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Tuesday, April 15, 2008 - 9:48am

We hesitate to use our journal entries for fundraising updates, but it is the easiest, most effective way to get information out to so many. And funding research to find a cure for PLGA is one of our top priorities in dealing with this disease.  We just hope these updates are not wearing thin and causing people to tune out in the process. 

 

The month of May is a huge month of fundraising for Team Hailey and the PLGA Foundation.  As usual, 100% of the proceeds from these events will go directly to the PLGA Foundation and 100% of those funds will be used for research to find a cure for PLGA.  Team Hailey has raised over $60,000 for the PLGA Foundation to date.  After the events below, we hope to be over $100,000 raised.  Unfortunately, even at that number we still have a long way to go to do our part to fund needed research, as there are likely funding needs of somewhere between 7-12 million dollars over the next 5 years.  We are just one piece of the bigger team working on funding these programs, but still a tremendous challenge for us and the PLGA Foundation.  We have to succeed, however, because with the funding there is an excellent chance that we will have a major breakthrough(s) during that time.  For more info on funded research to date, see the Funded Research heading on the right hand side of our website.

 

So the events to highlight are as follows:

 

First, there is an event on May 3rd we wanted to alert people to.  We did not advertise this event on our website to this point because, quite honestly, we are trying not to continually tap into the same group of people for support.  The event on May 3rd is a higher-end, higher priced event, and we just did not want people to feel obligated to try to attend, or more importantly, to think that we expected all to be interested in this kind of event.  We’ve gotten feedback from several people, however, that this is something they wish they would have known about so we are putting some last minute information in this journal entry.  Starting at 6:30 p.m. the evening of Saturday May 3rd we are holding a fundraising event at Butte Des Morts Country Club in Appleton.  The attendee list so far is mostly non Butte Des Morts members.  There will be a cocktail social, an informal dinner, music, networking, and fun!  The evening will also be highlighted by a special performance from Mary Catterton, a nationally known singer/musician as well as a silent auction and big ticket raffle.  The cost per person for the event is $150.  If anyone is interested in attending or know of people who would be interested, please email me directly at bmeltz@new.rr.com and I will send you a formal invitation with all the details and the ability to register for the evening.  There is still room for more attendees and we have until approximately April 28th to finalize our guest list. 

 

The Team Hailey 5K Walk/Run for a Cure on April 26th is up to 412 registered participants! Unbelievable! We are so excited to see so many gathered to support our family and the PLGA Foundation.  Our goal is 500 or more, so we still have a little more work to do.  Grandma Peg and the team she put together are doing an amazing job coordinating this event.  We are so impressed, and forever grateful.

 

This Saturday, Shannon and I will be traveling to UW-Whitewater for the “Hope for Hailey. Win Big. Give Big.” This event is sponsored by the UW-Whitewater Chapter of the American Marketing Association. They have done amazing work for the PLGA Foundation and early indications are this will be a very successful event.  Thank you to Carolyn Schweitzer and her AMA group for all the effort and dedication they’ve put forth.  We are so impressed with their talents and compassion…if these young adults are the future of this country; we are in very good hands.

 

And last but not least, on April 17th the UW-Whitewater Athletic department is holding a run/walk on the Whitewater campus with proceeds from the event going to the PLGA Foundation and to the Whitewater Women’s Sports Foundation. For more details click here More info.

 

Thanks again for all your support!

Wednesday, April 9, 2008 - 3:09pm

The pre-registration deadline for the 5k Run/Walk is April 12th.  After April 12th the price of the race goes up to $23 and we unfortunately cannot guarantee a t-shirt. If you do not make the April 12th deadline, however, you CAN definitely still register all the way up through the morning of the event, but it sure would be ideal to do it by the 12th for all involved.  Either way, we truly hope you participate. We currently have just over 200 people registered but are shooting for 500 or more, so please keep spreading the word and register yourselves if you have not done so already.  

