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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!

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.

Saturday, December 8, 2007 - 10:24pm

Like most parents of young children, we look forward to 8:00 pm. That’s when we have two hours to ourselves after a busy day of non-stop activity. Hailey had other plans for us tonight. She truly did not want to go to bed. After 1 hour and 45 minutes of stalling, crying, of coarse throwing-up, and general hysteria, she suddenly blurts out “I’m all better!” and promptly went to sleep at 9:00 pm. Unbelievable! 

Aside from all of that drama, we had a good day. We baked sugar cookies using all of their play-doh animal cutouts. Faith loaded on the frosting and the two of them went totally overboard with the sprinkles. They each picked a cookie and ignored the rest. However, those two cookies are quite beautiful and completely covered with sprinkles. The remaining sprinkles ended up all over the floor!

 

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 a 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.

I’ve read this book and love it! Marcia only has 200 of the original books left. It would make a great Christmas gift! 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. 

I hope everyone is having a great weekend. I'm off to bed.  Good Night!

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.