Monday, August 13, 2007 - 4:35pm
There was mention made in the guest book about a golf outing for Hailey in Milwaukee by "uncle john" (we call him "the enforcer" in our house...inside joke probably only funny to about 3 people total) . Since things will be starting to roll out shortly, we thought it would be good to give those of you reading regularly a heads up (and some clarification) on the ways you will be able to help the cause.
- Letter writing campaign. An email or letter will come to as many of you as possible and others we know from Shannon and I asking for your generous donations and to pass it along to as many people as you can, and ask them to do the same, and so on. The letter will outline our cause, give background info, how to dontate, etc.
- Milwaukee Golf outing. Anyone welcome of course, but probably mostly attended by people in southern part of the state
- Tomahawk Golf outing. More for those in the northern part of the state
- Local Event(s) TBD. The fox valley area. A variety of ideas are being kicked around at this point and will be "advertised" soon
- Businesses/Other Foundations - letter writing and networking
- Country Thunder pizza sales (Complete and successful thanks to Jeff and Sharon Smith and the many who helped)
Once our donation website is set up (currently in progress thanks to the great people putting it together for us at Envision Ink http://www.envision-ink.com/webBased.php ), we will spread the address all over this site, and all fundraising efforts and communcation material will drive people to the donation site for more information on our efforts, potential cures, how to donate, an online store front where you can purchase items where proceeds will go to the cause, what we are doing with the money, etc.
Just wanted you all to know there will be more than one way to contribute to the cause. We will be using this site and other means to begin spreading the word when we are underway with all these efforts.
As I like to say...stay tuned...we're getting close!
Friday, August 10, 2007 - 9:15pm
This is the first time I feel relaxed since we came home from the hospital yesterday. It's getting harder and harder to take her for procedures where she get's anesthesia. She knows something is happening and the entire walk to the operating room she is crying so hard and pleading "No Mamma! No Mamma! Daddy! Daddy!" She struggles and fights when they place the gas mask over her face and finally her little body goes limp in my arms. That by far is one of the hardest things you'll ever do as parent. I get a knot in my throat even thinking about it now...
The surgery went well, but we had another recovery room debacle; her port wouldn't flush so she didn't get any pain medication for at least 30 minutes. She was unconsolable. That hour in the recovery room seemed to last a lifetime. It was so frustrating! After that, Brian and I spent the next eight or so hours carrying her while we walked the halls of the 4th floor of UW Hospital. She didn't want to be put down or ride in a stroller or wagon. Each time we would start heading back towards her room, she would start crying. When she did sleep, it was on our lap in the rocking chair. Luckily, by 9:30pm, I was able to get her to sleep in her bed. Unfortunately, the nurses had to wake her up every 2 hours for something. By 11:00am on Thursday, Hailey had tolerated her tube feeding for 4 hours and a bolus feeding. When we signed those discharge papers, we practically sprinted out of that place! Don't get me wrong, Hailey received wonderful care, but there's no place like home.
Now, the reality of frequent tube feeding has set in. Hailey is not too fond of her new feeding tube. We make feeble attempts at trying to make everything less scary to her and refer to it as "tubie". She's not impressed with our nickname or getting hooked up to it 3 to 4 times a day. I can't say that I blame her. Between her port and her feeding tube, her body does not look quite the same as it used to.
I was commenting at work today that we are trying to adjust to a "new normal". One of my coworkers insightly said that there is no such thing as normal. The only thing that we can do is adjust to whatever life throws at us and move forward. I couldn't agree more!
Tuesday, August 7, 2007 - 8:40am
We haven't done an update in a while, but Hailey continues to do just fine. We have been really busy the last week or so, and quite honestly, we're tired right now...to the point where once we are done with everything else we are trying to balance, even doing a simple journal entry feels like a lot of work. Things will calm down a bit after this week. Another chemo session this morning, then back home for the night, and then back to UW tomorrow morning to get Hailey's feeding tube placed. We will have to stay overnight at UW at least one night, maybe two. Hailey should recover pretty quickly from the procedure, but they keep you at least one night as a precauction, more if things aren't going well. (All of this will be put on hold if Hailey's blood tests today show that her counts dropped again).
The feeding tube will be used to supplement what Hailey will eat by mouth. It will allow us to get healthy, cancer fighting nutrition in her and hopefully help her gain a few pounds quicker. We will give medicine through the tube as well. We are disappointed it had to get to this step, but we have no choice. The tube will hopefully help her gain enough weight to get a little further away from critical. But unfortunately, the only way she is going to gain significant weight to get her back on the growth chart is if the tumor shrinks at least a little bit.
So, we forge on.
One of the activities we have been spending a lot of time on lately is getting organized for our fundraising efforts to raise money for research and a cure related to Hailey's specific tumor type. A letter writing campaign will be coming to all of you very soon asking you to consider donating to the cause, and asking you to send the information on to as many people as you can think of. The real power in this will come if every one of you could contribute and send it on to another 20 or more people, and then they do the same, and the 20 or more they send it to do the same, and so on. There will also be some local events planned, and a website we are putting together where all people can read about our story and donate online and receive a tax-deduction receipt and hopefully even buy some merchandise that would help contribute to the cause. The "donating" site will be a seperate site from this one...this site is not built for that purpose, but we'll post the link all over this site when it is available and it will be all over the information in the letter writing campaign as well.
So we have a lot of things in the mix from a fundraising standpoint. Stay tuned....we need just a little more time to finish out our planning and enlist some other people to help, and then we'll be ready to go. In addition, we are trying to maintain 3 businesses, Shannon's job, a household, stay in shape, see some friends and other family once in a while, and most importantly, take care of each other. Hopefully we can find a way to do all of this well.
Hailey's first MRI since treatment started is in early September. This will be the beginning of many anxious moments for years to come waiting to learn what is happening inside our baby girl's little head. The date is already looming large in the Meltz house....
Tuesday, July 31, 2007 - 10:02amHailey's counts are back within normal range. Game on...
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