This journey hasn’t exactly been linear, which I guess means that today’s curveball was just another Monday. We were back at UChicago today for a check-in. Cathy’s blood counts have recovered from the bendamustine, but the marker they look at to track cancer growth is on the upswing again. If you’ve been following along, originally the CAR T therapy was going to begin at the end of July. That was then postponed to next week to get an additional drug. Now it’s being pulled forward again and Cathy is being admitted tomorrow to kick off the treatment. Her care team doesn’t want to wait any longer and given her blood counts are good, and the cells are ready, they want to proceed as quickly as possible. While a bit whiplash-inducing, we’re glad the waiting is over and we can begin the next phase.

Tomorrow will be a day of tests: bone marrow biopsy, a CT scan, and a sample SAT. These will provide a new baseline to serve as the benchmark post-treatment to determine effectiveness of the CAR T therapy. The sample SAT will be compared against her scores from her original exam in 1974 to assess the neurological impact of raising three kids (editor’s note: she will, in fact, not be taking an SAT).

On Wednesday, she’ll start low dose chemotherapy which will run until Friday. While this can help halt lymphoma, it’s primarily used to weaken existing T-cells so when the engineered ones are infused they have a Darwinian advantage, and can more easily take over. Saturday and Sunday will be rest days, and then Monday she’ll receive the infusion of the engineered T-cells.

This infusion then starts the clock. For the next 30 days, even in the hospital, she’ll need an around the clock “caregiver.” One potential side effect of this treatment is neurotoxicity, and to make sure it’s caught as early as possible so that it can be controlled, it’s best to have someone who knows her well as some subtle signs can missed by the doctors and nurses dropping in. I (Glenn) will be staying with her the first week, Cathy’s sister Christy will be staying the second week, and we’ll continue trading off until the day 30 mark. Owen will continue to live with Lindsay and Rob which has been the case since late June when this all started. And Suzanne will play primary zookeeper to our monkeys while I’m away. It’s truly a team sport. If you know me though, “caretaker” probably isn’t high on your list of descriptive adjectives, so when I’m on shift I’ll need a more appropriate description, and I think I’ve settled on the most appropriate one: emotional support animal.

Cathy appreciates all the love and support she’s received over the last couple months, and she’ll need that continued support as we move into these critical weeks. If there’s one thing we’ve learned through these dumb and unfair circumstances it’s that the true source of a wonderful life resides within family and friends. We are eternally grateful for the meaning and happiness you’ve created in our lives. Thank you for being part of our tribe.

4 thoughts on “It’s Go Time

  1. Thanks for the update, Glenn. I really appreciate these emails. I hope everything goes as planned. I’ll be thinking of you all. LindaSent from my T-Mobile 5G Device

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  2. Sending Cathy and everyone who is caring for her all of the love and grace in the world. We’re all out here cheering her on!

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  3. Sending prayers for the very best outcome. The way your family has supported one another throughout this difficult time is a lesson & inspiration to many.

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  4. Cathy. I’ve been thinking about you lots and sending healing thoughts and prayers. Thanks Glenn for sending updates. I went through an autoglous stem cell transplant back in 2004 ( can’t believe it’s been that long now) for NHL but mine was follicular so very different than yours. I know they’ve made great progress in putting NHL in remission. I wish you only the best and knowing you have great doctors, lovng family and friends you can do it!!

    Bev Miller

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