So to start where Roger pretty much left off, Charlotte did, indeed, wake up at about 2 AM. Rather, she was awake when I went in to check on her. We read some books and I struggled to keep my eyes open but about 3:30/4 AM she was asking for chocolate milk and wouldn't you know we hadn't stocked up before our evening ended. Roger was a saint for going out to Wally-World (that gift card we just got sure came in handy) and getting needed supplies.
I went back to sleep for a bit but we were rarin' to go by about 8:30. I just hoped that she wouldn't melt down before lunch. We picked up Beth, our paparazzi for the day, and navigated our way to the Magic Kingdom.
Once we got there, we immediately got on the train and journeyed over to Mickey's Toon Town Fair. This was where we got to meet Mickey and Minnie and see their houses. After looking through their houses (a self-guided tour), we got to the the line for "THE MICE" and immediately our super-duper-ooper-schmooper GKTW access passes kicked into action. The Disney employee ushered us into the secret passageway and we had a much shorter wait. When we went in to see Mickey and Minnie, they were so sweet and spent so much time with us and Charlotte. Roger and I both got very heartfelt hugs from Mickey. You could tell that even though he doesn't "talk", he was empathizing with us and sending his good wishes. So sweet! After many pictures and the signing of autographs, we made our way to the next area of characters. We had the choice of seeing the princesses or the fairies. Since we knew we would be lunching with the princesses, we selected the fairies. Again, access is a good thing. There was over an HOUR wait to see the fairies but we got in after about a 15 minute wait. We took Charlotte out of her stroller as we made our way into "Pixie Hollow" and as soon as she saw the fairies, she let go of Roger's hand and went straight to SilverMist. The three fairies there today were SilverMist, Rosetta, and (of course) Tinkerbell. If you don't know these characters, you better brush up on your Tinkerbell movies! Charlotte talked to all of them and she was immediately a little chatterbox. Roger and I were just kind of left in the background to watch. I, personally, saw how happy she was and just started crying. I couldn't help it. The tears were just flowing. I'm not sure how long we got to visit with the fairies but it seemed like forever. They really took their time with her and made every effort to make her feel special. It was so great!
After that, I almost felt like I could leave and be happy. It was that good!
Then it was off to Fantasyland where we rode many rides, got to meet Ariel in her grotto (again, a fabulous meet and greet) and see a smokin' brass and drum marching ensemble play Disney favorites. Those Disney musicians are the best! We pretty much saw all of Fantasyland before it was time for lunch at Cinderella's castle. We had a brief meeting with Ashley, the mom who arranged our Princess lunch. It was nice to meet her in person and be able to thank her. Their family is vacationing at Disney this week as well and gave us their reservations to Cinderella's table. We feel so blessed!
We went through to another meet-and-greet with Cinderella and then up to our lunch. The meal was true fantastic Disney cuisine: I had a mixed green salad with pan-seared salmon, craisins, and blue cheese. Roger had the same salmon but with jasmine rice, and Beth had the pork tenderloin. (Charlotte had a hot dog: fine cuisine, indeed!) Dessert was a cream cheese-chocolate torte that was DIVINE. During the lunch, all of the other princesses (Snow White, Jasmine, Aurora, and Belle) came around to each table and talked, took pictures, and signed autographs, We also had a fabulous view of Fantasyland from our table. All of the princesses gave Charlotte smooches, leaving their lipstick imprints on her cheeks. By the end of lunch, she was covered in kisses!
After lunch, we made it downstairs but Charlotte was asleep after less than 20 minutes in the stroller. We decided to walk a little bit (if for no other reason than to burn off some calories). Roger and I took the opportunity to ride Thunder Mountain and then we headed back to the entrance. We did get to see a little bit of the parade. We headed back to GKTW and Charlotte just woke up about 7 PM.
I can't even begin to express what a great day this has been. It's so nice to be able to enjoy the park with Charlotte and see the joy on her face when she meets the characters. Another nice thing is that since Roger and I have "done Disney" many times before, neither one of us feels the need to see every aspect of every park. We're just kind of taking it at HER pace. Tomorrow will be another day at the Magic Kingdom and my cousin Sarah and her husband and daughter plan to join us.
I apologize that there are no pictures to post (yet) but I promise that there will be some coming. Beth took over 300 (!!) pics of us today and I've already seen a few that are great. We will be posting pics and video soon although much of it I'm sure will not get downloaded until the end of our trip.
Thanks to everyone continuing to keep up with our story. We promise to post when we can but if we don't, it's just cause we're having too much fun!
Rachel
Showing posts with label Mickey Mouse. Show all posts
Showing posts with label Mickey Mouse. Show all posts
Wednesday, December 2, 2009
Wednesday, August 5, 2009
A Difficult Day
"There are two ways of meeting difficulties: you alter the difficulties, or you alter yourself to meet them." --Phyllis Bottome
It's been a rough day. Plain and simple.
First of all, it's hotter than Hades here. Heat index was WAY over 100 today and we spent as little time outside as possible. No walk, no exercise for me.
Her appointments went well. The clinic was VERY busy. The busiest I've ever seen it in the lobby (standing room only). They did get us in pretty quickly, though. Then we just waited for Dr. Wolff. Her labs look pretty good. White blood cells are low but everything else is looking ok. So as long as she doesn't get a fever, we're still good.
Had to run through some rigamarole trying to get her Accutane prescription renewed. Still haven't filled it yet but I should be able to do that tomorrow.
We left the clinic with JUST enough time to wait for the shuttle, jet over to the proton center, and go right into radiation. Second day running on time. We're going to get spoiled! And after today, her time bumps back to before 1 PM! Yay! That will mean (hopefully) earlier time slots and less time NPO.
We came back to the RMH and she has been watching movies most of the afternoon. She got a great care package today from Aunt Kimmie with some new horse figurines to play with and some new videos so she's in 7th heaven at the moment. Didn't eat much (one corn dog bite and some chocolate milk...that's it!) but she had a poopie. Second day in a row for that!
Now to the tough stuff. I got onto the MD Anderson website last night to check some reports. One of the great things about MDA is that all of her medical reports get posted online and we have access to it. We also have all her appointments and can cancel, reschedule, and request appointments as well as contact anyone on her medical team. It's a really great website. Anyway, I knew that Dr. Wolff had been able to compare the post-surgery (May 29th) MRI with the MDA (July 14th) MRI (finally) and had taken it to the tumor board on Monday. Low and behold, he had posted a report.
And I quote: "The images from May 29th and July 14th were compared and reviewed....Some of the tumor lesions which had been left behind after the surgery became smaller during that time but there were new contrast enhancing lesions and leptomeningeal disease which appears to be new. This has to be judged as a mixed response-progression."
So what that means in lay-person terms is that while it looks like some of the tumor left over from surgery actually got smaller (yay) there are new tumors/lesions forming and the cancer has most definitely spread to the spinal fluid (NOT yay). Dr. Wolff and I had quite the talk about this today. He is still confident that the proton radiation will help shrink the current tumors; however, he realistically does not believe that radiation alone will be enough to fight this. We are looking at a cancer that grows very quickly, very aggressively, and is starting to spread into her spine. Not good. He mentioned a new drug (Velcade) that is used as a chemotherapy agent with many patients who have resistant tumors and this will probably be an option after radiation. We will continue to push the Accutane and possibly Topotecan (we can alternate the two every two weeks) during radiation and then revise the protocol following radiation to include a new mix of meds (some of the latest ones and maybe the Velcade).
