Shannon Keating, 16, before cancer diagnosis.
Shannon Keating always imagined that she would be a mom some day, but she didn’t expect she’d be treated at a fertility clinic at age 17. Shannon was diagnosed with Hodgkin Lymphoma as a high school sophomore, was successfully treated and then relapsed nine months later. As she prepared to fight for her life a second time, experts at Seattle Children’s Hospital helped her preserve her dream of being a parent one day.
A devastating diagnosis
Shannon was first diagnosed with Hodgkin Lymphoma in March 2013, after she discovered a lump on her neck. The treatment was six months of less-aggressive chemotherapy that oncologists did not believe would affect her fertility.
“I was relived that this therapy was less toxic, but when it was finished I didn’t feel like I was done,” Shannon said. “I had this feeling hanging over my head. I believed my cancer would come back.”
Unfortunately, Shannon was right. That December, her cancer relapsed. Facing a life-threatening illness once again, she learned her second round of treatment would be more aggressive and could cause infertility. Doctors offered her the opportunity to freeze her eggs so that she might later become pregnant using in-vitro fertilization, but Shannon was initially overwhelmed. Read full post »
Nestled serenely in the woods of the Pacific Northwest near Mt. Rainier is a unique camp for kids. Stanley Stamm Summer Camp is week-long, sleepover camp for children with serious illnesses, ages 6 to 14 years old who are patients at Seattle Children’s Hospital. From cystic fibrosis to congenital heart disease, Stanley Stamm Camp can care for children with terminal or chronic medical conditions who may be unable to attend other camps due to their medical needs.
Founded in 1967 by Dr. Stanley Stamm, a Seattle Children’s cardiologist and quiet hero, the camp has transformed since it’s inception to something truly magical and memorable. “The camp started very small, with only a few volunteers,” said Stamm. “Today, we have about 100 campers and more than 200 volunteers. They are truly the spirit of the camp. It’s been nearly 50 years since we started, and it will hopefully continue long after I’m gone.” Read full post »
In honor of Childhood Cancer Awareness Month, 26-year-old Heather Wick talks about having cancer at the age of 18 and how the experience influenced who she is today.
Heather Wick with her son, Daniel
Until beginning to write this post, I had never really thought about how generic introductions are. Name, age, job title, where you live, whose wife or mom you are…how much do you share to tell a person who you are? My introduction is fairly typical, Heather Wick, 26 years old, nanny, lives in Monroe, Alan’s wife and Danny’s mom…oh and CANCER SURVIVOR.
At this point in exchanging pleasantries I often get, “Oh my gosh… you had cancer?! You’re so young!” and then I begin to walk my curious new friend through my journey. Why don’t I just leave out the cancer survivor bit and make things quick and simple you ask? Well because I am proud to be a cancer survivor. That title is as much a part of me as my name is. So, new friends, I invite you to walk through a shortened and condensed version of my journey here, on the blog for the hospital that saved my life.
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Brenda Senger and her daughter Tessa.
Tessa Senger, of Spokane, Wash., appeared to be a perfectly healthy child until she began having seizures at age 4. Her mother, Brenda Senger, took Tessa to a local neurologist, who diagnosed her with epilepsy. But the treatments prescribed to Tessa did not lessen her seizures, which were occurring up to 50 times each day. Tessa grew weaker and began losing weight.
“I felt helpless,” her mom said. “I just wanted her seizures to stop and for her to start growing again.”
Eventually, Tessa was referred to Seattle Children’s Hospital, where Dr. Russell Saneto, director of the Mitochondrial Medicine and Metabolism Care Team at Seattle Children’s and an investigator at Seattle Children’s Research Institute’s Center for Developmental Therapeutics, diagnosed her with a mitochondrial disease. Saneto prescribed a vitamin cocktail and seizure medications that changed Tessa’s life. The tiny girl, who weighed just 35 pounds until age 6, finally started gaining weight and her seizures stopped almost completely. Tessa is now 15 years old and has only had two seizures since second grade. She is healthy enough to begin reducing her seizure medications.
