A Message from Sean:
April 11th, 2014, Kayleigh had an MRI done, because she was experiencing symptoms of balance & coordination issues. This is was ongoing for a month or two previously but what triggered an alarm in our heads was an email we got from her homeroom teacher saying Kayleigh, a right-handed child, was now writing left-handed and didn’t even complain to anyone. When asked, she said it was because her right hand shakes so much she couldn’t write well. After meeting with her pediatrician then a neurologist, we had an MRI scheduled. After several images and various doctors going into the MRI, we finally got a confirmation that Kayleigh had a 3cm brain tumor in her cerebellum. It needed to be removed.
April 14th, Kayleigh had a posterior cranial fossa surgical procedure that removed her tumor successfully. It was then exhumed and found to be active cancer cells within the mass. All I remember is the term Sonic Hedgehog [a protein that causes DNA damage]. Since the removal, Kayleigh has had to endure her eyes readjusting from the surgery. Her left eye has returned to normal use but her right eye has not: it’s an effect of the tumor removal’s ataxia. After the entire treatment plan is complete, she will endure yet another surgery to hopefully fix the eye issue. In May of 2014, Kayleigh completed 36 radiation treatments, with the bulk being entire brain and spine. She started chemotherapy in August of 2014. Treatment is finally nearing an end and we just “celebrated” her year anniversary from the diagnosis date and tumor removal.
She is 9 now and in good spirits. At times she has questioned why she got cancer and why she’s had to lose her hearing, her red hair, and her eye issues. She does not let it get the best of her…even after a small incident where a kid teased her at school, which I’m not proud to say I blew up over, as her Dad. For the most part, she has a had a very serious community strength for her from school and football families that I coach with. She has a global network now, because of how Dad hasn’t been happy with the 4% of cancer funding for childhood cancer. Kayleigh wants to start a foundation, after her surgeries are all done and she has recovered. She wants to help other kids and families with cancer, by any means she can imagine.
My daughter is a better person than I will ever be and she is my hero. We cannot thank all of those that have supported her in the battle against Medulloblastoma enough. She is making people more aware of the importance of and lack of funding for childhood cancer. She will continue the fight with her family to raise funding to exceed or equal that of adult cancers and, one day, she’ll take over her own foundation and move it into the future: being an advocate herself, far beyond what she has done already.
For more on Kayleigh, please join her Facebook community page.
Image courtesy of Sean Hogan.