It is so hard to hear this. It is so hard to know that while some of this treatment is working, it may not be enough. This is a very tough battle. I have always been a very positive person. Those of you who have known me a long time know that I pretty much try to see the glass as half-full. Always try to put a positive spin on things. And I am stubborn. I rarely give up (to a fault, I'm sure!). But every time we get a report back on an MRI, I keep getting knocked down a peg or two (or ten). Hope is there. Faith is there. But it is a weak candle that threatens to be dowsed at every turn. Here we are back in the middle of the hurricane and my tiki torch is getting drenched.
Please keep the prayer cycle flowing. Please keep the positive energy up (for me and for Roger...and for all of us). And just understand that I may not be the happiest person right now. I live life one day at a time. No faster....Perhaps I will feel differently tomorrow. Today it's a difficult day.
Thank goodness I have an appointment booked with Dr. Bitsko already for my return next week. And my "spa visit" is next Thursday. Much needed, don't you think?
On a funny note, I called the MCV clinic today to try to get Matt Bitsko's email address and check in with him on this issue (I seemed to misplace his email address) and the person that answered the phone said, "That person no longer works here." WHAT????? was the only thing I could say. Since when? What's going on? I didn't recognize the voice or name of the person answering the phone but he said someone from the office would call me back with more information. I just about went into a panic attack. Well, I decided to call Matt's voicemail (I did have that number) and just as I reached it, my call waiting beeped and it was the clinic calling me back. The same person was on the phone and apologized saying that he had gotten confused and had misspoken. Holey moley! Don't tell a woman in crisis that her therapist is no longer available!!! That's just WRONG!
So I guess that's really all I have to report. Sorry for the downer of a post. If you need a laugh, just go to yesterday's and look at the "funny Charlotte sayings" post.
I will add one more that I forgot: Another "latest thing" is that when we go somewhere, she always picks what animals/toys she will bring (usually Mickey but sometimes one other item) but she ALSO decides what I get to bring (mom, you get to bring the tiger and the snoopy!). Oh, gee, thanks. While I'm not already schlepping around the portable DVD player, your favorite books, diapers, and all the other accoutrements and necessities, I need my own stuffed animals, apparently. Ha! I have told her that I can only bring one animal with me and that usually satisifies her. She now has a Sorcerers Apprentice Mickey that she calls "Wizard Mick" but he gets to live on MY bed. She is FUNNY I tell you!!
Ok, that is all,
Rachel
It's been a rough day. Plain and simple.
First of all, it's hotter than Hades here. Heat index was WAY over 100 today and we spent as little time outside as possible. No walk, no exercise for me.
Her appointments went well. The clinic was VERY busy. The busiest I've ever seen it in the lobby (standing room only). They did get us in pretty quickly, though. Then we just waited for Dr. Wolff. Her labs look pretty good. White blood cells are low but everything else is looking ok. So as long as she doesn't get a fever, we're still good.
Had to run through some rigamarole trying to get her Accutane prescription renewed. Still haven't filled it yet but I should be able to do that tomorrow.
We left the clinic with JUST enough time to wait for the shuttle, jet over to the proton center, and go right into radiation. Second day running on time. We're going to get spoiled! And after today, her time bumps back to before 1 PM! Yay! That will mean (hopefully) earlier time slots and less time NPO.
We came back to the RMH and she has been watching movies most of the afternoon. She got a great care package today from Aunt Kimmie with some new horse figurines to play with and some new videos so she's in 7th heaven at the moment. Didn't eat much (one corn dog bite and some chocolate milk...that's it!) but she had a poopie. Second day in a row for that!
Now to the tough stuff. I got onto the MD Anderson website last night to check some reports. One of the great things about MDA is that all of her medical reports get posted online and we have access to it. We also have all her appointments and can cancel, reschedule, and request appointments as well as contact anyone on her medical team. It's a really great website. Anyway, I knew that Dr. Wolff had been able to compare the post-surgery (May 29th) MRI with the MDA (July 14th) MRI (finally) and had taken it to the tumor board on Monday. Low and behold, he had posted a report.
And I quote: "The images from May 29th and July 14th were compared and reviewed....Some of the tumor lesions which had been left behind after the surgery became smaller during that time but there were new contrast enhancing lesions and leptomeningeal disease which appears to be new. This has to be judged as a mixed response-progression."
So what that means in lay-person terms is that while it looks like some of the tumor left over from surgery actually got smaller (yay) there are new tumors/lesions forming and the cancer has most definitely spread to the spinal fluid (NOT yay). Dr. Wolff and I had quite the talk about this today. He is still confident that the proton radiation will help shrink the current tumors; however, he realistically does not believe that radiation alone will be enough to fight this. We are looking at a cancer that grows very quickly, very aggressively, and is starting to spread into her spine. Not good. He mentioned a new drug (Velcade) that is used as a chemotherapy agent with many patients who have resistant tumors and this will probably be an option after radiation. We will continue to push the Accutane and possibly Topotecan (we can alternate the two every two weeks) during radiation and then revise the protocol following radiation to include a new mix of meds (some of the latest ones and maybe the Velcade).
It is so hard to hear this. It is so hard to know that while some of this treatment is working, it may not be enough. This is a very tough battle. I have always been a very positive person. Those of you who have known me a long time know that I pretty much try to see the glass as half-full. Always try to put a positive spin on things. And I am stubborn. I rarely give up (to a fault, I'm sure!). But every time we get a report back on an MRI, I keep getting knocked down a peg or two (or ten). Hope is there. Faith is there. But it is a weak candle that threatens to be dowsed at every turn. Here we are back in the middle of the hurricane and my tiki torch is getting drenched.
Please keep the prayer cycle flowing. Please keep the positive energy up (for me and for Roger...and for all of us). And just understand that I may not be the happiest person right now. I live life one day at a time. No faster....Perhaps I will feel differently tomorrow. Today it's a difficult day.
Thank goodness I have an appointment booked with Dr. Bitsko already for my return next week. And my "spa visit" is next Thursday. Much needed, don't you think?
On a funny note, I called the MCV clinic today to try to get Matt Bitsko's email address and check in with him on this issue (I seemed to misplace his email address) and the person that answered the phone said, "That person no longer works here." WHAT????? was the only thing I could say. Since when? What's going on? I didn't recognize the voice or name of the person answering the phone but he said someone from the office would call me back with more information. I just about went into a panic attack. Well, I decided to call Matt's voicemail (I did have that number) and just as I reached it, my call waiting beeped and it was the clinic calling me back. The same person was on the phone and apologized saying that he had gotten confused and had misspoken. Holey moley! Don't tell a woman in crisis that her therapist is no longer available!!! That's just WRONG!
So I guess that's really all I have to report. Sorry for the downer of a post. If you need a laugh, just go to yesterday's and look at the "funny Charlotte sayings" post.
