Tuesday, November 8, 2011

Finding Home in a New World

Multidisciplinary Care Team Rallies Around Rwandan Patient

Claudine and Dr. Ebb

Claudine's Story in Photos

Claudine with hematology-oncology specialist David Ebb, MD, who led her care team. View a slideshow of Claudine's experience at MassGeneral Hospital for Children.

Claudine Humure had never flown in an airplane. Her flight to Boston from Rwanda was one of many firsts for the then-12-year-old. As the landscape changed below her, Claudine recognized that her life was changing in a bigger way.

“Everything was so new; I was in a new world or something, that’s how I felt,” she says. “It’s like the world was changing and I was like looking at the world change and it kept changing and changing.”

At the time Claudine had osteosarcoma, a bone cancer that typically afflicts children. The cancer was in her right tibia, the large bone below the knee, but doctors in her home country, Rwanda, didn’t immediately recognize it. Claudine received treatment for infection.

“I had cancer, but there was nowhere I could be treated because I had already been to three different hospitals,” she says. “By the time they found out that I had cancer, there was no way the leg could be saved.”

Doctors in Rwanda amputated Claudine’s right leg, but the cancer had already spread into her lungs. Doctors from Partners in Health (PIH), a Boston-based nonprofit organization, discovered Claudine, who was living in a Rwandan orphanage with her brother and sister. Recognizing the gravity of her situation, PIH recommended Claudine be sent to MassGeneral Hospital for Children (MGHfC).

Getting Better

Upon landing in Boston, Claudine was immediately admitted to MGHfC, where the next day she started treatment that continued for the following 11 months.

“I was ready to get better,” Claudine remembers.

Claudine underwent a series of treatments, including a revision of her amputation. Orthopaedic oncology surgeon Kevin Raskin, MD, performed the surgery, adding more skin tissue to cover Claudine’s bone so she would be able to use a prosthetic leg. Claudine’s care team, led by hematology-oncology specialist David Ebb, MD, treated the cancer with eight months of chemotherapy and surgeon Daniel P. Ryan, MD, removed two cancerous nodules from her lungs in an advanced procedure known as a video-assisted thoracoscopic surgery (VAT).  

“The care she needed wasn’t available or would have been very difficult to get in Rwanda,” Dr. Ebb says from his office, where a photo of him and Claudine hangs beside his desk. “Without the multidisciplinary care she got, she would’ve died.”

Many people rallied around Claudine to ensure her recovery. Ebb adds, “Multidisciplinary care was much more than chemotherapy and surgery—it is all the people who took care of her and helped her.”

While Claudine adjusted to rigorous cancer treatment, she also learned to communicate in English, through a combination of sign language, a cheat sheet of written translations and time spent with the O’Flahertys, the South Boston family who hosted Claudine.

“She was so sick,” says Catherine O’Flaherty, who with her husband and children became family to Claudine. “I took care of her, we took her through surgeries, chemo— the kid ran the gamut and no matter where we turned at Mass General, people were incredible.”

O’Flaherty remembers telling Dr. Ebb that Claudine needed crutches: “He got up, he walked out, he came back with crutches.” When Claudine’s hair began falling out due to the chemotherapy, one of the nurses arranged for Claudine to have her head shaved.

Winning Hearts

Claudine’s infectious smile and optimism won the hearts of staff at MGHfC. She became especially close with her nurses, Sandy Pugsley, Janice Erlandson and Carly Jean-Francois; the child life specialists including Sacha Field, and music therapist Lorrie Kubicek. 

“I always like to say Claudine has a lot of mothers, including the nurses,” O’Flaherty says. “They’re amazing.”

“I loved the hospital very much,” Claudine says. “It was nothing like the hospitals in Rwanda and they had really good care. The people were so caring. Every time I went for more treatment it felt like I was going home or something.”

For staff, the feeling was mutual, says child life specialist Field. “Everybody literally fell in love with her when they met her. She just handled things with such grace and strength, she was unlike anybody else that you’ve ever met,” Field says.

Claudine tests her prosthetic leg

In Rwanda she had been walking with the help of crutches, but Mass General specialists assembled a prosthetic leg for Claudine from spare parts they had on hand.

Though Claudine had occasionally played guitar in the orphanage in Rwanda, taking cues from her brother and others, Claudine learned to play the guitar with music therapist Kubicek, and even performed a concert for the MGHfC inpatient unit at her farewell party.

Claudine also reached milestones in her treatment, including the day she got her prosthetic leg. In Rwanda she had been walking with the help of crutches, but Mass General specialists assembled a prosthetic leg for her from spare parts they had on hand.

Claudine remembers the day her specialist walked into her hospital room, holding the leg. Doubtful but willing, she tried it on.

“I was like, wow, I am standing,” she says. She worked with Physical Therapist Edgar Savidge, PT, DPT, OCS, to build up strength and balance, to the point where she could kick a ball. Years later when the prosthetic broke, Savidge reached out to Next Step Orthotics and Prosthetics, whose specialists created a prosthetic for Claudine free of charge. Claudine says of her prosthetic, “I love it; I can do many things with it.”

Toward the end of her treatment, Claudine traveled to Hawaii on a grant from the Make-a-Wish Foundation. As part of the trip, Claudine rode a horse for the first time, an activity she would revisit.

“The way they treated Claudine, it was never any different than any other kid and she got the best care and whatever she needed regardless, and to me that was pretty outstanding,” O’Flaherty says of the MGHfC staff. “She’s living a great life today as a result of that care.”

Standout Return

Claudine’s return to Rwanda in June 2006 created quite a stir. “You should have seen the kids, when I went back to the orphanage— they couldn’t believe it was me,” she says with a laugh. “I was really, really skinny when I left them and when I went back I was all healthy and I had a prosthetic leg and I wasn’t using crutches anymore.

“They all came out and surrounded me and were looking at me like I was some new person from another planet,” she adds.

Claudine today

Today Claudine has taken up horseback riding and joined the swim team. Here she stands in front of the stables at her school in Wellesley, MA.

Back in her English-speaking school in Rwanda, Claudine was a clear standout. Her English-language abilities had surpassed even some of her teachers’. She had a feeling she would return to the U.S., and the opportunity presented itself when, with help from a doctor she met through Partners in Health, she returned on school scholarships. Claudine attended a year of high school in Greenwich, CT, followed by her current scholarship at Dana Hall School in Wellesley, MA, where she is a junior.  

Today, Claudine is exuberant and healthy. At Dana Hall she has taken up horseback riding and joined the swim team. She still plays the guitar and writes her own songs, but she insists she sings them only for her close friends.

Claudine keeps in close touch with many of her MGHfC caregivers and the O’Flahertys. Child life specialist Field and her colleagues visited Claudine recently. “She’s worked so hard to get where she is,” Field says. “She was a girl when we were treating her now she’s this beautiful young woman who is so dedicated to her studies and determined to make a difference in the world.”

Claudine’s eyes shine as she speaks of her present and future endeavors, including a possible career in medicine.

“If I become a doctor, I’m going to work with Rwandans in Rwanda,” she says, sitting in a lounge at her school. “I still want to be able to come here, but I want to help people in Rwanda because I know how it is in the hospital in Rwanda. They need me,” she adds. Claudine says she is also considering becoming an architect.

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