Shawnee and Shane Doherty of Phoenix, who lost their 7-year-old son to a form of brain cancer, talk about their boy, Hollis, his zest for life, and the need for more research.
Hollis Doherty was a star elementary-school 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 Doherty.
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,” Doherty 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, on March 29, 2016.
DIPG is a 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 days after sledding in northern Arizona last winter with his parents and 10-year-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 research his tumor and his treatment in hopes of helping other kids like him.
Living for the ‘most best days’
The Dohertys’ home in the FQ Story Historic District in central Phoenix has a University of Arizona flag — the place where Shane and Shawnee met and fell in love — hanging near the entrance. On a recent March afternoon, Rhett kicked off his fourth-grade spring break by laughing at YouTube videos in his room.
The house is decked out in green, with four-leaf clovers and shamrocks everywhere. The Dohertys are Irish and Scottish, so when they made a Facebook page called Hope for Hollis the day after his diagnosis, they first used a green heart as a logo, and later a four-leaf clover with hearts in it.
As the popularity of Hollis’ Facebook 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 for Hollis written on their hand as a way to bring Hollis joy and spread the word about DIPG.
Even comedian Will Ferrell sent Hollis a video, in which he said: “(I) put on a fancy tuxedo for you, because I know you’re a very fancy person. You’ve been rumored to wear a lot of tuxedos all the time, and you have very polite manners and wonderful etiquette at the dinner table.”
“When he was alive he would tell people, ‘I’m internet famous,’ ” 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 isn’t one solid mass but instead 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 an Arizona Diamondbacks game, met the team and toured behind the scenes at the stadium. He dropped the puck at an Arizona Coyotes game and met Arizona Cardinals players.
Hollis’ bedroom is decked out in sports memorabilia made especially for him: a framed Cardinals jersey with his name on it and a photo of the family on the field, a framed green Diamondbacks jersey that says “Hope 4 Hollis” with an engraved plate that says “Hollis, welcome to the team!”
“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 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.”
About 3,000 people packed Living Streams Church for Hollis’ memorial service in January, and another 1,500 watch the livestream on the church’s website.
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 the 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.”
Searching for treatment and a cure
Moments after doctors told Shane and Shawnee about Hollis’ diagnosis last year, they 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, high-quality 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.
“It was actually one of the few lab meetings we’ve had where more than a few people were in tears,” Berens said.
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 that Berens and his team could study the genetics of Hollis’ tumor, compare it to others and see if the immunotherapy he received had any impact.
“I’m looking to try to help them on their journey of grief, and that typically is not what a research lab is going to do. But as a friend, I have an opportunity” to help them understand what happened and to advance the body of knowledge on the disease, Berens said.
Government funding and budgeting leaves 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.’ “
Astronaut Neil Armstrong lost his daughter to DIPG, and former Chicago Bears running back Adrian Peterson lost his son. One of the largest DIPG foundations in the country is the ChadTough Foundation on behalf of Chad Carr, the grandson of former University of Michigan football coach Lloyd Carr.
Yet, little progress has been made against the disease in the last 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.
Instead of joining an existing trial, they want to try something innovative, like focusing on the immune-system therapy Hollis received in Germany that may have helped stave off his symptoms.
Berens intends to assemble a team of DIPG researchers and clinicians to design a clinical trial in which each patient with DIPG will receive personalized therapies designed to help their own bodies fight the tumor, in hopes of giving them the “most best days.”
How to help the Dohertys and DIPG research
The Dohertys have a few fundraisers planned for this spring, which are noted on their Facebook page.
On Saturday, the Diamondbacks are hosting Hope Through Hollis Night during their game against the Colorado Rockies. For every ticket sold through groupmatics.events/event/hollis, the team will donate $10 to the Hope Through Hollis Fund at TGen.
Anyone who buys the fundraising tickets can participate in a pre-game parade on the field by lining up outside Gate J near Section 110 by 3:45 p.m. The Dohertys will be part of the parade and welcome anyone to walk with them, especially kids, Shawnee said.
Those who want to support the cause but can’t attend the Saturday game can buy a discounted $25 ticket voucher good for any home game after May 1.
“The Dohertys hold a special place in our hearts, and they have become a part of our baseball family that is closer than any other,” Diamondbacks President and CEO Derrick Hall said.
May 7 is TGen’s seventh annual Cycle for the Cure, a one-day fundraiser consisting of indoor cycling and yoga classes at five locations in Phoenix, Chandler and Scottsdale. There are still spots open on the Hope For Hollis cycling team, or people can sponsor the riders, including Shawnee. Learn more at tgenfoundation.org/cycle.
The last fundraiser on their schedule so far is the Hope Through Hollis Golf Tournament and Family Event on May 20 at Longbow Golf Course in Mesa. Cost for a single golfer is $150, and they are still seeking sponsors for the event. Find more information on the Facebook page or at hth.accelraising.com.
Anyone also can donate to the Hope Through Hollis Fund at TGen directly at tgen.org/hollis.
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