Dr. Abby Rosenberg recently assumed a leadership role in the Adolescent and Young Adult (AYA) Cancer Program at Seattle Children’s Hospital. Dr. Rosenberg also happens to love to write, so she’ll be contributing to On the Pulse from time to time. Below, she talks about her own experiences as a teen, and what it’s like for teens with cancer to balance those struggles while battling a serious illness.
Dr. Abby Rosenberg is the new medical leader of Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program
It is with excitement and some nervousness that I begin my role as the new medical leader of our Adolescent and Young Adult (AYA) Cancer Program at Seattle Children’s Hospital. Why am I nervous? I love working with teens and young adults. But, I also remember my own adolescence and young adulthood. It wasn’t easy. I was socially awkward. Painfully insecure. A little bit lonely. I was a good student, a decent soccer player, and (unfortunately) an inconsistent friend. I wanted desperately to fit in, but never quite did. I believed that each boyfriend was “the one”…until suddenly he wasn’t. I fought with my mother constantly; I wanted her to be my friend and never would have admitted that I really needed her to be my mom. I couldn’t wait to move out, to be independent, to prove to the world that I was somebody.
Adolescence and young adulthood is a period of life that is supposed to be characterized by struggle. Maybe that sounds melodramatic, but I think it’s true. It is the time when we develop our self-identities. Our independence. We navigate peer relationships. Romantic relationships. Family and community roles. We begin to set our educational, vocational, and other life goals. We take on real responsibilities. Put bluntly, we grow up.
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Dr. Ghassan Wahbeh, right, diagnosed Paige Norris, now 14, with Crohn’s disease three years ago.
Paige Norris’s young life seemed to be sailing along with fair winds and sunny skies. At 10 years old she was an enthusiastic tennis player with lots of friends and a stellar academic life – two years ahead in every subject.
But sometime in fourth grade her internal weather shifted, and she developed debilitating abdominal pain.
Her parents felt helpless as doctors downplayed Paige’s symptoms. “It was so frustrating to hear condescending advice like, ‘kids have stomach issues; she’ll get over it,’” recalls Deborah Norris. “But I know my daughter, and she’s not a complainer.”
Paige’s condition worsened as mysterious bouts of vomiting and diarrhea sapped her energy. She stopped growing, lost 20 pounds, and had to quit her favorite sport.
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The sun was bright when Lyla Conrad and her father arrived early for softball practice to catch a few pop flies. Lyla, 9 at the time, had caught hundreds before, but that day she lost one in the sun. It fell straight down into her eye. Almost immediately, her eye was swollen and she felt incredibly nauseous.
“We thought she had a concussion,” said Sari-Kim Conrad, Lyla’s mother. “We never thought a softball could do so much damage.”
After receiving an initial check-up at a local emergency room, she was transported by ambulance to another area hospital for further tests. The diagnosis: an orbital “trapdoor” fracture. Lyla would need surgery, and soon. Read full post »
Patients at Seattle Children’s Hospital on Saturday were transformed into superheroes, each receiving a personalized cape with their initial sewn into the fabric right before their eyes, thanks to Capes4Heroes, an organization that makes capes for kids with disabilities, life threatening illnesses or kids who just need to feel empowered. There were many different cape designs to choose from, from Batman to bright pink sequins. Each child got to pick their own.
Strength and courage were two abilities the capes helped to bring out in the kids, who often spend a great deal of time in and out of the hospital.
Tricia Bertsch, playroom coordinator at Seattle Children’s, knows all too well how empowering a cape can be to a child. Bertsch’s son, Calvin, who visits Seattle Children’s frequently, wanted to wear his cape 24 hours a day, 7 days a week when he first received it. Read full post »
Dr. Douglas Hawkins is the chair of the COG study
At the American Society of Clinical Oncology (ASCO) Annual Meeting, Children’s Oncology Group (COG) researchers presented promising findings from an international study that has identified a new therapy for treating rhabdomyosarcoma, a common childhood cancer. The therapy has fewer harsh side effects, meaning it lessens the chance of infections, need for blood transfusions and infertility later in life.
“Although we did not improve the cure rate, we are excited that we have identified a therapy that was as effective as standard treatment, but has fewer harmful side effects,” said Dr. Douglas Hawkins, chair of the COG study and associate division chief of Hematology/Oncology at Seattle Children’s Hospital. “Most children are cured of this cancer, and so we want to limit not only the side effects they experience during treatment, but also reduce the side effects that affect long-term health.”
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Baby Molly Hamilton.
