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Doing What He Loves To Do

Patient Stories

 

Myles is not your average football player. A 16-year-old junior who plays right and left guard, Myles knows that winning — both on and off the field — is “just doing what you love to do.”

As a newborn, Myles was diagnosed with sickle cell disease, and the fact that he is playing football again this year is already a victory.

“If you go through adversity and the unknown to play a sport and still have the faith to keep fighting against the odds and succeed — it’s a true inspiration,” said Markus, one of Myles’ football coaches.

Myles has one of the more severe forms of sickle cell disease. As an infant, he had an abnormal TCD (transcranial doppler) ultrasound, which necessitated monthly blood transfusions. More recently, Myles developed chronic pain syndrome, leading him to experience daily episodes of pain with frequent severe exacerbations. He and his family practically lived at Texas Children’s Hospital, according to his mother, Tracy, an attorney in Houston.

“Since the 6th grade, he’s been hospitalized nearly every month for severe pain,” said Tracy. “Because of the number and duration of his stays at Texas Children’s, we have gotten to know many doctors, nurses and support staff. Myles loves the people who care for him. They know him by name, and he knows them.”

One of the people who cares for Myles is Dr. Venée Tubman, a pediatric hematologist at Texas Children’s Cancer and Hematology Center. She says that Myles is a bright light for everyone in the hospital.

“Myles has a great spirit,” said Dr. Tubman. “He’s a really good person. Even in times when I know he’s not feeling great or he’s really hurting, he’s able to be thoughtful about his care. He participates in his care, which helps the medical team understand how best to help him.”

Dr. Tubman’s sentiment was echoed by Myles’ teachers. 

 

“Myles is the epitome of a good sportsman, athlete and student,” Michael, one of Myles’ former teachers, said. “He represents all these qualities on the football field and in the classroom.”

But it hasn’t always been easy. Myles’ positive attitude is made all the more inspirational by the challenges he’s had to overcome. “He had to go on the Homebound Program twice,” said Tracy, “which was devastating for him; he had to quit football.” That’s why, win or lose, Myles is just grateful to be back on the field.

When offering advice to patients with sickle cell disease, Myles encourages everyone to stay positive and find their passion. “Just try to find something that you love to do,” said Myles. “Avoid anything that will make life harder. Because sickle cell disease already is hard to deal with.”

These days for Myles — along with playing football and spending time with his friends — that means cooking for his family. “My specialty is seafood — salmon or scallops,” he said with a smile.

According to Tracy, Texas Children’s Hospital has been instrumental in her son’s success. “Texas Children’s truly caters to children and makes them feel welcome,” she said. “The staff go out of their way to put a smile on their patients’ faces. They actually care! I dread the day when Myles ages out of Texas Children’s.”

She offered an example: “When he was in the 6th grade, Myles was diagnosed with opioid-induced hyperalgesia, a side effect of his treatment. A young anesthesiologist at Texas Children’s figured it out and found a way to alleviate Myles’ constant pain. After 30 minutes, my baby looked at me and said, ‘I’m not in pain anymore,’” Tracy recalled. “This was after six weeks of nonstop pain. There is nothing worse than seeing your child in pain. But through it all, Myles was so brave and so strong. He always is.” In the words of Myles’ football coach, “Thank you, Myles, for showing us all how to move forward and live your life and dreams to the fullest.”

September is National Sickle Cell Awareness Month. Learn more about the Sickle Cell and Thalassemia Program at Texas Children’s Cancer and Hematology Center.