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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

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!

Friday, September 12, 2008 - 11:11am

The results of Hailey's MRI indicated the tumor has stayed the same.  It didn't shrink since last MRI, but it didn't grow either.  Better than the alternative I guess.  Whether it would have shrunk or not, the big picture would still be the same - we need to find a cure!  So we battle on...

Check out the article Michael King of the Post Crescent did on my Uncle Tom and the effort he and my Aunt Charla have put forth to support our cause.  http://www.postcrescent.com/apps/pbcs.dll/article?AID=2008809120589

Wednesday, September 10, 2008 - 11:10am

Very early tomorrow morning we head to Madison for another MRI.  We have not had a reoccurrence of the incident we wrote about a few weeks ago where Hailey woke up in the middle of the night and complained of her head hurting. She woke up seemingly unaffected and business as usual the next morning, so we are hoping it was just a goofy 2 year old thing and completely unrelated.  Otherwise, Hailey has been continuing to do very well all things considered.  She handled the last round of treatments very well again, and on a day to day basis she appears to be doing everything a "normal" 2 (almost 3) year old would do.  But tomorrow we'll find out with more certainty what is happening in her little head.

Faith is also doing very well.  She is growing up so fast.  Since her birthday is in November, we chose not to test her and instead wait one more year to start her in kindergarten, but she and Hailey both continue to go to what is basically structured like a pre-K program three days a week at a church in Appleton who do a tremendous job with the kids.  They love it and are doing very well.

Thanks to all of you who voted on the American Express "Project Brain Child" funding opportunity.  The first phase is completed and we have made it to the Top 25!  Now only American Express card members can vote to get the nominees down to the top 5.  For all of you who are American Express cardholders, or know people who are cardholders (or are willing to become a cardholder so you can vote), here is the link to do so:


Voting ends September 29th!