Patient Stories

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Life Derailed Facing Cancer as a Teen

In June 2006, just five days before high school graduation, Heather Krich was diagnosed with cancer. She was 18 years old and while all of her friends were about to go off to college and taking senior trips to Mexico and Hawaii, she took a trip to the inpatient clinic at Seattle Children’s Hospital.

“Just as my adult life was supposed to be starting, I was faced with the possibility of life ending,” said Heather. “It was really overwhelming as dealing with cancer just wasn’t what I was supposed to be doing at that time in my life.”

Heather was diagnosed with non-Hodgkin lymphoma. Doctors at a different Seattle area hospital had initially thought her appendix had burst but discovered in surgery that she instead had cancer.

After receiving the alarming diagnosis, one of Heather’s main concerns was attending her high school graduation. Luckily, with a little help, Heather was able to make it.

“I was in a wheelchair and my twin sister pushed me up the ramp onto the stage so that I could accept my diploma,” said Heather. “It wasn’t how I imagined it would be but I was very happy I could be there.”

After graduation, her doctors referred her to Children’s as they determined her cancer would be best treated at pediatric hospital. Research shows that, for certain kinds of cancer, teens and young adults have dramatic improvements in long-term survival when they are treated on pediatric treatment protocols. In fact, when young adults are treated on pediatric protocols, their long-term survival improves by about 25 percent.

Heather spent the next 13 months in treatment at Children’s. In July 2007, she was thrilled when her cancer went into remission and she ended treatment.

Facing the Challenges

In looking back, Heather said there were many challenges in facing cancer as a young adult, from adapting to the physical changes to following all the rules that go along with inpatient treatment. However, at an age when peer support is so important, she said that the biggest challenge was feeling alone and isolated after having her life derailed with the diagnosis.

“It was a rough time already because it was that transition period into adulthood where you don’t really know where you fit in, especially going through cancer, and you have no one to talk to or relate to,” said Heather. “All of my friends were moving on with their life and they couldn’t grasp or understand my situation. Some of my best friends even stopped calling me.”

Now at 24 years old, Heather was excited to reach her five-year cancer free mark which happened in July 2012. But her experience has left its mark and it has inspired her to be a resource and a support for other patients like her.

Finding a Calling to Give Back

About three years after Heather’s treatment ended, Children’s Adolescent and Young Adult (AYA) Oncology Program sought out to create an online resource that would provide education and peer support to teen and young adult patients across the globe. They brought together a group of AYA cancer survivors, including Heather, and created the video series, “Good Times and Bald Times”, to show how a group of teens and young adults talk to one another about coping with cancer.

“It was so much fun to be involved and it is such a great therapy tool for other patients out there,” said Heather. “It was incredibly therapeutic to look into the eyes of someone else that understands your experience and hear that you aren’t the only one that has gone through these struggles.”

Children’s AYA oncology team asked Heather if she would be interested in being a resource for other teen and young adult cancer patients and she happily agreed. She now serves as a mentor for a patient that recently ended her treatment. They get together to share their experiences and Heather offers insight about transitioning into life after cancer.

“Having that mentorship and camaraderie is wonderful,” said Heather. “Transitioning into regular life is very difficult and it’s hard to even know where to begin and how to navigate back to normalcy. It gives so much hope to see someone on the other side, and I am glad I can provide that perspective.”

Feeling like she has found her calling, Heather is now going back to school in February to become a child life specialist who works with teen and young adult cancer patients.

“I feel such a pull to young adult and teen cancer patients and survivors and I would love to be able to give back and offer support,” said Heather. “I feel it is what I am meant to do.”

A Shoulder to Lean On: Children’s AYA Oncology Program

About 70,000 young people in the U.S. aged 15 to 39 are diagnosed with cancer each year. Teens and young adults comprise a significant population of patients receiving cancer treatment at Seattle Children’s. About a fourth of the patients treated in Children’s inpatient unit are age 15 and older.

