Riding for Roses

For the next two weeks, we get to try the fun adventure of do-it-yourself chemotherapy at home. Other than the injecting cytotoxic chemicals into my own son and the constant knowledge that improper care and cleanliness could infect my son and land him in the hospital, it’s not so bad. This week, we started with intrathecal (through the spinal cord) methotrexate (that wonderful all purpose anti-leukemia chemotherapy, an antimetabolite that can cause long-term neural problems due to impairing proper growth of the nervous system) and then an office visit for cytarabine (also called ARA-C) and an infusion of cyclophosphamide. We continue the cytarabine at home on Tuesday and Wednesday, with an office visit Thursday for the last cytarabine for the week and de-access of Spencer’s port. Spencer gets to run around most of the week with a needle sticking into the port-a-cath in his chest and a tube hanging down from it. The good news there is that I don’t have to stick a needle into him in order to administer toxic chemicals and risk infection.

The process starts with a basic thorough washing of hands, preparation of syringes (get the air bubbles out and put them on a sterile surface), and donning of gloves. Officially, I’m donning a gown, a mask, and the heavy gloves. We’ll let it be our little secret that I just wear the non-latex protective gloves. I’m told cytarabine doesn’t become really toxic until it interacts with the bloodstream. The mnemonic to remember is SASH, except the A stands for something other than ARA-C or cytarabine, and – oh yeah, I almost forgot – we actually do SASASH. The “S”es are for Saline. Before we switch each syringe, we clean the connector with alcohol for 30 seconds and let it dry. First we clear the line with Saline, then we give anzemet. Next we clear the line with saline, and give the cytarabine (ARA-C, whatever the A-word they used for the SASH mnemonic). The cytarabine is fun. It comes double wrapped in ominous brown translucent bags with biohazard symbols on them. It comes in a special dispenser that squeezes it into the tube at 50 ml/hr – they don’t trust me to inject it over 2-4 minutes, so they have an elastic bag and flow limiter setup that takes 10-20 minutes to do the infusion. Fortunately, Spencer wear it on a belt pouch and do other activities. Finally, we clear the line with saline again and do a “heparin lock” which just means injecting heparain and making sure the line and the catheter inside Spencer’s body are filled with heparin so his blood won’t clot and occlude the line.

Piece of cake. Can’t wait to do it. Next week we get to do the same thing and two more times again in July.