[Chirley]

Hi,

Well, I did it. I have cancelled my daycare appointments. It's been 4weeks since I've had IV Copper and the last time I was without parental copper I relapsed into bone marrow failure within 10 weeks. So the next 6weeks or so will be interesting to say the least.

I have noticed my neuropathic pain in my feet has worsened and I have increased spasticity and stiffness in my legs but I expected my neuro problems to get worse so maybe it's psychological.

Catherine, hope you and Bruce had a lovely Christmas and New Year. Mine was a little sad because my Dads only remaining brother passed away. My uncle died in Sweden and Dad felt so useless being on the other side of the world and not being able to be there for him when he was so sick. My Dad is acting like nothing happened but I can read him like a book and I know he's hurting. I brought out an old photo album and sat down with Dad and asked him questions about the photos and he was soon talking about his brothers and sisters and telling funny stories from his childhood. I hope it helped him to talk about it just a little.

I was wondering how Bruce is going without his copper treatments. Is he
requiring more transfusions now? is he going to start treatment with the Revlimid or Vidaza?

We are just about to get a storm so I had better go and bring my dogs in..they are both very well..I'm very blessed.

Regards