The difficulty of facing cancer at this age and the need for psychosocial support is something that Dr. Rebecca Johnson, medical director of the Adolescent and Young Adult (AYA) Oncology Program, understands all too well, not only as a doctor but also as a cancer survivor.

“Teens and young adults have a greater reliance on their peer group as they look to one another to see what milestones they should be reaching,” said Dr. Johnson. “Cancer treatment takes them away from their peers, which can be very distressing. It is important to provide our teen and young adult patients with an enhanced package of psychosocial support in order to improve their treatment experience and help them better process what they are going through.”

Dr. Johnson and her team are working to provide innovative programs and resources at Children’s that will improve the lives of adolescent and young adult cancer patients that will provide this much needed support.

In addition to the “Good Times and Bald Times” videos mentioned above, here is a sampling of some of the other programs and resources, many of which have been made possible by Seattle Children’s Guild Association Teen Cancer Fund:

Not Now Program

This May, you might have heard some buzz about a music video on YouTube where patients on Children’s Hematology Oncology floor sang and danced to Kelly Clarkson’s hit song “Stronger.” The video received worldwide attention and it was thanks to 22-year-old patient, Chris Rumble, who made the video as part of Children’s Not Now creative arts program. This was just one example of the work being done within the program.

The aim of Not Now is to help teens and young adults cope with cancer and provide psychosocial support through creative projects and by connecting them with peers. Led by John Blalock, Children’s Hematology Oncology Artist in Residence, the program gives patients a voice in telling their story through a variety of mediums including photography, video and music.

“What is so neat about the program is that it not only lets patients process their own cancer experience in a way that is creative and fun, but their art projects also give them a wonderful way to share their journey with friends and family,” said Dr. Johnson.

Other projects within the Not Now program have included:

Inpatient Gatherings

In order to help provide a peer group for teens and young adults with cancer, Children’s AYA life specialist hosts regular inpatient gatherings where patients can come together to talk, play games and do different activities.

“Teens and young adults use interactions with peers to process and reflect upon their life experiences. We provide sessions where they can come together and see that they are not alone in their experience,” said Dr. Johnson.

With the hospital’s expansion and opening of Building Hope next year, Dr. Johnson and her team also aim to increase the number of inpatient and outpatient psychosocial offerings in the new dedicated floor for AYA patients. In order to connect AYA patients from other hospitals, and inpatients who are in isolation, they are also looking into using video conferencing technology for the sessions.

Look Good Feel Better Classes

In order to improve patients’ self-esteem, Children’s hosts quarterly Look Good Feel Better classes, which are offered through the American Cancer Society. The classes help patients learn beauty techniques to help them manage the appearance-related side effects of cancer treatment.

Patient Advisory Board

Children’s has also created a Patient Advisory Board comprised of AYA cancer survivors who have expressed a desire to give back after their treatment. The group meets and consults with the AYA Oncology Program to offer their perspective on new programs and act as a support for current patients when needed. The group was also instrumental in providing input about the design of the new dedicated AYA floor that will be in Building Hope.

Heather is a part of this group as well and she is happy to be involved. She is also excited to see all of the tools and resources that are becoming available through the AYA Oncology Program.

“I’m so happy that there are so many tools at Children’s directed at teen and young adult cancer patients,” said Heather. “Having those available will help them better cope and get through their treatment with more ease.”

Cerebral Palsy Procedure Helps 4-Year-Old Take His First Steps

From the time Logan Ellingsworth was born in June 2007, it was clear he was a fighter. Born prematurely with a variety of health issues from exposure to methamphetamines while in utero, Logan had a difficult journey ahead.

Brenda and Randy Ellingsworth, Logan’s grandmother and grandfather who adopted him after he was born, remember the first time they saw him in the intensive care unit at the hospital.

“Out of all the babies in the room, I was surprised to see that one was actually raising his head up as if to see who was coming in,” said Brenda. “I asked the nurse, ‘Who’s this little curious one?’ She said, ‘That is your precious little grandson and he is going to be a fighter.’  I started to cry because at that moment, we knew he was going to have major obstacles to overcome.”

