Thursday, November 1, 2007 - 6:24pm
We are happy to report that for the first time since Hailey got her feeding tube in August, she SAT DOWN in the bath tub tonight and played contently the entire time. No screaming, no crying, no refusal to sit in the water...she was just like she used to be in the bath. She even let Faith come in with her and they sat and played together the entire time. Shannon and I are so happy right now it is beyond words. We feel like we just won the lottery. I guess it doesn't take much these days...even the little things have become unforgettable.
Wednesday, October 31, 2007 - 9:13am
Happy Halloween! Faith will be dressing up and trick or treating as "Stephanie" from Lazy Town. Hailey keeps saying she does not want to dress up. She is not into it at all. She really hates getting dressed and undressed in general, which leads to the reason why I am doing this journal entry...
Many times we are writing these entries to communicate with the people who are following our story and of course to capture the details of our situation for our own purposes...to look back on some day. This entry is an example of the latter. We wanted to document something we battle with regularly hoping that when looking back on it a few years from now we can laugh and be thankful it is long behind us.
95% of the time Hailey is a happy, easy going little girl. She truly is a joy to be around. But she continues to battle us EVERY SINGLE DAY on the routine things in life. Getting her dressed, brushing her teeth, changing her diaper, brushing her hair, getting her to sleep past 4:00 a.m., and taking a bath always involves an all out battle...screaming, crying, kicking, and of course vomiting at times. We love the vomiting. Doing these routine activities are by far the worst and most stressful times in our house. It has become pretty obvious to us now that all this is mostly behavioral...2 year old defiance and naughtiness, something we need to be more firm with like we did with Faith and like any good parenting book or seminar would tell you to do. The thing we have struggled with to this point, however, is the difficulty in sorting through what is typical naughty 2 year old behavior, and what is related to the tumor or everything she has been through over the last several months. So, admittedly, we have probably not been as firm with her as we should be. Even with a firmer approach, we would still try not to make her do things she does not want to do. It's just not worth it and she is tortured enough on a regular basis by all the medical procedures she goes through. But there is no getting around taking a bath, getting dressed, getting a diaper changed, or brushing teeth. Those are all pretty important things. And the sleep thing...yikes! Neither Shannon nor I were built to be awake at 4:00 a.m. for the day. I know some people would probably be fine with that, but it is KILLING us.
So we are in a phase right now that is making it difficult NOT to wish for time to pass and her to get older and grow out of this (with some appropriate encouragement from us of course). But we hate thinking that way because time already goes too fast and we know someday we will miss when Hailey and Faith were this age...like when they are teenagers and too cool to hang out with Mom and Dad for example. So for now we battle on. We need to get a little firmer and more consistent with Hailey, find a little more internal toughness in general, and when all else fails...revert to a glass of wine or two to numb the pain! :) In the meantime, we pray for patience and wisdom about the most effective way to handle these moments, keeping the best short and long term interests of all in mind.
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 - 12:50pmLots 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!
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