51 LONG days after entering Johns Hopkins, my Mom has been released to IPOP (outpatient care). For at least the next two weeks she has to be at the IPOP clinic daily, so they are staying at the Hackerman house, rather than take the hour drive into the city.
This afternoon, Mom’s white count was 360! The graft vs host rash continues to spread. We are hoping that clears up soon, but there is varying information about how long it will take. Here’s what that looks like on her arm–but it’s everywhere:
This is not your average rash. Still we’re grateful to see it, but it will be nice if it goes away in a reasonable amount of time. It isn’t pretty and it itches.
Dad learned to flush out a Hickman catheter yesterday and to clean and change the dressing on it. I am very impressed. I have to learn to do it too. Since Mom’s swelling in her feet and legs are back up, they’ve given her more lasex– again, we’re hoping for a quick resolution to that problem. I am heading out to find some kind of comfortable shoe for her to wear.
We received a booklet on patient care for the first year following transplant. You would be amazed at the restrictions that are necessary to keep her healthy. She has to avoid crowds, and children (because kids can be sick and not look sick. Not sure how we will handle that one for obvious reasons). She can’t eat salad, or from a buffet. She can never go out in the sun again without the total protection of sunscreen and shade (the sun can aggravate graft v. host). No gardening, no touching soil, dirt or mulch (fungus grows in these). She has to avoid cats and turtles. On the plus side, she can’t do housework! She’s not allowed to touch solvents or cleaners. All of her immunities from disease were killed by the chemo, so none of her childhood immunizations work. I’m not sure why MY immunizations don’t help her, but at the one year mark, she’ll have to be re-immunized. Until then, she has to avoid people who have received “live vaccines” (oral polio, smallpox or chicken pox) for 30 days.
This is just the tip of the iceberg– but like everything else, we can only take it one day at a time.