Speaking of the run/walk, does anyone know Thrivent “family members” (meaning people who work at Thrivent or use Thrivent services) who are participating or would be willing to participate in the run/walk?  If we can get 5 Thrivent family members to participate in the run, we have a chance to get Thrivent to make a significant financial contribution to the PLGA Foundation.   We need to know the names of the people and have them registered before this Monday, however, in order to qualify.  If you know of anyone, please contact us at bmeltz@new.rr.com in the next couple days. 

Hailey had her MRI today.  Everything went as well as it possibly could.  Hailey was not fussy on the way down.  She did say several times that she “did not want to go to Madison” and was noticeably anxious about what was to come, but we were able to distract and reassure her and she was fairly happy during the drive all things considered.  She finally fell asleep near Beaver Dam.   

The procedure itself and our time at the hospital were as gentle on Hailey as it could possibly be.  Everything was done this time while she was drugged up or sedated so there was very little stress placed on Hailey (at least that she will remember) and she had very few difficult moments.   

Now the best news…her weight is up again!  She is now 24.2 pounds, as high as she has ever been.  And for the first time, the results of the MRI showed real shrinkage in the size of the tumor!!  Two of the measurements they use are down about a millimeter or so, and one of the measurements is down from 3 centimeters to 2.3 centimeters in size…relatively speaking, this is a very good decrease. It is also likely that the volume of the tumor is down another 30% from last time.  To top it all off, we were interviewed by a Madison news station (NBC 15) who is doing a story on us and on the fundraiser in Whitewater that my cousin Carolyn and her AMA group are holding on April 19th.  It will likely air on Sunday in Madison.  We will try to get a link on the IN THE NEWS tab of our site.  And then on the ride home Hailey was about as perfect as she could be in the car.    

As we think about our last several hours and notice ourselves operating on somewhat of a “high” right now, it’s really interesting (and maybe a little sad) to note how a successful day is now defined in our world.  And then in the next thought we still can’t help but wonder again how this happened to us and if it really is our lives we’re living (or just a bad dream we are going to wake up from real soon!). 

So the long and the short of today is that the best outcome we hoped for from the plan we set ourselves on, is coming true so far.  The tumor is shrinking a bit, Hailey is handling the chemo treatments well so far and not showing outward signs of any permanent damage from the treatments or from the tumor, and we are buying ourselves time to fundraise and work with the PLGA Foundation to find a cure for this disease.  We are fortunate to be operating under these circumstances, at least for now.  The overall reality is still the same unfortunately (there is still a tumor in our daughter’s head that will not go away unless we find a cure) but we recognize that Hailey’s health could be much worse and we feel lucky for the opportunity we are being given at this point to still have a chance to come out of all this with our family in tact.   

Shannon just left with Hailey to go pick up Faith from school (we all missed Faith like crazy today) and then as a family we are going to go out for pizza tonight to do some quiet and cautious “celebration” of another mile run in this crazy marathon we find ourselves in.  Thanks to all of you for your continued thoughts, prayers, and support.  We are forever grateful.

Tuesday, April 1, 2008 - 9:33am

Hailey survived her eye appointment last week and her eyesight appears to still be normal at this point. Just as we thought, she was extremely upset during the test with the electrodes. She kicked and cried really hard. After the appointment, when she was back in the car, she said "Me don’t like that guy! He tried to take my pony (tail) out!" (referring to the part of the process where they hook the electrodes to her head). Brian and I can’t believe how verbal she’s gotten. We’ve always wondered what was going on in that little head of hers, now she tells us – constantly! She and Faith are so chatty at times that it’s impossible for Brian and I to get a word in edgewise. Most days and moments it is an absolute joy to listen to. The other day we had so much fun sitting back and watching Faith and Hailey wrestle around on the ground together, tickling each other, hugging, belly laughing...playing like we always hoped they would as sisters...like best friends. It was really neat.

