Marlee's Cancer Journey
Her mother, Shelly, her father, Bill, and her sister, Meredith, were by her side throughout her cancer journey that began in April 2015 when she was diagnosed with Alveolar Rhabdomyosarcoma, a very rare and aggressive soft tissue sarcoma.
Marlee had a small tumor in her left foot that was found by her mother with just a small bump on top of her foot. After an MRI, they learned it was just the tip of the iceberg. The tumor was actually growing from the bottom of her foot. Ten days after her MRI, a port placement and multiple biopsies, Marlee had her left foot amputated. Two weeks post amputation; she received 43 weeks of intense outpatient chemotherapy at Children’s Hospital of Colorado.
Soon after her treatment ended, the family relocated back to Texas. Shortly thereafter, she relapsed. The cancer was found in the lymph node bed in her inner left thigh. She then had extremely intense inpatient chemotherapy both at Texas Children’s and later at MD Anderson, as well as Proton Radiation Therapy at MD Anderson. She received 40 year old drugs, one of which was invented using nerve agents from WWII, Doxorubicin, AKA The Red Devil. It has significant, long term side effects especially affecting the heart, so only so much can be given over a lifetime. She once again achieved remission.
Marlee then entered a Trial at Texas Children’s using her reengineered T-Cells to kill any cancer cells that may be left. Shortly after she finished the T-Cell infusions, she relapsed again. This time a small tumor in her left buttock was found on a routine MRI. She once again received intense outpatient chemotherapy and Proton Radiation Therapy at MD Anderson. Again, she received drugs that were developed for adults, one of which, Cyclophosphamide, requires 2 hours of fluids before getting it and 24 hours of fluids and another drug after getting it so that it does not eat holes in her bladder. Marlee once again achieved remission and received T-Cells from Texas Children’s.
Marlee again relapsed in October of 2018. It was a major relapse, as she had tumors in her abdomen, one being wrapped around the main artery to her liver. She had three rounds of chemo when it was determined the treatment was no longer working and the tumors were growing. This was January 15, 2019. She was given the option of a clinical trial that would accept her. She asked, “Do I have to get chemo and will it cure me?” The answers were yes to chemo and no to a cure. She told her parents she did not want to do it. It was decided that day to stop treatment. They immediately went home, packed the car and went to a rented beach house in Galveston. She felt good for the week they were there and was able to spend valuable, quality time with her family.
The Packs returned home with hospice care and significant pain management. Marlee was bedridden and passed away around 12:30 am on February 23, 2019 at 12 years old.