The information shared here is what Amanda has compiled together. We realize it’s above and beyond what some people can follow, so we don’t want to include it in CaringBridge. But we wanted it to be available for anyone who is curious — or for anyone who may actually need it. Some may only be relevant to sarcomas. But always double check if you see something that sounds good. We’d see something that was helpful for one type of cancer, and research to see if anything had been tried with that drug, concept, etc, for sarcomas, particularly leiomyosarcoma. When things went downhill, which didn’t take long, we stopped keeping up with this. Amanda may go back and add data to it later, as she can stand to, to help others.

  1. Metastasis
  2. Tumor Testing (Estrogen, Progesterone, and Androgen receptors)

These may or may not be specific to what Teresa has, but we’re sharing because it may help someone else.

Pressure Sores:

They let T’s pressure (bed) sores get to stage 4 before they tried to do anything, and combined with everything else, it was far too late. It was one of the many huge mistakes they made which led to her demise. Anything we suggested to take the weight off her body from the tumor, or her body on the sores, were immediately shot down as, “too difficult”. Even one we had tried at home to take the tumor pressure off of her lymph system, which helped a lot and helped quickly – too difficult.

It wasn’t; it simply involved her laying on her stomach on a massage table cushion for pregnancy. The hole in the cushion supported the weight of the tumor. We visibly watched her legs reduce in size within 30-60 minutes. We offered to purchase the cushion ourselves. They wouldn’t do it, and the only thing they did to “help” her legs was to basically scalp them every so many days — an agonizing and brutal procedure for someone already in severe pain. Even the dilaudid wasn’t enough.

I have photos of T’s pressure sores/bed sores. What happened to her is unconscionable. 

And the hospital had the nerve to send a letter later saying they had provided appropriate care for her needs! 

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