I will add one more that I forgot: Another "latest thing" is that when we go somewhere, she always picks what animals/toys she will bring (usually Mickey but sometimes one other item) but she ALSO decides what I get to bring (mom, you get to bring the tiger and the snoopy!). Oh, gee, thanks. While I'm not already schlepping around the portable DVD player, your favorite books, diapers, and all the other accoutrements and necessities, I need my own stuffed animals, apparently. Ha! I have told her that I can only bring one animal with me and that usually satisifies her. She now has a Sorcerers Apprentice Mickey that she calls "Wizard Mick" but he gets to live on MY bed. She is FUNNY I tell you!!
Ok, that is all,
Rachel
Tuesday, July 21, 2009
This One Will Be Another Epic
Wow! Y'all had to wait nearly two full days for an update. Sorry it took so long. This one will be another epic. In Word it was 4 pages long!
Just got done trading harrassments with my wife so now I'll concentrate on the update.
To start off, Katie Udell down under, the t-shirt was made by the mother of one of our friends and Romp n' Roll regulars, Megan Blake (also, and most unfortunately, another Caringbridge member). I told her she could start a little cottage industry making those. By the way Megan's mom, any way we could get a new pink one in a 5-t for Charlotte (her's is getting a little grimy and she loves wearing it) and a matching one in Large for a woman here at The House? I'll GLADLY pay for both. I'm telling you, they would be lining up if they could get them out.
OK, wow, where to start. Yesterday, we sort of slept in and still noodled around part of the morning after we got up. I was going to try to go the big dog show that was going on at the Reliant Center just down the road. If figured CJ would like it and I knew I would totally love it. Especially if I got to see some of my favorite breeds up close.
Things were progressing nicely, we were getting dressed, snacking, reading, watching videos…Then I tried to get CJ to brush her teeth. Holy Mother of Rhodes! Saying she had a melt-down is like saying the QE2 is a big boat! And we had been doing great up till now.
Thus started about a two hour wrestling match during which I actually got her to promise that if I didn’t make her brush her teeth, then she had to take her vitamins. That lasted until she got a vitamin, which she used to LOVE, near her mouth. Melt-down Part Deux! Then it just dissolved into crying and screaming for no apparent reason. She told me that. I asked her why she was crying and she said she didn’t know but she certainly was shedding a river of tears. I tried to take her downstairs to play…no deal. When I finally did get her down to the lobby, she found occasion to cry at every turn. She wasn’t mad at me as she clung to me on the couch and didn’t want to let go.
I had spoken to a woman earlier about bringing her daughter with us and “carpooling” to the dog show (her daughter was to undergo brain surgery on Monday-today) but I wasn’t sure we’d even get out the door the way things were going.
When it got to be now or never time, Charlotte settled down and told me she still wanted to go to the dog show so we packed up and headed out. I wasn’t feeling very optimistic that CJ would last very long but one cute thing she did was leave Mickey on the bed saying that Mickey was a mouse and we were going to a dog show. Then I suggested we take Rompy and she thought that was mildly amusing.
From here out, she was an angel. Guess she just had to get it out of her system. She sat in the stroller and actually wanted to be where Calle and her mom were and paid attention to the dogs we were viewing. She really like the obstacle course where the dogs jump steeples, go in and out of slaloms, and zoom through tunnels.
We saw dogs of every shape and size including a great dane that seriously considered devouring Rompy and I got to see some of the most beautiful animals I have ever seen in my life. Alaskan huskies, bull mastiffs (one was 225lbs!), and the biggie, Bernese mountain dogs! Ah, yes. Go here and feast your eyes. http://www.google.com/search?q=bernese+mountain+dog&rls=com.microsoft:en-us&ie=UTF-8&oe=UTF-8&startIndex=&startPage=1
I didn’t get to see any Irish wolfhounds which are the other favorite of mine but there we lots of Bernies to behold. There were booths with the various breed rescue organizations and I saw the beagle booth but they only had one very old beagle that wasn’t very representative of the breed. Seemed kind of strange. I saw no other beagles the whole time we were there. Beagles and beagle mixes are just about the most common kind of shelter dog (at least around Virginia) and they make awesome pets. We’ve rescued all of our animals and totally recommend everyone do the same. I love looking at the purebreds but in the end, a shelter dog is a better choice for us.
So, back to the story, after a bit, Charlotte actually got out of the stroller and walked quite a while. We then decided the kids had seen enough and we headed back. It was a very nice event and the fact that it was 5 minutes from The House was bonus.
Later that night we went to the airport to pick up the Beazleys and relinquish the truck. It was coming up on 9:30pm by the time we picked them up and started back and Charlotte zonked on the way. In the confusion of the load-out at The House, I left my cell phone in the truck! Talk about fortuitous circumstances, I didn’t have either of their numbers memorized and almost panicked BUT, it just so happens that I had started compiling a list of our Houston contacts “just in case.” I was actually going to leave the Beazleys numbers off because, hey, they’re already programmed into our phones…Good thing I ignored that impulse. They just happened to stop off at a nearby drugstore and were still close so it wasn’t a big deal to swing back around.
Silly me. Lucky me!
Now to today (which by now is yesterday!).
This morning I woke up at 3am wide awake and it took a long time to wind down. Then as I was dozing back off at about 4, Charlotte decided to wake up. And I mean with vigor! She started talking and singing loudly, very clearly and very wide awake, and as soon as she realized I was awake, she just HAD to be in my bed. So over she came. Fortunately, she fell back asleep sometime around 6 (not sure because I dozed too) and slept in until almost 10!
She had about as lazy a day as ever while I puttered around doing laundry (did the sheets, pillowcases, etc…as well), playing online and cleaning the room. I figured we need to straighten things up and clean for when CJ’s counts plummet which they’re supposed to. Back to germophobe 101.
One of the better events of the day, as usual, was poop. Three sizable poops to be exact and every time, she turned into a different Charlotte, a little bit happier each time. Quite honestly, I can’t say where it all came from. It didn’t seem she had eaten enough to account for all of it but I’ll take it.
Another thing she’s been doing is taking my running shoes (it HAS to be the running shoes) and pulling out the shoelaces. She plays around with it for a while and then re-laces the shoes, CJ style. This activity has taken up HOURS of her time the past week. It’s good for her fine motor skills, keeps her in one place, I don’t mind wearing one shoe at a time around the lobby.
The one not so good development I’ve noticed is that she has gotten stiffer in her legs and although I’ve been stretching and massaging them, she needs a real PT/massage therapist to work on her. I’ll check into that tomorrow.
Speaking of tomorrow…The past 3-4 days have been days I'll never forget for as long as I live. I didn't think I could bond with Charlotte any more than we already had but especially today, it has been filling me up. We’ve been doing very little, actually, but the whole “vibe” today has been next to magical. Just little things like honking noses, following each other aimlessly around the lobby, her telling me over and over, the subplots in her Dora and Blue's Clues videos, etc…
There's a certain bitter-sweet quality to it and the last part of the movie "A.I. Artificial Intelligence" keeps intruding into my thoughts, the part where the androids bring the “mother” back to life for one day so the “son” can see her again and have that one perfect day and, of course, nobody in the audience wants it to end.
These have been her last few "good" days before starting up the proton radiation/chemo and I can’t help but dread the inevitable downward spiral (which, by the way, is becoming her favorite shape. How deep is that?) waiting for us as treatment, and the family fun side effects, begin to take their toll. I’m so appreciative of having these special days with Charlotte. I’m sorry Rachel wasn’t here for them since she will be coming back after the treatments begin and will have to deal with the “sunburn,” the chemo, the oh-so-fun temozolomide (there are chocolate bars in the bin in the fridge) pretty much as soon as she steps off the plane.
