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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.


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.

Wednesday, June 18, 2008 - 4:24pm

We are enjoying our time off from chemo and trips to Madison.  Hailey and Faith are doing great.  They are funnier than ever and the few weeks of relative calm have done us all good.   Yes, I said "relative" calm.  All things considered we are doing as well as we can hope right now. 

Keep checking the Events section of our website.  We are in the planning stages of some new (or 2nd annual) fundraising events for later this summer and into winter/spring. 

We are also continuing to look for that major breakthrough on the awareness front.  We are hitting Oprah from several directions...I know she gets thousands of these kind of requests/inquiries a year, but man that lady is hard to reach!  I have no idea if any of it will work, but we're not giving up.  We are also racking our brains (with the help of many others) and sending out messages to people and organizations trying to come up with a few famous spokespeople for the PLGA cause.  The #1 cancer killer of children, and the #2 overall killer behind accidents is certainly a worthy enemy for more of the public to help fight.  Come on Oprah...there's a story here!!

Here is a creative, inexpensive, and simple online fundraising effort one of the other PLGA families is doing. www.colorforacure.org Check it out.  All proceeds go to the PLGA Foundation as usual.

We will also be making some changes/improvements to our online store in the near future, both to the products and possibly the look of the site as well. 

Stay tuned.  We're still here plugging away at life and trying to make medical history!