Showing posts with label Houston Ground Angel. Show all posts
Showing posts with label Houston Ground Angel. Show all posts
Sunday, August 16, 2009
Sgt. Mommy, reporting for duty
Sgt. Mommy, reporting for duty. I got in Saturday after working some fabulously fun classes at Romp n' Roll in the morning. The flights went smoothly and my Ground Angel was right there to pick me up as I came out of the terminal. I arrived at RMH and while Roger had noticed me, Charlotte didn't. She was sitting on one of the couches in her adorable pink sundress and new cowgirl hat. I sidled right up and sat down without saying anything. It still took her a minute to realize who was sitting next to her. When she did, she smiled at me and handed me the sugar cookie she had been eating, saying, "You can have this, Mommy!" SWEET! Soon after that, Merrilee arrived to babysit and Roger and I went out. We didn't do much of anything. We just went down to one of the shopping areas near the medical center, sat at a diner with some tea and drank and talked. Even though we get to talk on the phone almost every night while we're apart, I have found that this time together on our Saturday "layovers" has been a good way for us to decompress and process our emotions and events during the time apart. I have said it before but I will say it again: I feel so lucky that Roger and I have a very strong marriage because I don't think we would have gotten this far without each other (and our love for each other). It also helps that I think we have approached this crisis in our lives in relatively the same way. We're not always in the same place at the same time, but I think most of the time we can really see and understand where the other person is coming from. That helps a lot.After our chat, we went over to the Chocolate Bar again (that place is DIVINE). I had a chocolate covered graham cracker and Roger had a chocolate covered Nutter Butter. They also have chocolate covered twinkies, chocolate covered cereals (like cheerios and golden grahams) and chocolate covered fruit of all kinds. It's paradise!! We relieved our sitter (thanks again, Beasley family!) and put Charlotte to bed. That didn't really happen till after midnight. In fact, I think I was asleep before she was (just one more book, Daddy!!!) but we all slept in this morning. I made breakfast downstairs and then we headed out on our adventure. Today we decided to experiment with the metrorail. We walked to our closest station (about a mile from RMH) and then rode the line towards downtown. It's just one line (north and south) but it intersects with bus stops and other public transportation to create this pretty complex and efficient system. We were able to see many aspects of the downtown area on our ride to the end. Then we exited the train and went exploring. Thanks to the iphone (and a really cool app called Around Me) we found a park near Minute Maid Stadium (where the Astros play) called Discovery Green. According to Wikipedia, the park was built last year and has a water feature (fountains the kids can play in) a playground, a small pond with radio controlled sailboats, and a cafe. It was very hot so the fountains seemed nice but, of course, Charlotte couldn't get soaked because of her central line. She and daddy waded in just a little bit (enough to get their feet wet) and then we went to the cafe for lunch. The lunch was on the pricey side but very yummy. They had a Kobe Beef Hot Dog which, if you know anything about Kobe Beef is (as Roger says) kind of like making a Lobster Hot Dog. Seems kinda weird to put meat that good into a hot dog...but whatever...We were excited to see that the restaurant used compostable and biodegradable plastic containers to serve the food. Very environmentally conscious of them!I had a salad, Charlotte had a milkshake, and we shared some sweet potato fries. Then it was about time to head back to the metrorail. We exited around the zoo and took a different route back to RMH. Then Roger showered, packed, and we got ready to say our goodbyes. Overall, Charlotte is doing great. I really can't expect too much better. She is very pale and it is obvious that she will need the transfusion we have scheduled for tomorrow. But she is eating, pooping, and she is the most social around other kids and adults that I have seen her in weeks. We met a girl named Rachel on the playground today and she thought it was the funniest thing. She said, "Mommy, she has YOUR name!" She's the second "Rachel" we've met (besides me) since we've been at RMH so it kind of rocks her world.I don't remember if we've given this "shout-out" yet, but a HUGE thank you to Good Shepherd Lutheran Church in Morristown, TN. This is Roger's dad's home church (The "Bonitas" to those of you who follow this blog regularly) and they held a pancake breakfast in Charlotte's honor that has raised what should be almost $3000 once all funds have been matched by Thrivent, etc. Much thanks and many blessings!It is very nice to think that we are in the home stretch of radiation. I am optimistic that we will work out all our insurance troubles this week and that we can weather these next few weeks with minimal trouble. Then it will be home to hopefully a less stressful regimen. I know we won't be done with treatment, but I am very hopeful that the worst will be behind us. Let's start getting that Disney trip planned, eh?
Monday, August 10, 2009
Transition Update
No, your eyes are not deceiving you. The time-date stamp is correct. It's 1 AM...
My flight out of Atlanta was delayed (I guess due to that line of thunderstorms crossing the US) so we left Atlanta about the time I should have been landing in Richmond and landed in Richmond at midnight. And now I need to wind down before I can go to sleep.
Roger's and my "crossover" was very good. Aunt B, Aunt Lynn, and Uncle Terry arrived early Saturday afternoon and we made a grocery run and got some lunch while we waited for Roger to arrive. Charlotte was very amusing. She walks around with her baseball cap slung so low over her face I don't know how she can walk without bumping into anything. But somehow she manages to hide her eyes AND not walk into anything. It's funny.
