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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:

http://www.membersproject.com/project/view/NN934A?cid=MP08_email_voting_top25email2

Voting ends September 29th!

Tuesday, August 19, 2008 - 9:32am

I am writing with an urgent request, because 5 minutes of your time could mean up to $2.5 million donated to PLGA brain tumor research.

As of today, August 18th, the PLGA Foundation is in the running for a HUGE grant from American Express's philanthropic program. The hitch is that we need to get 10,000 people to NOMINATE the project BEFORE August 30th in order to be considered as a candidate for the funds.

This is where we need YOUR help. Nominating is EASY. Just four steps:

1. Go to http://www.membersproject.com/project/view/NN934A which will automatically bring you to the summary of the "Project Brain Child" project
2. Click the "NOMINATE PROJECT" button
3. Sign in (If you are an Amex cardmember use your ONLINE user name and password as if you were viewing your credit card statement. If you are not an Amex cardmember sign in as a "Guest")
4. Click on "Nominate Project" again to register your vote.

You are done! THIS TAKES 5 MINUTES TO COMPLETE.

For those of you who have time to do a little more.....when you are at http://www.membersproject.com/project/view/NN934A you can also click on the "Discussion Board" link at the bottom of the page and write a message that tells American Express why this is so important. (For example, no funds available, current treatments are toxic and punishing, not to mention ineffective, etc.)

The ultimate thing you could do is reach out to your friends, colleagues, family, and any other groups where you might get the membership to vote for the project as well. (Feel free to also put the request on Facebook,MySpace, etc. page. and ask everyone to do the same.)

The goal is HUGE, but 'viral marketing' can work...if each one of us reaches out to their email contact lists. We stand a chance if we stand together!!!!

PLEASE, PLEASE help us get these funds for PLGA research.

Thanks so much!

Amy Weinstein
Executive Director
PLGA Foundation

"PLGA Children should be able to fight for their dreams, not for their lives."

Friday, August 8, 2008 - 8:30am

Last night we had what was hopefully a false alarm, but is definitely an all too scary reminder of the reality of our situation.   

At about 11:30 p.m. Hailey woke up crying and saying “ouwie”.  Hailey has been sleeping great lately, so the waking up alone caught us off guard.  She was uncomfortable, restless, gagging and appearing to be nauseous.  We brought her out of her bed and got her a drink and held her while she cried, squirmed and in her own heart-breaking little way kept saying “I not feel good.”  At one point when we asked her what hurt, she said it was her head and as soon as we heard that, we both actually felt like throwing up ourselves.  “Controlled panic” is the best way I can think to describe what goes through your mind.    

It is a very common thing for people with brain tumors to wake up nauseous and with a bad headache as a result of the tumor.  Since this is something we have never experienced with Hailey (or at least she has never been able to articulate to us) it would mean something was likely changing for the worse inside of her.  It’s difficult to describe in words the feelings that come over you when confronted with what seems like tangible evidence of what we know to be our current reality…that there is a tumor inside of our daughters head that could grow at any time, without reason, and we currently have nothing available to us to take it away.  Last night was an unwelcomed reminder of all the terrible scenarios we have been very “lucky” to avoid so far. 

After a few minutes of holding Hailey on the couch, we took her into bed in our room where she continued to toss and turn but eventually went to sleep for the remainder of the night.  As of this morning, she appeared to be just fine and back to business as usual, but that little episode scared the crap out of us.      

Needless to say, neither of us slept very well the rest of the night and I am admittedly affected at least a little bit this morning by the bad thoughts trying to creep into my head.  I guess this is just the life of those who love someone with a tumor.  Let’s just hope it truly was a false alarm.  Oh ya, and it’s still a bunch of B.S. that we even have to worry about something like this to begin with!

Wednesday, July 23, 2008 - 2:19pm

It's been a while since we've updated, but things remain the same on this end.  Relatively speaking, we continue to do fine.  We have struggled to write updates simply because of how busy we've been and since not a lot has changed it has been challenging to get motivated to write the same type of update week in and week out.

We are finishing up another round of chemo next week.  Hailey's handling it well as usual, at least from what we can tell.  Her weight has stayed about the same or increased slightly over the last several weeks, but we found out yesterday she is actually on the growth chart for weight for the first time since I don't know how long.  She is in the 10th percentile.  Better than off the charts I guess.  She is 50th percentile for height.  And all in all, she seems to be developing normally so far compared to other kids her age.  Another MRI is approaching in a few weeks so we'll see what that tells us.

Fall and winter will bring more fundraising events. Please continue to check the EVENTS section of our site.  There are some interesting and hopefully promising things on the horizon from the PLGA Foundation as far as research goes and the quest to raise awareness in general. Stay tuned.  Our efforts to garner the attention of a national "celebrity" or media outlet to help us tell the PLGA Foundation story have continued to go unsuccessful, but more attempts are in the works.  We're certainly not giving up on that front. 

So we're just here plugging away trying to balance too many things, and seemingly not doing any of them as well as we would like, but we battle on.

Hope you are all enjoying your summer and finding a way to balance family, friends, health, and career.  We'll update again soon.