What I Learned From My Daughter’s DIPG Diagnosis
When Kristine’s daughter McKenna was diagnosed with a rare pediatric brain tumor that no child has ever survived, she learned there was no known cure because of a lack of funding for research. You can help — get involved.
McKenna was diagnosed with DIPG, a deadly brain tumor, when she was 7.
Childhood cancer was never even a consideration in our minds before that scan, but less than 24 hours and one MRI later, we found ourselves surrounded by doctors at the nurses’ station in the PICU waiting to hear the diagnosis.
It was in the midst of that chaos that we were told our daughter had diffuse intrinsic pontine glioma, or DIPG, an extremely rare pediatric brain tumor that typically strikes between the ages of 5 and 7, infiltrates the brain stem, and has a 0% survival rate.
‘Together We Are Better’: St. Baldrick’s and McKenna Claire Foundation Fund Pediatric Brain Tumor Research
The McKenna Claire Foundation is supporting a St. Baldrick’s research grant to help kids with brain tumors. Kristine, whose daughter McKenna died of a brain tumor, explains why. See all the 2014 Summer Grants.
Kristine with her daughter McKenna. McKenna was diagnosed with a brain tumor in January 2011 and died six months later.
Upon diagnosis, we were told that there was no hope for her survival and that the average life expectancy was 9-18 months. Because it is so rare, there had been little research done on this disease in the past 50 years, with virtually no change in treatment protocols or life expectancy.
For that reason, when we lost McKenna just six short months after diagnosis, we decided to do two things.
The first was to donate her tumor to Monje Lab at Stanford University, where a cell line was developed for use by researchers around the world. The second was to start a foundation in her name with the specific purpose of supporting progress in the field of pediatric brain cancer research.
Childhood Cancer Research Funded by McKenna Claire Foundation and St. Baldrick’s Foundation Partnership
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.
Today is McKenna Claire’s Birthday
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.
St. Baldrick’s Foundation Partners with the McKenna Claire Foundation
Because childhood cancers are so varied and the need so great, we soon realized that this was a job bigger than any one foundation. With the thought that our voices and our funds are more powerful when united, we began looking for a way to partner with other foundations in order to make funding more effective.