She had her leg amputated and 14 rounds of chemo by age 3 — now she plays varsity basketball | 2019-01-23

She had her leg amputated and 14 rounds of chemo by age 3 — now she plays varsity basketball

The Washington Post

23rd January, 2019 11:01:06 printer

She had her leg amputated and 14 rounds of chemo by age 3 — now she plays varsity basketball

She had her leg amputated and 14 rounds of chemo by age 3. Now she plays varsity basketball.

 

In her first game as a junior varsity basketball player last season, Amanda Merrell absorbed contact from an opponent and fell to the ground. The gym felt silent. Players on the opposing team, worried she was hurt, quickly helped her up.

 

When Merrell fell again, they helped her up again. But after Merrell drained three straight baskets, no one from the other team came when she fell the next time.

 

"When she fell the third time, a girl actually stepped over Amanda instead of helping her. It was so funny," said coach Kevin Jones of Huntingtown High School in Maryland. "They realized 'We're not going to help this girl anymore. She's good to go.' "

 

From the waist up, she carries herself just like any of her teammates. Look down though, and it's easy to be amazed by the 16-year-old. When she shoots, instead of setting both feet like most players, she puts her right leg in front of her body and jumps only with that leg. When she runs, she kicks out her left leg sideways as if she's drawing a circle with her foot.

 

That left leg? It's a prosthetic.

 

It doesn't bend at the knee, but that didn't stop her from leading her junior varsity team in scoring last season, averaging nearly 10 points per game. It limits her lateral movement on defense, but she earned a promotion to the varsity this season and has, according to coach Jennifer Shoup, "textbook-form shooting."

 

She is a bench player for Huntingtown, a public high school with an enrollment of about 1,400 in Calvert County, Maryland, but she has an outsized impact that extends beyond the court. She is often approached after games by total strangers who simply want to thank her. One opposing coach asked if she would come to his school as a motivational speaker.

 

"You have to look at the positive sides and not look back," she says. "Just focus on what you can do now and try to persevere through it."

 

- - -

 

Amanda was a healthy 10.5-pound baby, the third of four girls. She developed like a normal toddler until her parents, Suzanne and John, spotted a bruiselike lump, with a diameter as wide as a lemon, on Merrell's upper left calf not long after she had turned 2. An active baby, her parents and doctors thought it was nothing serious. Then doctors gave her an X-ray on the Friday before Fourth of July weekend in 2004. The Merrells received a call the following day that she was to see an oncologist at Children's National Medical Center in Washington.

 

There was nothing routine about the lump, they were told.

 

"I remember he was like it's either this, or this, or this," said John Merrell, an IT Director at Saleen Automotive. "I didn't know the names of any of those things he had said. Because he mentioned a tumor, I asked which of those three are benign."

 

None of them, the doctor said.

 

A few days later, Amanda was diagnosed with Ewing's Sarcoma, a rare cancerous tumor that grows in bones or soft tissue around bones. According to the American Cancer Society, the cancer occurs more commonly among older children and adolescents than young children. In fact, in the past 30 years, the incidence for all ages is one case per 1 million people in the United States, with the median age of patients at age 15, according to National Cancer Institute of National Institutes of Health.

 

"Once they determined it was Ewing's, it was a rush to get started on the chemo because it's so deadly," John Merrell said. "If it started spreading, it's a lot less manageable."

 

The doctors drilled holes in different parts of Amanda's body to ensure the cancer hadn't spread. Then she went through six rounds of chemotherapy with about two weeks between each session. To be certain the cancer had left her body, the doctors said they needed more than chemotherapy.

 

"I'll never forget it - November 1, 2004," Suzanne Merrell said. "The amputation was November 1."

 

"I told her they're going to take away your sick leg and you'll get a new leg," John Merrell said. "You never know how they're going to react because she's so young. I told her you're going to run like your sisters, and she just lit up. She was so happy."

 

 

Merrell told all the nurses in sight that she was going to get a new leg and kept confirming the news with her dad before the surgery.

 

"I'm going to get a new leggy, right daddy?"

