Osteosarcoma: A Parent’s Perspective on Childhood Cancer

March 20, 2014

Body

“There is a mass.” These words marked the beginning of our family’s journey into the horrific world of childhood cancer. Our then six year-old daughter, Meg, had terrible pain in her left leg, and we were convinced for several weeks that it was a pulled muscle or a sprain.  But the pain persisted, and a routine x-ray by our orthopedic surgeon revealed the news that no parent ever wants to hear. A massive tumor encased Meg’s femur from the top of her knee almost to her hip joint.  We contacted Texas Children’s Cancer Center and were immediately connected with pediatric oncologist Dr. Nino Rainusso. He guided us through the diagnostic process, and just four days after the x-ray, a surgical biopsy confirmed that Meg had osteosarcoma, a cancer of the bone that primarily affects children and adolescents.  She would not only need months of intense chemotherapy, but also surgery to remove the tumor. My husband and I were overwhelmed.  Looking back, I am ashamed to admit how little we knew about childhood cancer before it hit our family. Sure, we vaguely knew about things like chemo and hair loss, but we could never have imagined the lengthy hospital admissions, the brutal chemotherapy regimen, the painful side effects, the dangerous fevers, and the risks of potentially lethal complications such as heart, liver and kidney failure. On top of all of this, our little girl had to go through a long and complicated orthopedic surgery followed by extensive rehabilitation. Not just in the early days and weeks, but at every stage along the way, there was so much new information to be absorbed, risks to be weighed, and decisions to be made.  But no matter how overwhelming things got, we had total confidence that we could not have been in better hands. Dr. Rainusso, whose clinical and research focus is osteosarcoma, is part of a team of professionals at Texas Children’s Hospital who together comprise the Musculoskeletal Tumor Clinic. Led by Dr. Lisa Wang, the team includes one of the country’s best-trained pediatric orthopedic oncologic surgeons, Dr. Rex Marco, as well as several pediatric bone sarcoma oncologists, pediatric nurse practitioner, Shiley Aguilar, and physical therapist, Danielle Cousins, who specializes in limb salvage rehabilitation. In addition, the child life specialist on the team is extremely gifted at helping children understand cancer and cope with the challenges of their diagnosis and treatment. Texas Children’s team approach was invaluable to us as we maneuvered through the complex world of osteosarcoma – and it still is.  With all the moving parts involved in Meg’s treatment, surgery, and rehabilitation, we are incredibly fortunate to have access to a group of specialists who work together to achieve the best possible outcomes for Meg and all the other bone tumor kids at Texas Children’s Cancer Center.  Moreover, this unique team is also doing groundbreaking research to find better cures for patients with bone sarcomas. In fact, if it weren’t for these experts who are working at the frontiers of bone tumor treatment, there is a strong chance that Meg wouldn’t have been able to keep her leg.  In the past, amputation was the only option for removing bone tumors.  But limb salvage techniques have evolved over the past 30 years, including the invention of implants that “grow” with the child without having to be surgically extended. In collaboration with Dr. Marco and the Musculoskeletal Tumor Clinic team, we chose limb salvage with a Stanmore extendable implant for Meg. As a result, she now has a completely new hip joint, femur, and knee – yes, her entire femur was removed and replaced! As Meg grows, her new artificial femur is lengthened very slowly, painlessly, and noninvasively with a magnetic device that looks a bit like a mini MRI machine. Dr. Marco is one of few surgeons in the country with extensive experience with Stanmore implants, and Meg is one of the few kids in the country who have had a full hip, femur and knee replacement. In other words, she is a very rare and complicated case among rare and complicated cases! Meg finished her chemotherapy 10 months ago and is now almost eight years old and a very happy second grader. She has some physical limitations, but her mobility is excellent, especially considering the amount of hardware she has in her leg.  She will have to observe strict hip and impact precautions her whole life, but she walks like a champ.  Rehabilitating that leg has been no easy task, and she still goes to physical therapy at Texas Children’s twice a week. Meg will continue having routine scans every three months for the first two years and then regularly until the five-year mark.  Each new set of scans brings fear and uncertainty, and I look forward to the day that we know without a doubt that she is cured. We are deeply grateful for our little girl -- hair growing out, missing teeth, limping but walking, and full of laughter, spunk and quite a bit of sass. We have the good Lord above and Texas Children’s Cancer Center to thank for that.

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