August 28, 2019
On July 27, 2017, 10-year-old Alexander Goodwin and his parents, Jeff and Maria, joined Vivian Jennings and her staff from Rainy Day Books at Unity Temple on The Plaza to celebrate the release of "Alexander's Journey: Dum Spiro Spero" (the 3 words are Latin for "while I breathe, I hope"). Jeff's book and DVD tell the story of Alexander's journey from Lutterworth, England, to Kansas City and The University of Kansas Cancer Center. The event was a blessing for the family who, barely 18 months earlier, were unsure whether Alex would see his 10th birthday.
Alex began having leg pain in late December 2015 and, after 3 misdiagnoses, was diagnosed in June 2016 with Ewing sarcoma. This is a rare type of bone cancer that affects children. Fewer than 30 children in the U.K. develop Ewing sarcoma each year.
Although Alex could not walk and had severe pain – he needed morphine every 2 hours – doctors offered no further treatment. "They believed that any surgery they could perform, though it may have been successful, would reduce the quality of life Alex had left," says Jeff, a Warwickshire police officer. "They told us it was unlikely he would get to his next birthday."
That inspired Jeff to reach out on social media to get second opinions and try to find a medical center where Alex could get the care he needed. Alex soon had more than 2,000 followers and counting.
Finding sarcoma care in Kansas City
Alex's followers included Kansas City, Kansas, Police Chief Terry Zeigler, who put Jeff in touch with The University of Kansas Cancer Center. Alex and his family arrived in Kansas City in December 2016. They met with Howard Rosenthal, MD, who specializes in orthopedic oncology and metabolic bone diseases at the cancer center's Sarcoma Center.
Alex first had surgery and stereotactic radiotherapy at the cancer center, followed by chemotherapy at Children's Mercy Hospital. Next, Dr. Rosenthal replaced Alex’s cancerous thighbone with a custom-made titanium prosthesis. Motors in the implant are operated by electromagnets outside the body to "grow" the implant to match the growth on Alex's healthy leg.
"We usually add about 4 mm every 2 or 3 months," explains Dr. Rosenthal. "The outpatient procedure doesn't hurt, can be done in the office, and takes about 15-20 minutes. And Alex can walk out of the office."
Sarcoma survivor and cancer-free
It was an incredible journey for Alex, Jeff and Maria, who made many new friends during their stay in Kansas City. They returned to England in August 2017. They'll return every 3 months for Dr. Rosenthal to lengthen Alex's leg. A year after the surgery, Dr. Rosenthal had great news: Alex is cancer-free.
Alex did, in fact, celebrate his 10th birthday, May 25 – at the Swope Park Zoo Lakeside Nature Center in Kansas City, Missouri. He has a passion for nature, science and conservation, and especially loves owls and birds of prey. And he knows what he wants. "I just want to have a normal life like everybody else when this is all over and I can walk."
Ewing sarcoma patient Alex Goodwin receives growing prosthetic bone
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