Tell the Bees

Lina’s Not Doing Well

My girls and I came home last night after spending Friday, Saturday and Sunday in Boston.

After several weeks of slow but gradual progress, Lina has had a setback over the past few days. The weekend medical team was concerned about lethargy and her not eating and so conducted many tests, scans and probes while we were there.

It’s now Monday afternoon and I just spoke by phone with Dr Armand. He said that there are 3 new areas of concern:

  1. Her mental condition has worsened considerably and they don’t know why. They were testing to see if she had a series of ‘mini-strokes’. Or it maybe it’s just overload from all she’s going through.
  2. Her gut has flared up causing pain, no appetite, vomiting. He said it’s most likely the aGVHD flaring up again. But it could also be new lymphoma. The PET scans ‘lit up’ in her gut region which they would for both lymphoma and aGVHD. They are going to do an endoscopy and a colonoscopy to see what’s going on and get biopsies.
  3. Her kidneys are damaged and they don’t know why and are doing various tests to see if the mix of drugs she’s on could be the culprit.

Dr Armand said that while none of these three developments is ‘catastrophic’ – in combination, and in her extremely weakened condition, she is again in ‘unstable condition’ and has the team ‘very worried’. She doesn’t need her ‘sitters’ now because she no longer has the strength to get out of bed.

Before this weekend’s setback, the hospital had told me that because she was eating better and because they were nearing the end of treatment for her viruses and the bacteria in her blood that I should expect our insurance company (Anthem/Blue Cross) to refuse to pay for anymore ‘acute care.’

Lina’s patient care coordinator at Brigham & Women’s said our options were to move her to a Anthem/Blue Cross eligible nursing home, or, to bring her home and hire our own nursing care. Insurance would cover only up to 100 days at a nursing home but pay nothing towards home care.  The patient care coordinator contacted over 25 Anthem/Blue Cross eligible rehab hospitals all over New England but none of them will accept her because of her current mental deterioration and her need for 24/7 nursing care.

We’ve gone without Lina’s salary for these three years and now we’ve gone through all of our savings paying medical expenses not covered by the insurance — we can’t pay anything beyond what insurance will pay.

So… given those choices, when she improves we’ll bring her home and figure out someway to care for her.

22 comments

22 Comments so far

  1. Chris Hartman July 7th, 2008 4:52 pm

    I am thinking of you and your family – I want your life to be a little kinder- we brought my mom home and I was her care giver for several months- but she was very aware and was able to be a major help in her own care- it was not easy but some how we made it and I am cofident that you with your local support can make it.

    whats the deal you can’t find a place for her and you can’t afford to care for her your self- oh yeah thats right we have the best medical care in the world-

    love from all of us in Ely, MN – PEACE

  2. Joan July 7th, 2008 6:19 pm

    I read this recent posting and wish, as so many of us do that I could wave a magic wand and once again make Lina healthy again and have you all resume a “normal” life. You all have had such a long road to deal with and I’m so very sorry that the struggles continue.
    Love to all of you,
    Joan

  3. Mary July 7th, 2008 6:34 pm

    It seems you and Lina know what is best. Tell the bees your decision as “Failure to pass on these messages would inevitably result in the bees becoming offended and flying off, thus depriving us of one of nature’s greatest gifts”
    I would love to see you near one another without the stress of distance.

    I am back in NY now. I will help care at your beckon call. Let me know your decision. much much love.m
    Sorry bout the Sox. The girls look wonderful as ever papa

  4. Sheryl July 7th, 2008 7:34 pm

    So unfair. I am so sad that now you have to confront our corrupt medical system in this profounding painful way. I agree with the other bee, I am glad you’ve been telling us what you’ve been facing. My hope is that bees will talk with other bees and some relief will come your way. You and your beautiful family deserve a gigantic break. In the meantime, we hope one will come your way so very soon.

    Sheryl

  5. Sandy Bechard July 7th, 2008 8:15 pm

    My thoughts and prayers are with you. I am here to help in anyway I can. Don’t hesitate to call.

    Sandy

  6. Jeff Schwartz July 7th, 2008 8:51 pm

    As everyone else has written too, I’m very sad to hear the latest turns that Lina has taken and how unhelpful the insurance company will be given this situation. For what it’s worth, I’m sending my very best wishes and warm hopes that things will take a better turn and work out in a way that can be handled reasonably.

    - Jeff Schwartz

  7. Grace Ott July 7th, 2008 8:51 pm

    We are all so sorry to hear this, but thank you for sharing. We are ready to be “worker bees” when you get back to Cape. Our prayers are with you, The Ott Family

  8. Joyce Read July 7th, 2008 9:57 pm

    Craig, I truly wish there was something I could do or say to make this situation easier for all concerned. Please keep us all posted and as always, I am here for you and the family 24/7.
    Joyce

  9. Anne Bosworth July 7th, 2008 10:00 pm

    So sorry to hear of this turn of events. We are here for you as well and willing to help out in any way needed. Our thoughts and prayers are with you all during this very difficult time. The Bosworth Family

  10. Eileen Prince July 7th, 2008 10:02 pm

    Everyone is wishing, praying, willing positive energy for the best for my dearest old friend. She has been a model patient. The medical teams have worked hard for her. Craig’s calm and steadfast support has been beyond heroic. Many of you have been there with time and food and transportation and especially caring friendship and love. Maybe we need to consider sending funds(as we can)to help with the skilled nursing care she will need for awhile to be at home. I still have hope. I love you buccinni.

