400 MILES, 2 DAYS (Boston, MA to Penn Yan, NY)
BENEFITTING THE BOSTON CHILDRENS HOSPITAL
One year ago my wife and I received what I have to imagine is some of the worst news that parents (first time or otherwise) can receive. At the age of 4 months our beautiful daughter Claire Elizabeth had been diagnosed with bilateral Retinoblastoma, which at its most simple is cancer within both of her eyes. It is a genetic mutation that happens in an extremely small amount of the population. Thanks to my mother in law and wife who spoke up at her 4 month checkup about one eye not quite tracking the same as the other our pediatrician took a closer look at here eyes and suggested to us that she have a consult with an eye specialist. We thought nothing more of this then our daughter might need glasses to ensure that her eyes were in proper alignment. Little did we know that at that appointment, while I was in the middle of Kansas about to race my bike would we learn essentially immediately that our daughter had a tumor in her eye. The following week when we took Claire back for her MRI we learned that it was not only one eye that had a tumor but both eyes had multiple tumors. If I am honest, Kait and I had gone into that visit to the hospital hoping and praying that it was just one tumor in one eye…or even that the first diagnosis was a mistake. However, when we received the news of multiple tumors in both eyes it was like a anvil had been dropped on our stomachs. At least that is how I felt.
That is how this started 12 months ago. Since we learned of the full extent of our daughters situation that day at Boston Children's Hospital we have been on a very specific path to giving Claire all the care that she needs. Almost immediately our primary doctor (Dr. Shaw) had our first procedure booked. We were introduced to the team at the Jimmy Fund who would be seeing over her chemotherapy treatments and literally we were off and running. I think within 2 days off her MRI we were back at Children's for an overnight visit to install her main-line port. What followed was 6 rounds of chemotherapy (1 per month) from June - November. We celebrated Claire's last day of Chemo with our amazing Jimmy Fund team sand since then her condition has been monitored by Dr. Shaw who each month completes a full eye exam under anesthesia to ensure that the tumors are under control. When Dr. Shaw completes his exams he is utilizing both laser and cryotherapy treatments to in my words "blast away or freeze off" any tumors that remain. Its certainly more complicated than that, but I think you get my point. As of May 2020 we are as optimistic as ever based on our last visit where her left eye had zero activity month over month and her right only had one pocket of active cancer cells which had cryotherapy applied to them. Truly the hardest part now is waiting each month.
My wife and I cannot justly express the gratitude to those who have helped and supported us through the last 12 months. From our family, to our friends, to our coworkers and of course or tremendous teams at both The Jimmy Fund and The Boston Children's Hospital.
All of this backstory leads me to sharing with you all that in my own personal way I have wanted to do something in specific to say thank you to the Boston Children's Hospital who has done so much for us. I have had this idea for a #ride4claire in my head for quite some time. It was always going to be a personal adventure and one that I hoped would be a little grandiose to really get my fired up…With our current situation due to COVID all of my bike racing for 2020 has been cancelled. If you know me, then you know that I am pretty competitive and love racing. Instead of racing this June I am devoting all my focus to the #RIDE4CLAIRE. During 2 days in June 2020, I will be riding from my home here outside of Boston to my hometown where my parents live in Penn Yan, NY. The total distance will be 400 miles (give or take) and I will be targeting to complete this in two days.
1. To raise awareness for childhood cancer and say Thank You to the Boston Children's Hospital as part of their annual Corporate Cup Fundraise.
2. To ride home to my parents, with Kait and Claire meeting me for the finish so that Claire (and us) can see her Grandparents for the first time since January. Facetime and Portal calls are great, but nothing can replace the real thing!
3. To have a personal experience to reflect on the past year and how lucky my family has been to have such a great support team around us.
4. To start something that I hope can continue to grow over the years.
The Boston Children's Hospital now more than ever needs our support. With COVID causing procedures to be reduced to just 20% of normal at times, the funding of the hospital is much different and very much reduced than in normal times. I realize that it can be a hard time to donate when people are struggling at home, balancing jobs, losing jobs, taking care of children and home, etc…However, the hospital must carry on and every bit that we can raise will go to help a child like our daughter.
I hope that you will support my personal challenge to benefit the Boston Children's Hospital during the 2020 Corporate Cup Fundraiser.