EVERETT — An owie in her head.
That’s how 5-year-old Kaya Sanders describes it.
The doctors use a different term: diffuse intrinsic pontine glioma, DIPG.
It’s a parent’s worst fear. Kaya has an incurable brain tumor.
“They told us the prognosis was three months to a year,” said her mom Jasmine Kaiser. “Life was turned upside down.”
That was 17 months ago.
To spend a few hours on a Wednesday evening in mid-November with Kaya is to see a curly-haired girl in a bright blue Superman T-shirt bounce around the living room, playing with toys and throwing her head back in laughter.
“There are days I look at Kaya and don’t see anything wrong. I have days that I think the doctors are wrong,” Jasmine said.
These moments grow fewer.
Her lifeline is what Kaya calls her superhero port. It’s an implanted device under her skin where she gets superhero medicine to fight off the bad guys.
Potent IV drugs and radiation treatments to shrink the tumor and kill cancer cells have run their course. The tumor is on her brain stem and can’t be removed.
The bad guys won’t budge. The owie in her head will get worse.
Kaya is the youngest sibling. She has a sister and three brothers. Tomboyish but with a girly flair, she is tough in her own right.
“I’m strong,” Kaya said. She flexes her muscles, then resumes building a robot with Duplo blocks.
“She hasn’t let anything stop her,” Jasmine said. “Even the day she got her port surgically implanted we came home and I told her to rest and she said, ‘Nope, I want to play with my friends.’ She hasn’t skipped a beat.”
Kaya has taken it better than her mom.
In addition to being a single mother, working full time and taking Kaya to medical visits, Jasmine is planning her daughter’s funeral.
“It is the worst feeling in the world, that you can’t fix your kid,” she said. “I am trying to function and in the back of my mind that is always what I’m thinking about. I feel guilty for being at work 40 hours a week that I’ll never get back and I am already on borrowed time.”
Providence Hospice and Home Care of Snohomish County is an intricate part of her support system during this most vulnerable time. It has been around for 40 years with a full range of medical professionals as well as 360 volunteers.
The survival rate for DIPG is 10 percent for two years. For five years, it’s 1 percent.
“Most children die within the first nine months after diagnosis,” said registered nurse Pam Crayne-Smith. “It is a fatal tumor.”
The hospice nurse makes weekly house calls to monitor Kaya’s health and is only a text away when Jasmine needs her.
“I rely on her more than she knows. She’s my second set of eyes on Kaya,” she said.
A pediatric bereavement specialist has also come to the home, along with weekly visits by a social worker.
“They are part of the family,” said Jasmine, who sees an Everett Clinic counselor.
Kaya now attends kindergarten half days because all day was too taxing. She starts her day with recess. She rides the bus home from Emerson Elementary with her brother Jamison, 10.
Jasmine’s shift as a scheduler begins at 6 a.m. at a Shoreline electrical company, except the one day she works from home. Her son, Chancellor, 18, stays with Kaya the two days a week he doesn’t have college classes and Kaya’s grandfather helps out the other two days. Her oldest son, Xavier, 19, attends Washington State University. An older sister, Saudia, lives in King County.
“I have to let her be a 5-year-old and go to school and go outside and play and be as normal as possible,” Jasmine said. “I hang by a string everyday.”
Crayne-Smith’s weekly visits with Kaya are part of the hospice pediatric carousel program.
They teamed up a year ago.
“The first time I came to the house and she answered the door I didn’t think she was the patient. I was, ‘Where’s Kaya?’ She said, ‘Here,’” Crayne-Smith said.
“She is a little star. She sparkles, she’s bright. She is happy, loving. She loves life.”
Kaya agrees. “I love Hot Wheels. I love everything,” she said.
Crayne-Smith, a hospice nurse for 27 years, has cared for other children with DIPG and is upfront with Jasmine about what to expect.
“She has outlived what most typical kids do with that diagnosis,” Crayne-Smith said. “The goal is to have a good death for that child.”
A good death.
No feeding tube. No life support. As painless as possible.
“I want her to be comfortable, and be surrounded by everybody she loves,” Jasmine said.
When the end is near, there is a plan in place.
“We honor the family’s wishes,” Crayne-Smith said. “What would they like to have happen? They are losing so much control of everything. If we can give them control over the setting, who’s present, what to expect, it makes it more survivable for the family.”
What to expect: The brain stem controls breathing, heart rate and nerves and muscles that help us see, hear, walk, talk and eat.
It torments Jasmine to think about.
“She is such a free spirit. In the final weeks for so many of these kids they can’t walk or talk anymore, yet cognitively they are totally aware and that just drives me nuts because she is absolutely going to hate that. It is going to be so frustrating,” Jasmine said.
“I don’t want her to be scared.”
Yet Jasmine is terrified.
“When that day comes I worry that I am not going to be enough to comfort her, that I am going to be such a lunatic that I won’t be there for my other kids.”
Crayne-Smith helps her with the here and now.
“It is nice to have that other person. I don’t have to explain anything. She knows Kaya,” Jasmine said.
Kaya considers the visiting nurse a playdate. “She looks at Pam as her buddy,” her mom said. “She has her Pam.”
