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Monday, October 22, 2007 - 8:37am

On Sunday the article about Hailey and our family was out in the Appleton Post Crescent.  Of course we went and got the paper right away early Sunday morning and there was Hailey's little face on the top of the front page, and then Full page in the Life section.  For those of you who did not see it, here is a link to the online version of the Appleton Post-Crescent article

One correction, however, we do not live in Combined Locks....we live in Appleton.  Not sure how that got in there.  But anyway, we are so appreciative of the opportunity.  This will hopefully end up being yet another way to effectively spread the word and raise awareness.  I think it already has, as we have noticed the hit count on our website rising more than usual yesterday and today.  Keep em coming! As uncomfortable as it may be to open yourself up to the public, we are exploring other avenues of exposure as well as we obviously realize that every single additional person that knows about this tumor type and the need to come up with better treatments and a cure, gives us a better chance of actually doing so.

On the family front, we are off of chemo and trips to Madison for two weeks now.  Needless to say, we are welcoming the break.  The Tomahawk Golf Outing also took place last weekend and it was another great event!  We had a good time, raised more awareness, and raised some money in the process.  Final numbers are not in yet, but no matter what it was a great day.  Thank you to Jim and Tammy Olson, Dee and Dave Buech, Jeff Olson, Judy and Eddy Olson, Edgewater Golf Course and the countless other people who helped pull it off. 

 

 

Monday, October 15, 2007 - 12:50pm

Lots to write since our last entry. It's fitting that this update is coming on Hailey's birthday…She turned 2 years old today! On the surface, as far as her playfulness and overall demeanor, Hailey is doing fine on a day to day basis. She continues to do most things that a normal two year old would do I guess, and she is still handling the chemo treatments and side effects very well. HOWEVER (and it is a big however at this point) she is NOT gaining weight. She is eating fairly well and getting good nutrition from the feeding tube, but as we have known since early on, she will not gain any weight to speak of if the tumor does not shrink away from the Hypothalamus a bit. To be honest, we have become flat out scared for her. Besides the obvious concerns that come from a tumor inside your child's brain, the weight issue is definitely the most pressing at this time. We worry about organ function and brain development in a body that has absolutely no fat to burn. The majority of kids that have this tumor type do NOT have the diencephalic syndrome that is causing Hailey's weight gain issues. This has created a whole new set of concerns...like we didn't have enough to worry about from the "normal" complications of having a brain tumor. We are not even sure what we can do about it at this point. We have to continue to hope this poison (I mean Chemotherapy) that we are pumping into her body shrinks the tumor just enough to at least temporarily give her a chance to gain some weight. The other avenue we are beginning to explore is whether Hailey might qualify for some of the experimental drugs that are starting to have some success. Usually, to qualify for those trials, you would have to have "failed" two or three other regimens and have almost no other options. We are not sure if the weight issue is putting us into that category quicker than most others. There is more to discuss and research in this area, but it is definitely a big concern and we are feeling more urgency (if that is even possible) to do SOMETHING to help change the issues with her low weight. Until then, we push on with Chemo and hope for the best that treatment can give us. By the way, big sister Faith is coming with us to Madison this week. We are looking forward to bringing her. We will shelter her from the things she shouldn't see, but it will be good for her to see what we do every Tuesday when she thinks we're going on some kind of fun trip without her. We won't do this every week, but we thought it was time to give it a try. Hope we don't regret it...for those of you who travel with young kids, you know what I mean!

On another note, we did have a very successful Milwaukee area golf outing last weekend. Many thanks to John and Nikki Boldt, Allision and Andy McIntyre, and the COUNTLESS other people who donated their time, money, and effort to pull this thing off. The weather was great, the golf course did a good job for us, people donated generously, we learned a lot in the process, and I think we all had fun. For the first year, it was definitely a success. The final numbers are not in yet, but it appears we NETTED around $7,500 to go directly to the Fight PLGA Foundation. We will put an update in the Events area of the site when everything is final, but it was a great day no matter what the number ends up being and we SO appreciate the participation from many of you. Every dollar we raise will bring us one step closer to finding a cure for Hailey and others like her around the country. Real hope exists out there today, but I can promise you the reality is that it will NOT happen in time unless we raise a lot of money, garner the attention of the research and medical community, and then help manage this effort through to RESULTS. Not to be a broken record, but we need all of you to understand that the battle has really just begun for us. We appreciate all the help and support so far and any future help you can provide along the way. Please continue to help us spread the word.

And lastly, for those of you who ordered from the store in the FIRST ordering period, we wanted to let you know those items are being produced and shipped this week. We apologize for the slight delay, but we are working out the kinks that come with a first round of purchases. The good news is the items are on their way and there will soon be more of you helping us spread the word and displaying your membership in the cause. We should also be on track to meet the timeframes of all future ordering blocks. The second ordering period is currently open but coming to an end on October 22nd. Remember, you can order items from our store ANY TIME. The system will keep your order until the end of the applicable ordering period (which is always listed in the Store area of the site) and produce and ship it out automatically about 10-14 days after the ordering period ends.

HAPPY BIRTHDAY HAILEY! We are working as hard as we can to ensure MANY, MANY more.

Thursday, October 4, 2007 - 12:27pm

Shannon's cousin, Jim Olson, finished his 24 hour fishathon this morning!  We want to thank Jim and his family and supporters for taking on this challenge.  Jim stayed up 24 hours straight, and then went right from the lake to the radio station to do an interview with a local radio host and Shannon (who was on the line by phone from Appleton). 

This event was just another example of the kind of tenacity and support we've received from those around us...and Jim was very smart to incorporate some good marketing and publicity along with it.  The donation numbers will not be in for a few weeks, but the most important thing may be the fact that Jim and his team helped raise more awareness up in the north woods, and hopefully helped draw more people to our website and to our cause.

GREAT JOB JIM!  We are blown away by the effort you gave on this and the support you and your family have provided us so far.   As we are with so many of you who are jumping right in and finding a way to contribute to our cause.  The army is growing...but unfortunately the battle has just begun!  

Check out the links below to see the wausau/tomahawk area news story and radio interview regarding what Jim did and our cause....

Radio interview with Jim and Shannon:

http://www.wjjq.com/FORUM104.m3u  

Local News story:

http://www.waow.com/News/index.php?ID=16499 

once you are on the site above, find the little red camera near the right corner and click on it and the actual television news story will play

Tuesday, October 2, 2007 - 9:08am

Crunch Time! We are less than two weeks out from the Milwaukee Golf Outing. WE NEED SOME GOLFERS!!!! We only have around 40 people signed up - the goal is 72. In addition to golfers we still could use donation items for the raffle. Also - Friday is the last day to get signed up to sponsor a hole or a putting green. So please spread the word and/or sign up in the events section of the site and we will see you on the 13th!!!!  It is going to be a fun day! 

Uncle John 262-385-7745 or jjnlboldt@wi.rr.com

 John Boldt
Waterford , WI 53185

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