• A Fourth Opinion – and Limb Salvage Surgery – Saves Mahra’s Arm from Amputation

    Patient with Doctor and Nurse

    Mahra Saeed is at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center for her last checkup before heading home to the United Arab Emirates (UAE). The spunky 8-year-old sports a new dress and cowboy boots, and carries a large stack of thank you cards. She hands them out to oncologist Dr. Carlos Rodriguez-Galindo, nurse practitioner Annette Werger and other staff members, who try to contain their emotion as they read, “Thanks for helping me to fight cancer.”

    Mahra holding noteBack up 10 months ago to August 2014, when Mahra fell at the park in her hometown of Al Ain and fractured her right arm. An x-ray and biopsy revealed that right below the fracture, Mahra also had a tumor, which the family was told was benign. Mahra’s mother Nour got a second opinion in the UAE that confirmed the diagnosis.

    A month later, Mahra underwent surgery to remove the tumor and insert metal rods in the bone to help with growth. Nour was told her daughter would need a second surgery the following month to remove any remaining tumor.

    Days before the surgery, Mahra had a pre-operative scan that revealed the tumor had grown. Nour became very upset. “It was a shock. I asked the doctor, how could it grow if it’s benign? He took another biopsy and told me simply that it was cancer, and we needed to start chemotherapy as soon as possible. Then he just walked away.”

    To the U.S. for Another Opinion

    Frustrated, Nour called the UAE embassy in Washington, DC, and explained the first diagnosis was a benign tumor and the second diagnosis a month later was a malignant tumor. The family got approval to travel to a U.S. hospital, where they received a third opinion that Mahra indeed had a malignant tumor or osteosarcoma in her upper right arm bone. They recommended that Mahra’s arm be amputated.

    Far from home and already three opinions into their journey, Nour didn’t stop. “They told me the best option was to amputate her arm because they were afraid the metal rods could spread the cancer. How could I accept that they were going to amputate her arm? She’s a child. I hung up the phone, and I prayed a lot and kept thinking, ‘What should I do?’ I had a feeling that there was another solution. I had a feeling I should change hospitals.”

    Nour told the embassy she wanted another opinion and was given a list of four U.S. hospitals. She sent an email with her daughter’s scans to Dana-Farber/Boston Children’s asking for a second—or more accurately a fourth—opinion. She received word back from Dr. Megan Anderson, an orthopedic surgeon, that she could treat Mahra’s osteosarcoma with a combination of limb salvage surgery and chemotherapy.

    A Different Approach for International Care
    Dana-Farber/Boston Children’s International Patient Services helped the family prepare for their move to Boston, and soon after arriving, Nour and Mahra met with Anderson. Nour remembers, “It was not like at other hospitals, where the doctors were always saying, “Maybe, maybe.” Dr. Anderson was very sharp. She said, ‘I can do this.’ Her confidence in herself gave me confidence.”

    Mahra underwent surgery in January to remove the tumor as well as the metal rods, and replace the top part of her bone with a bone transplant or allograft. After months of chemotherapy and physical therapy, Mahra’s latest scan in May revealed she is cancer free and ready to go home to Al Ain.

    Before goodbye hugs and high-fives, Rodriguez-Galindo asks Mahra to lift up her arm one last time to show everyone how far she has come in physical therapy. Mahra wrinkles up her face and lifts up her arm. As her arm starts to shake, Mahra pushes further to the applause and cheers of staff.

    Seated in the corner, Nour quietly snaps photos of her daughter’s victory and watches her revel in the attention. “I never imagined something like this would happen. My daughters are the only things for me in this life. They give me strength. Thank God it worked out.”

    Nour wants to share her family’s story to encourage other parents to ask questions and seek out the best solution possible. “After what happened to me, I can now say, nothing is impossible. Nothing. Even if the doctor says it’s impossible, it’s not.”

    This story originally appeared on Boston Children's Hospital's Thriving blog.

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