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Wednesday, September 24, 2008 - 2:11pm

PLGA Friends....

I hesitate to reach out to you all again, because I know how strapped everyone is for time.  But this is very important....

Project Brain Child (http://www.membersproject.com/project/view/NN934A) is 1500 votes away from getting funded by American Express.  Yes, we COULD actually do this!  We are SO close....yet SO far.  

If I could bother you ONE more time to reach out to your family, friends, colleagues, etc., to ask them to VOTE ASAP.  This could mean a HUGE kick-start for PLGA funding and research.

VOTES must be in by Monday,  September 29th.  The voting instructions are as follows:

2)  Click on "Vote for this Project"
3)  Click on "log in" 
4)  Log into your online American Express account*
5)  You will be returned to the Project Brain Child description page
6)  Click on "Vote for this Project"
7)  You are done!

*No Amex Card?  You can still help by sending this email to your friends/family/colleagues, etc. and asking them to vote.

Thank you so much for your support!

Thursday, October 2, 2008 - 8:06pm

We completed our second to last chemo trip to Madison on Tuesday.  We have one more next Tuesday, then a week of chemo from home, then an MRI.  If the tumor remained stable, then we will have another appointment to get Hailey's port removed by surgical procedure, and then at that point it is a waiting game.  We'll have MRI's every 3 months and for as long as the tumor stays stable, we will be avoiding any other treatments until some type of better therapy or a cure comes to the market.  We pray for a LONG period of time with no growth and for successful fundraising and research efforts during that time to bring something better to market.   If it does start to grow again, we are going to be in a very difficult position and have some tough decisions to make. 

Hailey's weight has continued to go up a little each week.  She is around 28 pounds now.  Doesn't seem like a lot, but it is a definite improvement from where she started and she is finally on the growth chart! 

So we are winding down towards the finish of what seemed like an endless number of appointments and trips to Madison when we first started over 70 weeks ago.  A lot of relatively good things have happened over the last 70 weeks.  What happens from here only time will tell.

Unfortunately Project Brain Child did NOT make it into the Top 5 of voting for the American Express opportunity.  We ended up #6.  Not for a lack of effort, but we could not generate enough votes or interest to get over the hump.  Thanks to those of you who did vote and/or spread the word.  Unfortunately, we fell a little bit short.

Speaking of fundraising, here is an update from Shannon's cousin regarding the 24 hours of fishing he and a few people did a few weeks ago:

Hi everyone, the 24 hours of fishing was a success!! First of all there were 4 fishermen as compared to 1 last year! We raised approximately $1500.00. We are still waiting for all the money to be turned in to get a final count! Finally we caught 3 muskies compared to 0 last year! Also lost one we couldn't see to get into the net just after dark! We have a video we will show at the golf outing which will prove entertaining to say the least! If there is anyone that would still like to make a monetary pledge you can still do that by sending me a check to the PLGA Foundation, or drop it off at the Park City Credit Union here in Tomahawk! Thank you to everyone that has helped us with our family fight!! 


I will try to get photos on the site in the coming days.

By the way, Shannon and I will be on the show ‘The Morning Blend’ the morning of October 9th to talk about PLGA and our cause.  Thanks to our friend Kim Kohlbeck who reached out to the show and got the ball rolling on this opportunity.  Neither of us can stand the look of ourselves on TV, but check it out if you get a chance. The show airs at 9:00 a.m. on NBC.  

And lastly, here is a good article on an exciting fundraising journey taking place on the East coast driven by another PLGA family: http://www.seacoastonline.com/apps/pbcs.dll/article?AID=/20080917/NEWS/809170368&emailAFriend=1

Monday, October 6, 2008 - 12:32pm

I neglected to mention in last week's update that we had Hailey assessed cognitively and physically last week by the Outagamie County Birth to 3 team and we are happy to report she is testing at or ABOVE her age in all areas!!  This is obviously great news considering the trauma her brain and body have been through the last 18 months. 

The Tomahawk Golf Outing took place on Saturday.  We raised just under $2000.00 which is about half of what we raised last year, but attendence was down as well. Mary and Brad at Edgewater were very gracious hosts and we all had a very good time.  Thanks to everyone who participated in the event, and to those who spent their valuable free time planning and working the event. 
We have set the date for next year, reserving Edgewater for Sat. Oct. 3rd! As of right now Hailey and Faith will be there for everyone in Tomahawk to finally meet them and put a face with the names!
This coming Saturday is the Milwaukee Golf Outing.  Details can be found in the EVENTS area of the site.  Here's hoping for great weather like we had on Saturday.  If you are going to be in the area, or know people in the area who would like to participate, there is still time to sign up through the site. 

Thursday, October 9, 2008 - 1:13pm

Here is a link to our appearance this morning on the show out of Milwaukee called 'The Morning Blend'  http://www.themorningblend.com/NewsArticle/tabid/1474/xmid/26124/Default.aspx

Thanks again to Kim Kohlbeck for setting this up for us!

Everyone involved with the show was very nice and easy to work with.  We cannot say enough how much we really appreciate the opportunity Molly and the rest of the team gave us.  We're forever grateful for their preparation and support.  And as further demonstration of what a pleasant and positive experience we had with them, before we even returned home from Milwaukee this morning there was a nice email from one of the show hosts (Molly) thanking us for our appearance and wishing us all the best. 

Not sure how long the link above will last, but at some point we will try to get a permanent copy under the IN THE NEWS tab of our site.