Scott was so happy to walk in the front door of our home on Tuesday, and has been savouring each day out of the hospital before treatment resumes.
There has definitely been a readjustment period… Not having the security of a nurse checking his vitals every four hours making sure he doesn’t have a temperature or giving a morning update of his blood levels was something to get used to. Is he too pale? Why is he so stiff? Is it normal to be tired? Not to mention missing a bed that doesn’t go up and down with the push of a button. Yes being home is wayyy better, but it’s hard to get out of the hospital rhythm without feeling a bit unsteady.
Life at home is chaotic at times, and there is always something going on, but it’s his chaos and getting reacquainted with our family’s routine has definitely helped with the transition back.
The kids are learning his limitations and we’re all more aware of trying to keep things as calm as possible. Which is often nearly impossible! And Purell is now a household name.
It’s funny, as I didn’t notice it myself, but Scott commented earlier about how Leigh is suddenly a player in the house… She loves digging into the kitchen towel drawer, demands to be included during playtime and is alllll over the place. In her case, a month made a huge difference and he’s loving playing catch up.
At his appointment on Friday Dr. L advised us that the marrow sample from Tuesday’s biopsy wasn’t a true sample, and it was missing some data. They detected blast cells which could mean that the disease is still present, but it’s also possible that the Neupogen shot is responsible for these cells and that they aren’t cause for concern.
This uncertainty means that she needs another marrow sample (ick!), which she will take at Monday’s appointment. By then the Neupogen will have be worked out of Scott’s body and the sample will be a lot more accurate.
Is he making these biopsies look too easy or what?
On Monday she should have the cytogenetic results, providing more info on transplant possibilities, but we will still need to wait another few days for the new biopsy results.
And for those of you wondering about the pesky neuts, though they have fallen to 0.7, he’s still within the range of being allowed to stay out of hospital. And all his other levels look good!
RED LIPSTICK 