Jasmine, now at home full-time to take care of Kaya, rocks her daughter as they sit on their living room couch while Kaya’s brother, Jameson, sleeps in the background Jan. 31. (Olivia Vanni / The Herald)

Jasmine, now at home full-time to take care of Kaya, rocks her daughter as they sit on their living room couch while Kaya’s brother, Jameson, sleeps in the background Jan. 31. (Olivia Vanni / The Herald)

Kaya’s spirit: A child embraced life, even in the final stage

The 5-year-old girl had a knack for making others laugh in the face of an inoperable brain tumor.

EVERETT — A few sporadic thumps can be heard as Kaya Sanders races from the kitchen to the living room, using the wall to brace herself as she runs, laughing as she goes.

It is November, only a few weeks until Thanksgiving.

More than a year after her diagnosis, Kaya has outlived the 3 to 12 months doctors gave her.

At first glance you’d never know that Kaya is sick. She presents as an energetic 5-year-old. Everyone in the room smiles as they watch this little fireball with bouncing brown curls.

As Kaya’s hospice nurse Pam Crayne-Smith tries to wrangle her in for her weekly vitals check up, Jasmine Kaiser describes her daughter’s diagnosis. Kaya has DIPG (diffuse intrinsic pontine glioma), an inoperable brain stem tumor that affects basic motor skills and essential bodily functions, including heart beat, coordination and vision. Jasmine’s smile fades and a tear slips down her cheek.

Kaya stands up, runs across the room and embraces her mother. She has a remarkable intuition for one so young. She instinctively reads the room and knows what to do next.

Kaya starts to shake her bottom, filling the room with laughter.

While Kaya’s medical understanding is she has an “owie” inside her head, she’s clearly aware that her condition is serious and knows how profoundly it affects those around her.

Hot Wheels and hope

It’s a little before 7 on an overcast December morning when Jasmine lifts a still sleepy Kaya into the car for her appointment at Seattle Children’s Hospital. I hop in the car to tag along to the appointment. She takes the backroads to avoid I-5 traffic, stopping on the way to pick up a family friend for moral support. There is a feeling of nervous energy in the car. This MRI appointment is the first since Kaya finished her radiation.

Kaya’s brother, Chance, helps zip up her jacket as they get ready to leave for school Nov. 29, 2018. Jasmine works full time and cannot always take Kaya to school so her brother helps when he can. (Olivia Vanni / The Herald)

Kaya’s brother, Chance, helps zip up her jacket as they get ready to leave for school Nov. 29, 2018. Jasmine works full time and cannot always take Kaya to school so her brother helps when he can. (Olivia Vanni / The Herald)

They make their way to the radiology department, a place they’ve been many times before. Jasmine is anxious. The wait is unusually long.

A nurse comes in briefly to give Kaya her anesthesia facemask, asking what stickers she would like to decorate it with.

Her answer with zero hesitation, “I want Hot Wheels!”

Perhaps an unusual answer from a young girl, but not from Kaya whose obsession with Hot Wheels and anything superhero always seems to be top of mind.

Kaya uses an otoscope on her her nurse Susan Holtzclaw during her appointment to go over scan results and to evaluate her symptoms at Seattle Children’s Hospital on Dec. 12, 2018. (Olivia Vanni / The Herald)

Kaya uses an otoscope on her her nurse Susan Holtzclaw during her appointment to go over scan results and to evaluate her symptoms at Seattle Children’s Hospital on Dec. 12, 2018. (Olivia Vanni / The Herald)

As the nurse preps her for anesthesia, Kaya makes sure to get in one last shake of her bottom as everyone laughs.

The next hour is kept busy with bathroom breaks, a coffee run and small talk before Kaya is rolled back into the room.

Jasmine holds her daughter’s hand and strokes her hair as she slowly wakes up from anesthesia. It’s become their routine, comforting for mother and child.

Jasmine seems relaxed despite not having any results back. She’ll have to meet with the brain tumor team one floor up.

Once in the exam room at the hematology-oncology clinic, Kaya is quiet, still foggy from the anesthesia.

Susan Holtzclaw, ARNP, explains Kaya’s MRI brain scans to Jasmine at Seattle Children’s Hospital on Dec. 12, 2018. The scans show no measurable growth of Kaya’s brain tumor since she finished her radiation. (Olivia Vanni / The Herald)

Susan Holtzclaw, ARNP, explains Kaya’s MRI brain scans to Jasmine at Seattle Children’s Hospital on Dec. 12, 2018. The scans show no measurable growth of Kaya’s brain tumor since she finished her radiation. (Olivia Vanni / The Herald)

Susan Holtzclaw, a nurse practitioner and member of the brain cancer team, comes in to go over the scans. She explains they show no growth.

DIPG is a tumor that’s rooted in the brain stem and grows. It mostly affects children and has no cure, so a scan showing no growth is the most positive result Jasmine could have hoped for. Brain tumors remain the most common cause of cancer-related death in children, and DIPG is the leading cause of death from pediatric brain tumors.

The medical evaluation is not over. There are vitals to take and a few observations to make.

