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Thursday, December 6, 2007 - 2:27pm

I am going to try to cover several topics in this update.  Stick with me...

On the fundraising front, Team Hailey has raised $26,420 for the Fight PLGA Foundation so far.  This does NOT count the results from the "Shop for a Cure" event or from "Hailey's Holiday Hope."  Those numbers will not be in for a few more weeks.  This number also does NOT include items purchased from the online store or those businesses who are partnering with us to become a Major Sponsor on our website.  That money is going into a flexible account for our family to use to offset costs or reinvest in fundraising efforts.  The 26K is strictly from Events, or the online DONATION button, or from donations mailed to us or the PLGA foundation directly and tagged as coming from Team Hailey supporters.

We realize we are not breaking any fundraising records yet, but this is a good start and we are SO appreciative of all you who have contributed in one way or another.  As we build momentum, we are excited to substantially grow these totals.  There are many angles and strategies we need to implement, so we look forward to reporting on our success in the future.

100% of the 26k has been forwarded to Fight PLGA Foundation and 100% will be put towards funding research solely for Hailey's SPECIFIC tumor type.  Which leads me to the next subject...what is this money being used for? 

As the efforts of the Fight PLGA Foundation progress, things are taking shape on the research front.  The approach and intelligence of the parents on the East coast who are building this from the ground up are impressive to say the least.  These are smart people.  We are very excited to be teamed with them.  The model we are moving towards is a multi-institutional, PLGA specific research program.  Approximately six to eight leading medical and research institutions from around the country working together FULL TIME with one goal in mind...find a cure for PLGA in the next 5 years. Similar to The Manhattan Project, but to find a cure for a brain tumor, not develop a nuclear weapon.  Obviously there is a lot that goes into developing, implementing, and managing a program like this, but it appears to be the best way to produce the results we are looking for and several of the key players in the medical and research community are already on board with the concept.  It will, however, take much more discussion and planning, AND likely anywhere from 8 to 15 MILLION dollars to fund this program over the next 5 years.  So Team Hailey and the other members of the Fight PLGA Foundation have our work cut out for us to raise enough funds one way or another to feed this program.  But if that's what it takes, that is what we will do! 

Since this entry is running long and I am out of time, I'll just end with a quick update on Hailey.  She continues to be doing pretty well on a day to day basis.  She has once again adjusted to her new tube feeding apparatus and things are pretty calm on that front.  We also sent off all her medical information this week to Dr. Packer in Washington D.C.  We will be meeting with him by phone in the coming weeks and see what new information and insights that brings, if any.  Otherwise it is business as usual in our house.  Faith is doing well, the girls are excited for Christmas, Shannon and I are doing our best to try to balance everything, and we continue to push forward full steam ahead.

If anyone is still reading this entry, thanks for hanging in there.  I'm sure there will be much more to come in the near future. 

Wednesday, December 5, 2007 - 4:22pm

Those of you who ordered shirts or hats from the online store in the last ordering period, YOUR ITEMS WILL BE COMING SOON.  We sincerely apologize for the delay.  Admittedly, we are still working out the kinks.  The current ordering period also ends this evening and we are on track to have those orders delivered prior to Christmas as well.

Again, our apologies and thank you for your patience.

A longer update on several fronts coming soon...

Monday, November 26, 2007 - 1:13pm

I'm squeezing this journal entry in quickly before I run off to an appointment.  It has been hard to find time and energy to update lately but we know people are interested in the results of Hailey's MRI and how things are going in general.  So here goes...

Hailey's tumor has not shrunk nor has it grown.  There has been no change, which is what we expected.  In early december we will be sending all Hailey's info to Dr. Roger Packer in Washington D.C.  As I've noted before in these updates, if there is such a thing he is one of the "experts" in this field.  We'll see what that brings.

All in all Hailey is doing fine.  She HATES her new feeding tube.  Long story short, we are back to battling her every feeding and seriously doubting whether we should have allowed a change to this style tube.  Hopefully with more time she will adjust and fall into a routine like she did with the last one.  The story of her life...

The Shop for a Cure event went very well last weekend.  Thank you again to all who planned, participated, and attended.   WFRV came to the event.  You can check out the video on www.wfrv.com.  Look to the right at the video section, there is a picture of Hailey and Faith.  When you hit play, a commercial comes on first, and then the newscast. The final numbers will not be in until sometime in December, but we will try to report back on results when we know more.  Many of the vendors who participated have also agreed to share proceeds from future shows that stem from the event, so the benefits of this day could trickle in for months to come in theory.  Anyway, it was a great day and we once again want to thank people for the incredible support.

Monday, November 19, 2007 - 1:18pm

Tomorrow is a big day for two reasons: 

1.)  It is Faith's birthday!  Our baby is turning 4 (going on 14 at times).  It is cliché and all parents seem to say this, but time truly does go fast!  We are going to take the girls to Chucky Cheese (as much as we can't stand the chaos of that place!) and then Hailey will head home with Shannon, and Faith and I will go to the parade in Appleton.  Faith is very excited.  Today she brought her classmate’s bananas for her birthday treat.   That's funny. 

2.)  We head down to Madison early tomorrow morning with Hailey for another MRI.  While she is asleep for the MRI, they are also going to replace her feeding tube with a button, meaning no more long "tubey" hanging from her body.  We can take care of both procedures in one shot, sparing us and Hailey another trip and a mountain of stress! 

The results of the MRI are likely not going to be a mystery.  We obviously hope the tumor has not grown, but it seems there is very little chance it has shrunk since the last MRI as she still has not gained any significant weight.  Regardless, we are anxious to get this MRI completed so that we will have a total of three MRI results since and including diagnosis to send off to the Doctor in Washington D.C. I mentioned in our last journal update.  It is time to have another set of eyes and another institution or two looking at our case just to be sure we are not missing anything.

The rest of the week will then involve family, friends, and food!  The Thanksgiving celebration begins on Wednesday evening and in some form or fashion will last through Saturday for us.  Despite the circumstances, we do still realize every single day that we have a lot to be thankful for, so why not extend the holiday a bit!  AND FOR THOSE OF YOU EARLY AND PROACTIVE HOLDIDAY SHOPPERS (or if you are just looking to treat yourself to some new purchases) DON'T FORGET THE “SHOP FOR A CURE” EVENT THIS SATURDAY FROM 10:00 a.m. - 2:00 p.m. at THE WAVE IN APPLETON.  Details in the Events section of this site.

And last but not least, the Packers are 9-1!  The next two weeks are the true test.  Detroit, and Dallas!  Two offenses that could expose our defense and two DIFFICULT road games.  I am reserving my overall opinion on whether The Pack are a legitimate superbowl team until after these next two games.  We'll see....but love the season so far!

A happy and safe Thanksgiving to you all!