By Stephanie Spillmann 2/28/17
Little Miracles Everywhere
When Your Four-Year-Old Has a Brain Tumor
It began with headaches that crumpled her into a heap on the floor. But by the time I could get to her with the plastic spoon of Tylenol, she was up and running again. Baffling. Then came the waking in the night screaming with pain and holding the back of her head.
Yep, she was one of the 1 in 300,000 who mysteriously have a tumor just incubating in there from birth. No explanation, and no genetic ties. Mercifully, it turned out to be the best type of brain tumor one can have…if you can put it that way.
We were told that pilocytic astrocytomas were usually non-cancerous (hers was the size of a lemon). I just thought my baby was going to die in surgery. Who opens up the brain of a preschooler?
From diagnosis to recovery room was 10 days. It felt like a lifetime, and it was definitely a whirlwind, but in those ten days, some amazing things happened. People are actually quite wonderful.
My doctor put me through a three-hour labor-monitoring session before giving me the okay to get on a plane for my girl’s surgery. I was almost in my eighth month. In the second hour, a nurse waltzed in, turned her head upside down, and flipped her hair out of the way. “Look, right there…do you see that?” I said yes.
She proceeded to tell me all about the brain surgery she had when she was eight–same kind of tumor. She looked into my eyes, put her hand on my arm, and told me it would all be okay. Just think of her when I got scared. Miracle one.
We decided not to stay in Colorado for her surgery. Too many details to tell, but the surgeon who wrote textbooks about pediatric brain surgery was in Alabama…he was the one. He happened to be in Birmingham where my entire extended family lives. We had a place to stay for three weeks.
We contacted him just a handful of days before he headed out on a 3-week vacation. He requested our daughter’s MRI scans to be sent overnight.
The FedEx guy mailed them with his personal shipping number — no charge. He was the owner, and they would get there. He tracked them himself.
The doc phoned us the next day and told us to be in his office within 48 hours. He couldn’t believe she wasn’t comatose yet. Miracles two, three, and four.
Our family of four, plus my mom, needed to get to Alabama immediately. There were no flights. My mom called every airline. After the last possibility had been exhausted, our pastor offered the church van in case we needed to drive through the night.
Mom called one more time; the agent found a flight no one else had seen. We booked it and left the next morning.
On one of our flights, we were greeted by a lovely blonde flight attendant who came right up and gave my daughter a goodie bag with her name on it. She then handed me a note and gave me a hug. It said that she had moved to Alabama to be closer to the surgeon we were headed to see. Her son had a chronic brain condition, and Dr. Oakes was simply the best there was.
That one can never be explained away. Miracle number five. Of all the flights in the world, and all of the flight attendants. Who on earth told them about us?
The last leg of our journey was not so encouraging. I have flown all of my life with parents who worked with the airlines for decades. We had been re-routed with a small plane due to bad weather. The weather was still awful when we headed from Missouri to Alabama in that 25-seater.
I have never been so scared in my life. My sick little one slept through the whole thing, thank God. And my two-year-old thought the white-knuckle turbulence was tons of fun and laughed and squealed the whole time. We made it back to earth. Miracle number six.
The day before the procedure, my mom asked Julia what special toy would make her feel brave for the surgery. She asked for “Littlefoot,” from The Land Before Time movie. Not only that, but his head had to be turned to the side, just so.
For hours my mom and aunt searched. The last toy store was closing and mom tapped on the window with desperate eyes…could he please just let her look for one thing? He didn’t think he’d seen any of those for a while but he’d check the back. A green, perfectly postured Littlefoot was produced to a tearful couple of ladies. Definitely miracle seven.
I sank into my aunt’s cloud-like couch with my big belly the night before surgery and prepared to lie awake all night. My burden floated away with no explanation, and I slept better than I had in weeks.
My little girl’s surgery went stunningly well and lasted only five hours out of the seven or eight we’d planned for. Dr. Oakes said he’d gotten everything out that he could, and we’d wait and see about the parts near the brainstem. Time and yearly MRI scans for several years postop would tell. All I could hear was that she lived through it. There was no cancer.
Fast-forward six years to a bright, giggly, dog-crazed girl. At age 11, Julia went for her last mandatory MRI and, as usual, it was all clear. A few months later, we opened a letter with Dr. Oakes’s stamp on the envelope. He officially declared her a surgical cure. No more MRIs. Miracles 8-12.