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Wednesday, December 12, 2007 - 12:43pm

One last reminder about the book Shannon mentioned in her last journal entry.  There are just under 200 copies of the original version left and we are trying to help Marcia (the author) sell the rest of them before the holiday season ends and they go to waste.  All proceeds go to the PLGA Foundation.  We've read this book and love it! If you are looking for some last minute christmas gifts or just want a great story for your kids or grandkids, with a good lesson, for a great cause...visit her website at www.spriitelee.com. Her website has been updated showing the new version of the book, but if you purchase one now, it will be one of the remaining original versions. 

For those of you who did not hear about this yet, here's a portion of Shannon's journal entry from Saturday:

Before I call it a night, I wanted to share a conversation I had with an amazing woman on Friday. Her name is Marcia Stankard. She told me a beautiful story about her journey that lead her to write a children’s book about kindness and spreading kindness. It’s called “The Spriitelees – Every ‘i’ makes a difference”. The Spriitelees (pronounced Sprite-Lees) are everyday-looking, happy children that demonstrate, by their actions, not their words, that it’s fun and surprisingly rewarding to do kind things for others. It’s an adorable Christmas story! One of the really neat features of this book is a tear-out certificate called an “Honorary Spriitelee Sparktificate”. A child can hang this in their room after they have completed three acts of kindness.

The source of her inspiration is the child of one of her close friends that has a PLGA. Since then she’s connected with our friends at the Fight PLGA Foundation. She’s overcome many obstacles to get her book published and is donating 100% of the proceeds to the Fight PLGA Foundation and will continue to do so. She’s putting the final touches on a revised version of the story, and it will be released in November of 2008. It is the basically the same story with a new name, “The Gift that Saved Christmas”. The new book will have pictures of four children suffering from PLGA tumors on the same page as the Sparktificate. Hailey will be one of those pictures! We are so touched and honored by this gesture.

Friday, December 28, 2007 - 10:36am

We are long over due for a journal entry so there are several subjects to touch on.  I'll try to keep each of them as brief as possible so this thing doesn't end up being a mini-novel.  May not be possible, however, so stick with me...First, happy holidays to all of you who are tuning in to stay updated on our situation.  We really had a great Christmas.  We saw lots of family and didn't even have to travel to do so!  And the girls were so good.  As most of you parents know, the older they get the more they enjoy the holidays, and the more we enjoy watching them in turn.  At all of our family stops, the girls did such a good job playing with and visiting with other people, it was the first social function we can remember with the kids where we could actually talk with other adults and relax a bit. Anyway, the holidays were great in the Meltz house. Hope the same to all of you.Second, and most importantly, HAILEY HAS GAINED SOME WEIGHT!  About three weeks ago she jumped from 20.7 pounds to 21.8.  We decided to hold off on any excitement until we saw the weight either stay at that point or continue to rise for a few weeks in a row.  Well, it has.  At her appointment on Wednesday, Hailey was 22.2 pounds!  This tops the most she has ever weighed.  Her previous high was about 1 year ago when she had her first feeding tube and this whole process truly began (before we knew anything about the brain tumor) after she was admitted to Children's Hospital in Milwaukee for her round of GI testing and to get immediate weight on her.  The results of that process got her to 21.5 pounds.  That was about 1 year ago.  Even then, it was too far underweight, so one year and a 1/2 pound later still puts us well below where she needs to be, but we are hoping this is the start of a positive trend (that could be from the tumor starting to shrink or change shape???...I'm typing this tongue and cheek).  This leads to our next update.  We sent all of Hailey's information to Dr. Roger Packer in Washington D.C.  He is one of the experts in this field.  He reviewed her information and her MRI's and determined by his calculations that it appears her tumor has shrunk in volume by about 20%.  He did say he would have liked to have seen more at this point of the treatment, but the fact that it appears to be trending in the right direction at this point is a good sign.  In his experience with this chemo regimen and these tumor types (and he has seen more of them than anyone) he has seen it take as long as 9 months for some significant shrinkage to take place, and in one case it took 12 months on the treatment before shrinkage occurred.  We are currently at about 6 months.  So for now his recommendation to us was to stay the course at this point.  Because she is not having any severe reactions to the treatment, and it appears the tumor could be shrinking a bit, and because there is no other treatment alternative out there right now that they know enough about yet, he does not feel it would be the right time to try anything else.  We agree.  Our plan is to check back in with him after Hailey's next MRI, which should be right around our 9th month of treatment, unless Hailey begins to have more adverse side effects from the treatment or begins to show signs the tumor is growing.  Bottom line, stay the course for now.So we are wondering now if the weight gain we are seeing has something to do with the tumor shrinking.  In theory, those two things should be very closely correlated.  Now for the dose of reality...if the tumor shrinks any further and she gains more weight (and doesn't have complications from the treatment in the process) we will have accomplished what we wanted out of this therapy...more time to find better treatments and a cure.  If, however, you read the stories of the parents and kids out there with this tumor type like we do, and you look at the medical history and information on these tumors like we obviously have, you would be painfully reminded (like we are) that many of the kids who have "success" with chemo, eventually begin to have complications again.  In the end, the goal is still the same.  Find a cure.  Take this time bomb out of our daughters head!  Until then, it will continue to hang over our heads and hers and haunt us in the process.  It’s obviously just a very difficult thing to forget about and ignore.  On a day to day basis, Hailey is doing pretty well.  She's talking a lot now, she is usually happy and energetic, and her personality is really taking shape (and it's a good one...she's a joy for the most part).  She has, however, had three weeks in a row now of more noticeable (yet still manageable) side effects from the chemo.  Her appetite is lower and she is throwing up more often.  Her mood and demeanor have also been a little more affected over the past few weeks.  And her sleep continues to be crappy at best...up in the middle of the night more often than not, or awake WAY TOO EARLY for the day.  Again, all things that are manageable for the most part, but we are starting to see the cumulative effects of chemo.  Hopefully this is the worst it will get. On the media and exposure front, for those of you who did not see it, check out the article related to Hailey done by the Post Crescent on Christmas day.  We were very touched by the gesture of the man they reference in this article.  It’s a neat story.  www.postcrescent.comWe have a permanent link to this article on the "In the News" section of our site.  We have also been working with a journalist from Gannett to do an ongoing story on Hailey and our family, which is set to start soon.  We'll post some information on that when it begins, but it is an excellent opportunity for us to get more exposure for our cause.  We are very thankful to Gannet for their interest and willingness to do more with us.And along the same lines, we found out last week that WFRV Channel 5 news is going to do a feature story on Hailey and our family and what we are trying to accomplish.  We will be meeting with Tammy Elliot in the coming weeks to get that rolling.  Again, we'll post more info when we have it and we will continue to get the results of this kind of stuff on the "In the News" portion of our site (see the main menu bar at the top of the screen for the "In the News" tab).  I have to admit that all of this exposure is a bit uncomfortable and a little weird for our family, but it will hopefully be a tremendous help to our quest with the PLGA Foundation to find kinder, gentler treatments and a 100% cure for the thousands of us out there fighting this disease.I think I have carpal tunnel.  I'm out of time, mental energy, and wrist function.Happy New Year!  Here's to a MUCH better 2008!

