After the chemotherapy, Stephanie Jones no longer has her long blond hair, but she smiles at her children from under a blue knit cap as her two daughters play in the living room dressed as Disney princesses and her 1-year-old son watches “Phineus and Ferb.”
Stephanie and her husband, Tyler, sit at the kitchen table as Tyler says, with heavy sarcasm, that Stephanie “basically won the cancer lottery.”
“Why couldn’t I win the actual lottery?” Stephanie says.
Although it is extremely rare for women in their 20s, in September 29-year-old Stephanie was diagnosed with an aggressive form of leukemia for which there is no cure. The average life expectancy for a person with this type of cancer, known as Acute Myeloid Leukemia (AML-FTL3), is about seven months.
Hope Chapel will be hosting a bone marrow registry in honor of the Jones family Sunday and next weekend. Family friend Stacey Kindt, who is organizing the event, said the registry is not just to find a bone-marrow match for Stephanie, but that the registry provides matches for anyone with cancer who is in need of a bone-marrow transplant.
The registry will take place at Hope Chapel, located at 2420 Pacific Coast Highway in Hermosa Beach, this Sunday, Feb. 3, from 7:30 a.m. to 1:30 p.m.; Friday, Feb. 8, from 5:30 to 8:30 p.m.; and Saturday, Feb. 9, from 6:30 to 9:30 p.m. Interested persons must be between the ages of 18 and 44. Potential donors must fill out forms and have a cheek swab done to register.
Although the cancer is currently incurable, Kindt said a successful bone-marrow transplant gives Stephanie the best possible chance for “prolonging her survivability.” Stephanie recently completed her third round of intense chemotherapy and is due for a bone-marrow transplant when a donor match is found.
Kindt is also raising funds for the Jones family through the website, giveforward.org/jonesfamilyjan. Her goal is to raise $4,000 a month for the family so that Tyler can spend more time with his wife and their children. Kindt said the website has met its goal for the past three months.
“I feel that Tyler and Stephanie are one of our own, born and raised here in the South Bay,” Kindt said. “They have many connections with many people throughout our community. I want people to know what is going on with them so that the community at large can show support for them.”
Tyler, 30, who grew up in Torrance, and Stephanie, who grew up in Rancho Palos Verdes, remained in the South Bay after marriage. They now reside in Torrance with their three children, 7-year-old Izzy, 3-year-old Harley and 1-year-old Locke. Tyler works for a branch of Harbor Distributing in Gardena and Stephanie homeschools their children.
“They are the quirkiest, funnest, most grounded young people that I know, and they have remained this throughout their ordeal,” Kindt said.
“My heart is breaking for this young family and I want to do all I can to support them,” she said.
The couple first met 10 years ago when they attended El Camino College together — they’ve even made a video re-enacting their courtship with rubber duckies. Stephanie said she disliked Tyler at first, and they reconnected through Myspace years later — a dynamic that she said is played out dramatically in their rubber duckie enactment.
“I still have those duckies,” Tyler said.
Last fall Stephanie suddenly began feeling extremely ill. Because the family did not have health insurance, during her first visit to the doctor she was not given a blood test and was diagnosed with mononucleosis. Stephanie said she was skeptical of the diagnosis from the beginning, due to her extreme symptoms.
“I was like, ‘This is not mono,’” she said. “No way.”
She returned to her doctor for a blood test and was diagnosed with leukemia on the anniversary of her marriage. She returned home from her first extended hospital stay on her husband’s 30th birthday.
“We know how to party,” Stephanie said sarcastically.
When she was first diagnosed she said she wasn’t too worried about her cancer because her grandmother has survived living with leukemia for more than 14 years. But it didn’t take long for Stephanie to learn that she had a different, incurable form of leukemia.
“There are over a dozen kinds of leukemia,” Stephanie said. “With some you can live for 20 or 30 years with it, and for some people it’s a few weeks.”
She said family friends she knows through homeschooling have rallied around her family, providing dinner for them every night for months and offering support. Stephanie’s mother is currently homeschooling her children based on Stephanie’s curriculum.
Kindt said that the sudden rush of attention may be unusual for Stephanie, who is known for being independent and rarely tries to draw attention to herself.
“If there’s one thing I’ve learned from this situation, it’s to accept help,” Stephanie said. “I’ve never been the type of person who liked asking for help.”
With bills to pay, Tyler began his work schedule again for the first time last week after an extended leave of absence. The couple said it has been hard to be away from each other, but that at times they have no choice.
“People say you’ve got to just trust, but we have to be wise too,” Stephanie said. “You can’t just trust that rent is going to be paid every week. So it’s been really rough.”
“I just want some huge gift to come from the sky so they can just be with each other and devote their time to what is important,” Kindt said.
“I wish the world ran the way that we want it to,” she said to the couple. “Your guys’ needs are so relatively small compared to other people’s.”
As for the registry, Stephanie said she hopes a wide variety of potential donors get involved because the closer the DNA match, the better the chance cancer patients have at a successful bone marrow transplant. Stephanie also said the event is not only for her benefit, and that she especially encourages people of different ethnicities to register as donors because she knows from her own experience in the hospital with fellow cancer patients that those of minority ethnicities often have the hardest time finding a match.
“Right now it’s most important for people with different ethnicities to get in there,” Stephanie said.
In what Tyler calls their “pre-hospital days” the family enjoyed going to movies, annual trips to Sea World, playing board games and video games with friends, and taking their children to Disneyland.
Stephanie, who studied costume making at the Fashion Institute of Design and Marketing, was also known for making her children elaborate Halloween costumes. Tyler said she made an especially popular costume of Queen Amidala from the “Star Wars” franchise that she sold around Halloween during the years the “Star Wars” prequels were released in theaters.
Stephanie said she was disappointed she was unable to make her children Halloween costumes last year because of her condition, but that she learned her previous work had not gone unappreciated. As her daughters chased each other around the living room, Stephanie motioned toward their store-bought princess gowns and she said one of her daughters told her that these weren’t as good as their homemade costumes.
“She said, ‘Mom, you make way better costumes. These are terrible,’” Stephanie said. She smiled and added, “Mommy: One. Disney: Zero.”
To help the Jones family, go to giveforward.org/jonesfamilyjan