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Recurrent osteosarcoma is very rare and the prognosis with this disease is statistically poor. We need more research, more help, more money, more options and ultimately, more hope. This is Alyssa's story.
On January 10, 2011, Alyssa was just eight years old and in her tap dancing class with me (her mom/tap teacher). She said her knee really hurt. I assumed she'd tweaked it on some of our more advanced moves. By the weekend, it was clear her knee was really bothering her. We tried rest and ibuprofin to no avail. A trip to the pediatrician revealed no abnormalities - so more rest and ibuprofin.
The following week she was no better so we went to sports medicine clinic where a plain x-ray showed widening of the growth plate consistent with an overuse fracture. Given Alyssa's very active life with tap, ballet, jazz and gymnastics, that made sense. However, our 30 minute MRI to confirm this turned into a full2 1/2 hours in the tube. We knew then something was wrong. On 2/11/11, we got the call that she had a mass on her femur causing the fracture of her growth plate and this is "very, very bad news."
After waiting the weekend, we saw theorthopediconcologist on Valentine's Day. He scheduled a biopsy and the chest port placement the next day which revealed osteogenic sarcoma - or osteosarcoma - a rare and very aggressive bone cancer. Follow up tests revealed a node in her lungs which, after a thorocotomy on 2/23, was determined to be benign (yay) however, a clump of tumor cells was seen floating through a blood vessel in the excised lung tissue. Unfortunately, we later learned this was due to a pathological fracture sustained during the thorocotomy.
Alyssa started her chemo regimen on 3/3/11. She had surgery to remove the tumor and receive a expandable endoprosthetic device on May 25th. Already planning on doing the more extensive and aggressive MAPIE chemotherapy due to the tumor cells found in the lung tissue, the news of the necrosis didn't change our path but certainly increased our anxiety.
Alyssa's leg healed very, very well. She quickly reached the movement limitations of the endoprosthetic device. We were delighted with her progress with PT and she's been walking since August 2011 with only minor bumps in the road.
On May 14, 2012, Alyssa had her 32nd hospitalization for this disease and was finally given her last dose of MAPIE chemotherapy. In what was, perhaps, the cruelest of timing, during this final scheduled hospitalization, a local recurrence was found at the site of the original tumor. The pathological fracture and the poor response to chemo meant a clump of tumor cells had been left waiting in the soft tissue by her original tumor. The biopsy confirmed a recurrence on May 22nd.
We immediately left our home and friends in Virginia to meet with the specialist on recurrent osteosarcoma, Dr. Pete Anderson of MD Anderson Cancer Center in Houston, Texas. Alyssa began a new chemo protocol as soon as scans showed no evidence of additional disease. Unfortunately, the tumor only grew on chemo. On June 15th at MD Anderson, Alyssa had a high-femur amputation with vascularized tibial transplant to provide a small residual limb upon which to wear a future prosthesis. We will have a treatment plan based on scan results on July 16th.
As we face whatever comes, we are grateful that Alyssa is still with us, that our family has endured together and that we continue to be blessed by the amazing support of our community who refuses to let us face this alone. This road is long, (LOOOONG), hard, painful and tiring. Alyssa continues to amaze, inspire and encourage us all with her dedication to getting through this nightmare. LIVE ALYSSA LIVE!!!