Kaya sits in a hospital bed at Seattle Children’s Hospital and places car stickers on her anesthesia mask while she waits to be taken in for her MRI on Dec. 12, 2018. This is Kaya’s first brain scan since she stopped radiation to treat her brain tumor. (Olivia Vanni / The Herald)

Kaya sits in a hospital bed at Seattle Children’s Hospital and places car stickers on her anesthesia mask while she waits to be taken in for her MRI on Dec. 12, 2018. This is Kaya’s first brain scan since she stopped radiation to treat her brain tumor. (Olivia Vanni / The Herald)

Holtzclaw guides Kaya out of her stroller. She is still groggy and stumbles before catching her balance. Despite being exhausted she still has enough energy to show the nurse her biggest roar face, something that speaks to Kaya’s attitude as she enters the final few months of her life.

A milestone worth sharing

The symptoms come on rapidly. Less than a month into the new year the small limp that had been barely noticeable in November has become a hindrance. It is hard for Kaya to walk. She often loses her balance and reaches out to whatever is near to stabilize herself. Her facial droop is more noticeable.

Despite it all, life carries on as normally as possible. When Kaya loses her first tooth, it is a milestone her family feels lucky to experience.

A few days after losing the tooth Kaya insists on bringing it to school to show her classmates. She is visibly tired but that doesn’t stop her from making the trek to Emerson Elementary that afternoon.

Kaya smiles playing a worm game on her iPad while listening to YouTube videos through her Spiderman headphones on Jan. 21. (Olivia Vanni / The Herald)

Kaya smiles playing a worm game on her iPad while listening to YouTube videos through her Spiderman headphones on Jan. 21. (Olivia Vanni / The Herald)

Swarmed by her classmates, her kindergarten teacher Amanda Willoughby asks how much the tooth fairy has given her.

Kaya responds enthusiastically, “A million-trillion dollars!”

She only stays for 45 minutes, being helped into her stroller by her grandmother Sandie Fitzpartick as the class makes its way to lunch. The stroller, which she once resisted, is a welcome sight. The short class period has sapped her energy and she nestles in.

Kindergarten classmates stand around Kaya as she shows them where in her mouth she lost her first tooth during class at Emerson Elementary on Jan. 22. (Olivia Vanni / The Herald)

Kindergarten classmates stand around Kaya as she shows them where in her mouth she lost her first tooth during class at Emerson Elementary on Jan. 22. (Olivia Vanni / The Herald)

Family time

For Jasmine, working 40 hour weeks means less time spent with Kaya.

As Kaya’s health deteriorates Jasmine takes scattered days off. By February she is at home full time.

Grandparents, aunts, uncles and cousins make time to see Kaya.

One night while the family is gathered around a puzzle, Kaya gets hold of a snorkel mask. With a little help from Mom she has the mask on, making everyone laugh without saying a word. She is the center of attention and loving it.

Kaya sits down next to her floor seat picture wearing her favorite Spiderman shoes during class at Emerson Elementary on Jan. 22 in Everett. (Olivia Vanni / The Herald)

Kaya sits down next to her floor seat picture wearing her favorite Spiderman shoes during class at Emerson Elementary on Jan. 22 in Everett. (Olivia Vanni / The Herald)

She drags us into playing one of her favorite games, Doggie Doo, which, as its names suggests, consists of a small plastic dog that uses air to pump out fake green plastic dog poop. She plays for a short while before she starts to tire.

As family begins to clear out for the night, Jasmine picks up Kaya, rocking her on the couch.

Exhaustion takes over. Kaya begins to cry. It’s a stark contrast to the playful child who so often fills a room with laughter.

It prompts a quick good night. Kaya offers a quiet goodbye.

On March 13, I am woken up by text message from Kaya’s grandmother, Sandie, “Our precious Kaya passed away early this morning. Our hearts are broken.”

Kaya hugs her mother as she becomes emotional while explaining Kaya’s DIPG diagnosis on Nov. 14, 2018, at their home in Everett. (Olivia Vanni / The Herald)

Kaya hugs her mother as she becomes emotional while explaining Kaya’s DIPG diagnosis on Nov. 14, 2018, at their home in Everett. (Olivia Vanni / The Herald)

A celebration worthy of a superhero

There is no funeral, only a memorial to celebrate Kaya’s life. A funeral doesn’t feel right for someone as happy and energetic as Kaya.

It’s a beautiful first day of June as people make their way into Emerson Elementary.

There are superhero decorations everywhere. If anyone isn’t in a complete superhero costume they are wearing some kind of superhero logo. The cafeteria is full.

A projection screen displays a sideshow of photos and videos of Kaya played over a soundtrack of her favorite songs.

Kaya’s urn, decorated in pink and white butterfly etchings, sits on stage next to a bundle of Spider-Man balloons just to the side of the projection screen. Front and center, just how Kaya liked to be.

Kaya receives anesthesia before her MRI brain scan at Seattle Children’s Hospital on Dec. 12, 2018. This is Kaya’s first time getting scans since she finished her radiation treatment in July. (Olivia Vanni / The Herald)

Kaya receives anesthesia before her MRI brain scan at Seattle Children’s Hospital on Dec. 12, 2018. This is Kaya’s first time getting scans since she finished her radiation treatment in July. (Olivia Vanni / The Herald)

Correction: Kaya Sanders’ age was misstated in an earlier version. She was 5 years old. Her sixth birthday would have been June 22.

Olivia Vanni: ovanni@heraldnet.com; 425-339-3294. Twitter @ogvanniphoto.

About this story

Readers of The Daily Herald were first introduced to Kaya Sanders in a Dec. 4 feature story about a hospice program that catered to pediatric patients. Photojournalist Olivia Vanni continued to visit the 5-year-old Everett girl in the months after the story ran. She was drawn to Kaya’s intuition and ability to distract loved ones from dwelling on her declining condition.

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