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Friday, June 6, 2008 - 9:02am

Exactly 1 year ago today our world got flipped upside down forever. 

It was the morning of June 6, 2007 that Shannon took Hailey in for her MRI at Appleton Medical Center and it was later that afternoon that we got the mysterious yet all too telling call from the Doctor’s office saying they "needed to see us right away…we'll talk to you more when you get here…you and Brian both need to come."  Even thinking about that moment now and about the phone call I took from Shannon right after she hung up with the nurse, literally makes me sick to this day…the panic and fear in Shannon’s voice, the instant nausea I felt, the way the world was spinning my entire ride home and for the next several days I can remember...in our hearts we knew what the appointment was going to be about and absolute panic and horror had set in.  We'll never forget that day and the set of emotions that came with it.  Wednesday, June 6, 2007.  And one year later, we still can't believe this is happening to our family and our little girl.

We've had a lot of very difficult moments since then, experiencing things and sadness that I could not even begin to accurately describe in words.  But we do realize we also have a lot to be thankful for as so far this journey has gone about as good as we can hope, and we are still being allowed to operate under the best case scenario at this point.  And the love and support we have felt from countless numbers of family, friends, neighbors, and complete strangers…UNBELIEVABLE!  Truly unbelievable.

So thanks to all of you who have followed our story over the last year.  Please keep helping us spread the word.  We are still only a few steps into a long, grueling journey.  We have to find ways to raise massive amounts of awareness and money and beat this thing before it is too late for our family and the many many thousands out there who are in the same situation.

Shannon forwarded me a portion of a recent journal entry from another Mother of a child with PLGA. This mother was updating on how hard the treatment process has been on her child and how after the first course of treatment had failed they were currently on a second option and it too was really wearing down their daughter.  We appreciate and deeply sympathize with their situation, and we connected with her analogy in the last line.  Thought I’d end with this reality…

"Today just reminds me how much we really need to focus on finding less toxic and more effective treatments for Caroline. We don’t even know if this poison is going to work any better than her last protocol. But again, it is all we have right now. It is disgraceful that the front-line treatments for Caroline’s tumors date back to the days when I was using an electric typewriter with erasable paper, listening to music on a dual cassette tape player and took my phone calls on a wall mounted slim-line."  

Monday, May 19, 2008 - 9:48pm

No Monday depression for us tonight.  Hailey just finished up several chemo treatments in a row, and now we have a break for a couple weeks so we do not have to go to Madison tomorrow!  In two weeks we will give her chemo from home for 5 straight days, and then we will have a break for another couple weeks so our next trip to Madison is actually not until July!!   

Hailey has been doing about as well as we could have hoped.  There still have been little to no noticeable side effects from the chemo, last MRI indicated the tumor shrunk a little (as we previously posted), and she continues to gain a little bit of weight every week or so.  We are being allowed to operate under the best case scenario so far.  The worst part at this point is the fact that she is fighting her appointments so hard each week physically and verbally.  I can’t blame her.  The staff at Madison do an outstanding job of making it as easy as possible on her…they really are great…but at the end of the day it is not a fun process, especially for a 2 year old who probably cannot comprehend why mommy and daddy continue to take her to this place that "hurts" and scares her.  We try to explain the best we can, but I’m sure it does not make much sense to her.  One of our regular nurses, Denise, even goes as far as dressing up and decorating her IV pole (AKA “Mrs. Pumps”) to try to make it less threatening and a little more fun, but the effect is short lived when Hailey realizes the needle is coming.  Just one of the many sucky things about this process.  It’s hard to complain too much, however, since our situation is no where near as bad as it could be right now, on so many levels.  Believe me, I read all the posts and get emails from other parents who belong to an online PLGA user group, and there are many many worse scenarios with this disease and thousands of parents and families out there dealing with them every single day.  This really is a horrific experience.  To all of you who have said to us that you cannot imagine what this would be like…be SOOO thankful!  There are too many families who are living their worst nightmare on a daily basis and they simply have no way out at this point.  It’s hard to sleep at night when I think about all the realistic possibilities looming out there for us and the sadness and heavy hearts the parents, family, and friends of these other children are carrying around every day.  I hate this disease and the fact that anything like it and the many other illnesses out there can happen to children and families to begin with.    

We haven’t updated in a while because we have been very busy and it gets hard to compose these updates after a while, but also because not much has really changed over the last several weeks. We have just been plugging away with treatments each week, continuing to fundraise, and trying to maintain normal life activities.  Regarding fundraising, we’ve finally “closed out” the last couple events and are now ready to start strategizing on the next opportunity.  The Run/Walk actually ended up raising close to $46,000 and the event at Butte Des Morts Country Club ended up raising about $18,000.  No word from Oprah yet, but we are not giving up.  We’re trying other angles.  We need to hit a homerun here in the near future as far as generating widespread awareness and taking the PLGA cause to the next level.  We pray for energy and strength to crank it up a notch, as the reality is we are still only a few steps into a long journey and we cannot really rest much because time is not on our side.  