I just want to hold her and kiss her all the time (I think she’s getting irritated with the kissing part). It’s 1:30am and I don’t want to go to sleep, even though we have to get up super early to eat something before she goes NPO at 5:30am, because she’s over there less than three feet away from me sleeping like a little angel and I can’t get enough of her.
Fortunately, there will be support here for us during the most trying times as Grandpa and Grandma Bonita are headed this way and the New Mexico contingent will be here the 8th of August. We are also developing quite the Houston based network of people who know people following Charlotte’s progress.
The letters and packages are starting to come in. Thanks to all for those.
Now for something COMPLETELY different! I NEVER do these sorts of things on Facebook (surveys, quizzes, junk like that, especially where you’re supposed to tag people to do the same quiz or whatever). I really LOATH doing those, but one finally caught my interest. It’s the “put your ipod on shuffle and make a list of the first 15 songs that come up” game. Now, I had seen this before and I was like, “Whatever.” But local Richmond musician, Desiree Roots did it and sent her list to me. Her list was so cool, I figured she'd appreciate mine. I didn’t “tag” anyone or anything like that. I just put there for her and all to see. And it came out very cool! Here’s what came up…
1) Bills, Bills, Bills - Jonathan Coulton
2) London Bridge Is Falling Down - Romp n' Roll training songs
3) Union House Branch - Allison Krauss & Union Station
4) Digging In The Dirt (Live Version) - Peter Gabriel
5) Southern Soldier Boy - Southern Horizon Civil War Band
6) Simplicate - Upper Left Trio
7) On Your Way Down - Little Feat
8) Happy Trails - Veggie Tales
9) Hold On - Yes
10) Bangs - They Might Be Giants
11) Story Of Little Boy - Tommy Emmanuel (story, not a song)
12) At The Still Point - The Story
13) A Token Of My Extreme - Frank Zappa
14) In A Silent Way (DJ Cam Remix) - Miles Davis
15) Come Over To My House And Play - Veggie Tales
16) Speak Low - Dianne Reeves (bonus due to 11 not being an actual song)
So we step into the next part of the journey in just a few hours. I can't tell you how much we appreciate all the thoughts, prayers, beams of gold and silver light, etc...sent our way. We certainly don't feel alone.
Just got done trading harrassments with my wife so now I'll concentrate on the update.
To start off, Katie Udell down under, the t-shirt was made by the mother of one of our friends and Romp n' Roll regulars, Megan Blake (also, and most unfortunately, another Caringbridge member). I told her she could start a little cottage industry making those. By the way Megan's mom, any way we could get a new pink one in a 5-t for Charlotte (her's is getting a little grimy and she loves wearing it) and a matching one in Large for a woman here at The House? I'll GLADLY pay for both. I'm telling you, they would be lining up if they could get them out.
OK, wow, where to start. Yesterday, we sort of slept in and still noodled around part of the morning after we got up. I was going to try to go the big dog show that was going on at the Reliant Center just down the road. If figured CJ would like it and I knew I would totally love it. Especially if I got to see some of my favorite breeds up close.
Things were progressing nicely, we were getting dressed, snacking, reading, watching videos…Then I tried to get CJ to brush her teeth. Holy Mother of Rhodes! Saying she had a melt-down is like saying the QE2 is a big boat! And we had been doing great up till now.
Thus started about a two hour wrestling match during which I actually got her to promise that if I didn’t make her brush her teeth, then she had to take her vitamins. That lasted until she got a vitamin, which she used to LOVE, near her mouth. Melt-down Part Deux! Then it just dissolved into crying and screaming for no apparent reason. She told me that. I asked her why she was crying and she said she didn’t know but she certainly was shedding a river of tears. I tried to take her downstairs to play…no deal. When I finally did get her down to the lobby, she found occasion to cry at every turn. She wasn’t mad at me as she clung to me on the couch and didn’t want to let go.
I had spoken to a woman earlier about bringing her daughter with us and “carpooling” to the dog show (her daughter was to undergo brain surgery on Monday-today) but I wasn’t sure we’d even get out the door the way things were going.
When it got to be now or never time, Charlotte settled down and told me she still wanted to go to the dog show so we packed up and headed out. I wasn’t feeling very optimistic that CJ would last very long but one cute thing she did was leave Mickey on the bed saying that Mickey was a mouse and we were going to a dog show. Then I suggested we take Rompy and she thought that was mildly amusing.
From here out, she was an angel. Guess she just had to get it out of her system. She sat in the stroller and actually wanted to be where Calle and her mom were and paid attention to the dogs we were viewing. She really like the obstacle course where the dogs jump steeples, go in and out of slaloms, and zoom through tunnels.
We saw dogs of every shape and size including a great dane that seriously considered devouring Rompy and I got to see some of the most beautiful animals I have ever seen in my life. Alaskan huskies, bull mastiffs (one was 225lbs!), and the biggie, Bernese mountain dogs! Ah, yes. Go here and feast your eyes. http://www.google.com/search?q=bernese+mountain+dog&rls=com.microsoft:en-us&ie=UTF-8&oe=UTF-8&startIndex=&startPage=1
I didn’t get to see any Irish wolfhounds which are the other favorite of mine but there we lots of Bernies to behold. There were booths with the various breed rescue organizations and I saw the beagle booth but they only had one very old beagle that wasn’t very representative of the breed. Seemed kind of strange. I saw no other beagles the whole time we were there. Beagles and beagle mixes are just about the most common kind of shelter dog (at least around Virginia) and they make awesome pets. We’ve rescued all of our animals and totally recommend everyone do the same. I love looking at the purebreds but in the end, a shelter dog is a better choice for us.
So, back to the story, after a bit, Charlotte actually got out of the stroller and walked quite a while. We then decided the kids had seen enough and we headed back. It was a very nice event and the fact that it was 5 minutes from The House was bonus.
Later that night we went to the airport to pick up the Beazleys and relinquish the truck. It was coming up on 9:30pm by the time we picked them up and started back and Charlotte zonked on the way. In the confusion of the load-out at The House, I left my cell phone in the truck! Talk about fortuitous circumstances, I didn’t have either of their numbers memorized and almost panicked BUT, it just so happens that I had started compiling a list of our Houston contacts “just in case.” I was actually going to leave the Beazleys numbers off because, hey, they’re already programmed into our phones…Good thing I ignored that impulse. They just happened to stop off at a nearby drugstore and were still close so it wasn’t a big deal to swing back around.
Silly me. Lucky me!
Now to today (which by now is yesterday!).
This morning I woke up at 3am wide awake and it took a long time to wind down. Then as I was dozing back off at about 4, Charlotte decided to wake up. And I mean with vigor! She started talking and singing loudly, very clearly and very wide awake, and as soon as she realized I was awake, she just HAD to be in my bed. So over she came. Fortunately, she fell back asleep sometime around 6 (not sure because I dozed too) and slept in until almost 10!
She had about as lazy a day as ever while I puttered around doing laundry (did the sheets, pillowcases, etc…as well), playing online and cleaning the room. I figured we need to straighten things up and clean for when CJ’s counts plummet which they’re supposed to. Back to germophobe 101.
