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@ruttgerbay

Thanks for asking. Be prepared for an up/down roller coaster ride,. The infusion was nothing, but four days later she was in the hospital with CRS and neurotoxicity ...just like they said would happen. The first few days she was basically non communicative ...just guttural sounds. As time went on, it became words, kind of mumbles not unlike a stroke victim. It slowly got better to where we could carry on what would pass for a conversation. Yesterday was the best she had been since hospitalization 17 days before. Then yesterday pm it went to heck in a hand basket. She became totally confused and delusional. Today she'is extremely tired and uses simple yes and no in response to any comment. The nurse practioner says.she's doing as expected, and doing well, although it will be a long recovery. The hardest part is the total isolation from her, although we do FaceTime. I'm just kind of afraid to do so because I never know what will be on the other end. One thing I'm doing is keeping a day-by-day journal in case she ever wants to know what went on. It also makes me use my mind in this world of extremly limited human contact. But if it works...all the tough times will be forgotten.

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Replies to "Thanks for asking. Be prepared for an up/down roller coaster ride,. The infusion was nothing, but..."

Hello @ruttgerbay - Keeping a journal is a great idea, It must be difficult to support from a distance.Take comfort in what you were told that she is "doing as expected and doing well".
This treatment, at least for me was quite tough. When I was hospitalized, my family was told the same thing. They trusted the information they received

Without a doubt, this treatment does have a chance to work.

How are you finding the Gift of Life Transplant house?

Stay safe.