Max navigated type 1 diabetes and Burkitt lymphoma with help from his family and Stanford care team
This year, 13-year-old Max Cook is looking forward to something many kids take for granted: attending school for an entire year, start to finish, with no interruptions.
Between two major health events and the COVID-19 pandemic, it has been five years since Max has gotten to attend a whole year of school.
But now, thanks to his fighting spirit, supportive family, and Stanford care team, Max is feeling healthy and ready for a return to normalcy.
Type 1 diabetes diagnosis and a journey to Stanford
In 2019, Max was diagnosed with type 1 diabetes. He and his family were living in Phoenix, Arizona, and they decided to move to Northern California to find more comprehensive care for Max.
They landed at Stanford, where Max’s endocrinology team is headed by Luisa Valenzuela Riveros, MD, and division chief David Maahs, MD.
“I first met Max and his family when I was a fellow at Stanford, so I feel like I’ve kind of grown with him,” Dr. Valenzuela Riveros said. “His parents really did their research and identified the centers that are leading the way in terms of technology and clinical trials.”
Max’s mom, Paige, said the family appreciates the care coordination at Stanford.
“We’re very happy with the continuity of care here,” she said. “Every three months we get everything all knocked out at the same building—meeting with the certified diabetes educator, getting labs drawn, and getting time with Max’s doctor. Any questions we have are always thoroughly answered, and we always hear back quickly.”
Stomach pain and nausea lead to cancer diagnosis
In 2023, Max was running in a track meet and felt intense stomach pain, so he and his family went to the emergency department for help. His family initially thought the pain might have been from a new insulin pump and new insulin that Max was trying. It took several more visits to the ED—and weeks of stomach pain and nausea—for Max to be diagnosed with Burkitt lymphoma.
“With a symptom like stomach pain, it can be very difficult to identify the extremely rare kid who has a cancer diagnosis instead of something else,” said Lianna Marks, MD, Max’s primary pediatric oncologist at Stanford.
And Burkitt lymphoma is relatively rare even among the thankfully low rates of childhood cancer, with only about 100 cases diagnosed in the U.S. every year.
Fortunately for Max, Burkitt lymphoma is very treatable. Dr. Marks said more than 90% of kids diagnosed with Burkitt lymphoma are cured after their initial treatment. That treatment includes a drug called rituximab, which was developed at Stanford.
“It was really scary to hear the diagnosis, but also a relief that I finally knew what was going on,” Max said.
Unfortunately, treatment is very intense, with four cycles of chemotherapy. Max stayed in the hospital for about a week after each cycle, and even after going home, he frequently developed fevers and low white blood cell counts that landed him back in the hospital.
Max said his time in the hospital was a blur of difficult procedures, including a port placement and nine lumbar punctures (also known as spinal taps), which he eventually learned to handle with only local anesthesia.
He spent a lot of time in his hospital bed and was thankful for the Lego sets delivered by friends and family to keep his mind off his cancer battle. He also spent time talking to his friends and using virtual reality–assisted exercises to help keep his muscles strong. Paige and Zac, Max’s dad, took advantage of VR mediation tools to help reduce their anxiety when Max went in for lumbar punctures.
The family remembers relying on the Child Life team to help them navigate the highs and lows of treatment.
“It seemed like when we were going through some emotional moment, Child Life would come in and give us something happy to think about,” Paige said.
Nights were long, and the constant beeping from Max’s monitors made it hard to sleep. Max and his mom remember taking quiet early-morning walks through the hospital on the weekends.
Coordinating diabetes and cancer care
Max’s type 1 diabetes added another variable to an already complex treatment plan. Treatment for Burkitt lymphoma requires steroids, which often raise blood sugar. When Max had certain imaging tests, he had to remove his glucose sensor. And he couldn’t eat before procedures like lumbar punctures. Paige and Zac had to record Max’s blood sugar, his insulin needs, and the carbs he ingested every hour.
“We bonded with many of the nurses and the staff, especially because Zac and I also function like home health nurses with the diabetes care that we provide to Max,” Paige said. “The staff on the 5th floor was incredible and great with kids.”
Dr. Marks credits Max’s family with playing a huge role in his recovery.
“Max is such a lovely person, and his family is so wonderful and supportive. They asked great questions and really wanted to do everything possible to help Max through this,” she said.
Dr. Valenzuela Riveros said that kids like Max are helping to push forward badly needed changes to how patients manage their diabetes when they are in the hospital.
“Many patients outside of the hospital use a lot of new technology to manage their diabetes,” she said. “But when these patients go into pretty much any hospital in the U.S., suddenly they’re traveling back in time 10 to 20 years because they can’t use the same technology. It’s understandably frustrating for families. Stories like Max’s can help us move the technology forward so we can use it for patients in the hospital.”
Dr. Valenzuela Riveros said Stanford is currently studying how to bring the same technology patients use at home to patients in the hospital.
Running toward an exciting future
After Max’s four rounds of chemotherapy were complete and tests showed that he was in remission, he got to ring the bell that symbolizes the end of treatment. “It felt great,” he said.
In the year since, Max said, he’s been feeling great and enjoying his favorite hobbies, including spending time with friends, crafting, playing video games, making music, playing pickleball, and rowing.
“We get excited about our follow-up visits to the Bass Center,” Paige said. “It’s fun to go back and see familiar faces, and to see the staff excited to see Max. We see other patients that we recognize, and seeing them makes my heart explode—to see them succeeding, making it through, their parents are smiling, it’s kind of otherworldly. It’s not easy to go back to normal when you have something like this trauma, so we want to cheer for the other kids going through this.”
Paige, Zac, Max, and his sister, Bel, got to cheer on many patients at the annual Summer Scamper race to raise money for Lucile Packard Children’s Hospital Stanford.
“The first year that we heard about Summer Scamper, Max was in the hospital, so Zac, Bel, and I decided to run it,” Paige said. “We stood outside the hospital and waved up to Max in his room in our run T-shirts.”
The next year, Max was healthy enough to run the race himself. He and his family organized a large team of supporters, Team Mighty Max, to help honor Max and other patients.
“It was really special to run it with Max,” Paige said.
Max said he is interested in science and wants to be a biologist when he grows up.
“It’s great to see Max already back in school, back to feeling good and doing what he wants to do, and it was super-exciting to see him running the Summer Scamper,” Dr. Marks said. “I’m excited to see where he goes from here.”
Dr. Valenzuela Riveros is equally hopeful about Max’s future.
“Max is an example for so many of our patients of being resilient and being a true little warrior,” she said. “He’s an example to many families who have a child recently diagnosed with type 1 diabetes of how healthy you can be. He’s a sharp kid, and he has an amazing family. I know they’re going to support him and help him continue to thrive.”
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