I now know many big medical terms. Not by choice, but was forced to. In fact, during my countless hours at the hospital, several nurses mistakenly identified me as a medical professional. My daughter, Belle, was diagnosed with a clival chordoma at age 9. What is a chordoma? Basically, a growing mass that can occur anywhere along the spinal chord from a piece that is supposed to go away in the embryonic stage. Sometimes it doesn't go away and, in very rare cases, grows into something bad. Rare – like only 20 kids in the US are diagnosed with this a year kind of rare.
Belle endured several surgeries and specialized radiation treatments and as she turned 10 years old, we were left with a hopeful outlook for the future. We did our best to regroup as a family, to put back the pieces of our lives, and to throw in some new pieces (like moving to Bend, OR). Unfortunately, these efforts were short-lived as Belle's tumor came back in a very aggressive form when she was 11. The year 2015 was a blur. We moved back to Tucson to be closer to doctors familiar with her situation as we conferenced with experts in Boston, LA, and Houston. We battled through every detail of her care, adding many elements on our own, including a robust nutrition program and exercise. At one point, the doctors told us she had less than a few weeks to live and we should start saying our "good-byes". Belle had other plans and fought through those tough times with courage and strength.
Days of recovery started turning into months of getting stronger. Taking a step back, the progress is remarkable. From being almost completely paralyzed, she now rides her bike around our neighborhood. From severe brain damage from hydrocephalus, she now earns honor roll at school. From having to face death, she now faces normal teenage girl drama. While the future isn't guaranteed (for any of us), we are thankful to still have Belle in our lives and experiencing the wonders of life.
Belle's story reminds us that each day is a blessing. We should strive to live each day fully and treasure the time we have with those we love. Her journey also brings to light the many other kids suffering every day as they push on through their own battles with cancer. We are proud to partner with charities supporting this cause.