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Madeline Pursues New Dream After Overcoming Cancer Four Times

May 3, 2019  |  Cancer and Blood Disorders, Patient Stories, Philanthropy, Research Post Comment

Madeline Boese, with her mom Terri, cancer-free after a 12-year battle with acute lymphoblastic leukemia.

When Madeline Boese was 14, she had visions of pointe shoes, tutus and sugar plums dancing in her head. She dreamed of becoming a professional ballerina, and hoped for a future in the spotlight doing what she loved.

Unfortunately, her body had different plans.

One day in ballet class in December 2006, she noticed an odd golf ball-sized lump on her left thigh below her pink tights. Her mom, Terri Boese, said a trip to their doctor in their hometown of Plano, Texas, led to a bone-chilling discovery.

“I was terrified when I heard ‘malignancy detected,’” Boese said. “It was awful and so out of the blue. I felt like I was going to hyperventilate, and it took all I had to hold myself together.”

Madeline was immediately referred to a hospital in Dallas where she was diagnosed with acute lymphoblastic leukemia (ALL). From there, Boese said everything moved rapidly as Madeline began what would be two and a half years of grueling chemotherapy treatment.

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Two Heart Transplants and Three Birthdays Later, Mya is Thriving

April 5, 2019  |  Heart Center, Patient Stories 1 Comment

After undergoing two heart transplants before she was 4 years old, 13-year-old Mya Garcia (above with her brother Marcel) is thriving today.

Mya Garcia, 13, has three birthdays. The first one celebrates the day she came into the world. The other two commemorate the days she was brought back to life.

When she turns 18 years old, her mother, Jamie Gonzalez, has a special gift for her miraculous daughter – a heartfelt letter to honor a day she was worried may never come. It’s a letter she’s been holding onto since her daughter was just 4 years old. She wrote it after Mya received the ultimate gift – a second heart; a third chance at life.

“I wrote her a letter to open when she turns 18 that shares in detail everything she went through after she was born, so she truly knows how hard she had to fight for her life,” Gonzalez said. “I don’t ever want her to take her precious life for granted.”

In 2006, three weeks before Mya was due to be born, an ultrasound revealed she had a serious congenital heart defect and her heart rate was dropping rapidly. Gonzalez was induced, and soon after Mya arrived, she was transferred to Seattle Children’s neonatal intensive care unit (NICU).

“It was awful and traumatic,” Gonzalez said. “I just remember holding her tiny little hand hoping everything would be ok.” Read full post »

Researchers Share Key Learnings From T-Cell Immunotherapy Trials

December 1, 2018  |  Cancer and Blood Disorders, Patient Care, Philanthropy, Research Post Comment

Harper Beare was diagnosed with acute lymphoblastic leukemia when she was just 10 months old. After she wasn’t able to achieve remission through conventional treatment, she traveled to Seattle Children’s to participate in the PLAT-05 T-cell immunotherapy trial. Soon after, Harper was in remission.

Seattle Children’s doctors and researchers continue to believe chimeric antigen receptor (CAR) T-cell immunotherapy has the power to revolutionize pediatric cancer care. Over the past year, they have made tremendous progress with the promising therapy, which has given patients like Harper Beare, Erin Cross and Milton Wright a second chance at life.

Seattle Children’s recently enrolled its 200th immunotherapy patient, and now has nine T-cell therapy trials targeting childhood cancers from leukemia to solid tumors, which is one of the most robust pipelines in the country.

Seattle Children’s researchers are continuously discovering new best practices based on their experience in the trials, and as a result, will share six abstracts this weekend at the American Society of Hematology (ASH) Annual Meeting in San Diego.

“It’s amazing to be at a place in our research where we’re learning from our existing trials, and immediately incorporating that vital intel into our new trials,” said Dr. Rebecca Gardner, oncologist at Seattle Children’s and principal investigator for the PLAT-02 and PLAT-05 CAR T-cell immunotherapy trials. “We are also pleased to now offer several new trials to patients who would otherwise be out of treatment options. Our goal is to offer the best therapy possible, and to never let any patient reach the end of the line.”

