What should I do if my mom has Sezary Syndrome

Hi everyone,

I thought I would post something here because I don’t know what else to do. Please excuse my English — I’m a native Spanish speaker.

This is the story:
My mom was recently diagnosed with Sezary Syndrome. Her face turns red, some days more than others, and she has outbreaks on her chest, stomach, arms, and back. We live in a small city in Colombia, and so far she has received chemotherapy with CHOP, FC schemes, and Cytarabine. With the last one, it seemed to be working for a moment, but her leukocytes went from 50k to 100k (they were initially at 200k).

The doctor said that if the last chemotherapy doesn’t work, she would have to take a monthly injection for life — but that sounds very strange to me.

I’ve thought about sending her to another hospital in a bigger city, but she doesn’t want to go, especially because of the cost. That isn’t a problem for me — I would pay for it — but it is for her. It’s also really hard to find someone to talk to about this or to get in touch with a specialist, because this illness is very rare. And she is desperate.

Could someone give me some advice? I don’t know what to do. I feel like hope is slipping away.