Six years after his daughter's diagnosis, St. Jude dad Jeremiah remembers the Halloween it all began.
Halloween 2014 was different for several reasons. For one, we had been used to bundling up our three kids in costumes that doubled as protection against the chilly drizzle of the Pacific Northwest. Now we lived in Arizona. It was warm, and the smell of smoking grills drifted on the air as our neighborhood turned into one big, Halloween block party.
But also, our 6-year-old, Kiara — dressed as a cowgirl that year — wasn’t herself. Kids love that day, but her energy was down. She couldn’t keep her balance, and said her legs were tired or asleep. She asked me to carry her.
The next day, my wife took the kids to the park and Kiara fell down twice. We called the urgent care and took her in. The doctor recognized her symptoms as neurological and sent us to the local children’s hospital where we found out Kiara had a golf ball-sized brain tumor.
It all happened so fast. She came out of an 8–hour brain surgery with pretty severe posterior fossa, meaning she couldn’t walk or talk. We were getting calls from the billing department at her ICU bedside a day later, and had to make decisions about her care. They found the medulloblastoma had spread to her spine, and treatment options were limited.
But something else happened on Halloween, a chance meeting that would alter the course for us. At a friend's house, we were introduced to a guy who had coached the daughters of a family who had experience with childhood cancer, specifically a cancerous brain tumor. Now this near-stranger connected us with that family. They just showed up and loved us, hugged us, prayed with us, gave us questions to ask.
And they told us about St. Jude Children's Research Hospital.
We didn’t know a thing about St. Jude, but they had a treatment plan for Kiara's situation, and we obtained a referral. Initially, we didn’t even know St. Jude wasn’t going to bill us. We sold most of our stuff, anticipating the costs. The very first bill submitted to our insurance for her hospitalization in Arizona had been over $100,000. We would do absolutely anything to give Kiara the best care, no matter the cost. But being able to dismiss that concern made an immense difference for our family.
At St. Jude, Kiara had six weeks of radiation therapy, then started chemotherapy. Throughout, she had intensive rehabilitation therapy. She didn’t talk from November 4th to January 31st. I remember in April of that year, for the first time since surgery, Kiara was able to sit in her chair and play with her sister unassisted. That was a taste of normalcy, and it was sweet beyond compare.
Just being honest, before it happened to us, we were somewhat apathetic about childhood cancer. We would think, if it happened to someone else, "Oh that’s terrible."
Recently, I connected with the father of a family we knew at St. Jude whose son did not make it. He was an incredibly special young man who lived with such positivity. After all these years, that loss is still fresh. There’s another child we knew at St. Jude who Kiara still refers to as her best friend, though the little girl passed away. These families are forever changed, and so are we. Our hearts and minds have been opened to the real impact of childhood cancer.
My hope is that people will get involved and help make a difference without having to go through this themselves.
Now it’s Halloween season again and we’re days away from marking the six-year anniversary of Kiara’s diagnosis at 6 years old. That was literally half her life ago. But it’s not all in the past. We still do physical and occupational therapy and speech. She still has challenges, such as requiring a walker and orthotics. She still loves arts and crafts, and wants to be either an actress or an art teacher. And she is still the most compassionate girl you could hope to meet.
This year, the girls are getting creative with their costumes. There are elements of a moose and elements of a princess, so I’m honestly not sure what they have in mind. But I do know that, since everyone has to wear masks this year while trick-or-treating, they’ve hatched a mischievous plan to make a second round of the houses unrecognized.
For their mom and me, after all they've been through, just seeing our kids getting to be kids is the real treat.