. Jenny and Mark took him to the doctor.
“He was diagnosed on September 4 of 2014 — a week after his birthday and he started kindergarten,” said Jenny. “Thinking back to the day of diagnosis, it is so surreal when you’re in the moment. Being diagnosed with cancer is one thing — it is horrible and life-changing — but to hear that your child has a brain tumor with essentially no survival … there really are no adequate words to describe the feeling.”
One More Practice
After an exhausting, mentally-draining weekend in the hospital, Michael wanted to attend soccer practice.
Since the only symptom he had at the time was double-vision – he was compensating by turning his head to the side – Jenny and Mark decided to take him.
As their vibrant, hard-working, competitive six-year-old ran up and down the field, scoring multiple goals, they sat in the stands and cried.
“He was amazing,” said Jenny.
What they didn’t know then was that it would be the last time he would ever play a sport. DIPG took over that quickly.
“I could tell how horrible DIPG was from the discussion with the doctors. It was obvious,” remembers Jenny. “But I still wanted to hold hope for a better prognosis. Hope that maybe it was something different, that he would respond differently, so I deliberately did not go online, did not Google anything.
“But even being told the horror of DIPG, most parents would not then understand or be able to immediately go to the place of what it will steal from your child in a matter of weeks or months. I still think about that soccer practice because we had no idea when we were there how quickly he would deteriorate.
“We don’t even have a video of it.”
The Absence of Hope
The cruelest thing about receiving a DIPG diagnosis as a parent is the absence of hope. There is nothing to cling to.
Even the treatments that are supposed to alleviate symptoms of this destructive, growing brain tumor are horrific in their own right. Radiation treatments are combined with steroids that result in sleep disturbances, personality changes, intense hunger, and weight gain.
“It changes the appearance of these kids so quickly in a way that makes them really not recognizable,” said Jenny. “Obviously we recognize them, but you wouldn’t know it was the same child. I only loved Michael more and more no matter what, but that takes a toll on the child – especially those that are old enough that they can recognize how people respond to them.
“Despite the immense warmth and outpouring of support and generosity and kindness of their peers and friends, it’s a lot for a child to process.”
What is a parent to do?
“You want to talk to your child about the treatments they’re getting and how everything, of course, is to make them feel better, and you want to keep them in fighting mode so they are trying to get better,” said Jenny.
“It’s a real struggle as a parent to be talking to your kid about how they’re going to get better when you know what the prognosis is for this particular disease. Every family has to handle those types of discussions in their own way – it’s so personal – but it is really hard.”
It’s impossible to imagine what it must have felt like for Jenny and Mark as they tried to squeeze every bit of joy out of every moment as a clock with very little time clicked down to zero. There were so many difficult days that involved a lot of crying and wondering how they would get through.
“How in the world can I sit there and complain and feel sorry for myself and feel like I can’t go on when he’s the one who’s going through it and he’s ready to go?” said Jenny. “He set the tone. Frankly, we all just followed suit. He was the strong one.
“The thing that is heartbreaking is your six-year-old should not have to be so strong. They should just be a kid.”
Michael was that strong, though, beginning each morning by creating a checklist of what he wanted to accomplish that day. His tasks would include everything from what he wanted to eat or drink to doctor’s appointments to building Lego’s.
“He would set his goals each and every day and he would not go to sleep until we finished everything,” recalls Jenny. “We would carry the checklist around from appointment to appointment, and we would check it off. He did that literally up until he died.
“Even when he could no longer speak, he found a way to communicate with us. He wanted us to keep making his lists and he kept wanting to check things off.”
Big Hero Michael
One thing Michael especially enjoyed was working to raise money for a cure. The Mosier family ran in a race to raise money for brain tumor research as Team Big Hero Michael.
They began with the goal of raising money from each state, but accomplished that so quickly they had to expand their goal to raising money from as many countries as they could.
“We were the top fundraiser for this race and we brought in donations from over 60 countries,” said Jenny. “It was really an incredible experience and Michael’s favorite part of doing it was that he got to go up on stage and be recognized as the leader of this race.”
Now, nearly eight months after Michael’s death, the Mosier family is continuing that race for a cure. They created the Michael Mosier Defeat DIPG Foundation with a check box next to his logo.
“We wanted that to be the final item on his list,” said Jenny. “Finding a cure.”
The Ripple Effect
Jenny, a lawyer by trade, is now committed to raising money in Michael’s name to ensure other families never have to experience what she and her family have gone through in losing Michael.
It’s something her family has in common with Jason and Tammi Carr and the other families who have been struck by this terrible tragedy of losing a child to DIPG.
“One thing that struck me early on before we started our foundation is that the vast majority – I think it’s over 90-percent of funds that go toward research for this disease – come from foundations run by families who have lost children to this horrific disease,” said Jenny.
“I had never heard of DIPG before Michael was diagnosed, but I think there will be a ripple effect where more and more people will become educated and know about this disease and I hope will feel outraged and surprised and driven by the fact that there is this childhood cancer with a survival rate of near zero percent that hasn’t had progress in decades.”
It’s something the Carr family certainly hopes will happen as a result of promoting Coach Beilein and the Infiniti Coaches Charity Challenge.
“We want a total cure, but that may not happen overnight,” said Jenny. “We at least need to keep pushing so that, step by step we’re making it so that kids can survive this disease and go on to have long lives just as they should.”
Learn more about the Michael Mosier Defeat DIPG Foundation at defeatdipg.org.