Tell the Bees

Archive for June 19th, 2008

Eating More; More Confused

It’s another Thursday afternoon. I haven’t done a very good job of updating this week and I apologize for all the unanswered e-mails and unreturned phone calls.

Lina is still being fed intravenously and under 24/7 guard.

But… she is eating more every day and her digestive system seems to be sort of working again – no vomiting.  We watched her eat half of a pepper & onion omelet Sunday morning. Dr. Armand told me yesterday if she keeps eating they may take her off the intravenous feeding sometime next week.

They are still treating her HHV-6 brain virus but expect that treatment to end in the next few days.

Dr. Armand said that only a handful of stem cell transplant patients have had HHV-6 at Dana-Farber since they realized how it affects transplant patients – and that there’s not enough history to predict how it will it impact Lina – especially since she’s had so much brain trauma in the last couple years with brain tumors, brain surgery and whole-brain radiation — plus 2 years of non-stop morphine and brain chemo.

At this point her mental confusion seems to be worsening – even while her physical condition has shown some improvement.

I was called by the hospital twice yesterday asking me to call Lina’s room and try to calm her down – ‘try to bring her back to reality.’ It’s clear that she is reliving her past life – and merging much of it with the present. Still, she seems mostly happy. Her biggest complaint remains “the bossy nurses who think they can push me around.” She told me she had fun going ‘trick or treating’ in Boston the other night before going to the Boston Garden to watch the second half of the Celtics game. I said, “But it’s not Halloween.” She said, “Of course it’s not. That’s why it’s so much fun. You catch everyone off-guard.”

Dr. Armand says he’s now less confident that the mental ‘confusion’ will go away then he was a few weeks ago – but that they just don’t know.

Because they are approaching the point where they may take her off of intravenous feeding and end the brain virus treatment Dana-Farber is warning me that we may soon reach the point where the insurance company refuses to pay for more ‘acute care.’  So… they tell me to start thinking about where to move Lina to – a nursing home, a rehab hospital or home? Boston or Maine?

Dr Armand is clear that Lina will need 24/7 care indefinitely – even if she stabilizes. And that her aGVHD is still ‘touch and go’ and could quickly put her back at Dana-Farber/Brigham & Women’s.

So, lots for us – or me, I guess -  to figure out.

Chloe, Moriah and I will go back to the Cambridge Marriott Saturday AM -Monday PM. We have Red Sox tickets for a 4pm Saturday game to get us out our Boston hotel room rut after 6 mostly-rainy weekends. Our good friend Jean Millen is coming to Boston from Arizona Sunday and will visit Lina while she’s in town for a conference next week.

I’ll try to update again from Boston this weekend.