For Kaya, every day is new. For her mom, the days are shadowed with “This could be the last one.”
The family went on a Make-A-Wish trip to Disney World last year.
Recently a girl they met at radiation treatment died. She was diagnosed with the same cancer around the same time as Kaya.
Jasmine bursts into tears talking about it. Kaya puts down her Duplo blocks and comes over to offer a hug.
“I’m OK,” Jasmine assures her.
“Then why are you crying?” Kaya asks.
Kaya has seen her mom cry often.
“I have never had that conversation with her about her prognosis,” Jasmine said. “She knows more than she says. We talk about the more general stuff.”
Kaya knows that while she is like all the other neighborhood kids, she is also different. Other kids don’t have Pams coming to the house. Or superhero ports.
More often, though, Kaya talks about Spider-Man and marrying the boy next door.
Just like before.
“She doesn’t think she is dying,” Crayne-Smith said. “But she will be able to comprehend that. She is a pretty intuitive kid.”
Kaya was diagnosed in July 2017. At a wedding in Arizona someone told Jasmine her then-4-year-old daughter’s gait was off and that she should get it checked out. Back home, she took Kaya to a pediatrician, who referred her to Seattle Children’s Hospital.
DIPG affects coordination and vision, but the signs weren’t obvious.
“I never noticed that her walk was off. That’s just how she walked,” Jasmine said. “She used to squint when she was pointing to stuff far away. She’d tilt her head to the left. We thought she was posing, trying to be cute for a picture, but she had double vision so she was trying to correct it.”
DIPG is the leading cause of death from pediatric brain tumors, which are the top cancer-related death in children. About 300 children in the U.S. are diagnosed with DIPG annually.
“It’s not a type of cancer that has gotten a lot of press and so it doesn’t have the funding well-known cancers have,” Crayne-Smith said.
Jasmine has become an advocate for raising more awareness about DIPG. For now, her energy is focused on her daughter.
“You don’t ever want to give up hope, because you feel like you’re giving up on them,” Jasmine said, “but you come to terms with it.”
Forms in Kaya’s school file direct where to transport her and not to take life-extending measures.
Jasmine has selected a funeral home for final arrangements.
Kaya’s corneas will go to a donor and her brain to science. Her body will be cremated.
Kaya once told her mom she doesn’t want to be buried because “she doesn’t want dirt in her nose.” That came up in casual conversation as they passed the cemetery.
Jasmine has a kit to put her daughter’s thumbprint in clay, to preserve the image for necklaces for family members, but she isn’t ready to take that step. Not yet.
She plans to have a celebration of life for Kaya.
“I don’t think her personality reflects a funeral that is sad. I think she would want more of a party.”
As they have been since the fateful prognosis, nurse Pam and her hospice family will be there. By her side.
How to help Kaya Sanders and stay up to date
Since this story was first published, a Kaya and Family fund has been set up on the fundraising website GoFundMe. Money raised will help with general expenses to allow Jasmine to take the time off for Kaya’s care needs. Donations may be made at www.gofundme.com/kaya-family.
Snohomish County Gives 2018: It’s easy to make a difference
The gift of time and money to places such as Providence Hospice and Home Care is one of the many ways to help your community.
Inside today’s Herald Snohomish County Gives 2018 special section are a collection of stories about places and people who could use a hand.
Read about Safe Harbor Clinic in Stanwood, the only free medical clinic between Seattle and Canada. The Snohomish County Music Project is a therapeutic music group that meets weekly in Everett. Eagle Wings disAbility Ministries in Marysville organizes gatherings in Snohomish County for adults with disabilities. InspireHer is a program through the Boys & Girls Clubs of Snohomish County where adult mentors empower young women.
These nonprofit groups and others provide services to children, families, seniors, students and service members — and in turn they depend on you.
This holiday season, consider donating or becoming a volunteer.
How to help
Providence Hospice and Home Care was started 40 years ago as Hospice of Snohomish County by Sister Georgette Bayless, a Sister of Providence.
In addition to staff, volunteers assist the patient and family in many ways. Volunteers are needed to make calls, share a story, record a life story, play cribbage or cards, wash a load of clothes, push a wheelchair, serve a meal.
There are about 360 volunteers and more are needed.
Providence Hospice and Home Care offers four major programs for volunteers:
Hospice: Volunteers assist with respite care, companionship, emotional support, light housekeeping, transportation, licensed massage therapists, fundraising, record life reviews, and assist with clerical work in the bereavement office.
Home Care: Assist with respite care, light household tasks, transportation and companionship.
Pediatric Carousel: Assist with emotional support to parents and children, running errands, reading or fundraising. Volunteer for pediatric bereavement programs such as Standing Together, a monthly educational and support group, or at Camp Erin, a grief camp for ages 6-17. Volunteers receive training and ongoing education.
Knitters and crocheters: Make lap robes, prayer shawls, scarfs and hats for hospice patients. Help with “Erin’s Bears” creating hats and sweaters for the comfort bears at Camp Erin. Contact Great Yarns at 425-252-8155 for patterns and how to help. To volunteer, call 425-261-4815. More at www.providence.org/phhc