One of the better events of the day, as usual, was poop. Three sizable poops to be exact and every time, she turned into a different Charlotte, a little bit happier each time. Quite honestly, I can’t say where it all came from. It didn’t seem she had eaten enough to account for all of it but I’ll take it.
Another thing she’s been doing is taking my running shoes (it HAS to be the running shoes) and pulling out the shoelaces. She plays around with it for a while and then re-laces the shoes, CJ style. This activity has taken up HOURS of her time the past week. It’s good for her fine motor skills, keeps her in one place, I don’t mind wearing one shoe at a time around the lobby.
The one not so good development I’ve noticed is that she has gotten stiffer in her legs and although I’ve been stretching and massaging them, she needs a real PT/massage therapist to work on her. I’ll check into that tomorrow.
Speaking of tomorrow…The past 3-4 days have been days I'll never forget for as long as I live. I didn't think I could bond with Charlotte any more than we already had but especially today, it has been filling me up. We’ve been doing very little, actually, but the whole “vibe” today has been next to magical. Just little things like honking noses, following each other aimlessly around the lobby, her telling me over and over, the subplots in her Dora and Blue's Clues videos, etc…
There's a certain bitter-sweet quality to it and the last part of the movie "A.I. Artificial Intelligence" keeps intruding into my thoughts, the part where the androids bring the “mother” back to life for one day so the “son” can see her again and have that one perfect day and, of course, nobody in the audience wants it to end.
These have been her last few "good" days before starting up the proton radiation/chemo and I can’t help but dread the inevitable downward spiral (which, by the way, is becoming her favorite shape. How deep is that?) waiting for us as treatment, and the family fun side effects, begin to take their toll. I’m so appreciative of having these special days with Charlotte. I’m sorry Rachel wasn’t here for them since she will be coming back after the treatments begin and will have to deal with the “sunburn,” the chemo, the oh-so-fun temozolomide (there are chocolate bars in the bin in the fridge) pretty much as soon as she steps off the plane.
I just want to hold her and kiss her all the time (I think she’s getting irritated with the kissing part). It’s 1:30am and I don’t want to go to sleep, even though we have to get up super early to eat something before she goes NPO at 5:30am, because she’s over there less than three feet away from me sleeping like a little angel and I can’t get enough of her.
Fortunately, there will be support here for us during the most trying times as Grandpa and Grandma Bonita are headed this way and the New Mexico contingent will be here the 8th of August. We are also developing quite the Houston based network of people who know people following Charlotte’s progress.
The letters and packages are starting to come in. Thanks to all for those.
Now for something COMPLETELY different! I NEVER do these sorts of things on Facebook (surveys, quizzes, junk like that, especially where you’re supposed to tag people to do the same quiz or whatever). I really LOATH doing those, but one finally caught my interest. It’s the “put your ipod on shuffle and make a list of the first 15 songs that come up” game. Now, I had seen this before and I was like, “Whatever.” But local Richmond musician, Desiree Roots did it and sent her list to me. Her list was so cool, I figured she'd appreciate mine. I didn’t “tag” anyone or anything like that. I just put there for her and all to see. And it came out very cool! Here’s what came up…
1) Bills, Bills, Bills - Jonathan Coulton
2) London Bridge Is Falling Down - Romp n' Roll training songs
3) Union House Branch - Allison Krauss & Union Station
4) Digging In The Dirt (Live Version) - Peter Gabriel
5) Southern Soldier Boy - Southern Horizon Civil War Band
6) Simplicate - Upper Left Trio
7) On Your Way Down - Little Feat
8) Happy Trails - Veggie Tales
9) Hold On - Yes
10) Bangs - They Might Be Giants
11) Story Of Little Boy - Tommy Emmanuel (story, not a song)
12) At The Still Point - The Story
13) A Token Of My Extreme - Frank Zappa
14) In A Silent Way (DJ Cam Remix) - Miles Davis
15) Come Over To My House And Play - Veggie Tales
16) Speak Low - Dianne Reeves (bonus due to 11 not being an actual song)
So we step into the next part of the journey in just a few hours. I can't tell you how much we appreciate all the thoughts, prayers, beams of gold and silver light, etc...sent our way. We certainly don't feel alone.
Wednesday, May 27, 2009
Surgery
Charlotte went in to surgery at 10:08am.
We woke up at about 4:30am and got to the hospital before 6:00. The valet parking didn't open until 6:00 so we had to wait. In that time I could have parked in the garage, got validated parking, and been upstairs getting ready for the big day. But then I heard the road construction made it very difficult to manuver so it looks like we went the proper route after all.
As we got all ready for the MRI, Charlotte started getting antsy so we watched Caillou videos on the iPhone. Paid for itself several times over as far as I'm concerned.
When we went down to the MRI room, we weren't there long before the anesthesiolgist (woah! There's a $10 word!) showed up to administer the happy juice. At first she didn't want to let them at her central line so I distracted her with pics on the phone (more added value) while they hooked her up. In about 30 seconds, she got this very silly grin on her face and thought everything was extremely amusing!
Then they picked her up, took her in to the MRI room and she was gone. It all happened so fast I didn't get to give her a kiss but it was ok. Rompy, Mickey, and the hand-made pink and purple blanket (I can't remember who made it for her off the top of my head) are with her. Dug the Up! dog waits patiently with us here in the [SQUIRREL!!] 7th floor lounge.
By the way, CJ was very happy to tell everyone that she has TWO dogs now!
So after they took CJ, I found myself without a lot of direction since they sort of mentioned where I should go to wait only in passing and I was a little distracted. So I hung out there for a little while and talked to a young man and his mother waiting for an MRI. Very nice with the "Yes sir" and the "No, sir" and all that. Even with the tiff we're having with Caringbridge, I told them about CB and Hopecam.org. Turns out he is one of triplet boys and has a younger sister in Romp n' Roll's age range. So of course I gave mom my card. (Always workin' it)
So I eventually made my way down to the ground floor waiting room, got a bite to eat and settled in to wait. I promptly fell asleep. My buzzing phone woke me up - Auntie 'Retta was calling trying to find me. Ends up She, Grandpa, and Juanita Bonita were looking for me all over. They were just a floor above in the 1st floor waiting room.
I'm spoiled with the 7th floor so the other waiting rooms just wouldn't do. I pulled Loretta up with me and started the sign-in process early. I got the sign-in sheet filled out and saw plenty of folks who remember Charlotte including Heather from Child Life. They seem to be all ready for us.
CJ will be in room 614 of the PICU which means for now, kids can't visit and we have to space out the number of adults but after a day or so, we certainly want people to stop by. It can do nothing but good for her.
So now we're camped out, waiting for word. They are supposed to call anytime now with an update.
"Charlotte's Devon" is headed over to have lunch with us and Dean from Glen Allen Golf just called to let us know the total from the fun-raiser was $140! Thanks to all who came out.
Just heard from Nurse Janice in the OR. Charlotte is still in surgery and things are going as expected. If she's still in surgery at 2:00 they'll call with another update.
More details as they come up.
Latest update:
They were finishing up and might be done within a half an hour. Charlotte has been stable the entire time and everything looks good so far.
I don't think I'll be making it to Romp n' Roll this afternoon. Anyone in my Wednesday classes will be in the very capable hands of Miss Samantha. (She's been doing so well covering my classes lately, I think I might be losing some of my kiddies to her classes!)