Friday, January 11, 2008 - 12:15pm

Check out the online article and audio slide show the Post Crescent ran today on Hailey and our family. Article - postcrescent.com Audio Slide Show -  postcrescent.com Many thanks to Michael King and Gannett for their willingness to spotlight our family and share our story.  It appears we will be a regulary occurring ViewFinder segment in the Appleton Post Crescent.  It's admittedly a bit difficult to open ourselves up to the public in this way, but we are hoping it helps bring more exposure to our cause and speeds up our journey to find a cure for Hailey and the thousands like her around the country.  Other than that, all is quiet on the home front.  We've had a break from trips to Madison for a couple weeks.  We've all finally recovered from the hustle and bustle of the holidays and are getting back at it over here! More to come soon...

Monday, January 21, 2008 - 1:16pm

Hello to all - The mother of one of Brian's high school friends had an idea to schedule a specific prayer day for Hailey and our family. Here is what she came up with. Please share with anyone and any group you wish. Feel free to cut and paste her message below.

Thanks,
Grandma Peg


"STORMING THE HEAVENS FOR HAILEY"

This is a personal request for you to say a prayer, a blessing, a favorite affirmation on Thursday, January 24th for Hailey Meltz. This request is, for as many people as possible, to pray for Hailey and her family...to Storm the Heavens for Hailey all on the same day.

Hailey was diagnosed with an inoperable & incurable brain tumor this past June, 2007. Currently, there is no cure. Hailey is undergoing a 70-week/2 year regime of chemotherapy in Madison, with hopes to shrink the tumor. When home, she and her parents deal with the not so pleasant side effects of the chemo. Her parents, Brian & Shannon try to keep everything as normal as possible at home for Hailey and their older daughter Faith who is 4. They are praying, hoping and working towards one day finding a cure for Hailey and the thousands of children affected with this type of tumor.

As you can imagine, this a very difficult and stressful time for Hailey's entire family. Your help on January 24th, as part of a large number of people thinking about and praying for Hailey- asking for guidance, patience, hope, strength - on one day, would be greatly appreciated. For more information on Hailey and her family’s story, go to www.teamhailey.com. If you desire, please pass on this request to anyone you think would be interested.

Thank You in advance for your support and "Storming the Heavens for Hailey".