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Two Years Cancer-Free, Erin Advocates for T-Cell Immunotherapy

October 11, 2018  |  Cancer and Blood Disorders, Patient Care, Patient Stories, Philanthropy, Research Post Comment

At age 2, Erin Cross was diagnosed with acute lymphoblastic leukemia. She achieved remission through her initial cancer treatments, but relapsed in 2016. Out of treatment options, her family found hope in Seattle Children’s PLAT-02 T-cell immunotherapy clinical trial. Erin, now 8, just celebrated her two-year anniversary of being cancer-free. Photo by Jane Mann

Each morning, 8-year-old Erin Cross springs out of bed excited to go to school. A third grader in Chester, England, she loves science and math, and imagines a future as a researcher making “potions” in a lab. She loves cracking jokes, rugby and playing make-believe games with her friends on the playground. For Erin, who spent most of her life in the hospital and away from others her age, she cherishes each day she is able to just be a kid.

“It’s amazing to see Erin back to living a normal life,” said her mother, Sarah Cross. “We’re so thankful that we’re able to enjoy time as a family doing regular things like taking picnics, playing on the beach or going to the zoo. It’s time that we never take for granted.”

Nearly three years ago, Cross faced the devastating reality that she may never see her daughter grow up. At age 2, Erin was diagnosed with acute lymphoblastic leukemia (ALL). She was able to achieve remission through her initial cancer treatments, but in 2016, her family received the shattering news that she had relapsed and was out of treatment options.

That was, until they found hope in Seattle Children’s Pediatric Leukemia Adoptive Therapy (PLAT-02) chimeric antigen receptor (CAR) T-cell immunotherapy clinical trial for children and young adults with relapsed or refractory ALL who are not likely to survive with current treatments. In July 2016, Erin’s family arrived in Seattle for the trial.

“Seattle Children’s threw us a lifeline,” said Cross. “We knew we had to get her there. We moved mountains to save our daughter’s life.”

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Baby Survives Incredible Odds After Vacation Takes Terrifying Turn

October 20, 2017  |  Heart Center, Orthopedics and Sports Medicine, Patient Care, Patient Stories 1 Comment

18-month-old Casey Lang defied incredible odds after an aggressive infection threatened his life.

Sara Chenault and her husband, Ed Lang, held their 15-month-old baby, Casey Lang, tightly as they sat outside the hospital on a warm sunny day in July. Casey giggled as he watched the wild rabbits hop through the grass. His eyes lit up and he squealed as he reached for the basketball his dad gently rolled toward him. Casey couldn’t seem happier, but his parents were beside themselves – they were saying goodbye to their baby boy.

“His situation was dire and we didn’t want Casey’s last few hours spent in a hospital room,” said Sara as she tearfully recalls that heartbreaking afternoon. “We wanted our last few hours together to be meaningful so we took Casey outside to let him just enjoy being a little boy.”

Casey and his family had already endured a rollercoaster experience throughout an unexpected 5-week hospital stay. They thought they were nearing the end of their time at the hospital and that Casey may finally be out of the woods. However, that morning everything changed. It became clear the worst was yet to come. Read full post »

Baby Flies Across the Globe for Lifesaving Heart Surgery 24 Hours After Birth

June 1, 2017  |  Heart Center, Patient Care, Patient Stories 6 Comments

Liam Ray, now 4 weeks old, flew from Guam to Seattle hours after being born for lifesaving heart surgery.

In the early morning hours of May 3, Taylor and Scott Ray welcomed baby Liam into the world at a hospital on Andersen Air Force Base in Guam where they were stationed. After Scott noticed Liam looked a little blue and was breathing heavy, doctors took Liam to get a chest X-ray. Expecting a perfectly healthy baby, Taylor and Scott waited; hoping it was nothing serious and they would be able to take him home very soon, as planned. Unfortunately, their plans were about to change.

Taylor will never forget listening in shock as their doctor said, “Your son needs to be transferred to another hospital to have open heart surgery. You have two hours to get ready and decide who can fly with him.”

“It was devastating,” Taylor said. “You hear stories about this happening but you never think it will be you. I thought we’d be going home as a family, and then suddenly I was alone as Scott and Liam were flying across the globe.” Read full post »

New Use of Old Surgical Tool Transforms Brooklyn’s Life

February 8, 2017  |  Heart Center, Patient Care, Patient Stories 1 Comment

Brooklyn Clasby, now 10 years old, received a Potts shunt at the age of 8.

In February 2010, Jennica Clasby knew something was wrong when her 3-year-old daughter, Brooklyn, said she needed to sit down because her “heart hurt.”

“I thought it was really odd to hear that coming from a 3-year-old,” Clasby said. “I sat her down on my lap, put my hand over her heart and I was terrified to feel that it was practically pounding out of her chest.”

