Hello Kitties & Friends!
This is Paula, the mom here are Twinkletoes. Marg very kindly told you of our troubles, and I wanted to let you know what is happening because its likely we will stop posting soon for a little while, and also because people weren't quite sure who was sick.
Just before last Christmas, my mom was diagnosed with AML, or Acute Myeloid (or Myelogenous) Leukemia. Early last January my mom, dad and I went up to Johns Hopkins to figure out the best game plan for her. What we learned was because of her age (79), the very high white blood cell count and a previous diagnosis of MDS (Myelodysplastic Syndrome, a form of pre-leukemia), her prognosis was very poor. They said she had a very advanced and aggressive cancer that grows extremely rapidly from which there would be no chance of remission. They also thought she had 2 lines of cancer.
The best chance of beating her type of leukemia is a bone marrow transplant, but because of her age, that wasn't an option. Not only did the doctors feel she wouldn't be able to handle the usual regiment of chemo, her type of leukemia doesn't respond well to chemo. She would only have a 20-30% chance of responding. If she chose to do nothing or if she didn't respond, she would have another 2 or 3 months. With chemo, her life expectancy would double to 4 to 6 months.
Her best chance, the doctors felt was a new clinical trial drug, Vidaza. She had a 50% chance of responding, and it could extend her life as long as a couple years. They had one 81 year old lady who lived until she was 88. The side effects are minimal compared to regular chemo, too. It works by killing cancer cells and forcing immature cells to mature. (In leukemia, the blood system is overwhelmed by immature white blood cells.) Vidaza seemed like a no brainer.
So she started chemo. After a rough start and most of February in the hospital, she started to respond and did really well on it until a couple weeks ago. They even changed her schedule from 5 days every 4 weeks to 4 days every 6 weeks. Then she caught a cold and the cold turned into pneumonia. Her white blood cell count went way up. Thursday they did another bone marrow test and discovered she had developed another leukemic clone (another line of cancer). The Vidaza had stopped working. Her white blood cell count went from 28 to over 100 (normal is 4.5-10).
Three oncologists conferred and agreed if she continued with chemo, she had less than a 5% chance of responding and if she did respond, it would buy her only minimal time. They didn't think changing the chemo would make any difference. They have given her a couple weeks to live. So she came home from the hospital Saturday and today, Sunday, the hospice workers set her up on oxygen and started their care.
I called my aunt, my mom's older sister who lives about 5 hours from my parents and asked her if she wanted to visit. I offered to come get her and take her back home whenever she wanted. I am so grateful to one of my cousins who drove my aunt down today (I'll be taking her home). My mom was so happy she cried when she saw my aunt. I knew the one thing I could do to comfort my mom was to arrange for her to see her sister.
Yesterday my mom could carry on a conversation, but today it was such a effort and we could barely make out what she was saying. She's very restless, but I hope she will be more comfortable when they set up a hospital bed for her tomorrow. There wasn't much we could do, rub her legs, talk to her, be there with her. I did some shopping, baking and cooking, and got my aunt's room ready.
Its been a busy time. I'll post as I can, but I am going to beg off commenting for tonight. Its been a tiring weekend. Please just pray my mom doesn't suffer, that she will slip peacefully away. Thank you so much for your support. It means more than I can say. I didn't mean for this post to be this long! God bless you all.