Patient Stories

All Articles in the Category ‘Patient Stories’

Leaving “No Stone Unturned” for Children with High-Risk Leukemia

Henry Lawrence (left) with nurse coordinator, Shauna Sinclair. Henry received care for aggressive acute myeloid leukemia as part of Seattle Children’s High-Risk Leukemia Program.

There are two fateful phone calls Robin Lawrence will always remember.

The first, an unexpected late-night call from her son’s pediatrician. He had just reviewed the results from his recent blood work, and something was off. The doctor instructed Robin to immediately take then 13-month-old Henry to the nearest children’s hospital to get it checked out. He said that they had to consider it could be cancer.

She remembered thinking in the moment, “That’s ridiculous. Of course, he doesn’t have cancer.”

Days later, Henry was diagnosed with acute myeloid leukemia (AML), an aggressive childhood cancer.

The second call occurred not long after Henry’s leukemia returned for a third time. At the time, Henry was in between treatments. Another round of chemotherapy had temporarily put the cancer into remission, but the Lawrences knew the statistics were not in their favor. The likelihood the leukemia would come back was high.

Their conversation was the first of many with Dr. Todd Cooper, co-interim division chief of Seattle Children’s Cancer and Blood Disorders Center and director of Seattle Children’s High-Risk Leukemia Program, as part of a second opinion service the program offers.

By the end of the call, Robin and her husband, David, knew Seattle Children’s was the best place for Henry should the cancer ever come back. In the coming weeks, they decided to move from their home in Southern California to Seattle for Henry’s medical care.

“When we talked to Dr. Cooper, it was very clear to us that Seattle Children’s is on the forefront of cutting-edge research and treatments for pediatric high-risk leukemia,” Robin said. “Our son’s cancer was in remission, but we understood that it was very likely to recur. We wanted to be in Seattle, ready to get whatever the best care for Henry would be when that time came.” Read full post »

From Patient Family to Employee, Rachel Robinson is Grateful for Seattle Children’s

Rachel Robinson and her family were on a family camping trip when she started to notice something was amiss with her son, Eli. He appeared pale, a hint of green to his complexion, and he was covered in bruises. His identical twin seemed fine, which added to Robinson’s concern.

She called their pediatrician, and they were advised to go to Seattle Children’s as soon as possible. After a blood test, doctors discovered something unimaginable. Eli had cancer.

“It’s something you think is never going to happen to you,” Robinson said. “You wonder if you did something wrong. It was surreal.” Read full post »

Santa Makes Virtual Visits to Seattle Children’s, Music Therapists Sing Carols

This year has been especially difficult for patients and families at Seattle Children’s. Spending time in the hospital is typically not a fun experience, and so for families who have to be inpatient during the holidays, the season may not feel as merry. To help spread joy and brighten up the holidays for children in the hospital, the Child Life team at Seattle Children’s found a new way for Santa to zoom into the hospital this year: they arranged virtual visits, because even during a pandemic, Santa wanted kids in the hospital to know he was thinking about them.

For Melissa Strilecki, 2020 has been more than a difficult year.

“2020 has been the worst year of our lives,” she said.

In May 2020, 3-year-old Hazel came down with what their family thought was a virus. At first, her symptoms didn’t seem insidious. She had a fever and was throwing up. A week later she started complaining of leg pain.

“She was in terrible pain,” Strilecki said. “We couldn’t even pick her up without her crying out.”

They called their pediatrician, and they were advised to take her to Seattle Children’s Emergency Department. At first, they thought her symptoms may have been caused by a bone infection, but after further testing, they received an unimaginable diagnosis: malignant cancer.

“You are told cancer is rare,” Strilecki said. “But it didn’t feel very rare.”

They were devastated. Read full post »

Option To Freeze Ovarian Tissue Gives Young Cancer Patients Hope for Future Fertility

Faye Prekeges’s senior photo, taken one year before her cancer diagnosis. Faye was the first patient at Seattle Children’s to have her ovary removed and frozen to try to preserve her fertility while undergoing treatment for high-risk leukemia.

