About Me
In the beginning of April I started noticing small changes in my daughter, McKinli. Her personality was shifting and because I am autistic myself, I wondered if she might be too. I began setting up evaluations to have her tested, but around the same time she started getting sick. She was throwing up often and feeling nauseous, and I just knew something wasn’t right.
I took her to several doctors and emergency rooms, but every time I was told it was something simple. A UTI. Constipation. Just normal changes for a 5-year-old finishing pre-K. But in my gut I felt like they were missing something. My gut said to take her to Texas Children’s Hospital.
That choice gave us the answers we had been searching for. Within 30 minutes of arriving they ran a CT scan, and within another 30 minutes they told us what no parent ever wants to hear. They had found a brain tumor.
The next day, McKinli had surgery to place a VP shunt to drain the fluid that was building up in her brain. The following day an MRI confirmed what type of tumor it was. The results came back that evening. McKinli had been diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare and aggressive brain tumor.
We stayed at Texas Children’s for 2 weeks doing more scans and a biopsy. After we finally went home, about a week later I got a call saying we were headed to St. Jude Children’s Research Hospital for radiation. We arrived June 25th, she started treatment July 2nd, and by August 13th she was finished. We came home that Friday, August 15th.
Since then, McKinli has been able to go back to school and start kindergarten. Right now we are in the process of starting a clinical trial at Seattle Children’s Hospital.
Through all of this our family has pulled together. Her stepdad has been there every step of the way, taking her to appointments when I had to work and being a huge support for both me and her.
This is not the story I ever imagined I’d be sharing about my little girl. But it is ours. It is a story of love, strength, and hope. And no matter what comes, we will keep showing up and fighting with her every single day.
