DIPG

By partnering with St. Baldrick’s, the McKenna Claire Foundation can “fund research that is close to our heart, while also benefiting from the resources of St. Baldrick’s to help the greater good,” says McKenna’s mom, Kristine.

We knew from the beginning that with a diagnosis of Diffuse Intrinsic Pontine Glioma (DIPG), the prognosis for McKenna was dismal. We promised her that we would do everything within our power to help her “feel better.” Because we had amazing friends who had turned over every rock and researched every DIPG doctor and research facility in the world, we knew we had done our very best for our daughter, but that modern medicine had failed us. Not for lack of caring or lack of heart amongst the doctors, but for lack of funding which limited research and the possibility of answers.

As she took her last breaths, we promised McKenna we would do everything in our power to fight in her name and ensure that no other child or family would suffer as she did, as we do.

Donating McKenna’s tumor to provide opportunities to develop cell lines and advance research was our first step to fulfilling the promise we made to our girl, and in fighting back against the tumor that took our child. But, for us, it wasn’t enough.

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From your very first day here on earth, you brought joy and laughter into our world. I love this picture of you because it embodies everything I think of when I think of you. You may have only been 2 weeks short of your 8th birthday when we lost you, but you already knew so much. You embraced life, loved to laugh, spent time with friends, explored the world, learned about new things.

From a young age, you knew what was important in life. You taught us so much in the short time you were here, and you continue to touch others and show them what is important, even though you are no longer physically present.

Macky, this day is the hardest to bear, and we all miss you so much. I want to be baking cupcakes and decorating the house, waiting for a gaggle of ten year old girls to come to a swim party. Instead, I sit in front of the computer, watching videos and looking at pictures of what was.

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Crystal with her brother, Cole, who was diagnosed with childhood cancer at the age of 8.

One of the most powerful memories I have about my brother is how much we liked each other’s hair — mine was long and smooth, and his was short and fuzzy due to regular buzz cuts. He would always say how mine was the softest and silkiest in the entire world, and I would rub my hand over his fuzz, saying how nice and fuzzy his head was.

After he was diagnosed and put into treatment, parts of his hair fell out. The parts that stayed he grew long and curly to hide the bald spots that embarrassed me, even though they weren’t even mine.

My brother Cole was just 8 years old when he was diagnosed with DIPG, a type of childhood brain cancer that starts in the brain stem. He was sick for about a year until he passed away in 2006, when I was 11.

A lot about that time does not make any sense, and it made even less sense back then. But I knew I had to do something to fight against the disease that stole my brother away from life.

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When Votre Vu founders Harold Zimmerman and Ann Brodette were approached in 2011 to support the St. Baldrick’s Foundation’s 46 Momma’s Shave for the Brave (a group of moms of kids with cancer who were shaving their heads in honor of the 46 children who are diagnosed with cancer every weekday), they jumped at the chance.

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Dr. Chow is a St. Baldrick’s Scholar studying brain tumors in children. He shares his experience treating a patient with DIPG, one of the deadliest types of childhood cancer.

Joshua was diagnosed with DIPG when he was 4.

When I first met 4-year-old Joshua, he was beginning the toughest battle of his young life. What struck me immediately that day was the look in his eyes that was not one of fear, but one that said, “I’m ready for this. Tell me what I need to do.”

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