Thanks to Devon for a very tasty lunch.
Stay tuned...
She is out of surgery and looking GREAT!
She is still a little loopy from the anesthesia but that's mostly making her act very funny more than anything else. She is gradually getting tubes, a-lines, ivs, etc. taken out. She is talking and moving all her limbs. Looks a little pale and will probably have a small transfusion but overall we can't complain.
Dr. Tye thinks he got a LOT of tumor. No word on percentage but he is reasonably confident that he got a very large amount. He said the pathway was really clear and he was able to get quite a bit. She will probably have an MRI tomorrow or Friday and they are going to aim for both head and spine to get a full picture.
Her tumor samples have been sent off to the MCV lab as well as a lot that will be going to Houston by Friday.
We have a nice room in the PICU...actually one of the ones we had last time with lots of space and a great, sunny view of the capitol and the governor's mansion.
I think that's all we have to report for now.
Thanks for all the prayers and support.
Rachel and Roger
We woke up at about 4:30am and got to the hospital before 6:00. The valet parking didn't open until 6:00 so we had to wait. In that time I could have parked in the garage, got validated parking, and been upstairs getting ready for the big day. But then I heard the road construction made it very difficult to manuver so it looks like we went the proper route after all.
As we got all ready for the MRI, Charlotte started getting antsy so we watched Caillou videos on the iPhone. Paid for itself several times over as far as I'm concerned.
When we went down to the MRI room, we weren't there long before the anesthesiolgist (woah! There's a $10 word!) showed up to administer the happy juice. At first she didn't want to let them at her central line so I distracted her with pics on the phone (more added value) while they hooked her up. In about 30 seconds, she got this very silly grin on her face and thought everything was extremely amusing!
Then they picked her up, took her in to the MRI room and she was gone. It all happened so fast I didn't get to give her a kiss but it was ok. Rompy, Mickey, and the hand-made pink and purple blanket (I can't remember who made it for her off the top of my head) are with her. Dug the Up! dog waits patiently with us here in the [SQUIRREL!!] 7th floor lounge.
By the way, CJ was very happy to tell everyone that she has TWO dogs now!
So after they took CJ, I found myself without a lot of direction since they sort of mentioned where I should go to wait only in passing and I was a little distracted. So I hung out there for a little while and talked to a young man and his mother waiting for an MRI. Very nice with the "Yes sir" and the "No, sir" and all that. Even with the tiff we're having with Caringbridge, I told them about CB and Hopecam.org. Turns out he is one of triplet boys and has a younger sister in Romp n' Roll's age range. So of course I gave mom my card. (Always workin' it)
So I eventually made my way down to the ground floor waiting room, got a bite to eat and settled in to wait. I promptly fell asleep. My buzzing phone woke me up - Auntie 'Retta was calling trying to find me. Ends up She, Grandpa, and Juanita Bonita were looking for me all over. They were just a floor above in the 1st floor waiting room.
I'm spoiled with the 7th floor so the other waiting rooms just wouldn't do. I pulled Loretta up with me and started the sign-in process early. I got the sign-in sheet filled out and saw plenty of folks who remember Charlotte including Heather from Child Life. They seem to be all ready for us.
CJ will be in room 614 of the PICU which means for now, kids can't visit and we have to space out the number of adults but after a day or so, we certainly want people to stop by. It can do nothing but good for her.
So now we're camped out, waiting for word. They are supposed to call anytime now with an update.
"Charlotte's Devon" is headed over to have lunch with us and Dean from Glen Allen Golf just called to let us know the total from the fun-raiser was $140! Thanks to all who came out.
Just heard from Nurse Janice in the OR. Charlotte is still in surgery and things are going as expected. If she's still in surgery at 2:00 they'll call with another update.
More details as they come up.
Latest update:
They were finishing up and might be done within a half an hour. Charlotte has been stable the entire time and everything looks good so far.
I don't think I'll be making it to Romp n' Roll this afternoon. Anyone in my Wednesday classes will be in the very capable hands of Miss Samantha. (She's been doing so well covering my classes lately, I think I might be losing some of my kiddies to her classes!)
Thanks to Devon for a very tasty lunch.
Stay tuned...
She is out of surgery and looking GREAT!
She is still a little loopy from the anesthesia but that's mostly making her act very funny more than anything else. She is gradually getting tubes, a-lines, ivs, etc. taken out. She is talking and moving all her limbs. Looks a little pale and will probably have a small transfusion but overall we can't complain.
Dr. Tye thinks he got a LOT of tumor. No word on percentage but he is reasonably confident that he got a very large amount. He said the pathway was really clear and he was able to get quite a bit. She will probably have an MRI tomorrow or Friday and they are going to aim for both head and spine to get a full picture.
Her tumor samples have been sent off to the MCV lab as well as a lot that will be going to Houston by Friday.
We have a nice room in the PICU...actually one of the ones we had last time with lots of space and a great, sunny view of the capitol and the governor's mansion.
I think that's all we have to report for now.
Thanks for all the prayers and support.
Rachel and Roger
Monday, May 25, 2009
Good Couple of Days
It's been a busy, productive and all around good couple of days.
The return trip home was easy and breezy. Another Houston Ground Angel (his name was Ty) shuttled us to the airport. He had his own interesting story and was quite the conversationalist on the quick trip to the airport.
Charlotte continued to get SO much attention during and after the flights. We had one good samaritan trade seats with us when we realized that our seats on the Atlanta-Richmond flight were not together. The flight attendants (yet again) spoiled her with cookies and other goodies. It was also interesting that since she was wearing her minnie mouse hat and carrying Mickey, everyone from the Atlanta flight and in the Richmond airport thought we were coming straight from Disney World....not yet....not yet...
We pretty much collapsed Saturday night and then actually made it to church on Sunday. It was so good to see our friends and Charlotte had a great time in the nursery (as usual). The rest of our day was spent working on domestic stuff. Roger and Charlotte took a shopping trip to Kohl's where they got some great deals on new running shoes for Roger and a few spring/summer outfits for the princess. She should be well outfitted for summer now, I think.
I stayed at home and proceeded to tackle the house room by room. It had become quite the disaster area recently with all the coming and going and none of the "domesticity" that we used to enjoy. Finally, two trash bags , two loads of laundry, lots of recycling, and a whole pile for the Goodwill store later, we have some restored order in the house.
To add to it, we are doing a bit of upgrading in the living room. Our friend Meredith came over last week and gave some advice on rearranging some furniniture to better suit our growing little girl. The table is on backorder, but once it arrives we will have a new workspace for her art projects as well as some storage ideas for the wall. Thanks for the advice, Meredith! If you ever need design advice, you must give her a call. She is practical and stylish all at the same time!
While giving shout-outs to Meredith, I must also thank her husband Mitch and the other folks who helped move our new piano. My other dear friend Katherine gave us a lovely upright piano. It is currently at Kolbey's house and I'm sure will be a treasured tool for our home. We have had an electronic piano since we got married so this is our first "real" piano. Can't wait till Charlotte gets to try some piano lessons!
At the moment, Charlotte is at a playdate with her Montessori friends.
All seems set for Charlotte's surgery first thing Wednesday morning. We will also be conferring with her physicians regarding the consultation we received in Houston. Roger's dad and Juanita should be here sometime tomorrow.
