I am CAR-T19

a Very Small Storm

a Very Small Storm

I am now 4 days past my car-t cell infusion. The toxicities with this treatment are called Cytokine Release Syndrome or CRS, they also call it the “Cytokine Storm.” I like that better, it sounds like a ride at a theme park. The Cytokine Storm can be an indicator that the new t-cells are in there doing their thing. However, some people have no signs. I asked every possible question I could think of as to how the side effects relate to results. I’m an over-achiever like that. The side effects include fever, low blood pressure, neurological difficulties, and a few others. If I run a consistent fever above a certain threshold I will be admitted to the hospital to rule out infection. If any of the side effects are extreme it’s the hospital. I don’t like spending time in the hospital, but my reaction was sign me up. Get me a room, I’ll take a few days with a side of cancer curing.

Imagine my disappointment when I had no fever. My reaction was to take my temp again a few dozen times. No fever. Day 2 I had some dizziness. I was thrilled…but I wanted that fever. Yesterday I noticed a barely perceptible heat. It crept up. My temperature, like my blood pressure, already runs low normal. For me, I was over 1.5 degrees above my normal, and –best of all– officially I had a fever. It lasted at least 5 hours, long enough for me to start feeling sick.

As I sit here, thermometer in mouth again, I’d like to say thank you t-cells! You be good to me, and I’ll be good to you. Alas, I’m back to normal.

2 thoughts on “a Very Small Storm

  1. Dea Dietrick

    Hi Stephanie.
    I’ve been writing prayer requests for you the six weeks or so. There are an estimated 250 + praying for you instantly (since I request they pray the minute they receive the request so as not to forget) and ask them to forward the request to their friends; the + ones.
    I don’t get to talk with your dad very often; he is kind enough however to send updates; but this weekend he mentioned you are feeling better, was out to dinner with your sister celebrating (didn’t mention why), but that your fever and related side effects have passed. Of course, this was after I issued two prayer requests that reach the eyes of about 3,000 people since I have an inroad in the church (have been trying to be incognito LOL). The request: God cause a fever, curb side effects, and put you in complete remission, never to deal with this again! Oh, well! Complete remission is the focus anyway.
    I want to applaud you for your endurance and courage in this horrendous battle. You are an amazing young woman. I know how trying and frightening this can be and the anxiousness that can well up inside. But, I know we have a great God (Jehovah Rapha; the God who heals) and He is only for your (our) good. Two of my favorite verses: Ps 91:4 and Eph 3:20 (prayed for you daily) plus the physical. It is my earnest prayer that He will relieve you quickly from this battle, give you incredible hope and faith and trust, and move you forward to exercise your awesome creativity in photography.
    Please keep me updated and let me know of anything specific you would like prayer for as I am honored to use my position to serve you.
    Dea Dietrick

    1. canon1dx Post author

      Thank you for your kind words Dea, and for enlisting the help of so many to pray for me. I appreciate it more than you know!

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