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Friday, February 1, 2008 - 11:48am

Some business items first:

Registration and sign up for the Team Hailey 5K Run/Walk is live! For those interested in more information and/or participating, please go to the EVENTS section of this site. We hope to make this our biggest and most successful event to date!

We have also added a kids Team Hailey t-shirt option to our online store. Be sure to read the Sizing Information near the top of the store site before ordering any of our shirts.

And soon we will have a Hailey brand Coffee and Cocoa product available through our store as well. There will be a small variety of flavors offered and the packaging of the product will have Hailey's picture on it and be specific to Team Hailey and the PLGA Foundation. Thanks in advance to Keevie Bremhorst with Inspired Grounds for the idea and the opportunity to add this product to our store.

No word from Oprah's people yet.

As far as the family is concerned…Hailey and Faith are doing well. We have been off from treatments for a couple weeks. We start the regimen again on February 12th. All in all Hailey continues to handle things fairly well most days. At her last appointment a few weeks ago, she had not gained any more weight from her spike up above 22 pounds. She had not lost weight, but she has not gained either. Hailey’s also had a cough and cold, which means she has been throwing up more again. When she coughs, she gags and if she gags and has a full stomach, it all comes back up. I've said it before, but I just never thought I would be cleaning up so much vomit in my lifetime. It really is a disgusting and demoralizing task. Hard for anyone to truly understand unless you live it. Besides from that, I guess Hailey is doing well. She is talking a lot and continuing to do all the things most 2 year olds will do...good and bad. We've noticed her and Faith playing together on their own more often for periods of time. This is a nice change for us for two reasons: 1.) It is really important to us that Faith and Hailey be close. And 2.) It actually gives us a minute to breathe more often and focus on something else in the house besides the demands of a two and four year old. Faith is doing well also. She is a good big sister most days and a great helper to Shannon and I. She has her moments like any young kid, but she seems to be happy and thriving and relatively unaffected to this point by the challenges we are faced with. We’re watching her closely and trying to spread the love and attention as evenly as possible.

Otherwise, it is business as usual over here. Raising children, caring for Hailey, going to doctor appointments, fundraising, trying to maintain businesses, stay in shape, see other family and friends, and just generally stay sane. Some days are easier than others.

Monday, January 28, 2008 - 10:04am

Regarding Shannon’s amazing experience at the Oprah show last week…we have not heard anything yet.  We have no idea whether we will even get a call, or what the timing would be on something like this, but we have had several people suggest that, in the meantime, we put a message in our journal asking people to go to the Oprah site and request they do a show on the PLGA Foundation, Hailey and our family, and other families fighting this same battle.  So here goes…. 

We’ll call this one “Storming the Oprah site for Hailey.”   For those of you willing, below is the direct link to the portion of Oprah’s site where you can submit a show idea.  And feel free to pass this along to whoever you think would be interested in going to the Oprah site as well. 

Obviously you can and should craft your own message, but a few suggestions or important points to consider: 

• It would be good to have the same title for all messages.  Something like “Hailey Meltz and the PLGA Foundation”

• You may want to say that Hailey’s mom, Shannon, was at the show Thursday January 24^th (ironically, “storming the heavens for Hailey” day) and stood up after the show to tell Oprah and the audience about our cause, and that the stage manager took our business card and a copy of the newspaper article from Shannon

• PLGA is the most common form of childhood brain tumor.  Brain tumors are the #1 cancer killer of children and the #2 overall killer of children behind accidents

• There is a tremendous need (children and families are suffering all around the world) AND there is a path to success to end that suffering (the PLGA Foundation and the program they are putting in place), but none of this will happen without more awareness and additional resources (mostly funding) to do so

• This is a grassroots effort.  A story about families and communities taking matters into their own hands, trying to move heaven and earth to save their children.  And the children themselves, suffering, battling the unthinkable, desperately needing a cure so that they get the chance to fight for their dreams, NOT for their lives.

Thursday, January 24, 2008 - 9:39pm

Stoming the Heavens must have worked! Do you believe in divine intervention? I do now. There's no other way to explain the day I've had today...

Over 1 year ago, my dear friend Sandy was at a fundraiser for a Children's Hospital and she bought 3 raffle tickets. She put one of them towards tickets to the Oprah Show and won! Time got away from her and she recently realized that she needed to use the tickets. She asked our friend Carrin to go because she absolutely idolizes Oprah. Unfortunately, her kids got sick this week and she couldn't go. Sandy called me Tuesday to see if I could go. I went back and forth and finally decided to do it. I brought my Team Hailey business cards and the first article that was in the Post Crescent. I knew it was a long shot, but I was hoping to get those items in someone's hands that worked for Oprah. More than once since Hailey was diagnosed, I've said that we need to get on the Oprah Show to bring the attention to this cause that it needs and deserves. I even emailed her show early on about doing a show.

Sandy and I arrived at Harpo Studios this morning at 7:00am and eventually got seated in the third row.  The first small miracle was getting in these seats to begin with...the 3rd row is a reserved seating section, but somehow we ended up being brought to these seats. We were so excited! We found out it was a live taping and was aired today. The show was about the upcoming Oscars. It was a sureal experience. I can't say enough about how amazing it was and how real and down-to-earth Oprah is in person.

After the show, Oprah stayed on stage and conversed with the audience. She is so personable and easy going. She told us funny stories about her dogs freezing this morning and not wanting to go outside to do their business. People from the audience started asking questions. As time went by, I kept thinking that I needed to say something about Hailey and the PLGA Foundation. Sandy gave me the encouragement I needed to speak-up and I had nothing to lose. My heart was pounding!

I raised my hand and got Oprah's attention and then went on to tell our story. I talked about Hailey and her brain tumor, about ineffective chemotherapy, about the PLGA Foundation and the plan to fund multi-institutional research focused soley on PLGA brain tumors. At that point Oprah said, "What do you need me to do?" I told her that she needs to do a show on this topic. I said that we need to spread the word on a national level to raise the funds needed to find a cure. There is a real story here, this is a grassroots effort, it is communities pitching in, it's parents trying to move heaven and earth to save their children. It's a race against time... At that point, she told her Stage Manager to get my information after everthing was done.

I gave him the Post Crescent Article and a Team Hailey card. Another Oprah employee asked me for a card too. She said that she wanted to make sure it didn't get lost.

I don't know if anyone will call, but I knew that we may never get another shot like that again! I truly believe that none of that would have happened if it weren't for all you praying for Hailey and our family.

Needless to say, I had an exhilerating first half of the day. However, once back home, I came crashing back to reality. Hailey has a nasty cold and cough. Then within minutes of getting home, she threw one of those fits that two-year olds do. As usual, crying lead to coughing and coughing led to vomiting. Brian has now caught this nasty cold, but he has a fever too. Then, when Hailey was taking her bath, she pooped in the tub for the first time. Yuck!That is one of the nastiest things to clean-up. At least Faith had a blast watching Mommy take care of the mess.

Anyway, everyone's asleep now. Hopefully it will stay that way. All in all, it was an amazing day, with a dose of reality sprinkled in of course.  Good Night!

Shannon

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 24^th 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".