 

According to Nita Seibel, an oncologist at Children's National Medical Center who developed Amanda's treatment plan, the biggest issue related to her treatment was her age.

 

 

"Normally, when this occurs in an adolescent patient or a young adult, orthopedic oncologist can do what's called a limb-sparing procedure where they remove the tumor. Then, there's a big gap after you take the tumor out and you put in a prosthesis," she said. "But in Amanda's case, that wouldn't have been feasible because the growth potential was so great."

 

In most amputation procedures, doctors will remove the limb either above the knee or below. But her doctors decided to go a different route.

 

"She is the youngest patient I've had with a Ewing's Sarcoma," said Robert Henshaw, director of orthopedic oncology at Children's, who performed Merrell's amputation. "Looking at her imaging, we realized that by going through the knee joint, we could actually save the growth plates in her distal thigh to give her remaining upper leg a chance to grow and develop."

 

Ultimately, Henshaw and his team amputated through her knee, preserving the femur but not the kneecap or the joint. By the time Amanda turned 3 in April 2005, she had also completed 14 rounds of chemotherapy.

 

Amanda said that she doesn't have any recollection of the surgery or its aftermath, which her parents consider a relief. She only has a flash of memory of doctors and nurses bringing her a cake and presents for her third birthday.

 

"What she went through, that was the only thing that kept me sane - that she wasn't going to remember it," John said.

 

- - -

 

Amanda's lack of memory doesn't mean she didn't go through trials. With a new prosthetic leg, she had to relearn how to crawl and walk. She received her first prosthetic when she was 3 and has been getting a new one once or twice a year as she continues to grow, each of which cost around $20,000. She got her latest one just four months ago. She also owns a second prosthetic, which she uses for non-running activities.

 

When she was little, other kids would poke her prosthetic and call it a monster leg. In middle school, a referee once prevented her from playing in a soccer game because her prosthetic was deemed "dangerous." And she still gets stares in public.

 

"I had it my whole life. I don't really hide it. I just embrace it," said Amanda, who decorated her prosthetic leg in a pink camouflage pattern. "It would be nice if they don't stare. If they do, they'd be wondering what happened, then I just share my story with them. I don't really mind them staring."

 

She has grown accustomed to the staring just as she has gotten used to opponents telling her she doesn't belong on the field or court with them. She uses that as a fuel to prove them wrong.

 

"There was one girl from the other team who told one of my teammates that I shouldn't be playing and I should just sit on the bench," Amanda said coolly about a middle-school soccer game. "I scored the winning goal."

 

Now, she leads a fairly typical life for a 16-year-old. She got her permit last year and is waiting to get a driver's license. She doesn't like that she has a double-block period of math class in the morning. She is beginning to think about colleges.

 

Outside of academics, Merrell has played field hockey, lacrosse and basketball, her main sport, for both Huntingtown and Damascus, which she attended before coming to Huntingtown in 2017. She has a knack for coming through in the clutch, and has made multiple game-winning shots in her athletic career, she says.

 

"I watched her game and never even noticed it. It didn't slow her down. It didn't bring any attention to her," St. Mary's Coach Chuck Miller said after losing to Huntingtown in a holiday tournament final last month. "It doesn't get any better than that in my opinion. To me, it takes guts to go out there and be out there. And that little girl who I've never met, to me, shows incredible fortitude."

 

Amanda participates in various fundraising events to raise awareness for patients going through similar experiences at Children's. She shares her story and sings her favorite song "Stronger (What Doesn't Kill You)" by Kelly Clarkson. She's appeared on radio shows, cereal boxes and posters on buses, encouraging people to donate to the hospital.

 

But the thing that drives her remains sports. Her dream is to play college basketball. "Sports is literally my everything," she says.

 

Shoup said that competing in Paralympics is a viable option, if she desires. Amanda's parents said their daughter has shown interest, but for now, she's trying to be a more consistent rotational player for the Hurricanes. It's just another challenge to overcome.

 

"Even though something like a life trial gets you down, you just got to push through it," Merrell said. "Even though anything cuts you down, you just got to rise up and overcome anyone or anything that tells you different."

 


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