Louisa - Anchorage

Louisa was diagnosed with AML in June 2019. She was life-flighted to Missouri immediately following diagnosis. A few weeks after arriving at Children’s Mercy Hospital, the cytogenetics came back revealing a rare, high risk mutation. She was lucky to get into remission quickly. The oncologists put her on the path for a bone marrow transplant ASAP. Louisa’s oldest sister, Alma, was her bone marrow donor. Louisa developed pretty severe veno-occlusive disease as a result of transplant. She had multiple drainage tubes inserted in her abdomen to drain excess fluid. She has also struggled with multiple central line infections, months of isolation, IV and NG feedings, mobility and speech delays due to treatment. The donor cells did take hold though and she was considered “engrafted”. The donor stem cells were producing red blood cells, platelets, and white blood cells as they are supposed to and Louisa continued to remain in remission! We celebrated the New Year excited to be done with cancer and with our plane tickets purchased to return to Alaska. On January 10th, we got the call that the cancer had relapsed. There were no symptoms. It was found in a routine bone marrow aspirate. We immediately took the girls to Disney World for four days, to spend time as a family while Louisa was still feeling well. After our short vacation, there were some varying results on her bone marrow, so we waited further immediate treatment as we hoped the donor cells were fighting the cancer. One more sample showed that the disease was progressing. We are currently in St Louis, MO, trying to get Louisa qualified for a promising new clinical study for relapsed AML.