Patient Stories

Amanda and her daughter, Amelia, have both been treated at Seattle Children’s for Alagille syndrome.

When Amanda Thorlacius found out she was pregnant with a little girl, she was overjoyed. But she wondered if her daughter would inherit the same genetic condition that robbed her of a normal childhood.

“Give me all the diseases in the world, but don’t give Alagille syndrome to my children,” Amanda said.

Alagille syndrome (ALGS) is a rare, inherited condition in which children may have too few bile ducts in the liver. This causes problems with the way bile moves and makes it hard for the body to remove toxins.

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Colleen and Derek spent the first half of Colleen’s pregnancy like many first-time parents, imagining what their child would be like, musing about things they would do as a family and celebrating a joyful new chapter in their lives.

They never imagined they would have a child with special needs or that doctors would predict their baby may not live past childhood. When that became Colleen and Derek’s reality, Seattle Children’s Uncompensated Care Fund gave them the gift they needed most — time with their daughter.

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In March 2020, Maleea (on left) and her brother Malachi started infusion treatments at Seattle Children’s every other week for a rare genetic condition, CLN2.

Sabrina and Reiff Castillote knew something was wrong with their daughter Maleea’s health when she was just 5 days old. Then, their 6-year-old son Malachi’s behavior became concerning.

For over 15 years, Sabrina and Reiff took their children to countless specialists, but they never received a clear diagnosis. “We were told our daughter was considered ‘failure to thrive,’ without any real answers to as to why,” Sabrina said. “Some providers thought Malachi might have autism and ataxia, but not all their symptoms lined up.”

Finally, in 2019, they got an answer.

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There may be no better way for a 3-year-old to celebrate cancer remission than with a Frozen-themed birthday party. That’s exactly what Penny Hatch and her family did last weekend.

Penny was diagnosed with neuroblastoma, a solid-tumor cancer with a survival rate of about 50%, three months after her baby brother, William, was born with a life-threatening heart condition. Today, William is thriving at home and Penny is in remission.

Penny’s final immunotherapy treatment was on Sept. 2 after a year of treatments that included surgery, chemotherapy, a bone marrow transplant, radiation, and immunotherapy which stimulates the immune system to fight diseases.

Samantha, Penny’s mom, was overwhelmed with emotions when she squirted the final immunotherapy drug dose into her daughter’s mouth. “It felt like I was finally allowed to feel the weight of everything we’ve been through.”

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Photo courtesy of Four Oaks Photography.

On January 30, 2019, Nia Mauesby was born. To celebrate her arrival, the setting sun illuminated the Seattle skyline with bright hues of red, orange and yellow. It was one of the most dazzling and memorable sunsets of the year. As quickly as the setting sun dipped over the horizon, the winds began to shift, and the foreboding weather foreshadowed the turbulent journey that lay ahead.

“When my water broke, we had no idea what we were in for,” Reem Mauesby said.

Mauesby and her husband, Timothy, were elated for their daughter’s arrival, but the timing couldn’t have been worse. Stricken with the flu, Mauesby wasn’t able to see her baby girl for 24 hours after giving birth. When Nia was finally was placed on her chest, she felt a heavy sense of relief, but that feeling would soon be stripped away. Read full post »

Liesel Von Imhof will graduate from Harvard with a degree in stem cell biology in May 2021, five years after Seattle Children’s neurosurgeons removed her brain tumor.

As a high school freshman, Liesel Von Imhof had a dream of attending college at Harvard. She packed her schedule with challenging classes and participated in varsity sports such as cross-country running and cross-country skiing. She had occasional, debilitating headaches that sometimes caused her to miss school, but she blamed them on stress, dehydration or low blood sugar.

In July 2016, just before her senior year of high school, Liesel’s dream of Harvard was almost derailed when doctors found the reason for her headaches: a Ping-Pong ball-sized tumor in the middle of her brain.

At the urging of her doctors, Liesel, then age 17, and her parents traveled from their home in Anchorage, Alaska, to Seattle Children’s.

Thanks to the care she received here, the support of her family and friends, and her own determination, Liesel is graduating from Harvard this month with a degree in stem cell biology — her first step toward a career in medicine.

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When Cassie Fannin was 19-weeks pregnant with her first baby, she couldn’t wait for the ultrasound that would reveal her child’s gender. During the appointment, she and her husband, Michael, were delighted as they watched their beautiful baby wiggling around on the ultrasound screen.

Fannin asked the technician, “Is it a boy or girl?”

But the technician’s previously cheerful expression now suggested something was wrong. “I’ll need to check with the doctor,” the technician said while hurrying out of the room.

Moments later, a doctor gave Fannin and her husband the devastating news that changed their lives.

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At 16 years old, Mercy Haub, was diagnosed with Hodgkin lymphoma. She just finished her last round of chemotherapy at Seattle Children’s.

Mercy chronicles her journey through Instagram.

Mercy Haub has wanted to cure cancer since she was 7 years old.

“The irony of it all is unbelievable,” she said.

Today, at 16 years old, that mission still drives her, but now it hits closer to home, more so than she could have ever imagined.

A week before the statewide lockdown went into effect in Washington, Mercy began to feel sick. An assortment of unusual symptoms compounded on one another. She felt weak and fatigued, experienced chest pain and rashes. The symptoms persisted and eventually doctors were able to determine the insidious cause: cancer. Read full post »

Kelli Williams holds her son, Isaac, who has been in remission for two years after undergoing treatment for stage 4 high-risk neuroblastoma.

On July 19, 2017, Kelli and Dennis Williams sat in a pre-op room at Seattle Children’s with their 22-month-old son, Isaac. Kelli hugged her little boy close. He was dressed in a yellow hospital gown, happily playing with the iPad Child Life had loaned him. Kelli and Dennis did their best to appear calm in front of their son, but inside they were terrified.

Isaac had stage 4 high-risk neuroblastoma. He’d already been through four months of chemotherapy and now Dr. John Waldhausen, a surgeon specializing in neuroblastoma cases, was going to remove a tumor the size of a navel orange from his abdomen.

“I had been so focused on managing Isaac’s treatment plan that it didn’t hit me until that morning that my son was about to be lying on an operating table,” remembered Kelli. “I just held him and tried not to cry.”

The day before Isaac’s surgery, the Williamses invited their family members and their church pastor into their home.

“We all circled around Isaac,” said Kelli. “Our pastor prayed over him, he prayed for Dr. Waldhausen, that his hands and his team would get out exactly what needed to come out, and nothing more.”

As they waited in the pre-op room, Kelli and Dennis realized it would be the last time they would see Isaac’s smooth, flawless belly. After surgery, he would have a large scar, stretching from hip to hip and up to his chest, a permanent reminder of his illness.

“I lifted up his shirt and tickled his stomach before he went in, knowing it would never look the same,” remembered Dennis. “It made me pretty sad.”

When a nurse came to get Isaac, Kelli reluctantly handed over her child.

“We’re going to take good care of him,” the nurse kindly reassured her.

Isaac happily waved goodbye to his mom and dad, and they kept up their smiles until he was out of sight. Then Kelli broke down, letting out all the tears she’d been holding back. Read full post »

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 »