Last week was our 5-night home chemotherapy regimen. Thanks to zofran (anti-nausea medicine), she tolerated everything pretty well. She had a couple of "off" days and there was a dip in her appetite, but she was quite the trooper as usual.

So now we've finished another 10-week chemotherapy cycle and Hailey gets a break from chemo until April 22nd. Every 20 weeks, Hailey has an MRI done, so we have another one coming on April 9th. Brian and I always have mixed emotions about MRI’s. The process, the results, etc. The whole thing is a very anxious, unpleasant, sureal experience. If you have not watched the video we have on the front of the Team Hailey Home page, check it out. The footage at the hospital is from the last MRI experience.

We are busy doing lots of fundraising activities as well. The Run/Walk on April 26th is fast approaching. April 12th is the pre-registration, but you can register any time all the way up to the day of the race, including the morning of if you choose to come last minute. Hopefully all of you who plan on coming have or will register prior to April 12th, however. If anyone registered and did NOT receive a confirmation, please let us know that as well. You should receive confirmation when you register online or by mail. And please keep spreading the word! The last 10 days or so we got some free billboard time on the electronic billboards Jones Sign has in a couple different spots on Hwy 41. There was a big picture of Hailey and some details on the Run/Walk and our Team Hailey website address. Jones Sign was kind enough to donate the design and the space on the billboard to our cause for close to 10 days!

We have not heard back from the Oprah show yet either. I called the show again last week and talked to a lady who promised me she would email the entire production staff and have one of them call me back, but still no word. I am calling again this week. We can't give up (at the risk of becoming annoying or appearing like a stalker). One of our big goals remains to kick down a door that leads to a major awareness breakthrough for the PLGA Foundation. Whether it's Oprah, or enlisting the help of some other famous, reputable spokesperson to help us move the needle quicker on this cause, we have to come up with something soon. We're trying lots of things...one of them has to work!

And lastly, Brian and I got some TV time on the local NBC morning show yesterday to promote the run and talk a little bit about our cause. And I did a radio interview on WHBY that aired yesterday as well. As much as we hate seeing ourselves on TV and hearing our voices on the radio, we will get a link to both on the "In the News" tab as soon as we can.

Monday, March 17, 2008 - 10:18pm

The Team Hailey “Bowl for a Cure” last Saturday was a huge success and raised almost $5,000 to donate to the PLGA Foundation! I’ve forgotten how much fun bowling is! There was one lane set-up for bumper bowling and the kids had a blast! The three little ladies - Faith, Lydia, and Olivia are ready for Bowling with the Champs! They were absolutely a joy to watch. Hailey was in amazingly good spirits despite only taking a short nap on the drive to Winneconne. She had so much fun going “uppies” to everyone and just when I thought she was going crash and fall asleep in my arms, she would get her second wind and start running up and down the ramp next to the lane the girls were bowling at. As it has happened so many times since this journey began, Brian and I were blown away by the support and generous acts throughout the day. Saying “Thank You” does not even begin to express the gratitude we feel to everyone that helped make this day so special.

We don’t have chemotherapy this week, but Hailey does have an eye appointment in Madison on Thursday. To be honest, eye appointments are worse then chemo for Hailey. One of the tests she has done, they place electrodes all over her head and flash bright lights at her. It’s done to make sure there isn’t a delay in how quickly her eye is processing what she sees, since her optic nerves pass through the tumor. I think once she gets older, this won’t be so bad, but right now it is so scary to her. Brian and I are just dreading it!

After a stressful day, Brian and I are each going out with friends Thursday night. I’m sure Brian and the guys will be at a sports bar cheering on the Badgers and I’ll be with the ladies enjoying fondue and lots of girls talk. Don’t get me wrong, I’m a huge Badger fan too and will find a way to catch the game. Go Buckey!! Is there anything better than March Madness!!

Have a Great Week!

Shannon