Turning pain into a cure
Parents hope their son’s legacy can help save other kids’ lives
Hollis Doherty was a star elementaryschool athlete, but not for the reasons you’d think. “He wasn’t necessarily the most skilled player ... but he was like the fun kid; he was the cheerleader,” said his mother, Shawnee.
He was the first kid ever to be on the championship-winning baseball, basketball and football teams in one year in his uptown Phoenix program, but photos usually show him running around and laughing on the field, no ball in sight.
“He called himself ‘Hollis the Hugger,’ because he was always hugging everybody, hugging strangers,” Shawnee said.
He was a healthy kid with perfect attendance in school, so it was strange when Hollis had his first bad headache in March 2016. He visited doctors and had tests done, but everything came back normal, so the pain was considered a migraine or a virus.
Then, about a week later, during baseball practice, Hollis fell to the ground and began screaming in pain.
An MRI revealed a tumor on Hollis’ brain stem. He was diagnosed with diffuse intrinsic pontine glioma, or DIPG.
DIPG is an aggressive brain tumor that almost exclusively affects children. It is difficult to treat, has no cure and “interferes with all bodily functions, depriving a child of the ability to move, to communicate and even to eat and drink,” according to defeatdipg.org.
Hollis never reached that point. Instead, he lived happily, and just a couple of days after sledding in northern Arizona last winter with his parents and 10year-old brother, Rhett, he fought a brief battle with his symptoms and died on Jan. 2. He was 7 years old. Now, his parents are hoping to keep his memory alive and use their experience to help others affected by this fatal disease, planning fundraisers this spring to aid in research about his tumor and treatment in hopes of helping other kids like him.
The Dohertys made a Facebook page called “Hope for Hollis” the day after Hollis’ diagnosis. As the popularity of the page grew, athletes and celebrities, such as world-renowned golfer Jason Day and Olympic gold medalist Kerri Walsh Jennings, began taking photos of themselves with an H written on their hands, as a way to bring Hollis joy and spread the word about DIPG. Even comedian Will Ferrell sent Hollis a video.
“When he was alive, he would tell people, ‘I’m internet famous,’ ” Hollis’ father, Shane, said, chuckling. “Sometimes, there’s kids that just touch people, and ... Hollis was one of those.”
DIPG is so devastating, in part, because it is generally considered inoperable. It is risky to take a biopsy from the brain stem, and the tumor is spread out, intermingled with healthy cells. There is little treatment and no cure.
Hollis underwent radiation to shrink his tumor, allowing him to function better and more comfortably until it would inevitably grow back. After that, he and his family traveled to Germany one week every month for him to receive relatively non-invasive immunotherapy. But he never had surgery or chemotherapy, and never lived in the hospital.
Instead, Shane and Shawnee focused on giving Hollis the “most best days.”
“Some of the families who are going through this remove themselves from reality and start a bucket list, but for a 7-year-old, I don’t know what a bucket list would look like. For him, you know, we just had to decide to give him as normal a childhood as we could,” Shawnee said. “He was smart enough that we knew if we veered away from this sense of normalcy, that he would understand why.”
That meant going to school, riding the bus, eating lunch with his friends and doing homework, even while in Germany. Last Halloween, he walked his neighborhood dressed up as a blue ninja.
For Hollis, many of his best days were in sports. “Even though he was still battling this, he still was able to win a championship in basketball in his youth league; he was able to win a championship in his flag-football league,” Shane said.
“Two weeks before he passed away, he ran a full 20 minutes on the basketball court with his basketball team. “So he lived, and that’s what gave him most best days in the eyes of a 7-year-old child.”
Hollis threw the opening pitch at a Diamondbacks game, met the team and toured behind the scenes at the stadium. He dropped the puck at a Coyotes game and met Cardinals players. His bedroom is decked out in sports memorabilia made especially for him.
“I often think that if it wasn’t captured on the internet, his friends wouldn’t believe him at school the next day, ’cause, you know, some of what he got to experience was a once-in-a-lifetime thing,” Shawnee said.
Hollis didn’t have another headache until Dec. 28. A couple of days later, the family traveled to Flagstaff, where he went sledding and shot BB and pellet guns before suffering another one. He was admitted to the hospital on New Year’s Eve and, after a brief battle, died with his family at his side.
“I don’t know if he ever was afraid he was going to die,” Shawnee said. “I think he just was in the hospital and then, next minute, was in heaven.”
In the following weeks, Hollis’ classmates made a book for the family of their favorite memories of him. The Dohertys keep it in his room. The vast majority of the entries were about his love of reading, with one child even writing that he had “3,000 books.”
“My favorite memory about Hollis is that he was very funny,” one boy named Emilio wrote, along with a drawing of Hollis saying “sup dood” and laughing. “Hollis loved to read books. I will always remember Hollis’ smile and his hugs. Hollis was a really good friend.”
Moments after doctors told Shane and Shawnee about Hollis’ diagnosis last year, the couple called Dr. Michael Berens, a church friend who also is head of the Glioma Research Lab at the Translational Genomics Research Institute, or TGen, in Phoenix.
Berens is a brain-tumor scientist who, although a researcher and not a medical doctor, often counsels families through diagnosis, informing them of the newest and best in the science of the disease.
He was the one who encouraged the Dohertys to make decisions with the “most best days” philosophy and talked extensively with their doctor in Germany before giving his stamp of approval.
“When I would track with Hollis, I was thinking, ‘He’s having incredibly best days.’ It was startling to me, and that’s not typical for DIPG. Those kids tend to have very progressive erosion of the scale of their lives,” Berens said, pausing. “He had an amazing, brief, highquality life.”
He and his wife visited Shane and Shawnee in the hospital moments before Hollis died. When he passed, they called Berens to donate Hollis’ tumor to his lab.
After raising more than $123,000 on their GoFundMe page for Hollis’ treatment and covering all of their costs, Shane and Shawnee donated $30,000 to TGen so Berens and his team could study the genetics of Hollis’ tumor, compare it with others and see if the immunotherapy he received had any impact.
Government funding and budgeting leave little money for pediatric-cancer research and even less specifically for DIPG. Instead, much of the funding for DIPG research comes from families devastated by the disease.
“It’s families like us that are just pissed off, and their kids are dead, that are bringing this change,” Shawnee said. “Like with TGen, we’re trying to move the needle. That’s it. It’s taking the families who are becoming advocates to say, ‘No more.’ ”
Little progress has been made against the disease in the past 40 years. The Dohertys are hoping to change that. They’re currently working to raise $200,000 for a second phase of research to begin later this year.
The Dohertys have a few fundraisers planned for this spring and will publicize them on their Facebook page, “Hope Through Hollis.”
And anyone can donate to the Hope Through Hollis Fund at TGen directly at tgen.org/hollis.