Happy Birthday Kay!

This was Xmas 2010, mom still looked pretty healthy and this was 8 months ago. It just shows how fast this shit takes its toll.

Today is mom's birthday. We've got most of the family here to celebrate and visit. I just pulled a caramel cake out of the oven and there's a chocolate one cooling on the rack. Major cake construction tomorrow followed by festivities and a home cooked fried chicken meal. I see lawn bowling and boards games in my future.
As an early birthday present we ordered mom an HP Touchpad tablet. It's super light and easy for mom to use and there's Angry Birds to play all day. It's nice to have something new for mom to do in her chair all day. Speaking of chair... we got mom a medical lift recliner on craigslist, so we can cross that off the wish list. It lifts her into an nearly standing position and has relieved some of Kathleen's lower back distress. Plus, it's a lot easier for mom to alternate her sitting position and relieve pressure points without having to be lifted by someone. So it's been a pretty good early birthday this year.... and she hasn't even opened any presents.
I thought today would be a good day to say thank you to everyone who has donated or reposted links or sent well wishes. The anonymous donors really get me... to be so generous and not even attach your name, it's so selfless and awesome. The named donors are amazing too, strangers, family, friends, coworkers... everyone is pitching in and it's much appreciated.
I am going to take the advice of my GiveForward.com coach, Michael, and do a 24 hour donation drive. It would be amazing and awesome if we made it to $5k on mom's birthday, so get out there, get posting and raise funds like a boss!

Trials

I've been contacting different hospitals about the NP-001 trials. The Portland location said they have 2 openings and a long waiting list amongst their current patients. There's another site, in Centralia, which is closer, and the nurse called me today. Mom is on her list of possible subjects. There's a bit of a process, but we're moving forward. We've got to sign paperwork and get her down for a physical and testing. Then it'd be 5 weekly infusions followed by monthly infusions after that. I have every finger and every toe crossed that we can get into this trial.

In even happier news... we met our initial $2000 goal on Operation Kay! I've decided to increase the goal to $3000. Everyone has been so generous that I figured continuing the fund raiser couldn't hurt.

Thank you to anyone who is reading this, reposting the link or donating. I will be making a trip to Joann in the next couple days to get the supplies to paint rewards for donors. Anyone who hasn't sent me their address please do so I can thank you properly. email valoreekaye0@yahoo.com

Definitive

Yesterday we got the definite ALS diagnosis. Today mom told her mother and her sisters. It was a tough day all around.
I've decided to scrap the China idea for more concrete treatments. There are some clinical drug trails that are recruiting in our area so I'm focusing our fund raising efforts on getting money to help with travel expenses, co-pays and general medical costs.
Hoping to raise a more modest and attainable $2000 to start off. If we end up going to Portland every other week for 6 or more months then I'll eventually have to open another fund raiser, but I'll worry about that later.
Thanks to anyone who is reading and to anyone who is willing to help. I still plan to paint special post cards for anyone who gives to our cause.