Each weekday in the United States, 46 mothers are told their child has cancer. For Allison Smith, that day was September 13, 2011—a date that is burned into her memory.
Thirteen-month-old Jackson had been in and out of the Emergency Room several times over a six-month period with vomiting, dehydration, and failure to thrive. Finally, the ER physicians decided to do an MRI, which showed Jackson had a Pilomyxoid Astrocytoma brain tumor.
“That day was surreal. On one hand, there was some relief in having an answer to why Jackson had been so sick,” says Allison, whose husband, Jason, works in Draper’s gym equipment department. “On the other hand, our son had to have surgery to remove a brain tumor. I remember lots of tears, lots of doctors, and lots of holding my precious baby.”
Three days later, Jackson underwent an eight-hour surgery to remove the tumor, only to see it return in the following months. This time there was chemotherapy: 42 treatments over 70 weeks. The treatments were completed in July 2013, just a few weeks before Jackson’s third birthday. A follow-up scan showed he was clear of any cancer.
Throughout the ordeal, Allison says the constant anxiety was one of the toughest things to deal with, but with a childhood cancer diagnosis, there is nothing that is easy. Every scene is tinged with tragedy.
“Watching our baby get taken away for a life or death surgery, holding him down week after week so a needle can be put in his chest to receive toxic drugs,” Allison recalls of those months. “Knowing the toll it takes on his little body, sitting in a room after a scan waiting for a doctor to tell you if it’s working. The way your breath catches every time you tell someone your two-year-old has a brain tumor.”
Allison says that between scans they would play “MRI” at home to practice being brave. She remembers avoiding everything from family dinners to birthday parties because Jackson’s low immune system was unable to fight even something as simple as a cough and runny nose. She also recalls scheduling a c-section for her daughter’s birth around Jackson’s chemo appointments. But, strange as it may sound at first, there, in those cancer-stricken moments, when the world was closing in, Allison and Jason weren’t thinking about how tough it was.
“In the moment, you’re in survival mode. You do what you need to do because you don’t have a choice,” she points out. “But when it’s quiet, when you lay your head down, the tidal waves crash. Even now.”
Although Jackson recently celebrated one year of N.E.D. (No Evidence of Disease), he is not free from the specter of cancer, nor is his family. Jackson’s next MRI is in September, and he will continue to get scans over the next few years, until the doctors are sure the tumor is gone for good. Allison says the fear never goes away, and she, too, has needed to seek healing.
“I’ve done therapy and medication, and I’ve talk, talk, talked about it with family and friends,” she says. But she needed something more. And she found it in the 46 Mommas “Shave for the Brave” event. Each year, the St. Baldrick’s Foundation sponsors the 46 Mommas event to raise money for research into childhood cancer. According to the St. Baldrick’s website, only four percent of federal cancer research dollars go to childhood cancers; almost no money for childhood cancer drug development comes from pharmaceutical companies because they are not profitable. So they raise money to specifically fund research into finding cures for childhood cancers.
The 46 Mommas “Shave for the Brave” event is based on the fact that, each weekday, 46 mothers are told their kid has cancer. Allison decided to apply to be one of the 46 mothers and have her head shaved this year because she felt like it was something she needed to do, and not just for her own healing process.
“I’d always admired the women who stood up for their children with such a public display and commitment,” she says, adding that she was still hoping for some healing for herself as part of the process. Still, she was nervous at first.
“The actual moment I sat in the chair for my turn and heard the clippers buzz was very overwhelming,” she says. “I wasn’t really upset about losing my hair; it was just a flood of memories and of reasons why I was doing it to begin with.”
Allison says it helped to be at the event—held this year in Boston—with other moms who knew exactly what she has gone through. She says there were so many things that were understood without having to say a word.
“It’s an instant bond and sisterhood regardless of our backgrounds and differences,” she says. “We were all there to stand together to support each other and make a statement that our kids, all kids, deserve so much more than what they are getting. There are very few options and choices when you are dealing with your child’s cancer diagnosis. This was my choice, something I got a say in.”
The hardest part of the event for Allison was watching the mothers who had lost children to cancer.
“They are not just an article I read about online; their child is not just a statistic. They are the bravest women I know. They have laid their battle worn child to rest and yet they continue to fight and advocate for the children yet to be diagnosed.”
Allison says she emerged from the event feeling empowered, stronger, lighter, and proud. And that will serve her in good stead as she and her family live in a tenuous balance between hope and fear.
A year on from being pronounced free of the tumor, Jackson still remembers a “Hot Wheels” car he was given at chemo, and Allison says when his tummy or elbow hurts he says, “Maybe it’s a brain tumor.”
“He never knew any different—that was always his normal,” Allison says of Jackson’s ordeal. “I don’t think he fully understands yet, he’s only four. It’s hard to explain something he can’t see.”
Allison does say, however, that he enjoys the attention, and describes him as “ridiculously spoiled.”
“He doesn’t really care about my hair or lack thereof. I hope one day he will understand and be proud of me. Maybe one day we can “shave for the brave” again, together.”
For more information on the 46 Mommas campaign, please visit http://www.stbaldricks.org/campaigns/46mommas/.