Diagnosis: Acute Myeloid Leukemia (AML). A Journey

George was so happy to sleep in his own bed last night and awaken to his own coffee in his favorite mug! He said it still tasted different – like creamer in dark water, but hopefully his “chemo mouth” will improve with every passing day.

At about 7:30 the evening of his homecoming, we received a delivery from UPenn Home Infusion. In the box were bags of magnesium, an infusion pump, saline and heparin syringes to flush George’s PICC line, alcohol swabs, tubing and everything we would need to care for him at home. The magnesium bags have to refrigerated so we got the mini fridge we had in the garage and brought it into the office. We opened the box and set up our little infusion center. The bags of magnesium are pretty big and take up too much room in our kitchen refrigerator!

At around 10:30, the UPenn Home Infusion nurse, Amanda showed up to show us how to clean George’s PICC line and hook up his magnesium infusions. We took the magnesium out of the fridge about 2 hours before Amanda got there so it wouldn’t feel like George was getting ice water pumped into his veins. She then demonstrated how to turn on the pump, prime the pump, and get the IV started.

Since we are at home, we don’t have an IV pole. Instead, we have a little backpack that holds the pump. It’s great, because George can move around easily. Here, he is sitting at his desk working while receiving his transfusion! His pump is in the backpack on the back of his chair. 

Right now, George is receiving 400 mg of magnesium every day, which takes about 4 hours to complete. The tacrolimus ( immunosuppressant and anti-rejection drug) he takes depletes his magnesium, so it has to be replaced. 

George has been home for only two days, but it’s pretty remarkable how quickly we have settled into this new routine of taking medication and hooking up the infusion bag in the morning after coffee. We will be doing this every day for at least the next three months. 

He is in great spirits, but he does deal with fatigue. Last night, he took a shower and just that act and the task of drying himself off exhausted him. Hopefully, he will get stronger as each day passes. And he also deals with “chemo mouth” which makes a lot of his food taste funky.