On Feb. 17, 2008, Erin and Bill Hamilton welcomed their daughter Molly into the world. She appeared to be a perfectly healthy, 9-pound baby girl, but a newborn screening test revealed Molly had cystic fibrosis.
“We were devastated,” Erin said. “We didn’t know anything about cystic fibrosis and had no idea how this disease would affect her life.”
Dr. Bonnie Ramsey, a national leader in cystic fibrosis research.
Cystic fibrosis is an inherited condition that affects about 30,000 people in the United States. It causes thick, sticky mucus to build in the lungs, digestive tract and other areas of the body. It’s also a disease that has become the life’s work of Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute.
In 1938, when cystic fibrosis was first recognized as a disease, babies with this condition rarely lived past one year. Thanks to researchers like Ramsey, children with this disease can now live comfortably into adulthood.
“It is so rewarding to see how research impacts the lives of these children,” Ramsey said. “My goal is to keep conducting research studies until there are successful treatments for all patients with cystic fibrosis.” Read full post »
Social worker Yasha Carpentier (right) talks with a patient’s mom about the Patient Emergency Assistance Fund.
A patient arrived at Seattle Children’s Emergency Department by helicopter, alone and unconscious. As the Emergency Department team worked to resuscitate the boy who had nearly drowned, his parents drove several hours in stunned silence to the hospital, hoping their son would be alive when they got there. After receiving the good news that he would ultimately recover from the accident, they realized that they’d left their cell phone charger at home and had no way to contact family and friends.
It’s a common scenario for families, who often arrive at Seattle Children’s Hospital for lifesaving care with little more than the clothes on their backs.That’s where the Patient Emergency Assistance Fund, administered by Seattle Children’s Social Work Department, comes into play. The fund provides short-term help to families who are hours away from home with little money and few of the basic necessities of life.
Social worker Lynne Hakim calls the fund a safety net and says the basic necessities it purchases, like a simple cell phone charger, can be the bridge that helps a family cope with all the uncertainty and intensity inherent in an unplanned hospital stay.
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Each week, poets Ann Teplick and Sierra Nelson arm patients at Seattle Children’s Hospital with a notepad, pen and thought-provoking prompts to help them discover the power, and therapeutic nature, of the written word. Some patients use writing to share their story or process difficult emotions, while others use it to ignite their imagination and go to another place, remembering their life and who they are beyond the hospital walls.
“I approach children and teens by telling them they have important things to say, and that the world needs their stories,” said Teplick. “I ask them if they agree, and time and time again, they reply ‘Yes.’ I then invite them to write from the heart and share something about who they are as a person.”
Teplick and Nelson work with Seattle Children’s patients through the Seattle Arts and Lectures’ Writers in the Schools (WITS) program, which sends professional writers into schools to help students discover and develop their writing ability. About five years ago, WITS added Seattle Children’s as its only non-public school site.
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While many people with epilepsy live a full life, some die abruptly without warning or other clear medical cause due to a devastating phenomenon called sudden unexpected death in epilepsy (SUDEP). SUDEP is the most common cause of death in those with severe forms of epilepsy where seizures cannot be controlled with treatment, but what causes this tragic event remains unclear.
Franck Kalume, PhD, and other researchers at Seattle Children’s Research Institute are working to change this.
“Having a family member unexpectedly pass away from this – without any explantation as to why – is extremely devastating,” said Kalume, who lost his nephew to SUDEP. “Even though this condition has been around since the dawn of time, it is only in the recent decades that there’s been a substantial increased interest in SUDEP research and in raising awareness about its risk. I hope that we will be able to make a life changing impact by furthering our knowledge of the physiological mechanisms of SUDEP and finding ways to prevent it.”
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Meet Olivia Rickert and Michile Smith: Two generations apart, but linked forever by their special hands.
When Olivia Rickert was still in utero, an ultrasound at 20 weeks revealed that she had inherited a genetic mutation passed down from her mother and maternal grandmother. In Olivia’s case, the mutation was expressed as a cleft (split) hand. Though most kids born with this condition have no other health problems and can overcome their hand difference naturally or with surgery, Olivia’s mom (Stephanie Rickert) worried it might signal worse news. Stephanie had little outward sign of the mutation, but her mother, Michile Gormley Smith, was born with split hand/split foot absent long bone syndrome — claw-like hands and feet and legs missing tibia bones. (Smith was treated at Seattle Children’s starting in 1958 by pioneering orthopedist Dr. Ernest Burgess.)
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