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Tuesday, September 4, 2007 - 5:02pm

The results of our first MRI since diagnosis and start of treatment are in. The tumor has NOT grown over the last 10 weeks.

This is a better result than growth of course, but I am having a hard time being very excited about it to be honest. It just reaffirms what we have known from very early on about this tumor and the treatment options currently available. Chemo does not work as well as a parent would hope against brain tumors, especially the type Hailey has. The reality is there is NO CURRENT TREATMENT on the market that will shrink this tumor away to nothing. In the many cases we have seen and read about where the chemo did produce some shrinkage, a large percentage of them had re-growth within a small period of time leaving the parents and medical practitioners stuck trying to come up with another form of treatment to buy them more time. Worse yet, we have understood from very early on that these tumors can grow or not grow on their own (whether treated or not) for no reason that is currently understood by science, so it is impossible to tell whether the torture we have been putting Hailey and our family through the last 10 weeks is why the tumor stayed stable this round, or if it is just because it is in a dormant phase right now and would be stable whether we did chemo or not.

So our current reality comes down to this... our best, most realistic hope with treatments that exist today is that the tumor decides to stay the same size or shrink a little..most likely temporarily. Until research gets completed to discover the exact molecular makeup of Hailey's type of tumor (what it is made of, what feeds it, how it grows, why it grows, etc) we will not be able to know concretely how to kill it and kill it for good and not be able to begin testing to develop better therapies. Coming up with a treatment that gives us REAL hope and PERMANENT relief from what our life has become with this erratic time bomb ticking in our daughter's head is the ONLY thing that will give me true piece and happiness. Until then, we will fight on with the current treatments available (versus doing nothing) AND work as hard as we can to raise money to dramatically speed up the pace of research to develop a REAL treatment and cure for this disease.

Some people will want me to be happier and more thankful right now that the tumor has not grown. I am happy it has not grown, but I am painfully reminded almost every minute of every day that there is not a treatment that exists that can take this damn thing away from us for good. Until we have that treatment, these MRI results will always fall short of what we ultimately wish and dream for our kids and our family.

Thank you all for your continued thoughts, support, and prayers. We are still very uplifted by your messages and kind words, and still counting on all of you to help fight this battle with us. Approximately September 14th the teamhailey.org website will be up and running and we will communicate that in journal entries on this website. Shortly after we will be emailing and mailing out a letter explaining our cause and asking you all to consider donating AND passing the letter along to as many people as you can think of and asking them to do the same. Upcoming fundraising events will also be listed on the website with the ability to sign up and/or volunteer for the events. The site will also illustrate SEVERAL other important ways people can help the cause if they are interested in doing so. Until we let you all know the teamhailey.org site is up and running, please continue coming to the caringbridge site for updates.

Thanks again to all of you thinking, hoping, and praying for us. Love and gratitude to you and your family!


Thursday, September 6, 2007 - 4:38pm

The results of Hailey's vision exam today were very positive. So far the tumor has not effected her eye site. She has 20/20 vision. Great news!

Monday, September 10, 2007 - 11:04am

Just wanted to let everyone know that Grandma Peg is having a huge rummage sale this weekend (20+ families!) with ALL PROCEEDS going to research to find a cure for Hailey's tumor type. Details below:

When: Saturday, September 15th

Time: 7:30 a.m. - 4:00 p.m.

Location: 1500 Alcan Drive, Menasha

(behind the old Valley Fair Mall)

Please feel free to spread the word and thanks in advance to all who attend or have contributed to this event in one way or another.

Thursday, September 13, 2007 - 8:19pm

The teamhailey.org website is NOT quite ready. It will only be a couple more days...finishing touches are taking place last minute as they often do in a project of this size and nature. We'll post a journal entry when it is officially up and running. Otherwise things are going well in the Meltz house. We had a full week off from trips to Madison and Hailey continues to be her usual self. Chemo starts up again this coming Tuesday. Our reprieve went too fast!