Tell the Bees

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.

9 comments

9 Comments so far

  1. harriet barlow June 19th, 2008 10:19 pm

    HI all,
    I”m coming to
    Boston next week and would love to see Lina. I’m not certain how to proceed/who to call?
    hb

  2. Joyce Read June 19th, 2008 10:44 pm

    Hi Craig,
    I’m coming to Boston on Tuesday to see Lina. I arrive late Monday evening in Portland and will drive in to see her Tuesday. Please let me know if there is a problem with that schedule.
    Thanks,
    Joyce

  3. moie June 19th, 2008 10:49 pm

    Hi Craig, Chloe and Moriah,

    I will be in New Hampshire next week and plan to go to Boston for a day to see Lina. My last visit with her was good and although she was confused at times, we had some good conversations and I was happy I got to spend some time with her. Evelyn, Priscilla and Bob had been
    there the day before me and she talked about how good it
    was to see them and how glad she was they had gotten to
    see Chloe graduate and had brought her pictures of the
    graduation day.

    Harriet, if you know what day you will be visiting, perhaps you could let me know through this site so that we can spread our visits out a bit.

    Thanks for the latest update, Craig, and lots of love to all of you.

    Moie

  4. julie olsen June 19th, 2008 10:52 pm

    Hey Craig, Hang in there!! Julie

  5. Pat Weinswig June 19th, 2008 11:17 pm

    Dear Craig and Lina: We are hoping and praying for the best. You are in our constant thoughts and we hope that both of you have the strength to continue to fight this battle. Thank you Craig, for keeping us informed. Now that the Celtics have won their championship maybe their good luck charm will bring good luck for you two, as well. As we say, from my mouth to God’s ear. Fondly, the Weinswigs of Madison, Wis.

  6. Chris Hartman June 20th, 2008 3:59 am

    sorry we did not get to see you while we were out east- I am thinking of you and send you positive thoughts- hope you have a positive turn of events soon!! Love from your friends in in Ely, Minnesota.

  7. Eileen Prince June 20th, 2008 12:13 pm

    Lina is making this journey one step at a time, in her own unique way. The positive is that her digestive system is working. That wasn’t looking so good a few weeks ago. So I am celebrating that, we’ll see where the rest follows. So…Craig as you hope for the best, yet take the doctor’s warning and plan and prepare for the worse, know that we are all with you all, with support and love. I have faith in Lina, you and the doctors – and hope the insurance company will come through. Enjoy your ball game – Lina will want to hear all about it (I still marvel that she’s such a fan). I’ll call Lina today. Eileen
    p.s. your girl Chloe is magnificent – what a joyous graduation celebration for a wonderful talented girl!!

  8. Susan Baker June 21st, 2008 2:24 pm

    I am so hoping she will get to have a trial at home…so many people are confused in the hospital setting and then go back to being normal at home. I know Lina has mitigating circumstances, but it has the potential of being better in her own environment. I love the Halloween story!!! Isn’t it wonderful she has her sense of humor in the midst of alternative realities! What a blessing! Hugs to you all. Susan

  9. Marta Daniels June 23rd, 2008 5:08 pm

    This is Mid Summer’s Eve, the time of the summer solstice, one of Lina’s favorite times of the year. So I’m called to leave a comment for her, and for you Craig, and for the girls on this day in June.

    Mid Summer’s Eve was known in ancient times as St. John’s Eve, after the patron saint of beekeepers–a time when hives were full of nourishing honey, and when the moon was called the Mead Moon, because of its promise of nectar and sweetness. It was also believed that Midsummer’s dew carried special powers, and that herbal plants maturing now had magical energy that enabled healing and bestowed good health.

    I want to recall and honor this summer solstice season especially thinking of Lina, and believing that if our beehive could give up its honey to her, or if we could somehow act as her healing plants, she would be well again. In our hearts, we the bees, offer our metaphorical nectar and herbs in the form of love to her, and to our best beekeeper, St. Craig, and to his special helpers, Chloe and Moriah. I know I speak for all of us when I say you are all in our thoughts and prayers every day.

    Much love, and may the healing at solstice time prevail.

    Marta

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