The First Step: Facing Cerebral Palsy

Among the host of medical issues Logan faced, he had periventricular leukomalacia, a white-matter brain injury, and was later diagnosed with cerebral palsy, a disorder of the brain that affects muscle tone and the ability to coordinate body movements. It is caused by an injury to the brain, which can occur when a child is born prematurely.

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Medical Mom Educates Others about Mitochondrial Diseases

Jennifer Mhyre is a medical researcher with a PhD in neuropharmacology. She has read more than her fair share of medical and scientific books throughout her career. But when daughter Katelyn was diagnosed with mitochondrial disease almost four years ago, Mhyre and her husband (who also has a PhD in neuropharmacology) reached for the textbook.

Ashley, Andrew, Katelyn & Jennifer Mhyre

“I knew what mitochondria were, but had never heard the term ‘mitochondrial disease,’” said Mhyre. “I went to my graduate school general pharmacology class book and looked it up.” Mhyre also went online and did more reading. She found that mitochondrial disease was only recently recognized as a disease class, and was just as common as childhood cancer. Read full post »

Parents of Kids with Chronic Pain Benefit from Psychological Therapies, Too

Parenting a child with a longstanding or life-threatening illness—including chronic pain, cancer, diabetes, asthma and traumatic brain injury—can have a negative impact on many aspects of a parent’s and family’s life.   Parents often have difficulty balancing care for their child with other responsibilities such as work, social life, finance and household tasks.

But there are very few programs in the world that address these issues for parents of children with chronic pain, based on a new Cochrane Review published August 15.

Cochrane Reviews are systematic reviews of primary research in healthcare and health policy, and are internationally recognized as the highest standard in evidence-based healthcare.  Tonya Palermo, PhD, of Seattle Children’s Research Institute is a co-author of “Psychological therapy for parents of children with a longstanding or life-threatening physical illness.”

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The Cat Immersion Project: The Next Best Thing to Being There in Purrrson

Many of the cancer patients at Seattle Children’s Hospital are here for months at a time and far from the comforts of home – including the presence of their much-loved family pets. To make matters worse, these patients often need to be in isolation due to their compromised immune systems, cutting them off from the social support that can be a lifeline during a long course of treatment.

Maga Barzallo Sockemtickem is one such patient. Maga spent more than seven months at Children’s in 2011 waiting for a compatible bone marrow donor, eventually undergoing a transplant. A 16-year-old cat-lover, back at Children’s for post-transplant treatment, Maga is confined to her room and hasn’t seen her beloved cat, Merry, in nearly a month.

The staff at Children’s decided to do something about that. While they couldn’t bring Merry to Maga, they did the next best thing. A call to Children’s Facebook fans to post their favorite cat photos for Maga sparked an overwhelming response: fans sent more than 3,000 photos along with comments and heartfelt get well wishes.

Maga, touched by the outpouring of support, responded with …”You guys remind me that there is so much good in the world, and it just makes me feel so much better, and connected. I can’t tell you how it feels sometimes, feeling disconnected and cut off from the world, and then with something like cat pictures bringing me back. Thank you all for your kind words, and well wishing. Its means more than you can ever know. Thank you. Thank you. Thank you…”

With more than enough photos, staff got to work and created the Cat Immersion Project. Using the photos fans sent and adding some creative magic with sound, sheets, and projectors, they created a virtual cat cocoon, making Merry seem just a little bit closer.

Watch Maga experience the Cat Immersion installation for the first time:

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Social Networks Serve as Source for Parents

As a medical resident, Dr. Ben Wilfond remembers working with a family whose baby had trisomy 21 (down syndrome).  He was with the physician when she first talked with the family about their new baby.  “She walked in, introduced herself, and the next thing she said was, ‘Congratulations on your baby,'” Wilfond said. The remark took him by surprise.  “As a resident, I could see the problems this child was having and I knew some of what was ahead for this family.  But the doctor did not deprive them of their celebration, and she chose not to focus on the fact that the child had a disability.”

