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Day + 8 for CAR-T for CLL (chronic lymphocytic leukemia): A Family in Good Spirits

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Day +8

MARCH 30, 2018
Patty and Heather writing together here.
Patty’s report: Last night was rough, with Brian dealing with rolling fevers and much talking in his sleep, but we have no fear. What does Brian say in his sleep? Positive affirmations, like “This will all work out!” “We can do this!” “Everything is fine!” and “That’s good!” He also makes suggestions as to how to improve the CLL Society — in his sleep! So why no fear? Because the medical team here is experienced and stays ahead of any potential complications with careful observation and prophylactic medications.
Today Brian’s temperature has been more stable, and he feels like today has been gentler in the ups and downs of his fevers, chills, and shakes.
And Heather’s update: We were visited by the rabbi from Chabad today, to get us set up for Passover. The rabbi was tickled to see the family in such good spirits. He brought us haggadas, homemade brisket (poor vegan Brian didn’t get any!) and traditional matzah from the Ukraine. The rabbi talked to us about matzah as not just “the bread of our oppression” but also as “the bread of faith” and “the bread of hope.” Nisan, the month of Passover, is the month of miracles — an auspicious time to take a bold step.
Tonight we FaceTimed with Scarlet (Patty and Brian’s granddaughter, Heather’s daughter) so she could lead us in the blessing over the Shabbat candles. It’s such a sweetness to be able to connect across the distance. And after the Shabbat blessing, the three of us had a quick seder together. The message of Passover, overcoming the seemingly insurmountable challenge, moving from bondage into freedom, is a clear fit for what we’re doing here: Brian seeking to leave the oppression of his CLL.
Next year in Jerusalem.

7 Responses

  1. Wishing all of you a Happy Passover
    Brian your strength and positivity gives us all hope.

    Sending lots of love!

  2. Very much appropriate. Good positive vibes to the Koffman family this Easter weekend! Thank you for keeping us updated – Chris in San Diego

  3. Thank you so much for the update and for uplifting our spirits – such a wonderful and loving message, which benefits us all.
    Hugs all around and thinking of Dr. Koffman and your family everyday.
    Looking forward to a speedy recovery!
    DIane

  4. Thank you ladies for updating us!
    I’m so glad you got to have encouragement and celebrate Passover.
    I love that Brian is speaking affirmations in his sleep. Continued prayer for a gentler reaction, with the great results we all hope and pray for.
    Terry & Linda Lee

    1. Hello, Terry & Linda. I often wonder whether Brian’s tenacity in dealing with life’s adversities is fueled by these encouraging internal prompts. It’s just so amazing to hear a litany of encouraging words from him… in his sleep! Wishing you and yours all the best. Patty

  5. Hello Patty and Heather, thank you all for the update I am praying continually for Brian’s full recovery and CURE , Brian along with a few others have inspired,given me hope ,and educated me about this very dangerous disease we have to deal with ,. His hard work with the cll society will help me and I am sure many others make very informed decisions in future treatment options, which are extremely important. Thank you my friend Dr Koffman and may God bless you abundantly ,and may HE bless the hands and minds of those caring for you !!! Joseph. T. Baudino. Jacksonville Florida.

    1. Dear Joseph, We are very appreciative of your feedback on our work. We will continue to work relentlessly on behalf of CLL patients and their caregivers. Thank you and wishing you the very best of health, also!

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