A teenager works to kick kidney disease

At 17 years old Melika Roberts has had 49 surgeries.

Some have left her hospitalized for weeks, and others have been quick procedures. But every time she is “put to sleep,” she adds another number to her count.

She hopes her 50th will be her second kidney transplant, and the last surgery she will need.

The Chestnut Hill resident was born with only one kidney, and it wasn’t working properly. Born in Los Angeles to a mom with deep Germantown roots, Melika has been in and out of the Children’s Hospital of Philadelphia since she was 3, though she and her parents didn’t move to the city until she was 5, to be close to the hospital and their family.

Like most teenagers, Melika loves going to the mall and watching funny movies with her friends – and plenty of other normal “teenage stuff,” as she calls it.

But in February, seven years after her initial kidney transplant, Melika went into renal failure again.

“We got that feeling of ‘oh no,’” remembered Gail Ramsey, Melika’s aunt.

This put Melika back on the long list of people waiting for a kidney. To avoid feeling helpless about it Ramsey thought of using a kickboxing class as a way to raise money and empower others who were going through the same thing. She pitched the idea to her kickboxing instructor, Betsy Cast, who immediately agreed. Although Melika was relatively new to kickboxing, she loved the idea of building a fundraiser around a exercise she thinks is pretty fun.

Melika and others started planning, and Kidney Kicks was born.

Kicking it

People of any exercise level or age are invited to attend the fundraiser in honor of CHOP patients. The event will take place on Saturday at the AFC Aquatic and Fitness Center in Bala Cynwyd at noon. Several businesses, such as Winnie LeBus, Peace Love World and Chef Ken’s Café, her father’s business, have given favors for participants as gift bags.

The hour-long session is $17, which was chosen because of Melika’s age. All of the proceeds will go to CHOP. Melika wanted the money to either benefit the nephrology or transplant department. Ultimately, she chose nephrology, where she has spent much of her time at the hospital.

“It will help them find a reason why these kidneys are failing, and keep… people off dialysis.” Melika said, as she sat in the office at Wister Neighborhood Advisory Council in Germantown, where her mother, Debra White-Roberts, works.

There, she recounted the night of October 31, 2004, and a feeling of relief she would like to help others in her situation attain.

Cheerleader

Melika was a cheerleader that Halloween, but she was long in bed when a 2 a.m. phone call from her father woke her.

“They said they found a kidney for me,” Melika recalled. “My mom thought my dad was going crazy.”

She arrived at the hospital at 4 a.m. dressed in full cheerleader regalia. When she was put under anesthesia for the eight-hour procedure, she started singing a song from the Disney TV show “That’s So Raven,” as her family would later hear from the doctors.

The kidney was a perfect match, but it came from a cadaver and these are expected to last just 5 to 10 years.

After the surgery, which took place only a few days before her birthday, she was doing well.

“I was OK for a long time,” she said. “I fattened up a little.”

She took as many as 24 pills a day – anti-rejection and blood pressure medicine, to trick her body into believing it was really her kidney on the job.

Between 2008 and 2009, Melika was okayed to travel. One of her aunts worked as a travel agent and she made sure not to miss the opportunity. She soaked up the sun in Aruba, Barbados and Hawaii, and after her move back to her mother’s native city, she attended Bishop McDevitt High School in Wyncote.

She completed her entire freshmen year, but could only do part of her sophomore year before she started getting sick again. Her new kidney was starting to have trouble filtering out the protein creatinine from the blood, and the levels started to fluctuate.

Milestones

On Nov. 7th, 2009, she celebrated her 16th birthday. The whole family thought it was an important milestone, but she had to let her mother know she wasn’t feeling well. The next day, she was in the hospital with an infection.

Her friends were in disbelief. They came to visit her with a disco ball and music to keep the birthday party going. But her health worsened with nausea and fevers, and by January 2010, she had to go into the hospital again. She found out her creatinine level was 11.2. It is never supposed to go above 10.

Her kidney was no longer working at all, and she was severely dehydrated, which made it difficult to find a vein. The doctors tried to give her fluids, but she ended up losing blood as a result of her illness.

“In the process, I lost so much blood,” she said. “I was loosing blood while they were giving me blood.”

It was a rocky period of surgeries – she even woke up during one procedure because it was taking so long. Doctors eventually installed a catheter in her body for dialysis, something she had always feared.

“We thought she was doing better,” Debra White-Roberts recalled. “She always looked good. [The doctors] tried to [hold off] as long as they could.”

Melika was desperate to avoid dialysis. She asked if there was anything she could do to get around it but learned that decision was out of her control.

Regrouping

Now officially in renal failure, Melika was on dialysis earlier this year.

In 2004, her family was tested to see if any of them could donate a kidney to her. She learned her father was a perfect match, and he was scheduled to donate when they got the call about the kidney Melika now has. Everyone was tested again this year, and her father is no longer a match because of the drugs she had to take to accept the other kidney.

“It like changes everything inside you,” Melika said about the side effects.

Her mom is still a close match, but not perfect. They are about six weeks away from finding out if she can be a donor. The family is also looking into a cross-matching program, which would allow White-Roberts to donate to another child, and that child’s family member would donate to Melika, if testing worked out.

White-Roberts also thinks it’s important to bring awareness of organ donation to African Americans, and she hopes Melika’s story and Kidney Kicks can help with that. One of the myths she wants to dispel is the idea that if people agree to be an organ donor, doctors won’t try to revive them in life threatening situations.

“Organ donations, tissue donations are such a stigma in the African-American community,” she said. “They don’t think [doctors will] do all they can to help them.”

Currently, White-Roberts takes Melika to dialysis Mondays, Wednesdays and Fridays for more than two hours each day. Melika isn’t allowed to travel very far because she needs to be able to get home in 24 hours at any given time.

She wears a beeper now that notifies her if a new kidney is available. So far it has gone off a few times, but the organs have not been perfect matches, and have gone to help other children. Other times it goes off because the beeper’s battery is low.

Over the Memorial Day weekend, she made the trek to Atlantic City, which she says is basically the farthest she can travel these days.

New outlook

After starting dialysis, Melika says she feels as good as she looks.

“They were right,” she said of the doctors’ decision to make her do the thing she so wanted to avoid. “I do feel a lot better. I used to be really tired.”

Now, she also takes less medicine, about nine pills a day. Talking about it makes Melika remember how hard her mother worked to get her to take her medicine early on when she took it in liquid form.

“She put it in everything she could think of,” Melika says, smiling. “It was just nasty. I will never forget them pancakes.”

“They told me they couldn’t taste it,” White-Roberts responds, laughing so hard, she had tears in her eyes.

Same spirit

Along with planning the Kidney Kicks fundraiser on Saturday, Melika is looking to her future. She has been enrolled in Connections Academy, an online school, for the past year and a half, but she is determined to go back to high school for her senior year. Eventually, she plans for a career in the medical field.

Until then, she never feels sorry for herself, she says. Instead, she finds plenty to enjoy – like being the only girl among a family of close cousins – a rose among thorns, as she thinks of it. Sometimes that means being spoiled, she laughs.

And her credo for this phase of her life? Because it is ‘just a phase,’ she knows that much. Her outlook isn’t far from what that little girl in the cheerleader costume was thinking all those years ago.

“I’m always in good spirits,” she says. “There’s a kidney out there.”

 

The Kindney Kicks fundraiser will be held Saturday, June 4 at 12 p.m. at the AFC Aquatic and Fitness Center, 601 Righter’s Ferry Way, Bala Cynwyd. All are welcome.

Donations are being accepted at the CHOP website. As of June 1, the total is $260 toward a goal of $1,000.

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