It's getting late and my brain has gone into sleep mode (just caught myself staring at the keyboard for what must have been 5 minutes straight) but before I end I just wanted to share a really neat experience we had last Saturday at the Harley Davidson dealership on Hwy 15 in Appleton.  We contacted them several weeks ago to see if we could get a Harley rental donated to auction off at the Butte Des Morts event.  When Shannon went in to meet with the contact lady at the dealership, she let us know that she had been tracking our story since way back in October when the first Post Crescent article came out.  Long story short, they throw a huge customer appreciation event on the dealership grounds each year and take the proceeds from the event and donate to a local family, and this year they wanted the family to be us.  We were blown away by this gesture.  So we went to the event all day Saturday with the kids and all the grandparents and let me tell you…Harley knows how to throw a party!  A live band, tons of free food, free beer and free soda, crazy daredevil entertainment, and LOTS of motorcycles.  We were so impressed with what they did for their customers and what they did for us.  It was a really neat day and we felt honored to be a part of it.  Hailey lasted until about nap time, but Faith and I and the grandparents stayed most of the remaining time.  Faith had a blast.  She is such a fun little girl.  She helped draw raffle tickets in front of about a thousand people and she walked around all day like she owned the place.  She is doing very well by the way.  She and Hailey both really are a blessing.  Thank you to Aimee Dunbar and the team at Harley for all they did for our cause.  The Harley culture is real, and there is a genuine spirit of giving in that group (at least there was in the several thousand that showed up that day).  

Brain sleepy. Must go now.

Monday, April 28, 2008 - 9:41am

Wow!  What a couple weeks we’ve had!   Two weekends ago we were down in Whitewater for the “Win Big. Give Big” Event my cousin Carolyn and her AMA group put on to raise money for the PLGA Foundation.  It was a great time and they raised about $15,000 to go directly to the foundation and 100% of it will be used for PLGA specific research.  A couple weeks prior to that Carolyn presented at the national AMA conference in New Orleans and 2 other major colleges in other parts of the country have agreed to take up our cause and fundraise for the PLGA Foundation in 2009 as the Whitewater chapter did this year.   

Then last Tuesday Hailey started up another 10 week chemo cycle.  Everything went as well as can be expected, although she continues to strongly dislike the thought of the day and most of the time leading up to our arrival and through departure for home…so just about all of it actually.  Her ability to express her dislike for the process has become one of the harder things about those days for us.  We’ve said this before, but the verbalization of what is actually going on in her head is painful to hear at times.   Faith came along with us last week again.  Since she got to play in the playroom, color, play a game, run around, and watch a movie, she enjoyed the day and was a very good girl as usual. 

And then on Saturday we had the Team Hailey 5k Run/Walk For a Cure in Menasha.  The weather left a bit to be desired, but the day itself was a huge success.  In some ways we think it is appropriate that the weather was a little rough…it was symbolic of our journey and kind of inspiring to see people battle through the conditions with a smile on their face and a great attitude.   

Early totals put the net proceeds at around $43,000!  Incredible!  100% of those proceeds will go towards PLGA specific research.  It was almost overwhelming for Shannon and I to see so many family and friends show up to support Team Hailey and the PLGA Foundation that day.  To all of you who were there and we did not get to talk to nearly enough (which was just about everyone unfortunately), we apologize but sincerely thank you for your support.  It was our biggest fundraising event to date by a mile, and the results of the last two events have brought us over $100,000 raised for the PLGA Foundation in nine short months of fundraising.  We’ve learned a lot the first time through the Run/Walk process and plan on doing it again next year.  

Results from the race will be placed on the Team Hailey website in the Event Summary area in the next couple days.  Thank you again to Grandma Peg and the team of people she put together to make this event happen. They did an incredible job! 

We are off to Madison again tomorrow morning for another chemo trip so a bit of Monday depression has kicked in thinking about the day ahead, but we’ll use the support we’ve seen over the past couple weeks to push us through another trip and look forward to hopefully getting back to “normal” again on Wednesday.  Thanks for all of your concern and support.  We are so fortunate to have all of you as we go through this process.  

Wednesday, April 23, 2008 - 4:49pm

This will be a very short entry and will only be about the 5k Run/Walk this weekend.  More to come on other subjects soon.

For those of you participating in the Run/Walk that registered ONLINE, if you did NOT receive an email confirmation when you registered and are concerned about whether you are officially signed up or not, you can use this link to enter in your name or email address to confirm your registration.  http://www.teamhailey.org/run_walk_check.php

This is only for those of you who registered online and did NOT receive an email confirmation.  If you registered by mail and did NOT receive a confirmation, or if you have any problems with your registration in general, please feel free to email ameltz@new.rr.com or call Amy at 920-810-8716 to confirm your status. 

We are approaching 500 participants.  Sign up is allowed all the way through the morning of the event.  Looking forward to a great day!