Texas Children’s patient Olivia channels hope, love of golf in HLH, lymphoma battle

It started with a phone call last October. A phone call from a mother who was fighting to save her child’s life.

Dena Gravestock’s daughter Olivia had been diagnosed with hemophagocytic lymphohistiocytosis (HLH), a rare blood disorder that in her case was manifested in not one but two mutations in her immune system.

Instead of curing the mononucleosis that precipitated Olivia’s diagnosis of HLH, her immune system began creating chemicals that damaged her bone marrow, liver and spleen. Within three months, Olivia had developed a tumor in her abdomen, as well.

The diagnosis was diffuse large B-cell lymphoma. Cancer.

When her daughter, who was 17 years old at the time, didn’t respond to treatment, Dena started doing what any mother or father would have done. She booted up her computer and scoured Google and HLH support groups to find someone who could help Olivia.

“We realized that the cancer was winning,” Dena says. “My husband and I were just desperate.”

One name kept coming up: Dr. Ken McClain, the director of the Histiocytosis Program at Texas Children’s Cancer and Hematology Center, as well as a member of the facility’s leukemia and lymphoma programs.

And believe it or not, he answers his own phone.

“I don't believe that people should have to go through five layers of filters to get to a doctor,” he says. “People are pretty shocked.”

Count Dena among them. Flustered, she didn’t know what to say when she heard the voice of a man she had grown – through her research – to consider a rock star in his field.

“I started rambling,” Dena recalls. “And he just – I'll never forget – he said, 'I'll see her as soon as you can get here.' So, we packed the car. She couldn't fly. Her immune system was too weak, and we just packed the car and started driving.

“And he saw us 48 hours later from that phone call.”

The 17-hour drive from their home in rural Berthoud, Colorado – population of just over 11,000 – to the metropolis of Houston was as scary as it was long. The lymphoma was aggressive, and Olivia was extremely weak. Her immune system was virtually non-existent.

“It was very urgent that she got here, and we find the right way to help her,” McClain says.

For the last six months, Texas Children’s Hospital has essentially been home for Dena and Olivia. The healing treatment Olivia has received there, which included a bone marrow transplant, is among the many positive outcomes for patients at the nation’s No. 1 pediatric hospital, which is the title sponsor – and most importantly, the beneficiary – of this week’s PGA TOUR event, the Texas Children’s Houston Open.

“There's no doubt in my mind that we made the right call to come here,” Dena says. “It wasn't working. We were losing the battle. And we got here, and Dr. McClain, he knew what to do and he had confidence.

“I just have no words. They're incredible. The people care so much. The attendings, you actually get attendings that care and listen, and they talk to you. And the nurses, everybody down to literally the people that come empty the trash would call me 'mama.' They would say, 'Hey, mama, how's she feeling?' And they would ask about Olivia every day. They would pray for her.

“It's an amazing place.”

Considering Olivia was the No. 4-ranked female golfer in Colorado before she got sick makes the synergy this week even stronger. Depending on what her doctors say, she’s hoping to go to the Texas Children’s Houston Open on Sunday, masking up when necessary and trying to catch a glimpse of her favorite golfers, pros like Scottie Scheffler or Rory McIlroy, who she particularly likes for his work with the Make-A-Wish Foundation.

Olivia, who plans to be a bone marrow transplant nurse, tears up when she tells you what Texas Children’s Hospital has meant to her – particularly Dr. McClain, who she calls "St. McClain." Her mother says McClain and Dr. David Steffin, who oversaw Olivia’s bone marrow transplant, are “right up there with God, in my eyes.”

“Okay, to me, Dr. McClain, I mean, he saved my life,” Olivia says before her voice cracks. “I mean, he deserves everything for that for me. And Texas Children’s, I mean, I was a little shocked at first when we showed up, but I have just grown up with the hospital. This place is huge. It's a magic place. I'm going to cry.”

As it turns out, Olivia was born with HLH, although it didn’t reveal itself until after she came down with mono, feeling listless the day after she went to her junior prom. Normally, your immune system will shut down the Epstein-Barr Virus (EBV) but hers was out of control.

“It sort of percolated for a while,” McClain says. “And then she developed a true cancer. … So, she really had three different diagnoses and she was really sick from that lymphoma and not responding as well as she needed to be. And so, that’s when the family came here.”

Drs. McClain and Steffin determined the bone marrow transplant was necessary. She needed a new immune system to eradicate the HLH, not just put it in remission, as well as help her fight off the lymphoma, which had been slow to respond to the chemotherapy.

Olivia's bone marrow donor was a 25-year-old man from Germany. In fact, all three of her 10 matches were from Germany, where the registry is robust. Dena says she’s “humbled beyond words” that a complete stranger would give her daughter the gift of life. In a year, with his permission, the Gravestocks can contact the donor and thank him.

Before she could have the transplant, though, Olivia had to go through a conditioning process to get the body ready to accept the new marrow. Dena recalls “ridiculously high amounts” of chemotherapy Olivia endured, along with total body irradiation twice a day.

As Olivia tells it, they “essentially make you a newborn baby again.” The transplant erases any vaccinations and puts the patient at ground zero, devoid of its old immune system and its mutant cells. Dena calls the process a very “intense” experience.

“(It) gets rid of your hair, too, so then you’re just bald,” says Olivia, who has a photo showing her holding the bag containing her new bone marrow.

On Dec. 15, she had a clear PET scan and was admitted for the transplant 13 days later, a day after her 18th birthday. Olivia, whom her mother describes as “tough as nails,” received the new marrow on Jan. 4. The transplant process took several hours, and then the waiting began to make sure the new stem cells grew.

McClain says her prognosis is “very, very excellent.”

Olivia’s dad, Mark Gravestock, brought her sisters – 14-year-old Natalie and 16-year-old Audrey – to visit as often as possible, the group taking great pains to isolate to mitigate the risk of disease transmission. Olivia kept up with high school friends through texts, Snapchat and Instagram.

“The family's divided, but we're going to do whatever it takes to save her life,” Dena says.

With any luck, Dena and Olivia will be able to return to Colorado next month, which would be a year since her medical journey began. She’ll study remotely until the fall of 2025, when her recovery should be complete, and she can enroll at Regis University in Denver.

McClain isn’t surprised by Olivia’s decision to become a bone marrow transplant oncology nurse. Several of his former patients treated successfully for malignancies have done the same.

“It’s really heartwarming to say the least,” he says. “It's really very gratifying to know that she was inspired by her illness and her treatment to want to go forward and help other people.”

Olivia has missed golf, which she took up as a 14-year-old during the COVID-19 pandemic after accompanying her mother to the driving range. Turns out the former swimmer and volleyball player was a natural, shooting in the 70s by the time she was a junior in high school. Plus, she loves her coaches at Berthoud High School, David Hunn and John Perry.

But then Olivia, who used to volunteer at The Ascendant presented by Blue at TPC Colorado on the Korn Ferry Tour, got sick. Her last practice was the day of her prom.

“And then it all just kind of slipped away,” she says.

The hardest part was explaining what happened to the college coaches who still came calling.

“It was really awkward when I have to be like, 'I'm so sorry, I don't golf anymore,'" she recounts. "They're like, 'Why?' I'm like, 'I have been diagnosed with cancer.'”

Lately, though, Olivia’s thoughts have turned to golf again.

“She's been saying, 'Hey, I may go putt with grandpa this summer,'” Dena says. “And I love that golf is the kind of thing she can enjoy in any walk of life. You don't have to play at a high level and compete to enjoy it.

“I'm hopeful she can always love the game of golf.”

“I will,” Olivia says softly.