On June 13, 2020, Summer Stumpf’s 12-year-old son, Grayson, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare, cancerous brain tumor.
Stumpf describes Grayson, who she calls Gray, as the “sweetest, kindest soul you ever met. Everyone who met him said he was a light.”
He loved soccer, fishing, cooking and knew the statistics of every Seahawks player. Stumpf said her son was highly competitive, but very humble. His family called him Ironman, because although he was small, he was tough.
“He fought for 377 days and never lost his strength, his kindness, or his ability to care for others,” Stumpf said. “He went through so many treatments with a smile on his face. He had the ability to care about others even when he was not his best.”
In honor of Grayson’s legacy, Stumpf started Live Gray’s Way, a charity that raises funds for pediatric cancer research. On Nov. 4 — Grayson’s birthday — the charity launched the Give Gray’s Way fundraiser.
The fundraiser is selling holiday ornaments, ranging in price from $25 to $125, to decorate the Totem Garden at the annual holiday tree lighting in Fall City. The event will take place Dec. 4, between 3-7 p.m., and will also include food trucks and a raffle.
Half of donations raised through the ornaments, food trucks and raffle will go to DIPG research. The other half will go to Angelina and Scott Wainhouse, a Snoqualmie family whose 13-year-old son, Zander, was diagnosed with medulloblastoma, an aggressive brain cancer, on Dec. 21, 2020. Both Zander and Grayson went to Chief Kanim Middle School.
Angelina and Scott said their son loves to play soccer, wrestle and mountain bike. They said he has a funny dry sense of humor and is a bit of a prankster. They added that he’s a math wiz and speaks both English and French and has been learning Spanish during the pandemic.
“He can come up with some really creative things and he loves to be active anyway he can,” Scott said. Angelina added: “He has approached this illness with humor, strength, determination and perseverance.”
The Wainhouses also described their son as an adventurer and thrill-seeker who wants to go sky-diving and jet-skiing. They are hopeful their son will be well enough in the coming months to fufill his wish of traveling around the country.
Following his initial diagnosis in December, Zander’s tumor was removed surgically. He then went through proton therapy and 30 doses of radiation treatment over a six-week span. During those six weeks, the Wainhouses traveled to North Seattle every weekday. They also went to Seattle Children’s Hospital every Wednesday to get weekly chemotherapy.
Zander underwent six months of chemotherapy, which ended in August, with all other treatment ending in September. However, an end of treatment MRI found new tumor growth. Three weeks later, the tumor had almost doubled in size.
Initially, Angelina had to drop to 20 hours a week at her job because her medical leave was exhausted. When the new tumor growth was discovered, she left her job.
“It’s a challenge even though we’ve had medical coverage,” Scott said. “We continue to research, hope and pray for something that will provide the solution, but there’s not a clear answer.”
Angelina added that there needs to be more funding directed toward pediatric cancer.
The federal government invests billions in cancer research annually, but only 4% of that funding goes to pediatric research. Cancer is the number one cause of death in the U.S. among those 19 and under. Every day, 43 children in the U.S. are expected to be diagnosed.
Research into pediatric cancers is often dependent upon private donation. Stumpf said another family who lost a child to cancer raised $300,000 for pediatric brain cancer, and they are using the money to support a boy from Monroe, who was diagnosed with DIPG.
“It’s allowing him to do the Car T-Cell therapy that we weren’t fortunate enough to get, because it’s a long list and super expensive,” she said.
Throughout their trials, Stumpf and the Wainhouses said they’ve been thankful for the community support. A GoFundMe for Zander has already raised over $32,000. Scott said dozens of friends and family, including 30 members of Angelina’s family in South Africa and Zander’s twin brother Matthew, have shaved their heads in support of Zander.
“People have been overwhelmingly kind and generous to our family and it’s been amazing to see how the community comes together with families going through this,” Angelina said.
Since starting her foundation, Stumpf said she has met many families who have lost a child to cancer, adding it is important to keep investing in research.
“Starting the foundation was the best thing I could have done. Gray deserves that and all kids that go through this deserve that,” she said. “To hear people still say [Grayson’s] name, it’s really important. It’s important to me to help people through this. If we raise enough funds together, maybe somebody else’s family doesn’t have to lose a child.”
To buy an ornament, Venmo Stumpf at: Summer-Stumpf.
Zander’s GoFundMe: bit.ly/3H7Ah2s