Thursday, August 24th

Our Claire Came Home Today!!!!!!

Boy, when they say there will be great days and others that are less desirable and to only LIVE day-to-day, we now understand. Her week of chemotheraphy and lack of nausea was so incredible and then to be topped off with an unheard eating jamboree on Saturday was pure delight. We were on top of the world. Well, for the first time late Sunday, her chemotheraphy treatment and its effects surfaced. Claire lost all of her appetite, her irritability and aggitation was hightened and she complained regularly of aches in her legs and arms. She would yearn to be rubbed and then cry stating it hurt when touched. To enhance her bad mood she was very constipated and uncomfortable. She was just plain grumpy about everything and everyone, although again to everyones amazement still absolutely no nausea to date. It's difficult to see and hear her distress and voice her strong feelings of unhappiness, i.e. "LEAVE ME ALONE". And as a parent, my initial response is to make her apologize and correct her inappropriate behavior, but its the nurses and especially the physicians, that have rejoiced when attacked by her fighting spirit and unkind words. So, I am slowly learning to actually smile too as she verbally and sometimes physically objects to her medical treatment or regular checks. By early Tuesday morning, we entered into discussions of inserting a feeding tube with additional hospital stays throughout the next week. We all lost a little steam. Yet, surprisingly by Tuesday evening - and half a peanut butter and jelly sandwhich later - things were looking brighter. Her mood also considerably improved after the relief of about a 6-7 day period of no bowel activity. Wednesday morning our precious food critic and eating machine started coming back. McDonalds chicken nuggets, fries with ketchup, milkshakes, cheerios, cheeseburger, carrots, cheeze-its, and or course "chocolate medicine". Papa Jack long ago re-named Hershey Chocolate Bars as "chocolate medicine", it's always been one of those sacred papa and grandchild special codes. It has new meaning now. Her therapy continues up a very steep and rocky hill but Claire has decided she is going into the rock climbing profession. She can now sit up on the edge of the bed, legs dangling over and with very little to no support and can control her head and upper body successfully. She has started balancing herself automatically as well. Just like infants learn to place their arms out or counter move their upper body in the opposite direction when leaning to one side, Claire doesn't fall over anymore. Hooray! She is twisting her sides reaching for objects and exhibiting lots of other signs of neurological progress and promise daily. In the first couple of hours home, she even started to crawl a little and now easily rolls over, straightens her back with her arms extended and readjusts herself independently, if slipping down in a sitting position on the couch or chair. She even took a few steps walking with assistance and aid. It's heartwrenching but incredibly inspiring that from the moment she entered back home she has acted like and requested to do and go just like before ... it's almost like she doesn't realize she can't just get up and walk down the hall, or play with her toys in the same manner. It's obvious though that her non-disabled type of thinking and belief will only expedite her recovery faster.

It was Tuesday evening, after I had left for home - as Chris and I trade off part of every day and each full night at the hospital - that Chris called informing me of Claire's bowel movement and P.B. & J eating achievement, that I started to realize the different traits and strengths we both possess. After 12 years of marriage and trying to compete with our variations in personalities, characters and child raising techniques, I began to understand and appreciate how important our different styles and attributes are and their affect on Claire's recovery. And then when I expanded this thought to our immediate and extended family, it was overwhelming. EVERYONE contributes something vital and necessary to Claire's current healthy state or to our families ability to just continue to survive. Reese could not be happier and lights up the entire hospital ward during her visits and although privately scared and unsure and missing Claire considerably, Ryan seems as secure and loved as we could hope for during this last stressful month.

Again, today was joyful beyond belief and life confirming that although small and precious, Claire's will to live is larger and bigger than we can imagine. As much as we and Claire want everyone to run right over to share in our celebration, from now til really next Tuesday her "good" blood cells that fight off infections will be at its lowest and she is very susceptible. Give us some time to adjust to Claire's new home life and for her blood count to raise back up and then we will open our doors wide and with pure elation to all that want to see her smiling face. Thank you again for all your support and for contributing to her ability to return home today.