Swimming, joy and sadness and MRD negativity
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.