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.
“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 »
August 20, 2012 | Patient Stories, ResearchComments Off on 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.
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:
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 »
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.
“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.
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 »
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 »
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.” Read full post »
Seattle Children’s provides healthcare for the special needs of children regardless of race, color, creed, national origin, religion, sex (gender), sexual orientation or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.