Here are the basic, as concise as possible, ins and outs of what Ashtyn is doing in Seattle. A pharmaceutical company believes they have an anti-cancer drug called Venetoclax which hopefully makes leukemia cells more susceptible to chemotherapy and easier to destroy. This would allow Ashtyn to go into remission and receive a 3rd, yet different, bone marrow transplant. The drug is currently on the very first phase of the clinical trial which means there are few participants, Ashtyn being one of two currently receiving it in Seattle. The goal for a phase one trial is to discover how much of the drug is safe to give, what the side effects are, how the body copes with the drug, and if the treatment helps destroy cancer cells. Ashtyn qualifies for the study because she relapsed twice and has had all other treatments available.
Everyday either a pharmacist or I, depending on if she's inpatient or outpatient, dissolves 20 Venetoclax pills in 100 ml of apple juice. After about 15 minutes of shaking and swishing the cup around, the pills dissolve leaving a dark yellow, cloudy liquid with foam. The 100 ml is then put into two 60 ml syringes. 20 ml of fresh apple juice is places in the cup to capture the residue which is then put into another syringe, and an addition 20 ml of apple juice is places in the cup to get all remaining medication into a fourth syringe. Ashtyn then places one syringe in her mouth at a time and drinks the liquid medication as fast as she can. Study based blood lab work have been done frequently to gather data.
Here is a verbal picture of what's been going on the past 24 hours. We got to the Ronald McDonald House Wednesday around 4:00 p.m. after being hospitalized for a seizure. (She is now on an anti-seizure med because her EEG showed some abnormal activity.) At 9:00 a.m.Thursday morning she had a scheduled clinic visit at the hospital. Blood labs were drawn, her central line dressing was changed, we talked with her awesome high risk oncology doctor, went under anesthesia for a lumbar puncture and intrathecal chemotherapy, and was given IV fluids. Once awake she downed her 140 ml of the nasty tasting Venetoclax. She then had to get study blood labs drawn from her central line every two hours for eight hour. She waited out the time by sleeping and hanging out on a gurney bed in a small exam room for a total of 11 1/2 hours at the hospital before heading back to the RMH. Tomorrow we'll go back to the hospital for more lab work to monitor her rising liver enzymes. Prayers are always so appreciated that 1. This drug will be effective in getting her into remission asap. 2. Her liver and other organs will stay healthy enabling her to continue taking Venetoclax. 3. Her body will stay free from illness and infection.
20 Venetoclax pills a day
Weekly lumbar punctures to monitor leukemia in her
spinal fluid and receive intrathecal chemotherapy.
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