What can we say about January 7, 2010 that hasn't already been said? Not much. Doesn't make us think about it any less. Doesn't lighten the load of remembering. Doesn't convince the bus driver to go park somewhere else. It still pretty much sucks.
So what I'd like to do on this third anniversary of Charlotte Jennie's metamorphosis is to offer you music that reminds me (Daddy) of her.
The Great Remember from the CD Rare Bird Alert is the latest tune that has her spirit all over it. The moment I saw this video of Steve Martin playing his original clawhammer banjo composition during his tour with the Steep Canyon Rangers, I thought of her. It has a beautiful, yearning melody and yet there are still wonderful elements of Martin's humor as he tunes before he plays.
Radiance is a vocal version of a Keith Jarrett improvisation recorded by Julia Dollison and Kerry Marsh. I believe Kerry's sister put together the video slide show. It's heartbreakingly beautiful and very difficult for me to watch.
Charlotte certainly loved Dora The Explorer. She learned several Spanish words and phrases watching Dora and after her first surgery, when she started being able to speak, she counted to 10 in Spanish for us. It meant an awful lot to hear her do that.
The Chanticleer version of Franz Biebl's Ave Maria is another heartbreakingly beautiful piece and I can't hear it without thinking about Charlotte and becoming a blubbering mess. (The link comes complete with fireplace)
I believe someone introduced us to "Two Thumbs Up" by Johnny Bregar after Charlotte died or near thereabouts. It has become one of our official theme songs and Johnny has been tremendously generous to give us permission to do pretty much whatever we want with his recording. We promise not to abuse that trust.
Here's another song that someone sent to us after Jan 7, 2010. It's Jonatha Brooke's version of Woody Guthrie's, "New Star." The lyrics are actually fairly odd but it came to us at the right time and now it has all kinds of meaning Woody never intended, I'm sure.
Of course, you didn't think I was going to leave out the Disney angle, did you? Let's start with the last movie Charlotte saw in a theater, The Princess and the Frog. There isn't a tune on the soundtrack that DOESN'T make me think of Charlotte and there was a time when I would obsessively listen to it every morning when opening up at Romp n' Roll (much to the chagrin, I'm sure, of the rest of the staff); however, I will include my favorite song from the movie, "Gonna Take You There."
How about some Little Mermaid? "Part of Your World" seems so ubiquitous; so completely over played but it's a Charlotte song so I don't think I will ever get tired of it.
Next comes Mary Poppins. I don't remember exactly when this movie became one of Charlotte's favorites but all of a sudden, it was all she wanted to watch. So here's "Let's Go Fly A Kite" which has become one of our unofficial theme songs.
Last but not least by any stretch of the imagination, here's Charlotte's favorite version of Charlotte's favorite song, Frosty The Snowman by Dan Tyminsky. We actually have a video of Charlotte dancing and sort of doing karaoke to this song. We also have video of several former NFL players singing this to her on her birthday on July 9, 2009 in the the Nelson Clinic at Children's Hospital of Richmond. THAT was something to see! Waddya know? You can! Here!
I'm sure I've left off dozens of songs and I'll probably be adding a tune here and there for days. Please feel free to add your own song if it reminds you of CJ.
Today, we invite you to have a chocolate milk toast in honor of Charlotte and if you'd like, eat some "dadoo" (Cheerios or "round cereal") and mac n' cheese.
We love you so very much, Monkey Butt and miss you every day.
Showing posts with label Frosty. Show all posts
Showing posts with label Frosty. Show all posts
Monday, January 7, 2013
Saturday, July 25, 2009
Charlotte has Done So Well today!
Charlotte has done so well today! She didn’t eat much of anything this morning before she had to go NPO but she did drink a container of apple juice at a little after 11. (fudged the 11 o’clock cut-off just a little). The sugar in the apple juice must have set her off because she came alive after that. Chatting and telling everyone plots of shows/books, who in our family is related to whom, and general CJ stuff like that. When the Bonitas came by, I walked to The House and did some domestic stuff including making CJ’s bed, check the mail, stuff like that. Also got a change of clothes for me. The Bayer folks were providing lunch today and were handing out bags with little teddy bears in them. They also gave out little squeezy stressball eagles. Who would need something like that? :-P
When I got back to CJ’s room, I heard that she had taken the Bonitas on quite the little jaunt. She had been on a ride around the floor in the wagon already but when they took her out to go back into the room, they found she wasn’t quite done and she led them off on a walking tour of the floor this time, followed by yet another ride in the wagon.
Then it was time for the ambulance ride to the proton center which has already become old hat for her. The crew was different and the woman could have been our neighbor, Abby’s, big sister. Charlotte didn’t see the resemblance.
