This update is a medical update as opposed to the previous update which was more about how Ashtyn is doing mentally and emotionally.
On Tuesday February 27th, Ashtyn, Jason her dad, and I joined a conference call with oncologists, bone marrow transplant physicians, nurse practitioners, a social worker, and others on the High Risk Leukemia team at Seattle Children’s Hospital along with her oncologist here at Primary Children’s Dr. Luke Maese. We discussed the plans made for moving forward with the clinical study trial treatment that Ashtyn is being enrolled in. These are the basic facts.
Our insurance company has approved the clinical study. Ashtyn and I will be flying to Seattle on Monday March 5th and will take an Uber ride to either Ronald McDonald House or, if no vacancies, check into a hotel nearby. Tuesday will be a full day where we will meet quite a few members of her health care team at Seattle Children’s Hospital. Ashtyn will get lab work done, possibly a platelet transfusion, a bone marrow aspirate and lumbar puncture procedure, and an anti fungal medication infusion. Wednesday we will go back to the hospital and be admitted to a room where fluids will be given and preparations made for her to receive the study drug the following day. Thursday she will receive the study drug Venetoclax and then again daily for the next 21 days. The first five days will be spent in the hospital and then, as long as she tolerates the medication, she’ll be discharged from the hospital and settle in at the Ronald McDonald House. The 2 1/2 weeks following will be spent at the Ronald McDonald House (and possibly site seeing around Seattle), and going to the hospital clinic once a week for lab work and an assessment. Once the 21 days is complete, a bone marrow aspirate will be done to discover what effects Venetoclax had on her leukemia cells and immediately start another 21 days of Venetoclax adding an additional chemotherapy drug. After another 21 days of treatment, a bone marrow aspirate will be done again to determine how her leukemia cells respond, and repeat another 21 days adjusting chemotherapy as needed with the hope that zero leukemia cells will be found in her aspirate within a few months. Once there is zero evidence of leukemia cells, we will move forward with another bone marrow transplant to rid the cancer for good.
Yesterday we went to Primary Children’s Hospital. With a low platelet count of 23, she received two platelet transfusions before she was put under anesthesia where a PICC (peripherally inserted central catheter) line, which she will have for several months, was threaded from her arm into a large vein in her heart. A lumbar puncture aspirate to check how many leukemia cells are in her spinal fluid was also done and chemotherapy was injected into her spinal fluid. Currently Ashtyn is on one antiviral, two antibiotics, and an anti fungal medication to help prevent illness or infection. Please pray that all will go well during the next few days allowing Ashtyn to make it to Seattle healthy and able to participate in the study.
Two platelet transfusions before surgery.
Waiting Room
Done with her central line placement,
lumbar puncture, and chemo into the spinal fluid
