It’s hard to believe that today is day 29, the beginning of our fifth week in the hospital. We’ve slipped into a routine that allows us to care for Robbie, get some work done and still get the bare minimum done at home. If anyone is suffering now, it’s the dogs who had gotten used to people being around all day.
On the whole, we’d all rather be with Kate at Farpoint.
As the week progressed, Robbie’s blood counts rallied and as of this morning, his platelets are where they should be and the white blood cells are once more growing. On Thursday, he spent Valentine’s Day having his broviac line put into his chest and the overdue bone marrow biopsy and lumbar puncture. The good news is that the spinal fluid was clear of leukemia and the biopsy showed 8.9% blasts (anything over 25% is serious). As a result, once he kicks the persistent fevers and nausea, he can go home for some recuperation before returning for induction round two. Of course, we have no idea when that will be or for how long, but it’s a nice notion.
In anticipation, all three of us are being taught how to change his dressing and flush his lines. Neither Deb nor Robbie really want me near this stuff, but I figured I need to know and when I flushed the line by myself the other day, the nurse didn’t cringe so I can’t be all that bad.
When he’s up for stretches, he will check e-mail or watch a movie but this week there have been long stretches of napping (medicines are his friend) or discomfort. His spirit remains strong as ever and he likes that he will be able to control his own broviac maintenance. He’s been paying attention to his medications and their protocols and managed to get into a debate with a resident yesterday over one particular medicine and when he should (or should not) begin a new round. At 19, he has say and I appreciate how the doctors give him a fair hearing and then give their point of view before a decision is made.
We continue to take things one day at a time; planning anything further is just impossible at this point. We also celebrate the little victories as they come each day.
What continues to humble us is the sustained outpouring of support from friends, neighbors and even acquaintances. We’ve been supplied with Mass cards, meals, phone calls and visits. Deb and I couldn’t be more overwhelmed and it only reinforces that 15 years ago, we made the right decision to move to Fairfield.