Many have asked if we need anything in the upcoming few days/weeks/months. We will be sure to update you if there are any tangible needs. I have a feeling that most domestic stuff will be covered by the near constant lineup of family and friends who plan to be here in the coming weeks. We are also VERY set in the toy, book, sticker, stuffed animal department. Your generosity over the past few months have left us wanting for NOTHING so please resist the urge to buy the princess any gifts. (I know how tempting it is...she is such a cutie). I will certainly be taking some of her favorite comfort items and activities to the hospital during her recovery and I think she will be set. I hope that this request does not make me sound ungrateful. We are MORE than thankful for all the gifts which have come our way. I just want everyone to know that right now, your prayers and postive vibes are probably the most important gift that you can send our way.
We are at a point where the freezer is less than half-full so if someone feels the need to make us a meal (especially one that is freeze-able), we will happily accept. We are not in desperate need but I know that sometimes folks find it an easy way to help out. It sure does come in handy when we are trying to keep everything together. We just had a tortilla bake last night that was YUMMY (thanks Miss Parker!). Headed over to Granny Dot's for dinner tonight as well.
I guess that's all for now. Hope everyone has enjoyed their long weekend.
Rachel
The return trip home was easy and breezy. Another Houston Ground Angel (his name was Ty) shuttled us to the airport. He had his own interesting story and was quite the conversationalist on the quick trip to the airport.
Charlotte continued to get SO much attention during and after the flights. We had one good samaritan trade seats with us when we realized that our seats on the Atlanta-Richmond flight were not together. The flight attendants (yet again) spoiled her with cookies and other goodies. It was also interesting that since she was wearing her minnie mouse hat and carrying Mickey, everyone from the Atlanta flight and in the Richmond airport thought we were coming straight from Disney World....not yet....not yet...
We pretty much collapsed Saturday night and then actually made it to church on Sunday. It was so good to see our friends and Charlotte had a great time in the nursery (as usual). The rest of our day was spent working on domestic stuff. Roger and Charlotte took a shopping trip to Kohl's where they got some great deals on new running shoes for Roger and a few spring/summer outfits for the princess. She should be well outfitted for summer now, I think.
I stayed at home and proceeded to tackle the house room by room. It had become quite the disaster area recently with all the coming and going and none of the "domesticity" that we used to enjoy. Finally, two trash bags , two loads of laundry, lots of recycling, and a whole pile for the Goodwill store later, we have some restored order in the house.
To add to it, we are doing a bit of upgrading in the living room. Our friend Meredith came over last week and gave some advice on rearranging some furniniture to better suit our growing little girl. The table is on backorder, but once it arrives we will have a new workspace for her art projects as well as some storage ideas for the wall. Thanks for the advice, Meredith! If you ever need design advice, you must give her a call. She is practical and stylish all at the same time!
While giving shout-outs to Meredith, I must also thank her husband Mitch and the other folks who helped move our new piano. My other dear friend Katherine gave us a lovely upright piano. It is currently at Kolbey's house and I'm sure will be a treasured tool for our home. We have had an electronic piano since we got married so this is our first "real" piano. Can't wait till Charlotte gets to try some piano lessons!
At the moment, Charlotte is at a playdate with her Montessori friends.
All seems set for Charlotte's surgery first thing Wednesday morning. We will also be conferring with her physicians regarding the consultation we received in Houston. Roger's dad and Juanita should be here sometime tomorrow.
Many have asked if we need anything in the upcoming few days/weeks/months. We will be sure to update you if there are any tangible needs. I have a feeling that most domestic stuff will be covered by the near constant lineup of family and friends who plan to be here in the coming weeks. We are also VERY set in the toy, book, sticker, stuffed animal department. Your generosity over the past few months have left us wanting for NOTHING so please resist the urge to buy the princess any gifts. (I know how tempting it is...she is such a cutie). I will certainly be taking some of her favorite comfort items and activities to the hospital during her recovery and I think she will be set. I hope that this request does not make me sound ungrateful. We are MORE than thankful for all the gifts which have come our way. I just want everyone to know that right now, your prayers and postive vibes are probably the most important gift that you can send our way.
We are at a point where the freezer is less than half-full so if someone feels the need to make us a meal (especially one that is freeze-able), we will happily accept. We are not in desperate need but I know that sometimes folks find it an easy way to help out. It sure does come in handy when we are trying to keep everything together. We just had a tortilla bake last night that was YUMMY (thanks Miss Parker!). Headed over to Granny Dot's for dinner tonight as well.
I guess that's all for now. Hope everyone has enjoyed their long weekend.
Rachel
Saturday, May 9, 2009
Another Busy Day
Another busy day. Charlotte and I are enjoying a quiet evening at home watching a movie (Cars) so I thought I'd use the time for an update.
First of all, we got a substitute Mickey and I understand more are on the way (that way we'll NEVER run out!!). Knowing our luck, by the time the new ones arrive, she will have a new "obsession".
Also, Roger now has the webcam with Skype hooked up so Charlotte can talk/meet with her preschool friends. If anyone else has Skype connections, please let us know. We would love to schedule some "Charlotte talk times" with you.
Thank you to everyone who has written or who we have seen in the last few days and offered their thoughts and concerns. We really appreciate it. As we have said to many people who have asked about Charlotte, she is doing great. Really, reallly great. That is part of what makes this so difficult. To look at her, you would still never really know (except for the bald head and the sometimes awkward motor stuff) that she had this tumor growing inside her. As usual, Roger and I are suffering more than her through a lot of this.
After some consideration, Roger and I have decided that we do not need to pursue a second opinion on the surgery. We trust Dr. Tye and his team and know that this is a necessary next step regardless of how we proceed with the oncology side of things. We will be talking with his office first thing on Monday to determine when exactly surgery will happen. It may be soon.
We still have some questions about the trip to Houston and MD Anderson. Mainly the questions revolve around "how" not "if". Mainly, we are concerned that the timeline the doctor has given us may involve travel sooner than we think Charlotte will be ready post-surgery so we just have some more questions to ask. Our initial thought is that we will take Charlotte to Tennesse to meet up with Roger's dad and from there we will take his RV to Houston. This will allow us to keep Charlotte as comfortable as possible on what will be a very long road trip. Others have mentioned Angel Flights and we are investigating that as well. There is a question about whether air travel will be a possibility so soon after brain surgery.
Anyway, we will report more as we know details. My mom is still planning to leave on Wednesday (the 13th) so we will let you know if we need help in the coming weeks.
Today was a busy day with the Chic-Fil-A Cow Drop. The weather cooperated and it was good to see many romp n' roll friends as well as meet some (hopefully) new customers. Roger is up in Maryland performing with Uptown Vocal Jazz Quartet at the Mainstay. He should be back late tonight.
I'm looking forward to a relaxing evening and day tomorrow. Happy Mother's Day to all the moms out there (especially mine!)
Reminder: Open Gym at Romp n' Roll tomorrow from 10 AM-4 PM for all those dads that need to give mom a break...
Enjoy the rest of your weekend.
Charlotte has asked to type a message so I'm going to let her type here:
098iooooooooooooooooooo]]]\]]]==]]]\]][[[[[[[[[[[][[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[-[[[[[[[[[[[[[[[[[[[[[[[[[[[p
First of all, we got a substitute Mickey and I understand more are on the way (that way we'll NEVER run out!!). Knowing our luck, by the time the new ones arrive, she will have a new "obsession".