When daddy arrived, she steamrolled to the front of RMH and attacked him with gusto. She missed her daddy! We did some visiting and then I swept Roger off on our date. To the Melting Pot!!! We hadn't been to the Melting Pot in a long time (it's definitely a special occasion thing for us) and I like it because the "slow food" thing and intimate atmosphere really makes for a good place for conversation. We talked a lot about all kinds of things...but mostly Charlotte. It was a great meal and a great date.
We relieved our babysitter around midnight only to find Charlotte still awake (!!!) [We're going to have to rethink hiring that babysitter again...HA HA!!] but she fell asleep soon after we got back. We all slept in on Sunday and then met up with the rest of the family for brunch at Jason's Deli. When the NM crew arrived for lunch, they were all wearing pink and purple with coordinating pink/purple baseball caps that had "CHARLOTTE" embroidered on them. Too cute! Charlotte was wearing her brand new pink BALD CHICKS ROCK shirt (thanks Megan!) and her light purple skirt and purple Tink cap so I think the folks at Jason's Deli thought we were holding the inaugural meeting of the Charlotte Fan Club. It was great.
After lunch, we went to the Gymboree next to Jason's and the Aunties proceeded to spoil Charlotte by buying her an adorable outfit complete with accessories. We also found a very cute cowgirl hat that actually met with the Diva's approval. Pics to follow, I'm sure. The day was topped off with a trip to the chocolate store across the street. Then we headed back to RMH to hang out until my Ground Angel came to sweep me away to the airport.
So I'm back in Richmond. I have work to do and mail to go through.
But first I must sleep...g'night.
Update:
(Just read Rachel's post AFTER I posted this one. We keep doing that! :-) )
Pretty good couple of days. Aunt B, Aunt Lynn, and Uncle Terry came in from New Mexico on Friday and were promptly pressed into babysitting service. Daddy came in Friday night and Mommy surprised him with the Melting Pot! It was very nice to just sit and talk for a while. We talked about Romp n’ Roll, interesting things we had heard on the news, and, of course, Charlotte. Lots and lots of Charlotte.
Charlotte has been doing pretty well even if her head now has a Marine, “jarhead” haircut with a soul patch on the back. I’ve noticed her attitude seems much more “Charlotte-y.” Not always good (she gets very irritated by the smaller kids who always want to be around her!) but much more normal.
We went out to Jason’s Deli for lunch yesterday and that was just awesome. Mommy and Daddy absolutely LOVE that place. Then we went to the Gymboree children’s clothing store next door and it was hard to keep Aunt B and Aunt Lynnard from buying out the place! They got all kinds of cool stuff for CJ and most of it was on sale, which is always good. One of the women working there was great with Charlotte and even took down the caringbridge information so we guess we’ll see her here eventually.
Next we went to the chocolaty goodness store across the way and as we were walking in the door, Charlotte started our family mantra, “Chocolate makes everything better!” Needless to say we were very full by the end of THAT excursion.
We went back to The House to get Mommy ready for the trip back to Richmond and, again, Charlotte was beautifully Charlotte. She loves her new lacing animals but it wasn’t long before she asked to play with Daddy’s shoe laces! We found out later that Daddy is actually known as “The man with one shoe” among the kids at The House!
Mommy got off to the airport fine and CJ actually threw her kisses without prompting as she got into the Houston Ground Angels’ volunteer’s car (thank you again, HGA!). That's kind of a big deal. Her flight from Atlanta to Richmond got delayed so she didn’t get home until way late! But home she got. (huh?)
Daddy pulled out the guitar after Mommy left and entertained the kiddies for a bit including a set of twins who are new to The House. Only one is in treatment. Cute as all get out! We also met another new family had just who moved in. The daughter has a rare (it’s all rare) type of bone cancer in her hip. Charlotte really seemed to warm up to her so maybe that’s a relationship worth cultivating. She had a spot on her lung as well but it’s now gone and she’s cleared for proton! Yeah for good news!
Daddy has a lot to say about recent developments in his head and he’ll pen that epic when he gets it mostly straightened out but for now, this will have to do. Call it the “Transition Update.”
Happy Monday!
My flight out of Atlanta was delayed (I guess due to that line of thunderstorms crossing the US) so we left Atlanta about the time I should have been landing in Richmond and landed in Richmond at midnight. And now I need to wind down before I can go to sleep.
Roger's and my "crossover" was very good. Aunt B, Aunt Lynn, and Uncle Terry arrived early Saturday afternoon and we made a grocery run and got some lunch while we waited for Roger to arrive. Charlotte was very amusing. She walks around with her baseball cap slung so low over her face I don't know how she can walk without bumping into anything. But somehow she manages to hide her eyes AND not walk into anything. It's funny.
When daddy arrived, she steamrolled to the front of RMH and attacked him with gusto. She missed her daddy! We did some visiting and then I swept Roger off on our date. To the Melting Pot!!! We hadn't been to the Melting Pot in a long time (it's definitely a special occasion thing for us) and I like it because the "slow food" thing and intimate atmosphere really makes for a good place for conversation. We talked a lot about all kinds of things...but mostly Charlotte. It was a great meal and a great date.
