On May 4th 2021, we found a mass in Grayson’s belly that turned out to be cancer. On May 6th, he had surgery to remove the tumor along with his kidney and adrenal gland.
The tumor was diagnosed to be Clear Cell Sarcoma of the kidney. All 7 lymph nodes that were removed during surgery came back clear of disease. His lung scan, MRI, bone scan and CT scan all came back clear so his cancer is classified as Stage 1 overall.
Grayson then went on to do 28 weeks of chemotherapy at Dell Children’s. He was a complete rockstar through it all. There was many hospital trips, many oncology trips and even holidays spent in the hospital.
We had a complete year of bliss post treatment until December 2022 when a brain tumor was found in Grayson MRI. Grayson’s tumor was inoperable due to its location on his brain stem. Our world was rocked once again. Grayson underwent a new chemo port placement and a brain biopsy. The brain biopsy came back clear sarcoma of the kidney, meaning his diagnosis original diagnosis had metastasized. Unfortunately, there was some complications from his brain biopsy so when Grayson woke up, he was unable to use the left side of his body and his eye was jammed shut. Our once fully functioning toddler was unable to move half of his body. It was absolutely gut wrenching to see Grayson in this state.
Grayson completed two rounds of ICE chemotherapy at Dell Children’s during which we would be rotating from the oncology floor to the rehab floor. Our top priority was to get rid of the cancer so rehab sometimes took a back burner. After two rounds of chemotherapy, we were discharged to MD Anderson in Houston for Grayson to begin his radiation journey. He completed 20 doses of proton radiation to his brain. We then came back home to Austin for another three rounds of ICE chemotherapy. With five rounds of ICE completed we discharged home so we could prep for Grayson’s bone marrow transplant. We relocated to Houston for Grayson to start his high dose chemotherapy and prep his body for his stem cells. Grayson completed his high dose chemotherapy and received his life-saving stem cells on May 1, 2023 his re-birthday- a day we will forever celebrate.
Grayson has been so strong and resilient through it all he is the happiest toddler I know and he has been through so much. We are now able to focus on his rehab journey. with Grayson seeing his oncologist every three months for his scans.
