Week Twenty-eight

This has been a roller coaster of a week and yet when all is said and done, nothing has really changed.

The roller coaster part has to do with doctors from varying specialties treating a CT scan as a Rorschach test. Everyone has seen something different and depending upon who saw what and when, they came and told us different things. Some were very scary things which caused unneeded emotional angst.

Here we are, at the end of the week and know this much: he still has leukemia. The chemo he’s been taking as a holding action has done its job so now he’s off it so his blood counts can recover a bit, including more leukemia cells. But there are good cells in the mix and he needs those to combat the last vestiges of the fungus still within his lungs.

He may still have fungus in there which is why they’ve added a third antifungal plus a drug to starve the fungus of iron.

Robbie remains transfusion dependent for thins like platelets and red blood cells, a situation that can be managed for some time but does involve a lot of pre-medication and time keeping him tethered to the IV pole (currently decorate with an inflatable parrot).

A CT scan on Tuesday followed by a fresh bone marrow study on Thursday will guide the next steps but will most likely involve repeating the chemo regimen he had for round four to knock him back into remission.

There is no 100% bone marrow donor match so now they’re coming up with the criteria they want for the next-best-thing. Marrow registry remains important to increase the size of the pool and I was honored when my old time pal Melissa Ann Singer wrote about it at the newly launched tor.com.

The other fact, mentioned on Monday when he moved from a double to a private room but really brought home as the week wore on is that Robbie’s in the hospital indefinitely. We were told to make his room comfortable so all the posters Kate bought him in January went back up on the walls and other little touches were brought back so the room looks more like a dorm room than hospital room. The news settled in and has frustrated Robbie who really misses the events that happen in life. His friends came in numbers this week and while they shared the gossip with him, it was clear he won’t be making any gossip for some time.

Another thing we realized this week: Robbie has touched an increasing number of doctors. Dr. Dodson rotated off the floor and made a point of saying goodbye then paying a visit later in the week. She explained to us that all the interns and residents pass along news of his status and each new resident coming on is instructed that its part of their job. Additionally, his oncology team has been nothing but top-notch. They have become the gatekeepers of information, rallying the departments to funnel their news through them rather than give us four or five different thoughts that can confuse or worse, frighten, us. Dr. Massaro and Dr. Beardsley have been nothing short of wonderful with their time and level of interest in Robbie.

We feel in very good hands. It’s important considering how dependent we’ve become on the staff to help us look after his immediate well-being while working to cure him of this insidious set of diseases.

3 comments