Not only does 6-year-old Gabriel receive leading research and cancer care at Mary Bridge Children’s Hematology & Oncology Clinic for his acute leukemia, he gets top-notch fashion advice, too. Gabe prefers to dress up for his chemotherapy treatments, because he wants to be just like his doctor. On this particular day, Gabe came to his clinic appointment with a suitcase and several outfits to try and match what Mary Bridge Children’s Pediatric Oncologist and Researcher, Robert Irwin, MD, was wearing. They had a candid conversation about Gabe’s coveted “man tie” options for this day of treatment.
“In the past, only 20 percent of patients would survive Gabe’s type of leukemia. Now, the success rate is 85 percent. Gabe’s on a clinical trial with an exciting new medicine that we hope will continue to improve the success of our treatments,” says Dr. Robert Irwin.
Little Susie is now 3 years old with big bright eyes and the personality to match. At first glance, it would be hard to believe she suffers from Dravet Syndrome. This rare, severe form of epilepsy is very resistant to treatment and causes intense seizures that require frequent medical intervention.
Susie experienced her first seizure at 6 months old. Her family would have to adapt to many ambulance rides, emergency room visits, overnight hospital stays and numerous medications to save Susie’s life. In spite of all her treatments, her parents saw the light in Susie’s eyes slowly deteriorate into a droopy, blurry-eyed stare.
A trip to the Mary Bridge Children’s Hospital Emergency Department changed everything. During one of Susie’s 45-minute seizures, her parents met Steven Phillips, MD, the Mary Bridge Pediatric Epileptologist who was on call for emergencies the evening of Susie’s visit. He would soon recognize that Susie was a perfect fit for an epilepsy research study at MultiCare, for which he was the Principal Investigator. Results were quickly noticed.
Susie has now gone up to five weeks seizure-free, developed speech and her progress only continues. We hope the research we can contribute on behalf of Susie and the other participants will bring bright-eyed children around the world back to their parents.
Anna enjoys a seemingly normal, happy life. She is a full–time working mother, wife and daughter who enjoys activities with her family like hiking, camping and dinner gatherings.
Anna has battled migraines for over 30 years — migraines that can cause her to be stuck in bed for a week or longer until the pain subsides. Decades of dealing with this condition meant repeated attempts to find a cure and countless experiences lost with her family. However, in the community where Anna lives and works, a new source of relief emerged through research.
“I became interested in the study with hopes that the research collected would be able to help others,” explains Anna. Anna learned about the Research Institute’s neurology research program and opted to join a migraine study looking for an alternate treatment and hoping to contribute to research that might help other migraine sufferers. She is now able to take a promising new drug to treat her migraines. Thus far, her migraines are fewer and significantly shorter, which translates into more time to enjoy her family, her work and all the special moments in life. There may not be a cure for migraines, but behind Anna’s smile – and her story – is hope.
Riley is an active 10-year-old with right hemiplegia – meaning most of her life, she has struggled to use her right arm and leg. The muscles that control her ankle have a strong tendency to roll inward, creating instability of the foot and ankle together. This effect also creates an imbalance on her right foot, making recreational activities – such as soccer with her friends – even more challenging.
Riley has received “seasonal” therapy sessions to help her mobility at the Children’s Therapy Unit since she was 2 years old. After several years, research was able to give Riley and her family additional treatment through research. Riley enrolled in a clinical trial designed to improve gait and balance in children with hemiplegic cerebral palsy. Specifically, this study examines the effects of a device – GMES – which triggers stimulation to the muscles at the correct time during walking – taking into account foot contact, balance, muscle activation and gait.
The study required 24 weeks of commitment from Riley and her family – 12 weeks to develop a baseline and 12 additional weeks of intervention where Riley used GMES at home. The investment of time paid off quickly. Research staff and physicians noticed qualitative differences very soon after initiating the GMES device. They noted her ability to lift her right foot – improving walking, running and overall balance. Likewise, Riley’s mother saw changes 2 to 3 weeks into intervention. As a result of her improvements, Riley was able to play both soccer and softball while participating on the study. Friends and family also noticed her right calf muscle grew to almost the same size as the left. As a young girl in her pre-teen years, this muscle growth was especially important to Riley.
While participating on the study, Riley’s mom, Rashell, said she felt like she was simply receiving a higher level of care and never felt like a “test subject”. Riley’s care team had always been very focused on her treatments, but research gave them an opportunity to be hyper-focused. Staff stayed after hours to ensure her device was customized to properly fit her and met weekly with research staff to talk about progress. It felt like all eyes were on Riley. This gave Riley’s family an added level of confidence that they were doing everything they could to improve her quality of life. Reversely, Rashell felt like participating on the study was a way to give back to other kids with this condition as well as the clinical staff for all of their efforts to help Riley over the years.
To most of us, spending a few minutes relaxing in a hot tub is something we take for granted. For Darrylynn Penney, it was impossible. After taking part in a drug trial this past year, she recently recalled the sheer joy of relaxing in a hot tub for the first time in a decade. "Years of dealing with eczema has severely restricted my life in so many ways," she explained.
Darrylynn's eczema, known as atopic dermatitis, is not the occasional patches of dry flaky skin many of us commonly experience. Since birth, she has suffered from an extreme form of chronically inflamed skin. Darrylynn spent years consulting dermatologists and trying every known available treatment, from topical ointments to allergy shots and steroids. She tried to methodically identify any possible environmental triggers. "Nothing made a bit of difference," said Darrylynn. "Hypoallergenic, all natural, organic, paleo, no alcohol, meditation, avoiding exercise, direct sunlight or heat - you name it, I tried it."
While online, she stumbled upon a new drug trial actively recruiting participants with severe eczema to try an oral medication called baricitinib. Originally developed to treat rheumatoid arthritis, baricitinib was being evaluated to treat severe atopic dermatitis in study locations throughout the U.S. and Canada. Locally, MultiCare was participating in this initiative with Pace Dermatology.
Darrylynn is ecstatic about her experience. "My skin has gone through a dramatic transformation, and I now get to do things every day that I haven't been able to do for years - it's truly miraculous!" She is thrilled to be actively involved in the search for a cure for atopic dermatitis and hopes the research will benefit other patients with severe cases like hers. In fact, Darrylynn recently volunteered to continue on with the study.
Want to participate in a study? Call or email us.
Donations help benefit the "Greatest Needs Fund," which enables the Institute to invest in early stage medical treatments for adult and childhood diseases.