At the proton center, Charlotte played in the toy area and made me give up my shoe for “lace time.” She has the most disgustingly sweet, Shirley Temple, cavities for the rest of your life way of asking, “Daddy may I PLEASE play with your shoestring?” Then after she completely deconstructs my shoe, she turns around and asks, “Is it ok if I play with your shoestring?” I mean, who can resist it. The police should isolate it and use it as a non-lethal weapon. “Mr. Bad Guy, would you PLEASE freeze?” “If done right, no can defend.” (Movie trivia time…)
After a while of great playtime, she ran out of steam and just wanted me to hold her on the couch in the lobby. But not just any couch, mind you. It HAD to be the couch we had chilled on (“on which we had chilled?”) every day we had been there. So we got settled with her wrapped up in the sheet we got from the recovery room and I must admit, I don’t mind doing it. Unfortunately, we had been settled no more than 10 minutes when they called us in.
The traditional singing of Frosty ensued. They’re starting to get pretty good at it and CJ sang along. Of course, it’s all about making her going to sleep a good experience. “If they go to sleep well, they wake up well.” It’s kind of a mantra here. All these treatment places have traditions and ways for patients and their families to stay focused on the end like the bell that chemo patients ring at the end of treatment (Dog! Dog! Dog!) Anyway, the proton center has a gong and they make these calendars for the patients that count down to the last treatment and they made a beautiful one for Charlotte.
Side note: That was actually the second time Frosty had been sung to her today. The other ambu-guy, Doug, had an earworm going that was really odd. “Santa Clause Is Coming To Town” was going through his head so I decided to manipulate him a little. I told him about Frosty and CJ and I sang the first verse. Buy the time we were done with the first set of “thumpity thump thump”s, we were at the center and Doug had a new earworm! (how does one do an evil face?) Olive Sacs would have a field day with this guy!
Treatment #4 (29 to go) went very well and we headed back to the hospital.
Then the munchy flood gates opened! After we got resettled, I pulled out mac n cheese, she ate it. Mandarin oranges? Gone! Snuck in some magnesium citrate. No hesitation. She ate pretzels, brownies, an entire chocolate milkshakeshake, a tortilla and she took her senna with almost no trouble!
This is a tale of two Charlotte’s. The difference between three days ago and now is so profound, even Dr. Wolf was forced to reconsider things. He came by last night (does the guy ever go home?) to see about CJ and was very happy with her progress. The neck is still stiff but whatever was making her nauseous and not interested in eating has passed. Yea! Looks like we may get out tomorrow (Saturday).
(It’s now Saturday and I will see my wife in just a few hours!)
Accutane is definitely the chemo drug happening starting Sat (today). Dr. Wolff wanted to start it last night but there wasn’t any in the hospital. Also, they’re going to compound it so we don’t have to worry about cutting the top off the pill and mixing it with something. The MRI from just after the third surgery hasn’t showed up yet so it’ll have to wait until next week to do the comparison.
Off to left field…Watching Pres. Obama talk about the newest education initiative. Lots of big ideas and fancy talk but I have yet to hear him say much about music. When is everyone going to realize how essential the arts, music in particular, are to education? More and more research comes out all the time saying how important music is to brain development, socialization, gross and fine motor skills, you name it. Multiple areas of the brain are utilized when experiencing/making music, parts of the brain actually grow larger when one studies music. You want a cause to support, get school boards and other LOCAL government officials to make the arts a priority in public schools instead of always making them the first thing to go.
OK, I’m done. Have a nice day. Fly safe and comfy, Dear.
When I got back to CJ’s room, I heard that she had taken the Bonitas on quite the little jaunt. She had been on a ride around the floor in the wagon already but when they took her out to go back into the room, they found she wasn’t quite done and she led them off on a walking tour of the floor this time, followed by yet another ride in the wagon.
Then it was time for the ambulance ride to the proton center which has already become old hat for her. The crew was different and the woman could have been our neighbor, Abby’s, big sister. Charlotte didn’t see the resemblance.
At the proton center, Charlotte played in the toy area and made me give up my shoe for “lace time.” She has the most disgustingly sweet, Shirley Temple, cavities for the rest of your life way of asking, “Daddy may I PLEASE play with your shoestring?” Then after she completely deconstructs my shoe, she turns around and asks, “Is it ok if I play with your shoestring?” I mean, who can resist it. The police should isolate it and use it as a non-lethal weapon. “Mr. Bad Guy, would you PLEASE freeze?” “If done right, no can defend.” (Movie trivia time…)
After a while of great playtime, she ran out of steam and just wanted me to hold her on the couch in the lobby. But not just any couch, mind you. It HAD to be the couch we had chilled on (“on which we had chilled?”) every day we had been there. So we got settled with her wrapped up in the sheet we got from the recovery room and I must admit, I don’t mind doing it. Unfortunately, we had been settled no more than 10 minutes when they called us in.
