When you meet 18-year-old Allison, you might notice her short and sassy haircut or her wide, generous smile. You might notice the tattoo on her left wrist that reads “Fearless” in elegant handwriting. But you definitely would never guess that she’s in the middle of a fight with cancer for the second time in her young life.
At age three, Allison was diagnosed with a brain tumor and after two surgeries, 30 rounds of radiation and one and a half years of chemotherapy, she was declared cancer-free. Thirteen years later, she and her family never thought cancer would enter back into their lives – until Allison started noticing some unusual changes. At first, it was just weight gain, which didn’t seem like such a big deal… at first.
No Good Answers
Allison’s parents, Mark and Karen, didn’t know what could be happening – Allison had been having scans every year to check for a cancer recurrence in her brain, and nothing had ever been wrong. But after several appointments and plenty of confusion, doctors delivered a devastating diagnosis – Allison had a nearly four centimeter tumor in her kidney, and her adrenal gland was entirely taken over by cancer. This explained the weight gain – and why her annual brain scans would never have caught these new tumors.
At home they received the call that surprised (not in a good way), shocked and filled them with fear. Karen walked out to the family’s detached garage, balled up a blanket, held it to her mouth and screamed. “I remember screaming and screaming and screaming,” Karen said. “I screamed until my throat was sore. It was horrible. I could not believe we would have to go through all this again.”
Mark and Karen had to tell Allison. “There is something profoundly beautiful and awful in seeing your 17-year old daughter cradled in her Dad’s arms as she is told news that will cause her so much pain,” Karen said.
Allison was devastated. “I was bawling when they told me,” she said. “I just kept thinking, ‘Why is this happening to me? Why is this happening to me again?’ It was hard to take because there was no good answer – there still isn’t.”
Karen contemplated how in the world she’d tell Allison’s two older sisters, Lauren and Rachael, who were in college, that their baby sister had cancer, again.
Cancer, Round Two
Allison’s blood pressure had to be lowered before any treatment could begin. It was a time of waiting that drove her crazy. A biopsy confirmed two separate cancers, which completely baffled the medical team. Allison underwent three intense rounds of chemotherapy to shrink the tumors, meaning weeks in the hospital away from school, friends and the comfort of home, especially her cat, Oliver.
When Allison’s blood pressure was finally low enough, doctors scheduled her surgery – a surgery that required kidney, endocrine and vascular surgeons at Mayo Clinic in Rochester, Minnesota. Today, she sports a chevron-shaped scar from that surgery that stretches 20 inches across her abdomen – a true sign of bravery.
When treatment started, Karen used the lessons she learned the first time around to help make Allison’s hospital stays a little bit brighter. She brought window markers to Allison’s hospital room and wrote “Alli Rocks” on the window, then had every visitor sign the windows so Allison could see the names of all the people who were pulling for her. The walls were filled with pictures of family, friends and Oliver. She allowed friends and family members to help out with meals and errands, and Allison’s sisters came with to appointments to take notes and advocate for their sister’s needs.
“I carried the whole burden the first time, so this time I decided to let people help,” Karen said. “It feels like our family is one big unit huddled around Allison, fiercely protecting her. We really are a force to be reckoned with.”
Allison says cancer has significantly changed the way she thinks about her life. She’s more careful and possessive with her time now, making sure she uses it to do things she loves – like babysitting, cooking and baking.
“I do things now rather than waiting, and I don’t want to waste my time doing things I don’t love,” Allison said. “I love spending time babysitting little kids I’ve met through church – spending time with them is so easy because they’re always cheerful and goofy and they make me laugh.”
New Expectations, New Rules
Allison says thinking too far into her uncertain future overwhelms her, so she tries to take everything one day at a time. Scans in June revealed that there are new tumors increasing in size on Allison’s lungs – and her old chemotherapy isn’t working. She’s been placed on a clinical trial with a new drug aimed at shrinking the tumors. It will be a while before doctors will know if this drug is effective – but in the meantime, Allison is trying to think only as far ahead as she needs to.
“I’ve told my mom before that I just want to know enough to get to the next step,” Allison said. “One day at a time.”
Karen admits that all her parenting rules went out the window when Allison was diagnosed with cancer – when your whole world is turned upside down, rules from when it was still right-side-up just don’t apply anymore. So when Allison said she wanted to get a tattoo, Karen couldn’t say no.
Allison now has two tattoos – both with significant meaning. The first, a star on her right ankle, keeps her feeling connected to her sisters, who each have either a sun or a moon – a reference to their favorite E.E. Cummings Poem, “You Are My Sun, My Moon, and All My Stars.” The second, on her left wrist, says “Fearless.”
“My sisters had the idea of having it be in my mom’s handwriting, so she wrote it down probably 40 times before she got the perfect one,” Allison said. “It’s my reminder that I’ve been through crappy stuff, and there might be more, but I can do it.”
Update: On January 15, doctors discovered a mass in Allison’s head. On January 28, 2020, Allison passed away at 5:08 a.m. She was surrounded by her parents, Mark and Karen, and her two older sisters, Rachael and Lauren.
Many cancer treatments for kids like Allison haven’t improved in decades, and there are fewer and fewer options if those treatments don’t work. Your dollar funds the work of researchers searching for the better, safer cancer treatments kids like Allison deserve.