Hope on Wheels...
I am supporting the Courage Classic (riding for Wheels of Justice) so that I can give hope to children like my son Fynn, and their families.
The beginning of the end:
About 6 months after Fynn was born, we realized that he was not meeting milestones typical of a baby his age. It was recommended that we get an MRI of Fynn’s brain as a starting point to figure out what was going on. The first MRI revealed a lesion (a small, round “spot”) in his cerebellum. Because of this, we had to do MRI’s on a regular basis to monitor the lesion. For years the lesion remained the same, so by the time he was 7 years old, we were getting MRI’s every other year. In the Spring of 2016 we went in for Fynn’s MRI expecting the usual report: “the lesion has stayed the same, come on back in a year and a half”. But, this time, our doctor revealed that he found another lesion. This one in the pons area of his brain. He asked about any “symptoms” Fynn was experiencing. To our knowledge, Fynn seemed to be acting “normal”. Because of this, the doctor never mentioned that DIPG could be an option, so we went on with our lives as usual in a “monitoring” pattern. The next step another MRI in 3 months. Three months and another MRI later the doctor informed us that the lesion was growing. A couple of MRI’s and about 5 months later we ended up doing a brain biopsy on Fynn to determine what kind of tumor we were dealing with. A couple of weeks before Christmas of 2016, Fynn endured a grueling brain surgery. Then, on December 19, 2016, a week after his brain biopsy, Fynn was diagnosed with a rare brain tumor known as DIPG. This stands for Diffuse Intrinsic Pontine Glioma. Effectively a stage 4, incurable cancer with the lowest survival rate of all pediatric cancers. DIPG affects 2-300 kids each year and has a 5 year survival rate of <1%. The median overall survival of kids diagnosed with DIPG is approximately 9 months with radiation and 4 to 6 months without. Had we known what we know now, I don’t think we ever would have put him through that surgery. Hope can be a double-edged sword. (By the way, it turns out that his initial lesion was not cancerous and had nothing to do with the DIPG or his Dup15q.)
In addition to doing an MRI when Fynn was not meeting milestones as a baby, we also did a lot of blood tests. It was discovered that he also had a rare chromosomal disorder: Dup15q. A duplication of his 15th chromosome. Yet, despite the many challenges that this disorder presented, I always thought "well, at least he is healthy...thank God he is healthy!”.
As you can imagine, hearing the unexpected news of him having an incurable brain tumor flipped our world upside down. Losing him 4 months later on April 9, 2017 seemed impossible. Unthinkable. The worst possible thing that a mama, a dad, a sibling could ever imagine had come true.
Wyatt, Kevin and I are riding the Courage Classic again this year with the Wheels of Justice Team. As a team, all of the funds that are raised by Wheels of Justice go directly to the CCBD (Center for Cancer and Blood Disorders) at Children's Hospital. The CCBD was instrumental in helping our family cope with the devastating news we received. They offered support and information crucial in helping us put the pieces of our lives back together and forging a path forward. (In fact, a Fellow with the CCBD actually studied some of Fynn's brain tissue harvested from his biopsy in an effort to learn more about this deadly tumor.) We have hope that the Children's CCBD, partnered with other clinics across the world will someday find a cure for DIPG and all of the devastating cancers that take our children away from us much too soon.
Fynn will be with us as we ride. He is in our hearts wherever we go. We ride to honor his strengh and bravery. He was not able to communicate with us in the same way typical children communicate to their parents, and yet he was a trooper through the entire experience. He always managed a smile. Managed to find joy and laughter. Our memories of him and our love for him keep us peddaling in hopes of finding a cure.
"See you soon!" ~ Fynnism Until then, sweet Fynn, we'll will keep riding.
Will you support us and other children/families affected by DIPG?