The traditional singing of Frosty ensued. They’re starting to get pretty good at it and CJ sang along. Of course, it’s all about making her going to sleep a good experience. “If they go to sleep well, they wake up well.” It’s kind of a mantra here. All these treatment places have traditions and ways for patients and their families to stay focused on the end like the bell that chemo patients ring at the end of treatment (Dog! Dog! Dog!) Anyway, the proton center has a gong and they make these calendars for the patients that count down to the last treatment and they made a beautiful one for Charlotte.
Side note: That was actually the second time Frosty had been sung to her today. The other ambu-guy, Doug, had an earworm going that was really odd. “Santa Clause Is Coming To Town” was going through his head so I decided to manipulate him a little. I told him about Frosty and CJ and I sang the first verse. Buy the time we were done with the first set of “thumpity thump thump”s, we were at the center and Doug had a new earworm! (how does one do an evil face?) Olive Sacs would have a field day with this guy!
Treatment #4 (29 to go) went very well and we headed back to the hospital.
Then the munchy flood gates opened! After we got resettled, I pulled out mac n cheese, she ate it. Mandarin oranges? Gone! Snuck in some magnesium citrate. No hesitation. She ate pretzels, brownies, an entire chocolate milkshakeshake, a tortilla and she took her senna with almost no trouble!
This is a tale of two Charlotte’s. The difference between three days ago and now is so profound, even Dr. Wolf was forced to reconsider things. He came by last night (does the guy ever go home?) to see about CJ and was very happy with her progress. The neck is still stiff but whatever was making her nauseous and not interested in eating has passed. Yea! Looks like we may get out tomorrow (Saturday).
(It’s now Saturday and I will see my wife in just a few hours!)
Accutane is definitely the chemo drug happening starting Sat (today). Dr. Wolff wanted to start it last night but there wasn’t any in the hospital. Also, they’re going to compound it so we don’t have to worry about cutting the top off the pill and mixing it with something. The MRI from just after the third surgery hasn’t showed up yet so it’ll have to wait until next week to do the comparison.
Off to left field…Watching Pres. Obama talk about the newest education initiative. Lots of big ideas and fancy talk but I have yet to hear him say much about music. When is everyone going to realize how essential the arts, music in particular, are to education? More and more research comes out all the time saying how important music is to brain development, socialization, gross and fine motor skills, you name it. Multiple areas of the brain are utilized when experiencing/making music, parts of the brain actually grow larger when one studies music. You want a cause to support, get school boards and other LOCAL government officials to make the arts a priority in public schools instead of always making them the first thing to go.
OK, I’m done. Have a nice day. Fly safe and comfy, Dear.
Friday, May 29, 2009
MRI Results and Update
I know everyone is anxiously awaiting MRI results. So are we. Since it may be a while (I think Dr. Tye is in clinic so we might have to wait till this afternoon for results) I thought I would just satiate everyone with a mini-update.
Charlotte slept till 4 AM (that's 15 hours for anyone keeping track). They even tried to arouse her at midnight so she could eat something before she became NPO but she could not be budged.
She was entertained by Caillou and Frosty till her MRI at 7. They took her down and she came back at about 10 or so. Dr. Tye did check in with us about 9:30 but he said the scans weren't quite ready so I'm guessing he had to go back to clinic.
She came back pretty out of it from the anesthesia but she's been gradually coming back to arousal. She's had some milk and apple juice and a few cookies. We tried to get her interested in coloring but she seems only interested in the Wonder Pets right now.
Her tongue is still hanging out of her mouth. You can kind of understand her when she talks and she can sometimes put it in her mouth on command and talk normally but she still seems to have some motor difficulty holding over from the surgery. The general consensus is that it is a tardive dyskinesia resulting from a combination of meds, swelling, and the very act of the surgery. Everyone is expecting she should be better as time goes on. All of her other levels (blood counts, CBC, etc.) look great and hear drain is looking good too.
So that's all I have to report. I will let you know when I have more news.
Rachel
Update:
First of all, I will direct your attention to the Caring Bridge thermometer at the right. Please notice that Charlotte's name has been un-bolded and only her first name is being used. Thanks to all of you who complained about their misleading fundraising tactics. It looks like although we did not get rid of the thermometer entirely, it was made "less misleading". For now, we will stay with Caring Bridge (happily) and much thanks to those of you who HAVE supported this website. We admit that it is a great service and has benefited us greatly these past few months.
