3.8%

September is Childhood Cancer Awareness Month. Most of you probably expect posts like this from me right around this time, because most of you know that I am a childhood cancer survivor. For those of you who don't, here's a brief rundown.

On May 16, 2005 (my 16th birthday) I was diagnosed with Ewing's Sarcoma. Ewing's is a rare pediatric (kids) bone and soft tissue cancer.  Mine was in my ribcage. The left 6th rib to be exact. Ewing's is very aggressive, spreads quickly, and is difficult to treat. At the time of my diagnosis, there was NO regimen for treating Ewing's. It was such a rare cancer that there had not been enough research done to find what worked before the patient ( A CHILD) succumbed to this disease. 

My parents were given the option to enroll me in a research study that would test new chemotherapy, dosages, and administration in hopes of finding a few more answers. It was risky. What if this "trial" did not work? Well..what they were currently using at that times wasn't working either. My parents decided that is was worth the chance, and we agreed that IF it didn't work, at least they had a little more information for the next kid. 

Here's how little they knew about this pediatric cancer and treatment. 

I distinctly remember sitting in a room with doctors, my family, a social worker, and a bunch of others I don't know the titles of. They went through every page of each medicine, their side effects and long term implications for my life. They listed your typical: hair loss, nausea, vomiting, mouth sores, constipation. etc. Some more serious side effects included: heart palpitations, long term weakened cardiac functions, blood pressure issues, on bringing of other cancers...etc. I remember that even though I was just 16, we had to have the "talk". Would this affect my ability to have children? It was awkward and I didn't want to talk about THAT! Gross!!!! But, they said that from what they had seen, the reproductive system, particularly in girls, had not been damaged and, that when that time came in my life, I should have no trouble. 

Fast forward to today. I'm in tears as I think about the children I will never have. No little baby with my dark skin and my husbands blue eyes. No one to carry on his name. No one to call mine. 

Guys, my doctors didn't lie to my family and me 11 years ago. They told us what they knew. Which wasn't much. Why? Sad truth: because most of those children diagnosed did not survive. Because enough data had not been collected to determine the outcome on the reproductive system in relation to Ewing's Sarcoma. Because Childhood Cancer Research is at the bottom of the to-do list.

 Here is a statistic for you: ALL pediatric cancers COMBINED only recieve 3.8% of national cancer research funding. Read more about this here.

Some good news from my story is this: the "trial" regimen my parent's enrolled me in is now the standard regimen for Ewing's Sarcoma patients. The mortality rate of this diagnosis has gone up nearly 20% since I was diagnosed in 2005. And, doctor's are learning more as they go. Now, instead of a girl thinking back to that awkward conversation in a room full of strangers and thinking, "they said I can have babies someday"...families now are aware that this is likely not the case.

Can you imagine what could be discovered if Pediatric Cancer Research was given more than 3.8% ? 

#childhoodcancerawareness