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Journal

July
6
2018

Losing track of time

When I woke up this morning, I was sure it was Monday because yesterday felt so much like a Sunday. Then I realized that today was already Thursday so I have only 9 days til I check into the hospital, yowser. Sorry I know that’s a very confusing sentence but I guess I am kind of overwhelmed that the car t reinfusion date is very near now.

Gus must have sensed I needed a change of pace from the last few days sitting around the house and said I needed to put my clothes on as he was taking me to see “The Incredibles”. I was a little concerned about being in a movie theater with lots of little ones with germs but then I realized after my badass white blood cell production yesterday, I was at low risk. We went and it was a sweet movie to see with him and reminded me of all the fun times we had at the movies when he was little. I liked the short animated film, “Bao”, that was shown before it. Made me cry and made me hungry for some delicious bao.

When I got home, I confirmed my remaining appointments for next week: Monday final labs, Monday afternoon post-chemo baseline PET/CT; Tuesday, review Monday results w de Vos and get final approval from UCLA and KITE to proceed with return of CAR-T cells: Wednesday morn, catheter care, Wednesday afternoon, preconditioning chemo; Thursday morning, preconditioning chemo; Friday morn, preconditioning chemo.

I also got a call today from the “registration” crew at the Hotel UCLA (Main Hospital). Assuming everything is cleared and goes well next week, I check in at 5 pm on Sunday, July 15. My modified CAR-T cells will be returned to me mid-morning on July 16 and then we wait to see what happens. I will be on the stem cell transplant floor at UCLA.

Assuming I feel ok, I will be able to have visitors. The return of the T cells causes no damage to my healthy cells so I will not be immune compromised. 

Now I just need to organize everything to be away from home for a week or two but thankfully, home is nearby so the boys can bring me what I need or forget. 

Thanks again for being on the journey with me.

Love, Laurie

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