Clasby and her husband Brandon, who lived in Colorado, rushed Brooklyn to the emergency room where they were shocked to learn she was in heart failure. Brooklyn was diagnosed with pulmonary hypertension (PH), or high blood pressure in the lungs. PH is a chronic condition that occurs when the muscle in the wall of the blood vessels and arteries in the lungs thickens and cannot properly expand to receive blood coming from the heart. This causes resistance to the heart, which then works harder to pump the blue blood in need of oxygenation into the lungs. Over time, the strain on the heart can cause it to fail.

“Our world was turned upside down,” Clasby said. “It’s incredibly hard to hear that your daughter has an incurable, lifelong disease that will progressively get worse. It changed the way we lived and gave us a new appreciation for life.”

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Researchers Find Possible Key to Limiting Side Effects From T-Cell Immunotherapy

December 2, 2016  |  Cancer and Blood Disorders, Patient Care, Research Post Comment
Dr. Rebecca Gardner, oncologist and lead investigator for Seattle Children's T-cell immunotherapy trial for children with acute lymphoblastic leukemia.

Dr. Rebecca Gardner, oncologist and lead investigator for Seattle Children’s PLAT-02 trial.

T-cell immunotherapy continues to take center stage as one of the most promising new cancer therapies of our time. After receiving the therapy, which reprograms a person’s own T cells to detect and destroy cancer, 93% of children with acute lymphoblastic leukemia (ALL) who enrolled in Seattle Children’s Pediatric Leukemia Adoptive Therapy (PLAT-02) trial and were unlikely to survive, achieved complete remission. Some are still in remission now more than two years out from the therapy.

This is a message that Dr. Rebecca Gardner, oncologist and lead investigator for the PLAT-02 trial at Seattle Children’s, will be underscoring in her abstract presentations at The American Society of Hematology (ASH) Annual Meeting. However, she will also highlight that there is still work to be done, and will present a possible answer to one of the most challenging puzzles facing researchers in the field: How can we limit the possible side effects of the treatment while retaining the effectiveness of the T cells?

“We are in a pivotal time where we know this therapy works in getting patients who are very sick into remission, but now we’re focusing on how to improve the treatment experience, which includes limiting the possible side effects,” said Gardner. “Our latest results mark an exciting milestone where we have potentially found the key to better controlling the body’s reaction to the T cells while still ensuring efficacy.” Read full post »

Tumor Paint Brings Light to Toddler’s Brain Tumor

September 22, 2016  |  Cancer and Blood Disorders, Patient Care, Patient Stories, Research Post Comment
Hunter Coffman, 2, with his family.

Hunter Coffman, 2, with his family.

In December of last year, Laura Coffman began to notice that something wasn’t quite right with her 2-year-old son, Hunter. He was leaning to one side and seemed to lose his balance easily. When he became lethargic and started vomiting a few days later on Dec. 28, she knew it was time to see the pediatrician.

After all standard tests came back normal, they were sent to Seattle Children’s for further testing and to find an answer. Unfortunately, it was far worse than anything Coffman could have imagined.

“What I thought was probably just Hunter being a wobbly toddler with a virus turned out to be a brain tumor,” said Coffman. “I will never forget that day. It was the most traumatic six hours of our lives.” Read full post »

From 35 Percent Chance of Survival to Five Years Cancer-Free, Double Stem-Cell Transplant Improves Outcomes for Kids With High-Risk Neuroblastoma

June 5, 2016  |  Cancer and Blood Disorders, Patient Care, Patient Stories, Research Post Comment
Katie Belle, now 10 years old, was diagnosed with high-risk neuroblastoma when she was 3.

Katie Belle, now 10 years old, was diagnosed with high-risk neuroblastoma when she was 3.

In August of 2009, when Katie Belle was just 3 1/2 years old, a persistent fever led her to Seattle Children’s Emergency Department where doctors discovered a baseball-sized tumor in her abdomen. She was diagnosed with high-risk neuroblastoma, a cancer that starts in immature nerve cells and develops into tumors. Her chance of survival: 35%.

“I felt like someone stuck a dagger in my stomach,” said Katie’s mother, Jennifer Belle. “I couldn’t breathe. However, I had to put on a brave face for Katie.”

For children with high-risk neuroblastoma, which according to the National Cancer Institute occurs in approximately one out of 100,000 children, Katie’s prognosis was not uncommon. On average, less than 50% of children with this disease live five or more years after diagnosis.

However, a Phase 3 trial performed by the Children’s Oncology Group (COG), and led by Seattle Children’s oncologist Dr. Julie Park, has found that adding a second autologous stem-cell transplant, which is a transplant that uses the patient’s own stem cells, to standard therapy improves outcomes for patients with high-risk neuroblastoma. Read full post »