Tuesday, August 4, 2009

Update and Quirky Charlotte Observations and Sayings

It's been an emotional couple of days for me, but in a subdued way. I'm not totally upset or anything and I'm not really in a bad place. It's weird and difficult to explain. Like everything else with this journey, running the marathon is exhausting. And this jaunt in Houston is like a mini-marathon within the marathon. It's weird to be out of familiar surroundings (although after a while everything here starts to look familiar and "feel" like home). It's strange to not have access to a car 24/7 (and yet strangely liberating). It's unusual for me not to be uber-busy and always running to one thing or another. Yet that is probably a good change. If it weren't for the fact that I'm hanging out in medical facilities almost every day, this would almost be a vacation. It's definitely an opportunity for me to relax a little. I still have to think about work but that only takes up about 10% of my day (as opposed to the 60-70% of my day when I'm in Richmond). I've done more "reading for pleasure" in the last few weeks than I've done all year. And that's a very good thing.

Then there's the cancer factor. You meet families every day. We meet some at the RMH. We meet others in clinic. There's overlap (those who are living at RMH AND getting treatment at MDA). You hear their stories and you can empathize. Some have been on the journey much longer than you, others are just starting (and six months in, I feel like such a veteran). Many are here because (like us) something wasn't working and they've come here for answers. Their hospitals and medical teams back home did all they can with their resources and sent them here. Some stories are inspirational and others seem so bleak that your heart breaks. And you worry if down the line your story could echo theirs. I met a 16 year old girl yesterday who has been battling medulloblastoma with remissions and recurrences for over 8 years. Scary.

Everyone seems to deal with their own personal trauma in their own way (of course) and we slug along. The parents exchange knowing looks, sighs, and smiles. Awake at 7 AM...off to the grind of the clinic...shuttling around to appointments all day...home to dinner. And the kids play and laugh...and cry. Like I said, it's surreal and almost hard to explain.

I very much miss Roger. It's difficult for us to be apart. We are usually each other's sounding boards and even though we can talk/skype every night and text throughout the day, it's not the same as being there. Fortunately, Aunt B, Aunt Lynn, and Uncle Terry will be here Saturday, closely followed by Roger, and I am planning a date for just the two of us Saturday night. We just need some together time.

yesterday, Charlotte actually broke down crying as we were waiting for proton therapy because she (finally) decided she was hungry. I told her she couldn't eat and she just bawled. Today was better. I let her sleep as long as she wanted and she didn't get up till after 9 AM. She also ate some cheddar bunnies (thanks Aunt Rebecca!) right before bed so I think/hope that helped. She's been very tired and clingy. Still cries at the least little thing but she is eating ok and her weight is still stable. Nothing major in the way of symptoms. The medical teams just marvel at her every step of the way. Surprisingly, her hair is not thinning and her skin still looks ok (it can get burned/red or very thin and translucent) but that can be stable for a while and then change pretty rapdly. Good progress on the regularity front too. PLUS, miracle of miracles, we actually got in and out of radiation on time today!

I made the mistake of trying to walk to the proton center this morning. It really didn't seem that hot at 10 AM but halfway there, I was soaking in sweat. Didn't help that I was carrying a pretty heavy backpack and pushing a stroller. I needed the exercise and the shuttle schedule wasn't really jiving with our schedule so I figured it wouldn't be too bad. It was less than a mile walk. I made it but I was DRENCHED by the time I got there. That was my workout. Charlotte was fine (she got to ride...in the shade, no less). Needless to say, we took the shuttle home. Heard on the radio we might set a record for temp her today. Somewhere near 100. Geez!

So that's all the news I have for today. We're just hanging around waiting for dinner. Thanks for all the cards, letters, and care packages. Charlotte enjoys reading all the cards. We got a very funny Hawaiian postcard yesterday from her friend Bridget and it made her laugh.

Just heard that the Bonitas made it back to Tennessee safely. Good to hear! Love to everyone!

Rachel and CJ


And now it's time for "quirky Charlotte observations and sayings":

1. She likes adding a -k to the end of words, particularly saying "O-cake" instead of "O-K". She also likes playing with word sounds so if I say "mish mash" she'll say "bish bash", etc. What good phonological skills!

2. As mentioned before, she LOVES to retell the plots of some of her favorite TV shows and movies. As she is falling asleep some nights, she will be quiet for the longest time (you'll think she's asleep) and then out of the blue she will tell you some plot point from Diego or Blue's latest adventure.

3. She has developed this odd habit of not wanting to eat any "broken" food. She won't eat goldfish that are missing pieces (not whole) and does the same with the cheddar bunnies. She always gives the broken pieces to me ("You can eat these mommy"). This applies to both anthropomorphic food (i.e., goldfish, bunnies) and other food (pieces of cheese).

4. The other day, out of the blue, she said, "Mommy, I really liked it when I was a baby in your tummy." Too funny! She also added, "After that, I was born and drank from your ninnies." As long as I don't have to explain to her how she got IN my tummy, we're good.

5. She has gotten REALLY good at pressing the buttons for the elevator when we go up and down at RMH and at the proton center. As daddy likes to say, "She's a born button pusher!"

6. Today, we were working on stretching her leg muscles and the doctor had recommended adding warm towels and/or lotion to the mix. I was working on her stretches and massaging her legs with the lotion and she says, "Mom, is this my spa treatment??". I told her that yes, indeed, it was and only princesses get to go to the spa!! She loved it!

So there is your amusement for the day. never a dull moment with this chick!!

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