Now on to the real news:
Charlotte is finally resting again and everything is looking great. Her ventric is draining nicely and very clear. Her speech is becoming slightly more clear and the tongue protrusion seems to be dissapating. Yay.
The MRI looks really good. NO cancer cells visible in the spine and I would say that more than half of what was left in the brain (maybe even close to 75-80% is gone. There is still a few spots including a section on the brainstem that he couldn't get from the angle of surgery that he took but it leaves a good amount for radiation to "throw the book at" (as Dr. Tye put it).
So now we just let her heal and will start the consultation process with oncology, radiation oncology, and the good folks in Houston for the next steps. More wait and see as far as options go but we are at least done with this milestone. Dr. Tye thinks the ventric might be able to come out by Sunday which means that if all goes well and she remains stable, we may get to go home sometime next week. All good news.
That's all I have to report for now.
Rachel
Update from Roger:
Let me also add that I am satisfied with the adjustment of the thermometer. It is consistent across Caringbridge so now would be the time to donate to CB if you were holding off. Let them know how powerful we are!
Also, I really need to let you know about a very impressive young man we met in the MRI room before CJ's surgery. I already mentioned him before but left out names so the suits wouldn't get mad at me. But now I'm very happy to announce he has just started a CB site and everyone should visit and sign the guestbook.
His name is Nile Price (I spelled it correctly. No "s" on the end of "Nile.") Here's his site:
http://www.caringbridge.org/visit/nileprice
He's one of those kids you just naturally pull for. (I think his mother deserves just a little credit! :-)
Gotta go relieve Rachel. We're going on a date tomorrow! Gonna go see "Up!"
Charlotte slept till 4 AM (that's 15 hours for anyone keeping track). They even tried to arouse her at midnight so she could eat something before she became NPO but she could not be budged.
She was entertained by Caillou and Frosty till her MRI at 7. They took her down and she came back at about 10 or so. Dr. Tye did check in with us about 9:30 but he said the scans weren't quite ready so I'm guessing he had to go back to clinic.
She came back pretty out of it from the anesthesia but she's been gradually coming back to arousal. She's had some milk and apple juice and a few cookies. We tried to get her interested in coloring but she seems only interested in the Wonder Pets right now.
Her tongue is still hanging out of her mouth. You can kind of understand her when she talks and she can sometimes put it in her mouth on command and talk normally but she still seems to have some motor difficulty holding over from the surgery. The general consensus is that it is a tardive dyskinesia resulting from a combination of meds, swelling, and the very act of the surgery. Everyone is expecting she should be better as time goes on. All of her other levels (blood counts, CBC, etc.) look great and hear drain is looking good too.
So that's all I have to report. I will let you know when I have more news.
Rachel
Update:
First of all, I will direct your attention to the Caring Bridge thermometer at the right. Please notice that Charlotte's name has been un-bolded and only her first name is being used. Thanks to all of you who complained about their misleading fundraising tactics. It looks like although we did not get rid of the thermometer entirely, it was made "less misleading". For now, we will stay with Caring Bridge (happily) and much thanks to those of you who HAVE supported this website. We admit that it is a great service and has benefited us greatly these past few months.
Now on to the real news:
Charlotte is finally resting again and everything is looking great. Her ventric is draining nicely and very clear. Her speech is becoming slightly more clear and the tongue protrusion seems to be dissapating. Yay.
The MRI looks really good. NO cancer cells visible in the spine and I would say that more than half of what was left in the brain (maybe even close to 75-80% is gone. There is still a few spots including a section on the brainstem that he couldn't get from the angle of surgery that he took but it leaves a good amount for radiation to "throw the book at" (as Dr. Tye put it).
So now we just let her heal and will start the consultation process with oncology, radiation oncology, and the good folks in Houston for the next steps. More wait and see as far as options go but we are at least done with this milestone. Dr. Tye thinks the ventric might be able to come out by Sunday which means that if all goes well and she remains stable, we may get to go home sometime next week. All good news.
That's all I have to report for now.
Rachel
Update from Roger:
Let me also add that I am satisfied with the adjustment of the thermometer. It is consistent across Caringbridge so now would be the time to donate to CB if you were holding off. Let them know how powerful we are!
Also, I really need to let you know about a very impressive young man we met in the MRI room before CJ's surgery. I already mentioned him before but left out names so the suits wouldn't get mad at me. But now I'm very happy to announce he has just started a CB site and everyone should visit and sign the guestbook.
His name is Nile Price (I spelled it correctly. No "s" on the end of "Nile.") Here's his site:
http://www.caringbridge.org/visit/nileprice
He's one of those kids you just naturally pull for. (I think his mother deserves just a little credit! :-)
Gotta go relieve Rachel. We're going on a date tomorrow! Gonna go see "Up!"
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