  11. Ellie Duley July 7th, 2008 10:11 pm

    Thinking of you in this time of need. I remember how you were both there for me and would like to reciprocate. Chloe was a lovely guest last month here in Farmington. Call for anything. The Duley family

  12. moie July 7th, 2008 10:13 pm

    What a beautiful picture of Lina you’ve added to the site.
    Thanks. I can see both Chloe and Moriah in that great face.

    None of us envy the decisions the medical insurance situation forces you to make for Lina’s care. I hope you can figure out a way to have her at home with you as I know she would love to be there again. Let all of us know how we can fit into the picture and help you out.

    Jim and I send love your way every day,

    Moie

  13. Nancy Bird LaChance July 7th, 2008 10:55 pm

    I’ve never shed so many tears for someone I’ve never met as I shed for Lina. Her journey has given me so much; I look for ways to make my being a “bee” an enriching experience. Lina’s life is a jewel in the mine of humanity. I am coal, but her existence makes me look for all that glitters around me.
    I’ve known Craig for over 40 years. He’s always been a voice who brought the alone and hopeless together toward justice. It is the most unfair form of irony that this man finds himself at the mercy of the sinister economic cancer we call The HealthCare System – an oxymoron at best.
    I’m too far away to do anymore than pray and encourage. Thank you so much, those of you close enough to be there to help hands-on.

  14. Pam Pillsbury July 8th, 2008 8:48 am

    It is disheartening to learn of Lina’s set back and of the insurance company’s lack of cooperation. At this stage, its so unfair. You and your family have been through too much already. Perhaps it best that Lina come home. It sounds like you will have a lot of support and with being only a few steps away, please let me know if you need help in any way and I will be there. May the peace of God that passes all understanding be with you.

    Pam

  15. Julie, John, Madeline, Christoper and Alexandra July 8th, 2008 8:52 am

    John and I know first hand the difference family, friends and community can make. Our community held us up through so much during John’s battle with cancer.

    I often felt as if we had angels circling above and carrying us through each day.

    The behind the scenes positive energy and prayers gave me great strength to be there for John and our children.

    I know we can provide that same love and support for Craig, Lina, Chloe and Moriah! I know we can provide them with whatever they need next!

    Julie

  16. Nancy Ansheles July 8th, 2008 5:49 pm

    Craig – We are ready and able to help. Let us know what comfort or practical support you need.

    Lina and you deserve the love. You both have nourished it in others and with each other. Take care dear friend, Nancy

  17. julie olsen July 8th, 2008 11:46 pm

    Craig My thoughts,energy and admiration have been with you and your family since this long,strange journey began.Thank you for bringing Lina and your girls “into my life” I continue to have hope. You are a wonderful friend, husband and father. All my love, Julie

  18. Susan Baker July 9th, 2008 9:13 pm

    You are all such incredible role models for those of us who have yet to experience such a path. Your strength and honesty overwhelm me and I long to give you all hugs. I am sure it will be a good thing to have Lina home and it sounds like “we” will support you in whatever ways we can. Don’t hesitate to tell us what you need. Perhaps you can set up “wishing well” that we can contribute to. The photos are wonderful and equally inspirational. Thank you Craig, Chloe, Moriah and especially Lina for sharing with us what must at times be a night mare for sure. Peace Susan

  19. Abigail Norman July 9th, 2008 9:30 pm

    I like the idea of a “wishing well.” Let us all know if you do set that up. I’ll visit Lina tomorrow morning at the start of the day, and will let you know how she seems. My thoughts are with you, all of you.

  20. Betty Carter July 9th, 2008 9:45 pm

    Craig, the Brown and Carter Families go back a long time and I feel your and Lina’s pain as if it were one of my own kids suffering. I think of you often and wish that better news was coming from the doctors. Much love!

  21. Marta Daniels July 9th, 2008 10:00 pm

    When I last visited Lina at Brigham and Women’s, I told her that there were angels all around her. There, right beside her bed, in her room. I still believe that. They are there with her every day. First, the family angels — beloved Chloe and Moriah, and wonderful husband Craig who have been hovering daily through each stage of this terrible struggle. And next there are the Portland friends who have cooked and cleaned and chauffered and cared for Lina and her family for so many months. And there are all the loving relatives who feel deeply for their wonderful sister, cousin, daughter, aunt, niece, knowing how special she is. And finally there are those who are Lina’s extended family, who live far from Portland or Boston who have agonized over every bit of news, wanting to do something, anything that would make the pain less for Lina and for Craig and Chloe and Moriah. If wishing and wanting could change the world, the world would be a different place. But as I said to Lina on the day of my last visit, all of us are there beside her everyday, in our hearts and minds, right beside her, angels hovering by the bed, and surely she knows this. Angels, like bees, hover over the source of life and try to sustain it with whatever resources there are. We keep hope alive because hope is the source of renewal. Angels are everywhere. Angels are everywhere.

  22. Sheryl July 10th, 2008 1:14 pm

    Hello Craig,

    It’s Sheryl again. I can only echo what many have written more succinctly than I could. I hope you will consider a “wishing well” for Lina. It is difficult for our family here in the beautiful Pacific Northwest, the “other” Portland, if you will, to visit, but we would be honored to help out with a special love fund for your family. If you only knew how many people in the cyber world have been inspired by your work, it is truly overwhelming. If you believe in Karma, maybe we will see some of it come back your way. Peace. Thank you for working for it and, of course, justice.

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