Denver, Colo., Aug 8, 2023 / 13:10 pm (CNA).
Mary Stegmueller was diagnosed with a rare form of cancer, with no known cure, called Diffuse Intrinsic Pontine Giloma (DIPG) at the age of 4. She was told she only had weeks to live after her diagnosis in 2020. The now 7-year-old continues to fight as she undergoes her 43rd session (third round) of radiation.
The young girl is a student at Frassati Catholic Academy and her family are parishioners at St. Scholastica Parish in Erie, Colorado. Thanks to her local Catholic community, Mary was able to make one of her biggest dreams come true.
The Denver Catholic first told Mary’s story in March 2021, when Frassati Catholic Academy held “#MaryStrong Day” to help raise money to alleviate the many stresses that come with a cancer diagnosis like hers. The Stegmueller family has continued to receive support from the Catholic community.
Kristin Stegmueller, Mary’s mom, spoke with CNA about Mary’s love for country singer Luke Bryan’s music and her daughter’s surprise meet-and-greet with the country star, thanks to the efforts of others.
Initially, Mary and her family were simply going to attend Bryan’s concert at Ball Arena in Denver on July 29. Bill Hanzlik, a former Denver Nuggets player and founder of the youth sports organization Gold Crown Foundation, heard Mary’s story and immediately felt compelled to help her attend the concert. Thanks to a generous donation, Mary, her mom, dad Bobby, 5-year-old brother Robbie, and some other family and friends would be enjoying the concert in a private suite.
However, thanks to the nonstop efforts by Mary’s family and friends on social media, Bryan himself took notice and requested a meet-and-greet with Mary and her family before his concert.
Kristin shared that a spokesperson from Ball Arena contacted her hours before the concert to tell them about the meeting with Bryan.
“We’re all sitting in the room, kind of waiting for him to come in, and Mary was talking to everybody, and I noticed he had peeked his head in but we didn’t say anything to her, and then all of a sudden she realized he was there and total fan girl screamed,” Kristin shared.
She continued: “He came and sat with all the kids on the couch and was just chatting with them and she was so shy, but just smiled the whole time.”
Kristin said that seeing her daughter’s wish come true was “beyond words.”
“It was a glimpse of what you know she will hopefully be like as a teenager. Hopefully, we’ll get there,” she said. “But just to see her so happy and excited — I’ve not seen her stay up that late in a very long time.”
“He was singing to her and she tried to get up and dance and we had not seen her try to get up on her own feet in quite a while, willingly.”
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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