Meet: Ford, In Active Treatment, Ewing Sarcoma
“Hi there, I'm Ford! I just turned the big O-N-E last month and am movin' and groovin' all day! Just a few short months ago at my nine-month checkup, my Mom told my Pediatrician I was a bit backed up, if you know what I mean. I had also just started to crawl and having a blast with my new mobility skills! Fast forward a couple of weeks, multiple pediatrician visits and calls, and an ER visit because I had stopped eating and was severely constipated. Then, I stopped crawling and would lay flat on my belly screaming in pain. My parents took me to doctor once again, and they refused to leave without being admitted to the hospital. The next day I had a MRI and that's when life changed for my family. A tumor was found in my spine, and emergency spinal surgery was performed the next day. Immediately, I regained movement in my legs again, and started to re-learn to crawl day by day, which was the goal of the surgery. However, further scans showed I had masses in my peri-spinal region and a lesion in one of my lungs. After five excruciating days in the hospital of just waiting for pathology labs to come back, I was diagnosed with Ewing Sarcoma. At exactly 10 months young, I had cancer.
Less than a week later, I had surgery for placement of my port and I started chemotherapy. I have 17 weeks of initiation and have completed six cycles lasting 3 to 6 days and 5 different drugs poisoning my barely one year old body plus short and long term effects that have and can cause a whole slew of other setbacks and diagnoses. Not to mention the already 20+ blood and platelet transfusions, stem cell collection procedure, injections to boost my "counts" after every chemo cycle and countless fevers and unplanned admittance for neutropenia, infections and mucositis. If I could count, I'd tell you the number of times I've spent a weekend at home with my family, is less than one hand in the past three months.
I just started proton therapy, and have 6 consecutive weeks of treatment, in addition to chemo. All this is far away from home, and I do not get to see my older brother who I desperately miss. He lights up my world and can make me smile the most. While neither of us really know what is going on (he's only 3), we both know when we reunite, our smiles grin ear to ear and the belly laughs that come out of us bring our parents to tears. That is best medicine we all get to take in!
I'm gaining strength in my legs every day, pulling myself up and hoping to chase after my brother in due time. However, It's quite hard though when you're 1, learning to crawl, walk and getting into everything, to be told to stay on a 3x5 mat all day long. I can tell you; my parents do a darn good job of getting creative with their entertainment skills for me!
I know I have a tough road ahead of me, with at least six more months of chemo, radiation and potentially more surgery. I dream of when my family can all be under one roof one day, and my parents don't have to live in fear of when I get a fever or have a hospital bag always packed in the car. I look for the positivity in everything and (almost) always keep a smile on my face! I've had an amazing team of nurses, doctors, care partners, friends and family support me every step, every day of the way. I know I've got this beat because I was built "Ford Tough"- as tough as tough can be!
I am a Fighter. I am Brave. I am Strong. I am Fierce.
We NEED a cure for Ewing Sarcoma and ALL childhood cancers. No child should ever have to endure this horrible disease.”