“Tessa is just thriving year after year,” Senger said. “I am thankful every day that we found Dr. Saneto and the support of Seattle Children’s Hospital.”
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At least 138,000 children in the United States are estimated to have Tourette’s syndrome, a condition which causes urges that lead to repeated involuntary movements (motor tics) and sounds (phonic tics). For decades, research suggested pharmaceutical therapies were the only effective treatments for tics, but clinical psychologist Dr. Geoffrey Wiegand is having success using a new, innovative behavior intervention to treat tics. Wiegand is also offering highly effective behavior therapy to children with Obsessive Compulsive Disorder (OCD) to help them manage their worries and compulsions.
Jules Brown’s OCD made her afraid to leave her house. Now that she has has effective treatment, she tries new things like inner tubing.
Jules Brown appeared to be a happy, healthy child until she was 5 years old, when her parents began noticing odd behaviors. She was constantly changing her clothes out of fear of being dirty and would wash her hands until they bled. It took the family hours to leave the house because Jules was terrified she would have an “accident” and would insist on visiting the bathroom repeatedly. At school, she spent many days in the nurse’s office, afraid of various illnesses or injuries that she did not have.
“As her mom, I wanted to protect her, so we were constantly doing anything we could to reassure her,” Christie Brown said. “But the impulsive behaviors just got worse.” Read full post »
Dr. Kym Ahrens (left) with Camp Inside-Out colleagues (left to right), Heather Spielvogle, Mavis Bonnar and Alexis Coatney.
This month, Dr. Kym Ahrens is going to camp with 24 teenagers.
Some people would call that an adventure; others, a challenge.
Ahrens calls it research.
Ahrens, an adolescent medicine specialist and researcher within Seattle Children’s Research Institute’s Center for Child Health, Behavior and Development, is studying whether an intensive, five-day “dose” of a specially designed camp can give teens in foster care the skills they need to steer clear of risky sexual behaviors.
It’s a big deal because teens in foster care are at much higher risk than their peers for unwanted pregnancies and sexually transmitted infections (STIs).
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This is a special guest post from JoNel Aleccia, staff writer at Fred Hutchinson Cancer Research Center. See the original article and photos here.
Rachel Dixon holds her son Ezra, who was born with SCID. Nearly two months after having a life-saving bone marrow transplant from his brother, he’s doing well. Photo courtesy of Bo Jungmayer / Fred Hutch News Service
Ezra Dixon was born April 7, four months after the state of Washington first starting screening newborns for the disorder commonly known as “bubble boy disease,” which leaves its patients at the mercy of common germs.
Some 22,610 babies were tested before him and more than 28,000 have been tested since, all negative, health records show. But Ezra is different.
The bald, blue-eyed boy is the only child in the state so far diagnosed with severe combined immunodeficiency, or SCID, detected through the program.
When staff at the Washington State Department of Health Newborn Screening Lab analyzed the drop of blood pricked from his heel shortly after birth, they found none of the T-cells that protect the body from infection, a certain sign of the rare disorder.
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Complications that can arise around the time of birth may reduce oxygen and blood flow to a baby’s brain, causing hypoxic-ischemic encephalopathy (HIE), a leading cause of death or neurological impairment among infants. In the past eight years, cooling therapy (hypothermia) has become the standard form of care for HIE, as it’s been found to be effective in reducing brain injury, but doctors say it’s not enough – about half of affected infants still have a poor outcome.
For this reason, researchers have launched a nationwide study, called the Neonatal Erythropoietin and Therapeutic Hypothermia Outcomes in Newborn Brain Injury (NEAT-O), to see if using the hormone erythropoietin (Epo) in conjunction with cooling therapy may further reduce the risk of neurologic deficits in full-term infants (at least 36 weeks gestation) with HIE.
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Dr. Abby Rosenberg recently assumed a leadership role in the Adolescent and Young Adult (AYA) Cancer Program at Seattle Children’s Hospital. She is also a researcher in Seattle Children’s Research Institute’s Center for Clinical and Translational Research. Dr. Rosenberg 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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