At 19, Faye Prekeges was not planning for parenthood. She was a freshman at Northeastern University in Boston, Massachusetts. She spent her days thinking about majoring in French and dreaming of working with the United Nations Refugee Agency, not about whether she wanted to be a mother one day.

But an unexpected diagnosis changed all that.

Six weeks into her second semester, Faye began having high fevers and visited the university’s health clinic. Providers suggested she had the flu and would feel better in about a week, but her symptoms quickly grew worse. A few days later, she woke up with a fever of 104 degrees.

Faye thought to herself, “I need to see a doctor now.” She took an Uber to Boston Medical Center’s Emergency Department and tested positive for mononucleosis. They kept her overnight because her white blood cell count was abnormally low.

“Luckily, the woman looking at my slides noticed what she thought were blast cells (primitive, undifferentiated blood cells, often found in the blood of people with acute leukemia) and sent them to the pathologist, who confirmed they were,” Faye said.

She was transferred to Boston Children’s Hospital, where she was diagnosed with high-risk B-cell acute lymphoblastic leukemia.

“I believe everything happens for a reason,” Faye said. “I feel like, this happened to me and my family because we are strong enough to get through it.” Read full post »

Malachi Gets Special Garbage Day Surprise

Tuesdays are 2-year-old Malachi Stohr’s favorite days. Every Tuesday, rain or shine, Whitney Stohr and Malachi bundle up and wave to the garbage men as they empty the garbage bins at the end of the driveway. Malachi and Whitney then take a walk around the neighborhood, following the big green truck along its route. Malachi loves garbage day, and so when Seattle Children’s found out, they got in touch with Waste Management to plan a special surprise.

“So much of Malachi’s life is scheduled around his medical needs,” Stohr said. “He spends many days in the hospital, in clinics, in therapy. We’re eternally grateful to have that level of care available to us. We are thankful to have such ready access to the services at Seattle Children’s and in our local community. But, at the end of the day, Malachi is just a typical toddler. He loves big trucks and watching the trash bins go up and down, up and down.” Read full post »

Two Brothers, Four Transplants, One Strong Family

Logan (left) and Connor Brown at Turnagain Arm in Alaska. The brothers have both received kidney and liver transplants at Seattle Children’s.

“I hate to tell you this, but your son needs a kidney transplant.”

Those words left Rob and Patty Brown dumbstruck.

It was October 2008. That day their 6-year-old son, Connor, had complained that his feet were cramping during hockey practice. Later that evening, his hands and feet completely locked up — a condition called tetany.

“We raced him to the emergency room thinking it was just something silly,” Rob remembers.

It wasn’t something silly. Connor was diagnosed with nephronophthisis, a rare genetic disorder that leads to kidney failure.

Little did the Browns know this was just the beginning of a long and frightening journey, not only for Connor but for their younger son, Logan, as well — a journey that would lead to four transplants and would test their strength as a family.

Read full post »

Out of Heartache, Hope Surfaces for Colton’s Metabolic Disorder

Colton Iverson holds a photo of his older sister, Cody. Photo courtesy Copper Ridge Photography.

Before his first breath, Colton Iverson had already received the gift of a lifetime. Just days old, he became the youngest patient to go on a drug recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of a life-threatening genetic condition called very long-chain acyl-CoA dehydrogenase, or VLCAD, deficiency.

For his parents, the hope it inspired did not come without heartache.

“Colton wouldn’t be here today without our first born, his older sister Cody,” said his mom, Lisa Iverson.

A few days after coming home as excited new parents of a healthy baby girl with an Apgar score of 10, Cody went lifeless in Lisa’s arms one morning. She and her husband, Ty Iverson, rushed Cody to their local hospital in northeastern Washington.

“They did everything they could to save her and they couldn’t,” Lisa said. “For about week, we had no idea what happened to Cody.”

