Sending A Child With Sickle Cell Disease Off To College
Editor's Note: WUNC Race and Southern Culture Reporter Leoneda Inge shares a personal account of her son, Teemer Barry, and his journey navigating sickle cell disease during his first year of college.
Sickle cell disease afflicts about 100,000 people in the United States, many of them African Americans. It is an inherited blood disorder that can cause frequent infections and chronic pain.
It's a disease that hits home for me and my family. My youngest son, Teemer Barry, was diagnosed with sickle cell disease when he was a baby. This past fall, he went off to college. Most importantly, Teemer has had only one serious pain crisis.
Going away for school while nursing a critically-ill disease can be especially hard for a young student. The goal is to help devise a care plan of independence that will hopefully lead to college graduation. -Leoneda Inge
Going away for school while nursing a critically-ill disease can be especially hard for a young student. The goal is to help devise a care plan of independence that will hopefully lead to college graduation.
I have been recording my son's health and happiness all of his life. Teemer has always loved school, but hit his stride in the fourth grade at Morehead Montessori in Durham.
"It’s cool! My favorite class is Social Studies. A, Mr. Halpin teaches it. B, it’s fun because he makes jokes," Teemer said in a squeeky, litle boy voice.
When Teemer was young, I had to be diligent about asking him how his day had gone. I learned if I didn’t ask, he wouldn’t tell me if his arm hurt, his legs hurt or his chest. That would mean staying home from school, and Teemer loved school. People with sickle cell disease have sickle-shaped cells, not round ones, making it hard for blood to flow. That, in turn, causes cramping, awful pain, and worse.
The family game plan was to keep Teemer’s head in the books. And Teemer was an early reader.
“What kids like. Kids like to play. It feels good to play. Kids like to sing. It feels good to sing. Kids like to read. It feels good to read," Teemer reads into the microphone.
Teemer loved to run and play, but he was never going to be a "baller" because his body could never take what organized, competitive sports activities would demand.
Every few months of Teemer's life, his body would fail him. Sickle cells would clump up in a part of his body creating much pain. On a cold February night last year, Teemer curled up in my bed unable to sleep or eat. His legs could no longer get him up the stairs to his bedroom.
"My upper right leg, giving me a hard time. Awe. It feels pretty bad," moaned Teemer.
We eventually found out, that upper leg pain was avascular necrosis which is widely defined as "death of bone tissue due to a lack of blood supply." The lack of blood circulation in Teemer’s hips is directly related to his sickle cell disease.
This particular pain crisis was three months before graduation from Durham's Jordan High School, and four months before it was time for Teemer to arrive at the University of Maryland – Eastern Shore. He was selected for a special summer program at UMES in the Geosciences, before officially making Princess Anne, Maryland, his home for the next four years.
There was no turning back. Despite any impending pain crisis, Teemer was experiencing independence and freedom, a couple of state’s away.
"It looks nice. There’s a comfortable feel to it," Teemer told me while moving into his dormroom. "I guess what makes it really good is the people of all."
About a month and a half after move-in, Hurricane Florence began to churn off the east coast. North Carolina would be hit the hardest, but the effects of the storm were also felt in Maryland, Delaware and Washington, D.C. Teemer’s body and blood flow always knows when a storm is coming.
I had to close my eyes while Teemer explained running across campus to his Biology Lab, in pain.
"I remember I ran, and once I got there my lower back and my stomach and chest and like legs and stuff, started like hurting," said Teemer, on a recorded phone call. "My chest felt tight, and I just didn’t feel good at all.”
Teemer had to excuse himself from class to vomit. As a mom, I fear he is neglecting his body. He's taking his strong pain relief medicine, when his stomach can bear it. But he’s not taking his Endari. That’s the newest sickle cell drug approved by the Food and Drug Administration, the first of its kind drug approved in 20 years.
"I mean, I understand that it reduces the intensity of pain crises, sometimes I feel that classes are more important, and managing my time. I don’t know," said Teemer on the call.
But I was not having it. I know if Teemer does not manage his pain he can't go to class and students who don't go to class often have bad grades and never finish school.
Teemer agreed, "Yeah, I get it.”
Another person who is encouraging Teemer to take his meds, rest and stay hydrated is his longtime Pediatric Hematologist Rupa Redding-Lallinger at UNC Medical Center.
"It comes in those little packets because different size people get different doses, different numbers of packets. It’s not convenient, I realize that," said Redding-Lallinger, referring to Endari. "It's the medicine that we have."
Redding-Lallinger was Teemer’s pediatric hematologist for most of his life. Ironically, she retired at the same time Teemer left for college. She says there is a critical fact about sickle cell disease all parents should know.
“You know, the possibility of getting sick is always there and that depends on a lot of different things," said Redding-Lallinger. "This is an unpredictable disease. You can be doing everything right and still get sick.”
Teemer was diagnosed with Hemoglobin SC shortly after he was born. He is blessed he doesn’t have the most severe form of sickle cell disease. He’s never had to spend a lot of time in the hospital, has had no blood transfusions, and has not been recommended for a bone marrow transplant.
My son is also blessed becasue a long-time family friend is an administrator at UMES. Rondall Allen is the dean of the School of Pharmacy and Health Sciences. And "Ronnie" has already found Teemer a doctor in nearby Salisbury, Maryland.
Now I can sleep well, and Teemer, a UMES Hawk, can fly.