Monday, November 26, 2007 - 1:13pm
I'm squeezing this journal entry in quickly before I run off to an appointment. It has been hard to find time and energy to update lately but we know people are interested in the results of Hailey's MRI and how things are going in general. So here goes...
Hailey's tumor has not shrunk nor has it grown. There has been no change, which is what we expected. In early december we will be sending all Hailey's info to Dr. Roger Packer in Washington D.C. As I've noted before in these updates, if there is such a thing he is one of the "experts" in this field. We'll see what that brings.
All in all Hailey is doing fine. She HATES her new feeding tube. Long story short, we are back to battling her every feeding and seriously doubting whether we should have allowed a change to this style tube. Hopefully with more time she will adjust and fall into a routine like she did with the last one. The story of her life...
The Shop for a Cure event went very well last weekend. Thank you again to all who planned, participated, and attended. WFRV came to the event. You can check out the video on www.wfrv.com. Look to the right at the video section, there is a picture of Hailey and Faith. When you hit play, a commercial comes on first, and then the newscast. The final numbers will not be in until sometime in December, but we will try to report back on results when we know more. Many of the vendors who participated have also agreed to share proceeds from future shows that stem from the event, so the benefits of this day could trickle in for months to come in theory. Anyway, it was a great day and we once again want to thank people for the incredible support.
Monday, November 19, 2007 - 1:18pm
Tomorrow is a big day for two reasons:
1.) It is Faith's birthday! Our baby is turning 4 (going on 14 at times). It is cliché and all parents seem to say this, but time truly does go fast! We are going to take the girls to Chucky Cheese (as much as we can't stand the chaos of that place!) and then Hailey will head home with Shannon, and Faith and I will go to the parade in Appleton. Faith is very excited. Today she brought her classmate’s bananas for her birthday treat. That's funny.
2.) We head down to Madison early tomorrow morning with Hailey for another MRI. While she is asleep for the MRI, they are also going to replace her feeding tube with a button, meaning no more long "tubey" hanging from her body. We can take care of both procedures in one shot, sparing us and Hailey another trip and a mountain of stress!
The results of the MRI are likely not going to be a mystery. We obviously hope the tumor has not grown, but it seems there is very little chance it has shrunk since the last MRI as she still has not gained any significant weight. Regardless, we are anxious to get this MRI completed so that we will have a total of three MRI results since and including diagnosis to send off to the Doctor in Washington D.C. I mentioned in our last journal update. It is time to have another set of eyes and another institution or two looking at our case just to be sure we are not missing anything.
The rest of the week will then involve family, friends, and food! The Thanksgiving celebration begins on Wednesday evening and in some form or fashion will last through Saturday for us. Despite the circumstances, we do still realize every single day that we have a lot to be thankful for, so why not extend the holiday a bit! AND FOR THOSE OF YOU EARLY AND PROACTIVE HOLDIDAY SHOPPERS (or if you are just looking to treat yourself to some new purchases) DON'T FORGET THE “SHOP FOR A CURE” EVENT THIS SATURDAY FROM 10:00 a.m. - 2:00 p.m. at THE WAVE IN APPLETON. Details in the Events section of this site.
And last but not least, the Packers are 9-1! The next two weeks are the true test. Detroit, and Dallas! Two offenses that could expose our defense and two DIFFICULT road games. I am reserving my overall opinion on whether The Pack are a legitimate superbowl team until after these next two games. We'll see....but love the season so far!
A happy and safe Thanksgiving to you all!
Thursday, November 15, 2007 - 11:02am
Hailey made it through her latest round of chemo with no apparent complications. She did not get sick and her mood did not seem to be greatly affected. So now we are off for a week or two, and then we have another MRI. Once we get the results of this MRI, we are going to send all of Hailey's information to a doctor out in Washington D.C. If there is an expert in this field, he is definitely one of them. We want to get his opinion on the course of treatment taken so far, and most importantly, whether we should be considering (and would qualify for) any other promising treatments because of her inability to gain weight. Stay tuned for updates on what the next few weeks bring for us. We are turning it up a notch over here in our quest to determine whether there is another form of treatment to consider to shrink this tumor a little bit and get some weight on her!
We also wanted to mention that if any of you were considering ordering from our store for yourselves or for the holidays, please order within the current ordering period (end date given in the store section of the site). This should allow you to receive your items prior to christmas. And as a reminder, the shirts (both Men and Women) do tend to run a little small and shrink a little when washing and drying them, so you may want to consider that when choosing sizes. Thanks to all of you who have ordered items from the store already. Please be sure to tell people the story behind them when asked...and encourage them to come to our website to learn more. After the current ordering period ends, a new one will be started after the holidays and advertised accordingly on the store area of the site.
Thursday, November 8, 2007 - 8:39pm
Tonight Faith and Hailey were so cute! They were dancing around in their matching monkey pj's and laughing up a storm. I sat there thinking that this is how it is supposed to be! This is exactly how I pictured having kids would be like. The next thought that entered my mind is that in the next couple of hours, when Hailey is fast asleep, Brian and I will sneak into her room and give her chemotherapy through her feeding tube. It gives us knots in our stomach because we really don't know if it will help her. The only thing we know for sure is that she will probably get sick from it. One night down, four to go...
On a brighter note, the planning continues for our Shop for a Cure fundraiser. I wanted to extend a special thanks to my partners-in-crime, Lisa Comber and Susan Weis. They are both doing an amazing job!! We have 28 vendors signed up and are having a bake sale. If anyone is interested in helping us out at the event or donating baked goods, contact Lisa Comber for details.
Phone: 920-831-6856 or 920-205-6884
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