For those diagnosed with DIPG, only 10% make it to the point Mary is currently at. No one makes it to five years.
Since her diagnosis in 2020, Mary has undergone 42 sessions of radiation to the brain stem (12 of them awake), two brain surgeries, 12 rounds of chemo, hair loss twice, 17 rounds of stage 1 CAR-T cell trial, four rounds of apheresis, five PICC line surgeries, one port surgery, 55 MRIs, 70 times under anesthesia, four X-rays, three CT scans, 17 EKGs, three ECHOs, 19 trips to California for treatment (270 days total), 74 Ommaya taps (spinal taps in the brain), five walking braces, two walkers, 11 blood transfusions, two chemical burns from medical cleaner, and learning to walk again twice.
For the Stegmuellers it has been a test of faith. Kristin explained that Mary has received anointing of the sick nearly every week since they first found the tumor. Mary also received the sacraments of first Communion and confirmation a week before she started her first round of radiation.
“That’s all been really important to us — to have not only physical checkups but spiritual ones as well,” Kristin said.
Kristin has had her own battles while Mary fights for her life. The Catholic mother has suffered two miscarriages, one the night before the Luke Bryan concert.
“There’s obviously a reason that those babies didn’t take and we still have Mary, so there’s some purpose. I just really wish I knew what it was.”
As for Mary, she has six more sessions of radiation and will be able to start clinical trials again two weeks after her final session. The Stegmuellers have found a trial they’re interested in; however, it is unavailable in the state of Colorado. Currently, Colorado only offers one clinical trial for children with DIPG. The clinical trial they are hoping to receive requires three weekly infusions for three months.
Kristin explained: “We’re trying to get this trial started in Colorado, so that kids in Colorado have another option and don’t have to always travel. If we don’t get it for Mary, we’re going to keep fighting to get it for other kids.”
“She’s spent 33 months traveling every four to six weeks to California. And ripping her away from family and friends for at least three months — because we pretty much would have to live wherever it’s [the clinical trial] at — isn’t giving her a quality of life. So, it’s always something we’re battling — the quality versus quantity idea.”
In the meantime, Mary and her mom will continue their tradition of listening to Luke Bryan on the local country station as they drive to each of the remaining treatment sessions.
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Francesca is the Social Media Manager for Catholic News Agency. She received her degree in Communications with an emphasis in Digital Media from the University of Colorado – Denver.