This situation isn’t always the norm. Dr. Wilfond is a co-author of a new study published in Pediatrics that found parents with children with trisomy 13 and 18 have challenging encounters with health providers.  Children born with trisomy 13 and 18 have low survival rates and survivors have significant disabilities.  They have traditionally been treated with palliative care.  Read full post »

Cystic Fibrosis Researcher Christens Petroleum Barge that Bears her Name

Physicians and researchers can get any number of awards over the course of a career.  Landing a Nobel Prize is the tops, of course.  But Bonnie Ramsey, MD, received a different sort of honor this week.  She christened a petroleum barge in Portland that bears her name.  Dr. Ramsey is quite excited about the honor, even if it doesn’t seem very medically mainstream.   

Barge christening by Dr. Bonnie Ramsey“It’s a unique award,” she said.  “It’s not the sort of thing most people get, to have something that huge be named after you,” she said, with a smile.  Barges can measure more than 400 feet long, bigger than a football field.  A barge of this size carries more than 3.5 million gallons in fuel, too.

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Cancer Patient Raps “Look At Me Now” in Music Video

They say that humor can be great medicine and this rings true for 18-year-old Abigale Hamlin, a leukemia patient being treated in Seattle Children’s Hospital’s Adolescent and Young Adult Oncology Program. Abigale says that a good dose of laughter in her situation helps her to see and think of things in a different light.

Last year, when she first heard Chris Brown’s song featuring Lil Wayne and Busta Rhymes, “Look At Me Now,” her witty and creative nature took hold and her inner rapper emerged as she flowed to the beats with her own lyrics that described what she was going through, “Look at me now, look at me now, I’m losin’ hair-air, or I’m gettin’ che-mo.”

“I’m the kind of person who sings a song and puts my own words to it because I think it is funny,” says Abigale. “Then I thought, how funny would it be if I took the lyrics and made this song cool and funny in my own way!” Read full post »

Cancer Patients Sing Their Strength in “Stronger” Music Video

Saturday, May 5th, was unlike any other day on Seattle Children’s Hospital’s Hematology Oncology floor. The beats of Kelly Clarkson’s song “Stronger” rang through the halls as patients sang out the familiar chorus, “What doesn’t kill you makes you stronger…”

Doctors, nurses, parents and patients showed off their best dance moves while harmonizing to the tune with big smiles on their face. Patients held up signs with the words “hope” and “fighter” – all communicating the important message that they are strong.

This fun celebration of strength was thanks to Chris Rumble, a 22-year-old Children’s cancer patient who lives in Kent, Wash., who was recently diagnosed with leukemia in April. Chris had the idea to make a music video to share with his old hockey team in Wenatchee because his teammates had made him a music video for his birthday. Read full post »

5-month-old Receives Seattle Children’s 100th Heart Transplant

Despite being born premature at 30-weeks gestation, Rachel Robbins’ new baby boy Ethan was an extremely alert and cheerful newborn. But at three days old, doctors first noticed that something was not right with Ethan. He had a heart murmur. The cause, ventricular septal defect (VSD), a hole in his septum located in the middle of his heart. Due to the hole, when his heart would contract, Ethan’s aorta would become so blocked that blood could not get out of his left ventricle causing pressure on his lungs.

It was only one week later that Ethan developed congestive heart failure.  By the time he was six weeks old his condition had worsened so that doctors diagnosed him with hypertropic cardiomyopathy, a genetic condition that may have been inherited from Rachel that caused the left ventricle of Ethan’s heart to enlarge and thicken in utero.

“He began to have difficulty breathing, he was sweating, and had a greyish-blueish color in his skin,” said Rachel. “He was also sleeping a lot more than he should have been, and it appeared he was using most of his energy to breathe. I knew something was not right.”
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