Also, Roger now has the webcam with Skype hooked up so Charlotte can talk/meet with her preschool friends. If anyone else has Skype connections, please let us know. We would love to schedule some "Charlotte talk times" with you.
Thank you to everyone who has written or who we have seen in the last few days and offered their thoughts and concerns. We really appreciate it. As we have said to many people who have asked about Charlotte, she is doing great. Really, reallly great. That is part of what makes this so difficult. To look at her, you would still never really know (except for the bald head and the sometimes awkward motor stuff) that she had this tumor growing inside her. As usual, Roger and I are suffering more than her through a lot of this.
After some consideration, Roger and I have decided that we do not need to pursue a second opinion on the surgery. We trust Dr. Tye and his team and know that this is a necessary next step regardless of how we proceed with the oncology side of things. We will be talking with his office first thing on Monday to determine when exactly surgery will happen. It may be soon.
We still have some questions about the trip to Houston and MD Anderson. Mainly the questions revolve around "how" not "if". Mainly, we are concerned that the timeline the doctor has given us may involve travel sooner than we think Charlotte will be ready post-surgery so we just have some more questions to ask. Our initial thought is that we will take Charlotte to Tennesse to meet up with Roger's dad and from there we will take his RV to Houston. This will allow us to keep Charlotte as comfortable as possible on what will be a very long road trip. Others have mentioned Angel Flights and we are investigating that as well. There is a question about whether air travel will be a possibility so soon after brain surgery.
Anyway, we will report more as we know details. My mom is still planning to leave on Wednesday (the 13th) so we will let you know if we need help in the coming weeks.
Today was a busy day with the Chic-Fil-A Cow Drop. The weather cooperated and it was good to see many romp n' roll friends as well as meet some (hopefully) new customers. Roger is up in Maryland performing with Uptown Vocal Jazz Quartet at the Mainstay. He should be back late tonight.
I'm looking forward to a relaxing evening and day tomorrow. Happy Mother's Day to all the moms out there (especially mine!)
Reminder: Open Gym at Romp n' Roll tomorrow from 10 AM-4 PM for all those dads that need to give mom a break...
Enjoy the rest of your weekend.
Charlotte has asked to type a message so I'm going to let her type here:
098iooooooooooooooooooo]]]\]]]==]]]\]][[[[[[[[[[[][[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[-[[[[[[[[[[[[[[[[[[[[[[[[[[[p
Friday, May 8, 2009
A Lot to Consider
Hi all,
Feeling very beat at the moment. There are a lot of questions and we have some things to consider.
The good news is that her blood counts look GREAT. Everything has come up where it needs to be.
Dr. Tye does want to attempt another surgery. Given that her brain has had time to heal since the last surgery, he should have a better view of the tumor and will hopefully be able to get as much as possible. The odds of defeating these types of tumors are greatly increased when they are smaller. Obviously, the risks of surgery (coma, seizure, blood loss, weakness or paralysis, etc.) are there and were discussed. We also talked about the option of getting a second (or third) opinion and we got names of colleagues/peers at UVA, DC Children's and Johns Hopkins with whom we could speak if we want to go that route. If we don't feel the need for a second opinion, she could have surgery as early as May 13th (next week). Roger and I are currently weighing these options.
On the oncology side of things, Dr. Khan met with his former supervisor and mentor at MD Anderson Clinic in Houston, TX. They have a new method for treating PNET that would probably benefit Charlotte. What they do is take samples of the tumor and treat it in the laboratory with multiple agents to determine the "best" method of treatment for her specific type of tumor. Instead of using a standard protocol, she would get a customized treatment just for her tumor. This tends to work better in cases where the tumors are "ill-behaved". Here is how it would work: Once Charlotte was well enough to travel (but before we would need to begin chemo/radiation), we would travel to Houston and they would see Charlotte as well as get a set of slides with the tumor on them. That part of the process would take just a day. We would return home and within about two weeks, they would develop a treatment protocol for Charlotte which would involve some combination of radiation and chemo. They would share this treatment plan with Dr. Khan and we would proceed from there (with her continuing to get her treatment at MCV).
Meanwhile, in all of this we "lost" Mickey Mouse. We accidentally left him in the lobby of the clinic and by the time we realized he was missing, he was gone. Kinda interesting because he had a name badge on him with her name on it. Anyway, we have already received a "loaner" Mickey and are probably getting another one very soon thanks to some Disney connections (thanks Annette!). Just one more thing to slam us down while we're already on the ground. Roger's pretty upset about it.
Anyway, hope everyone is enjoying the weather. It is GORGEOUS. Roger and I have to get to work and we will update everyone as we know more.
Rachel
We are strongly leaning on this option. We just have to consider timing, logistics, and the reality of leaving our business for about a week's time.
Right now we have a lot to think about and we let everyone know that we would consider our options and let them know on Monday.
Feeling very beat at the moment. There are a lot of questions and we have some things to consider.
The good news is that her blood counts look GREAT. Everything has come up where it needs to be.
Dr. Tye does want to attempt another surgery. Given that her brain has had time to heal since the last surgery, he should have a better view of the tumor and will hopefully be able to get as much as possible. The odds of defeating these types of tumors are greatly increased when they are smaller. Obviously, the risks of surgery (coma, seizure, blood loss, weakness or paralysis, etc.) are there and were discussed. We also talked about the option of getting a second (or third) opinion and we got names of colleagues/peers at UVA, DC Children's and Johns Hopkins with whom we could speak if we want to go that route. If we don't feel the need for a second opinion, she could have surgery as early as May 13th (next week). Roger and I are currently weighing these options.
On the oncology side of things, Dr. Khan met with his former supervisor and mentor at MD Anderson Clinic in Houston, TX. They have a new method for treating PNET that would probably benefit Charlotte. What they do is take samples of the tumor and treat it in the laboratory with multiple agents to determine the "best" method of treatment for her specific type of tumor. Instead of using a standard protocol, she would get a customized treatment just for her tumor. This tends to work better in cases where the tumors are "ill-behaved". Here is how it would work: Once Charlotte was well enough to travel (but before we would need to begin chemo/radiation), we would travel to Houston and they would see Charlotte as well as get a set of slides with the tumor on them. That part of the process would take just a day. We would return home and within about two weeks, they would develop a treatment protocol for Charlotte which would involve some combination of radiation and chemo. They would share this treatment plan with Dr. Khan and we would proceed from there (with her continuing to get her treatment at MCV).
Meanwhile, in all of this we "lost" Mickey Mouse. We accidentally left him in the lobby of the clinic and by the time we realized he was missing, he was gone. Kinda interesting because he had a name badge on him with her name on it. Anyway, we have already received a "loaner" Mickey and are probably getting another one very soon thanks to some Disney connections (thanks Annette!). Just one more thing to slam us down while we're already on the ground. Roger's pretty upset about it.
Anyway, hope everyone is enjoying the weather. It is GORGEOUS. Roger and I have to get to work and we will update everyone as we know more.
Rachel
We are strongly leaning on this option. We just have to consider timing, logistics, and the reality of leaving our business for about a week's time.
Right now we have a lot to think about and we let everyone know that we would consider our options and let them know on Monday.
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