Each year, the St. Baldrick’s Foundation picks five kids to serve as Ambassadors. In this role, they represent the thousands of kids affected by childhood cancers and remind us of the importance of supporting childhood cancer research.
Take any group of kids and they’ll all have their own way of talking, their own opinions on books, movies, and video games, their own favorite foods.
But there is one thing the St. Baldrick’s 2019 Ambassadors have in common: childhood cancers. Beyond that, they share the support of loving families and a desire to inspire others to raise money for childhood cancer research.
Our 2019 Ambassadors, from left to right: Aiden, Arianna, Sullivan, Gabby, and Brooke.
Aiden represents the one in five children in the U.S. who do not survive cancer. Aiden bravely fought diffuse intrinsic pontine glioma (or DIPG) from August 2013 to January 2015.
DIPG is a type of brain tumor that emerges along the brainstem and makes it difficult for children to speak, eat, swallow, even breathe. Currently, no child survives DIPG, though researchers – like St. Baldrick’s Scholar Dr. Mark Souweidane – are working hard to change that.
Just five years old when he was diagnosed, Aiden underwent many rounds of radiation and chemotherapy that failed to stop the cancer’s progression. Despite this, Aiden’s personality never changed. “He had the best smile,” his parents recall. “A sweet, toothy smile that lit up his face.”
Even while receiving radiation, Aiden looked forward to doing school work, watching Star Wars and playing Legos with his brother, Evan, listening to the Wall-E soundtrack with Mom, and cheering on the Alabama Crimson Tide with his Dad, his hero and football buddy.
In late 2015, at just one year of age, Arianna’s parents learned she had juvenile myelomonocytic leukemia (or JMML). A blood cancer that typically affects the very young, the average age at diagnosis is just two years old.
A bone marrow transplant (BMT) is the only treatment option that offers the hope of a long-term cure for JMML. While Arianna was able to receive a BMT, and she’s now cancer-free, she developed Graft-Versus-Host Disease (GVHD) following the transplant.
GVHD happens when the donor cells attack the patient’s own cells, leading to a range of complications – in Arianna’s case, it meant problems impacting her stomach, skin, lungs, and liver. As a result, she’s a candidate for an intestinal and liver transplant as well as colon removal. Arianna is also non-verbal, has gross and fine motor delays, and her immune system is compromised – all late effects of her treatment.
But with her parents Matt and Katrina, this four-year old makes the most of each day. Arianna loves the sausage and vanilla milkshakes at the hospital cafeteria. Her two favorite holidays are Halloween and Christmas. She also loves watching movies (her favorites are Shrek 2 and Monsters, Inc.), playing games (like Hungry Hungry Hippos), and going to the library or playground.
“I always look for fun activities on the weekends,” her Mom, Katrina, said. “So Arianna can experience as many wonderful things as possible.”
Sullivan faced many difficult days of radiation and chemotherapy following his diagnosis at age 10 in 2016. Known as “Sully” to his parents, he fought medulloblastoma, a brain tumor that forms at the base of the skull.
Since then, Sullivan has undergone several surgeries, including one to remove a golf ball-sized tumor. While this helped in the fight against his cancer, it resulted in new problems in the form of posterior fossa syndrome, which can occur after children undergo brain surgery targeting the base of the skull. This meant Sully experienced mood swings, double vision, and an inability to stand or walk.
Nevertheless, Sullivan fought on. Even while undergoing high-dose chemotherapy and radiation, he went with his parents to the movies each week. He also kept up with school work and spent lots of time with his brothers, Cashel and Finn, playing with Legos.
Sullivan also recovered the ability to stand and walk. As the holidays approached in 2016, Sully was working with his physical therapist to try and stand. Grabbing the handles of his walker, Sullivan mustered the determination to stand up once again. “I pushed hard,” Sully said.
“That started us down the path of all of these other things actually being possible,” his Dad, Dan, noted. “So, we figured if he could stand, then he could take a step. If he could take a step, he could walk. If he could walk, he could jog. If he could jog, he could run and that’s really what’s happened. It’s been crazy.”
Sullivan survived his battle with childhood cancer and today shows no evidence of disease. But the treatments he received for medulloblastoma were especially invasive and will continue to impact his life for years to come.
Of the 2019 Ambassadors, 14-year-old Gabby was most recently diagnosed with childhood cancer. In her case, the diagnosis was osteosarcoma, the most common type of bone cancer in kids. Typically found in the bones of the legs or arms, osteosarcoma often spreads to other parts of the body, including major organs like the lungs. Most patients are between the ages of 10 and 20.
Diagnosed in November 2017 at age 13, Gabby says she misses school and longs to spend more time with her siblings and friends. Like many kids with osteosarcoma, her treatment has included extensive chemotherapy and surgery. On Dec. 16, 2017, she underwent limb salvage surgery on her left leg to remove a tumor, her knee and six inches of her femur.
Today, Gabby is cancer-free, but the fight continues. She has scans every three months to see if the cancer has returned. Thankfully, it has not. She’s working hard with her physical therapist to straighten her leg and ultimately, learn to walk again. She’s also dealing with hearing loss, one of the late effects of her chemotherapy treatment.
Gabby’s home-schooled right now but hopes to start her sophomore year at the same high school as her twin brother and older sister. Gabby loves swimming, camping, going to the beach, and visiting Disneyland. She hopes to one day, when she’s stronger, return to playing softball.
In reflecting on her fight with cancer, Gabby says the ordeal has given her a new perspective on life. “I was given this test because I can take it on and overcoming anything,” she said.
At 23 and in college, Brooke is the oldest of our 2019 Ambassadors. Not long before she turned 20, Brooke was diagnosed with high-risk acute myeloid leukemia, or AML. Following chemotherapy, Brooke underwent a bone marrow transplant. Her brother, Jack, was her donor. Shortly thereafter, Brooke was told she was cancer-free.
Unfortunately, Brooke, like Arianna, developed acute and chronic GVHD following her transplant. It was nothing less than a brutal experience: Brooke spent the next five months in the hospital, and for three of those months she was unable to consume anything by mouth. The GVHD Brooke was experiencing had targeted her gut, making it torturous for her to eat. Later, in an interview with St. Baldrick’s, Brooke referred to her GVHD pain as “indescribable”.
While her AML is in remission, Brooke is still struggling with GVHD. She’s immune-compromised, infertile and has permanent hair loss – all late effects from the cancer treatment. In late 2017, her kidneys began to fail, forcing her to take a second medical leave from college. Even several years after her BMT, Brooke continues to struggle with GVHD in her skin, eyes, mouth, and liver.
As you can imagine, she’s passionate about improving quality of life for cancer survivors. When it’s time to reflect on her experiences with pediatric cancer, Brooke turns to her blog, AMLetc.com. It’s where she recently expressed excitement over learning that her St. Baldrick’s Hero Fund, dedicated to raising money for research focused on young adult survivorship and chronic GVHD, had reached $10,000. “Thank you SO MUCH to everyone who donated,” Brooke declared. “Of course, this is only the beginning!”
While Brooke acknowledges that cancer has changed her, she’s definitely not the “girl with cancer.” The experience has given her a fearlessness about life and a fierce independence to do her own thing – both of which will serve her well as she pursues her passions and her dreams.
We’re excited to welcome our 2019 Ambassadors and look forward to learning more about them as the year develops. Stay tuned!
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