Brief Update

To All-

Before I get into a very brief update I have to confess something to you. After a re-read of our first post I felt a little embarrassed that, with all the research that we've done regarding Rets condition that I basically said "you can do it yourself" I'm sorry for that. As you can imagine we have, as said, researched the daylights out of Rets disease so I felt at least I could provide each of you the ability to educate yourself just a little and who knows how that may help you, a friend, a family member or maybe someone you might just come in contact with. There are numerous sites for you to visit but because we are having treatment at the Fred Hutch and the Seattle Cancer Care Alliance I figured that at least I could provide you the links to those sites so here they are:

http://www.seattlecca.org/default.cfm

http://www.fhcrc.org/

Believe me they have more info than you comprehend as well as links to numerous more sites, hopefully this will provide you with additional information.

As I mentioned in our first post because the multiple myeloma attacks the skeletal structure, Ret has severe osteoporosis that basically of a 85 year old woman. An actually how we started on the road to where we are today was because she developed hairline fractures in eight of her vertebrae in her spine giving us cause to search for a remedy. Well because of her osteoporosis she has to sleep in a recliner, because laying flat in bed exerts too much pressure on her spine. Unfortunately it's extremely difficult for her just to get out of the chair in the morning, usually it takes anywhere from 15 to 20 minutes. Ok I know you're saying where's he going with this, guy's this is for us, I bought one of those power lift recliners, what took 15-20 minutes now takes maybe 5! Guy's guess who's going to use it after we get her back on track me of course naps, beer, ball games and one touch of the button to help lift me up and get me to the bathroom how cool is that, just think then Ret won't have to do it. But seriously you can't imagine what a psychological boost it has been for her.

In addition I hope you understand that my crazy humor is also a way for us to deal with what has become our biggest challenge in life. What I also hope you see or maybe read between the lines is that it truly is the little things that can make a huge difference in how someone feels about their condition, themselves or just trying to navigate daily life when burdened with life challenges.

Again thanks for all your love and support.

Ret and Jack