On the day of Cody’s service, the Iversons heard from their family medicine doctor, Dr. Geoffry Jones.

“As we were driving home, I remember the exact spot on the road when we got the call from Dr. Jones,” Lisa said. “He said her newborn blood test showed she had a genetic condition called VLCAD. He recommended we get in touch with a specialist at Seattle Children’s to learn more.” Read full post »

Child Life Specialists Help Patients and Families Cope During Uncertain Times

No matter the circumstances outside the walls of the hospital, Seattle Children’s is steadfast in helping every child live the most fulfilling life possible. Although COVID-19 has halted many things in life, health is not one. Compassion and expert care are two infallible aspects that make Seattle Children’s a place families can count on when they need care, and supporting that relentless mission are the incredible health care workers at Seattle Children’s who continue to provide the best, safest care possible for patients and families.

This year, child life specialists at Seattle Children’s have worked tirelessly to try and make the hospital feel like the same inviting and safe place it has always been. They are heroes without capes. Child life specialists help make sure a family’s experience at the hospital is a positive one. As members of the health care team, they work directly with patients and families to help explain a medical diagnosis, create coping plans, teach relaxation techniques, and more.

Walk into the Emergency Department and patients and families will see the bright, welcoming eyes of Riley Coyle. Underneath her mask and face shield, she radiates light. With her warm and inviting personality, she helps patients and families navigate through what can be a traumatic experience. No family hopes to find themselves in the emergency department, but when they do, Coyle is happy to be there with a reassuring hand.

“It’s a huge honor to support our patients and families and be a part of their journey,” Coyle said. “It’s really rewarding, and I try to do anything and everything I can to help them.” Read full post »

Malachi Stohr Is “Absolutely Amazing”

On May 7, 2018, Whitney Stohr slumped to the ground in the corner of her son’s room in Seattle Children’s Pediatric Intensive Care Unit.

Her son Malachi, who was born with a severe form of spina bifida, had undergone a tracheostomy days before. When he woke up after the procedure, his pain was so intense his body went into shock.

That night, Stohr remembers hearing beeps and alarms blaring in their room. Malachi wasn’t getting enough oxygen and his heart rate was dropping. Providers rushed in to perform CPR.

“I just crumbled to the floor,” Stohr remembers. “I was scared he wasn’t going to make it.”

That’s when a provider from the Medically Complex Care team knelt beside Stohr.

“She looked me in the eye and said, ‘It’s okay Whitney. We got him. He’s stable. He’s going to be okay.’ She told me that night that I needed to be strong for Malachi, and I haven’t stopped yet.”

The Stohrs have come a long way since then, and while Stohr has feared for her son’s life countless times, Seattle Children’s workforce members have been like a second family during the most challenging moments. Read full post »

An Open Letter: Let’s Celebrate Our Differences

In recognition of Spina Bifida Awareness Month, Whitney Stohr penned an open letter encouraging inclusion. She asks people to join her in celebrating our unique differences and to see her son for the extraordinary child he is.

Whitney and her husband, Jason, found out their son Malachi would be born with spina bifida when she was 19 weeks pregnant. Whitney said the moment they walked through the doors of the hospital they knew they were in the best place possible to give Malachi the best care possible. Whitney and Jason call Seattle Children’s a second home. The Stohr family moved from Yakima to Lynnwood to be closer to the expert care Malachi needs at a moment’s notice, offering them much-needed peace of mind at a time when there’s so much uncertainty.

In total, their family spent more than 380 days at Seattle Children’s, helping Malachi overcome tremendous hurdles. Today, in the midst of a pandemic, Malachi’s healthcare needs remain complex and require seamless coordination amongst his many providers at Seattle Children’s, the only nationally ranked standalone pediatric hospital in the Pacific Northwest.

Malachi’s incredible, ongoing medical journey is only part of their story. Whitney says she hopes people see the bright future Malachi has ahead of him. Read full post »