It's About Children - October, 2019
Thicker Than Blood
By Madison Murray
Bryan has considered East Tennessee Children’s Hospital to be his second home since he was just six weeks old.
Bryan was born with sickle cell anemia, a disease that causes blood cells to be curved instead of disc-shaped. Despite living with constant pain and having frequent blood transfusions, Bryan won’t let sickle cell slow him down.
“What Michael Jordan is to basketball is what I am to sickle cell anemia,” says Bryan.
The 15-year-old has received more than 15 blood transfusions and had his spleen removed when he was just 2 years old. Throughout his 15 years of treatment, Bryan calls the people at East Tennessee Children’s Hospital his family.
“I don’t like sickle cell anemia, but I love Children’s Hospital,” he says.
Everyone who has taken a part in Bryan’s care has done everything to make sure his only concern is being a kid.
Bryan’s mother, Trista says, “We have had some of our worst days here, but East Tennessee Children’s Hospital has lightened the load.”
Living with sickle cell brings constant pain and discomfort, but Bryan always has a smile on his face and has a gift for making others feel welcome. The teenager loves basketball, playing with LEGOS, and participating in his high school band. In the past two years Bryan has had to refrain from physical activities because of recent hip replacements due to the disease. This setback, he says, is only temporary.
This year, Bryan was chosen as the 2019 Children’s Miracle Network Champion.
East Tennessee Children’s Hospital has partnered with CMN to raise funds and awareness for sick and injured children in our community since 1983. Bryan will be featured in regional CMN campaigns as a spokesperson for Children’s Hospital and sickle cell disease. One day he hopes to return to Children’s Hospital as a nurse to help kids like him.
A Dream Unfolds
East Tennessee Children’s Hospital cancer patient Trinity recently got the surprise of her life from her favorite music artist.
Trinity, a teenager battling bone cancer at East Tennessee Children’s Hospital, has been in treatment since the beginning of the year.
In August, Trinity celebrated the release of Taylor Swift’s 7th studio album, Lover, by decorating her hospital room with lyrics and posters. Children’s Hospital nurses and Child Life specialists joined the party in Trinity’s room by painting their faces and dancing in the hallways.
Taylor Swift fans across the U.S. were celebrating the album’s release by posting pictures on social media and tagging Swift. Trinity did the same, and local news outlets also shared her story. Trinity’s Taylor Swift party got so much coverage that she felt like a celebrity herself, but she never imagined what would happen next.
On the morning of September 5th, Trinity woke to discover someone had donated $10,000 to her personal fundraising page (which her family created to help offset the cost of staying in the hospital for almost a year during Trinity’s treatment).
The donor left a message:
“Trinity, I saw photos of your album release party that you did in your hospital room and wanted to say thank you for being so kind and supportive! I hope I can give you a hug in person soon, but in the meantime [sic] I wanted to send you this and all my love. Your friend, Taylor.”
That's right, Taylor Swift.
"If Taylor comes to see me, I don't know what I'll do," Trinity says.
The pop singer is a role model for Trinity who said it's her kindness that makes a difference. When Trinity gets older, she wants to be a nurse just like the ones who made a difference for her.
Trinity continues to fight her cancer, and she is expected to complete her treatments this fall.
SOAR Takes Sickle Cell Patients to New Heights
Children’s Hospital’s new Sickle-Cell Outpatient Assessment and Rehabilitation (SOAR) Clinic allows more focused, multi-disciplinary treatment and better ease of access to families battling the rare blood disease.
SOAR Clinic provides Children’s Hospital hematology patients with sickle cell anemia with a comprehensive visit once-a-month. Having a dedicated day allows the team to focus and our families to have a greater sense of support and community with each other. Doctors will have the ability to see their patients and then refer them to other subspecialists (such as cardiology, dental, ophthalmology, neurology, nephrology, physiatry and psychology) as appropriate -- all on the same day. Ancillary team members (such as registered dietitians, social work, child life and chaplains) will also be available to meet each families’ needs.
Having a sickle cell clinic allows this special patient population to receive the family-centered, comprehensive treatment they need without having to compromise their lifestyles, so kids like Jonavin can spend less time feeling sick and more time playing.
Visit our Hematology/Oncology page for more information.