Patient Stories

All Articles in the Category ‘Patient Stories’

Teen Preserves Dreams of Motherhood After Cancer Relapse

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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 »

How Cancer Shaped Heather Into Who She is Today

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

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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Seattle Children’s Seeks to Answer Mysteries of Mitochondrial Disease

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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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Seattle Children’s Tackles Tourette’s, OCD with Innovative Therapies

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.

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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.

Meet Jules

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 »

Transplant Saves First ‘Bubble Boy’ in Wash. State Detected with Newborn Screening

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 severe combined immunodeficiency. SCID affects about 1 in every 50,000 babies born in the U.S. Nearly two months after having a life-saving bone marrow transplant from his brother, Judah, he's doing well. Photo courtesy of  Bo Jungmayer / Fred Hutch News Service

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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Remembering Daniel and the Legacy He Left Behind

Daniel Mar

Daniel Mar

In my last post about “The Fault in Our Stars,” I made a comment about how most patients live, if not thrive after their cancers. I am deeply grateful for the readers who correctly commented that some patients also die.

There are no words to express how tragic, painful, or unjust, the death of a young person from cancer can be. I particularly appreciated these comments because they came a day after the death of one of my own, and very beloved, patients. I wrote this memoir the day he died. With his parents’ permission, I am sharing a few pieces of his story, his legacy, with you.

Remembering Daniel

Daniel Mar died early this morning at the age of 20. He was one of my first patients as an independent oncologist. For that alone, I could say he will not be forgotten. Daniel was a “patient” simply because he happened to have cancer; terrible cancer that ultimately took his life. But beyond that, he was so much more. He was an advocate. A son. A brother. A devoted friend. To me, he was my muse. My teacher. And, through it all, my friend.

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Unique Protocol for Flesh-Eating Bacteria Helps Trey Get Back to Life

TreyLaurenBaseballOn a Saturday in March, 13-year-old Trey Lauren was playing with his friends at a birthday party when he fell and cut his knee on a nail. It was a typical injury for a kid his age, but what resulted was anything but typical.

Trey was taken to a local emergency room that night, and by Sunday morning his wound had been closed with six stitches. But when Monday morning came, he was too sick with a fever to go to school, and his knee had begun to swell. Trey’s parents, Mark and Randi Lauren, decided to take him to urgent care, where his stitches were removed and he was started on antibiotics. However, later that night, Trey’s fever persisted, and the swelling in his knee had only gotten worse.

One trip to the emergency room later, Trey received an additional dose of broad spectrum antibiotics, and the decision was made to transfer him to Seattle Children’s Hospital. Read full post »

Getting Back in the Game

Dr. Ghassan Wahbeh, right, diagnosed Paige Norris, now 14, with Crohn’s disease three years ago.

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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New Collaboration Could Accelerate Cures for Lupus, Other Childhood Diseases

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Kathia Vega Flores, 18, was diagnosed with lupus when she was 11 years old. She has had to take toxic medications to manage her disease.

Kathia Vega Flores will never forget the way her friends and family reacted when she came home from a month-long hospital stay at age 11: They did not recognize her.

Kathia had been diagnosed with lupus, a lifelong disease that causes inflammation throughout the body. The medications used to control her disease caused Kathia’s body to swell. She couldn’t walk without assistance. She was often dizzy and nauseous.  In total, Kathia was taking 20 pills each day.

“The medications changed me a lot,” she said. “It was very hard. I just wanted to get back to my normal routine of going to school and seeing my family without upsetting them.”

Lupus is most commonly diagnosed in teenage girls, but half of a million people in the United States are living with it. The disease can lead to rashes, fevers, enlarged lymph nodes, psychoses, seizures and inflammation of the heart, lungs or brain.

Roadblocks on the road to cures

Dr. Anne Stevens, a research expert at Seattle Children’s Research Institute, has been treating lupus patients at Seattle Children’s for 25 years. Despite the great advances experts like her have made studying the immune system, lupus is still treated with toxic medications like chemotherapy and steroids because of a lack of funding for pediatric research. Read full post »

A Journey to Recovery: Pepper Inspires Others Battling an Eating Disorder

At 12 years old, Pepper Snider knew something wasn’t quite right. After a bout of Mononucleosis (mono), Snider began feeling a sense of enjoyment from hunger and started to purposely restrict herself. Years later, a comment from an eighth grade classmate would put everything into focus.

“Look at that roll.”

It was the beginning of a very dangerous journey for Snider, one that would take years to diagnose as anorexia nervosa. Now, at 25 years old, Snider is fully recovered and wants others to know they are not alone in their struggle. Her mission is to help build a community of support and let other people know it is okay to ask for help. Read full post »