At our event, some folks will shave their heads – and others like me will keep the hair we have and put our hearts into supporting childhood cancer research.
I'm volunteering and raising money with St. Baldrick's to help kids with cancer! Every 2 minutes a child is diagnosed with cancer worldwide, and 1 in 5 of those in the U. S. will not survive.
I was incredibly naïve in the world of childhood cancer. In the fall of 2015, I met the first person I knew to have lost their child that way. In June of 2016, another friend's son was diagnosed only to have the cancer take him the following spring.
And then in May of 2017... it finally hit my home.
Rhabdomyosarcoma?! Anyone know what it is? My big kid Joey does.
He was a normal 7-year-old kid, a 1st grader who loved going to school (he still loves to, actually). He had attained his double blue stripe belt in karate and raced go karts…until he was diagnosed with Paratesticular Rhabdomyosarcoma. This cancer is relatively rare and accounts for approximately 5-8% of childhood cancers. His version is Embryonal Rhabdomyosarcoma (ERMS) where the malignant cells resemble the developing muscle cells of a 6-to-8 weeks-old embryo.
While having had found his tumor so early on and his diagnosis are incredible, his staging and grouping allowed for us to concentrate on eradicating the malignant cells and, hopefully, decreasing his chances of recurrence by 90+%.
Joey is 5 years off-treatment. His hair grew back. He looks and acts 'normal'. The true test remains though: what will be the long-term effects of using adult medications on a child in the years to come?
I am no longer naïve. It COULD (and DID) happen to my family. It did happen to so many people we met at clinic. And, yes, some of them lost their battles while we were there and in the years since. TOO MANY HAVE LOST THEIR LIVES, and they will continue to do so, sadly, unless and until we find a cure.
And, yet... Did you know that only 4% of federal cancer research funding goes towards pediatric cancer? Did you know that in the last 20 years there have only been 3 NEW drugs for our kids but nearly 200 for adults? Our kids received adult chemotherapies with incredible side effects because they just have no other options. In fact, some of the medications Joey received were being used 40+ years ago on adult chemo patients.
I am raising money so others like my Joey can have better options available for their juvenile bodies, rather than deal with adult medicines.
I'm raising money to honor the boys and girls we've made friends with through our journey and in memory of those who have been lost along the way.
I am part of #TeamJoey - where we believe that no kid (or their family) should have to fight alone.
Read more about our involvement in the cancer world here: https://tribeanddesign.wordpress.com/