• October 22, 2014

Brothers deal with sickle cell anemia each day

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Posted: Monday, January 21, 2013 4:30 am

Cameron Carter woke up attached to a heart monitor and oxygen machine. He didn’t know how he got there. All he knew was he had to use the bathroom and the nurse wouldn’t let him.

Every time Cameron lifted his body off the hospital bed, the nurse would say, “No, no, no. You have to sit down. You have to lie down.”

Two minutes passed. Then, a nurse ran into the hallway to seek help. A call for all doctors to report to his room was broadcast over the intercom.

“Before I knew it, there were five nurses in the room and doctors were on their way,” Cameron said.

One of the nurses asked him, “Is there somebody you’d like us to call?”

Then a teenager, Cameron didn’t know why they were asking, but told them to call his dad.

As David Carter rushed down the highway to his boy, Cameron lay speechless and motionless. Nurses and doctors crowded his room and checked for eye movement. Cameron’s primary nurse called his name, but all he could do was stare blankly in her direction.

“My dad walks in the room and he’s looking at me, and all of a sudden I feel tears coming down my face,” Cameron said. “But I couldn’t say anything. I’m just laying there with tears streaming down my face. That was the worst experience for me.”

His heart raced. Then it flatlined.

Finally, he woke up.

Maintaining illness

As jaundice builds up and Cameron’s eyes start to yellow, other people can sometimes see the toll illness takes on his well-being. But ultimately, visits to the ICU are unpredictable.

Cameron, 25, and his brother, Dominique, 22, were diagnosed with sickle cell anemia at birth. The genetic disorder causes their bodies to make abnormally shaped red blood cells that block blood flow, causing pain and potential organ damage.

“You understand that you’re going to be sick, so you try to prepare yourself by taking care of your body,” Cameron said. “But it’s something you really can’t control, so you have to learn to live with it and move on.”

Their lives revolve around staying hydrated and avoiding too much physical exertion. When their efforts to be cognizant of their health fails them, exhaustion and pain kick in.

Sometimes the stabbing and throbbing pain is in their elbows and knees. Other times, there’s a sharp sting in the lower back and chest.

Each episode is different, but whenever the discomfort heightens and the prescribed pain medication doesn’t work, the brothers know it’s time to rush to the emergency room for an IV drip, oxygen and blood transfusion.

Weeklong hospital visits become routine.

“You go to the hospital so many times that you don’t remember individual stays,” Cameron said. “There’s so much pain, so many times. It’s just like another day. You don’t remember just another day.”

All Dominique remembers of his worst experience with the disease is waking up in the ICU with a tube down his throat.

“How did I get here?” thought the confused teenager. “I was scared. I looked around and I saw my dad. ... I could tell he was crying. He was scared for me.”

At times, the pain gets too intense for Dominique; he feels like he’s dying. Although hospital visits are less frequent now, they still visit the emergency room often; sometimes as long as three weeks at a time.

“It’s anywhere from 10 to 12 times a year now. Sometimes at two or three in the morning,” David Carter said. “Every moment has been scary for me when they’re in the hospital.”

When his boys are healthy, their father cherishes the time he gets with them.

“I asked the good Lord for some children and he gave me children,” David Carter said. “When he gave me children, there weren’t any stipulations with it. I didn’t get any special privileges. I love and treat ’em with a firm hand and let them know that just because they have a small little crutch, that’s not going to stop them from living and doing the right things.”

Building life around disease

Dominique wanted to follow in his father’s footsteps.

“I was in ROTC and everything,” Dominique said. Growing up, he saw pictures of his dad, now a retired sergeant first class, while he was deployed to Iraq. Now a student at Temple College, Dominique is searching for a new dream.

The disease affects each person differently. For Cameron and Dominique, the illness impacts daily life and makes them rethink their ambitions.

They get tired quicker. As their hearts pump faster, more sickle-shaped blood cells are created, which puts them at a higher risk of pain and dehydration.

They eventually grew used to sitting at home while their friends played outside or went to school dances. But when Cameron found out he couldn’t join the Marines because of the severity of his condition, he was devastated.

“I knew if I couldn’t play sports that I wanted to join the military,” Cameron said. “At the time, we didn’t know that the military wouldn’t let us in with (a severe case of) sickle cell anemia. It kind of puts a damper on your whole mode of thinking.”

About a year ago, all those thoughts and emotions surfaced. Lying in a hospital bed, Cameron finally broke down.

“It didn’t seem fair to me that all of these opportunities were out there and they’re given to people who don’t have sickle cell,” Cameron said. “These people can go into the military. They can play basketball or they can hold onto their steady jobs because they don’t get sick and they don’t have to be hospitalized for a long time.”

Support system

When he was little, Dominique remembers people telling him he wouldn’t live past 25.

“As I’ve grown, I’ve met people who are 45 or 50-something who have sickle cell and they’re still living,” he said.

But he’s also made friends, like Roderick Guice, who died from the disease at 22.

“He just didn’t wake up one day,” Cameron said. “It affects you because you have that same disease and you think, ‘Oh, that could be me.’”

The two brothers have each other to lean on when they go through rough periods with the disease.

“He knows how you feel,” Cameron said of Dominique. “It’s not someone distant that you don’t know. It’s my brother — a guy I grew up with. He goes through the same type of pain that I go through.”

The two understand one another and experience similar fears.

Cameron tries not to let his uncertain future plague his mind, tries to have a normal life and tries to bury the thought of dying. But the possibility of the disease taking his life without notice always lingers.

“Sometimes I’ll be alone at my house and I just get into deep thought about the illness,” Cameron said.

Dominique constantly reminds himself he’s just like everyone else.

“You just keep telling yourself that you’re not going to let it affect you,” he said. “Just try not to really think about it and say you’re normal.”

Support the cause

The 30th annual sickle cell anemia telethon will air from noon to 6 p.m. Sunday on Fox 44. Sponsored by the Central Texas Sickle Cell Association, the funds raised will help provide services and support those suffering with the disease.

Residents can drop off donations at the Shilo Inn, 3701 S. W.S. Young Drive in Killeen, or Fox 44 Studio, 8803 Woodway Drive in Waco, donate online at www.centexsicklecell.org/donate.html, or call the number on the screen during the telethon.

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