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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!

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!


Wednesday, August 29, 2007 - 8:38pm

Got puked on tonight. That was awesome. Hailey has thrown up every day for six straight days. Hard to tell if it was from the 3rd chemo drug, or her old vomitting issues returning. All I know is we are so sick of cleaning up puke off ourselves, Hailey, our floors, and our carpeting! Geeeeeez!!!!!!!! I have never seen or been around as much vomit as I have in the last 10+ months. Honestly, our life is ridiculous.

NEW WEBSITE COMING SOON! teamhailey.org will eventually replace this site and be the place to go for all updates, AND your online source to contribute DIRECTLY to Hailey's cause. When it is ready, we will announce it all over this caringbridge site, including in at least two consecutive journal entries so you all know when to stop going to this site and start going to teamhailey.org. All upcoming events will also be listed on the site, as well as the ability to sign up for any events of interest. In addition, you will be able to read about our call for help and why we need to raise money for this cause, donate online, buy items from our online store, read and stay updated on journal entries (past and future), sign our guestbook, and more. We are very close. Thank you again to the great people at Envision Ink for making this happen.

Monday, August 27, 2007 - 8:33pm

It's been awhile since we've posted a journal entry, but Brian tried on two different occasions and experienced some technical difficulties. Quite honestly, we have also been busy and tired.

The first week with the feeding tube was a battle. However, after one week of drama, Hailey decided that "tubie" wasn't so bad. Now, when we say, "it's time for tubie", she goes and sits on the couch in the same spot each time. No more crying, no more drama!

Last week at our appointments in Madison we found out she had gained almost half a pound. She's now up to 20 pounds! The feeding tube has really made life a bit easier, especially with giving her medications.

Tonight, we are completing the last of 5 nightly doses of her clinical trial drug, temodar. It comes as a capsule, so we have to wear a mask and gloves and dissolve it in water and draw it up in syringes to give it to her through the tube. The powder cannot be touched or breathed. When done, we need to put all supplies used in a zip lock bag, seal it up, and take everything back with us to Madison for proper disposal. It's kind of crazy to think we are putting this into our daughter's body. The drug has to be given on an empty stomach, so we sneak into her room after she's sleeping and give it through her feeding tube. It's been an interesting experience depending on the position she's sleeping in and if her tube is easily accessible.

After this, we have 3 weeks off from chemotherapy, but not from trips to Madison. We go back on September 4th for an MRI and September 6th for a vision exam. This brings our induction phase or first 10-week coarse of chemotherapy to an end. If the tumor has stayed the same size or shrunk a little, we count our blessings and push on to the next course of chemo. If it grew at all, we are not allowed to continue in the clinical trial and will have to make some difficult decisions on the next course of treatment. September 4th is an important day?the first of many for what will likely be YEARS to come.