We relieved our babysitter around midnight only to find Charlotte still awake (!!!) [We're going to have to rethink hiring that babysitter again...HA HA!!] but she fell asleep soon after we got back. We all slept in on Sunday and then met up with the rest of the family for brunch at Jason's Deli. When the NM crew arrived for lunch, they were all wearing pink and purple with coordinating pink/purple baseball caps that had "CHARLOTTE" embroidered on them. Too cute! Charlotte was wearing her brand new pink BALD CHICKS ROCK shirt (thanks Megan!) and her light purple skirt and purple Tink cap so I think the folks at Jason's Deli thought we were holding the inaugural meeting of the Charlotte Fan Club. It was great.
After lunch, we went to the Gymboree next to Jason's and the Aunties proceeded to spoil Charlotte by buying her an adorable outfit complete with accessories. We also found a very cute cowgirl hat that actually met with the Diva's approval. Pics to follow, I'm sure. The day was topped off with a trip to the chocolate store across the street. Then we headed back to RMH to hang out until my Ground Angel came to sweep me away to the airport.
So I'm back in Richmond. I have work to do and mail to go through.
But first I must sleep...g'night.
Update:
(Just read Rachel's post AFTER I posted this one. We keep doing that! :-) )
Pretty good couple of days. Aunt B, Aunt Lynn, and Uncle Terry came in from New Mexico on Friday and were promptly pressed into babysitting service. Daddy came in Friday night and Mommy surprised him with the Melting Pot! It was very nice to just sit and talk for a while. We talked about Romp n’ Roll, interesting things we had heard on the news, and, of course, Charlotte. Lots and lots of Charlotte.
Charlotte has been doing pretty well even if her head now has a Marine, “jarhead” haircut with a soul patch on the back. I’ve noticed her attitude seems much more “Charlotte-y.” Not always good (she gets very irritated by the smaller kids who always want to be around her!) but much more normal.
We went out to Jason’s Deli for lunch yesterday and that was just awesome. Mommy and Daddy absolutely LOVE that place. Then we went to the Gymboree children’s clothing store next door and it was hard to keep Aunt B and Aunt Lynnard from buying out the place! They got all kinds of cool stuff for CJ and most of it was on sale, which is always good. One of the women working there was great with Charlotte and even took down the caringbridge information so we guess we’ll see her here eventually.
Next we went to the chocolaty goodness store across the way and as we were walking in the door, Charlotte started our family mantra, “Chocolate makes everything better!” Needless to say we were very full by the end of THAT excursion.
We went back to The House to get Mommy ready for the trip back to Richmond and, again, Charlotte was beautifully Charlotte. She loves her new lacing animals but it wasn’t long before she asked to play with Daddy’s shoe laces! We found out later that Daddy is actually known as “The man with one shoe” among the kids at The House!
Mommy got off to the airport fine and CJ actually threw her kisses without prompting as she got into the Houston Ground Angels’ volunteer’s car (thank you again, HGA!). That's kind of a big deal. Her flight from Atlanta to Richmond got delayed so she didn’t get home until way late! But home she got. (huh?)
Daddy pulled out the guitar after Mommy left and entertained the kiddies for a bit including a set of twins who are new to The House. Only one is in treatment. Cute as all get out! We also met another new family had just who moved in. The daughter has a rare (it’s all rare) type of bone cancer in her hip. Charlotte really seemed to warm up to her so maybe that’s a relationship worth cultivating. She had a spot on her lung as well but it’s now gone and she’s cleared for proton! Yeah for good news!
Daddy has a lot to say about recent developments in his head and he’ll pen that epic when he gets it mostly straightened out but for now, this will have to do. Call it the “Transition Update.”
Happy Monday!
Sunday, July 26, 2009
Rachel is in Houston Too!
My turn!
The trip out to Houston was mostly uneventful. The flight coming into Richmond was late so I made my connection in Atlanta (to Houston) with only minutes to spare. Fortunately, I only had to walk about 8 gates to make the connection. I also upgraded to business class last minute (yee haw) so it was easy on/off the plane.
On the second leg of the flight, I sat next to a mom with a 3 1/2 week old (!!!) and across the aisle from a couple with a 10-month old. If I didn't miss my daughter before, MAN!!! I was getting some serious Charlotte withdrawal so I thought the plane couldn't land fast enough.
My Houston Ground Angel was waiting for me when I got down to the terminal and in just a few minutes, I was "home sweet home" at RMH. Roger and I left Charlotte with her grandparents and headed out for a last-minute date. we ended up just going out for some good ol' Texas BBQ and talking. These are the best dates, in my opinion, because we rarely get a chance to really just talk with each other without tons of distractions. Plus: major bonus when the restaurant served Fat Tire beer. We hardly ever can get that in VA. It's a Colorado favorite!!
We came home late and relieved our wonderful babysitters then settled down for a quiet evening together. It was SO nice to have all three of us under one roof...if only for an evening. We slept in late (if you consider 8 AM late...it is in our house) and then got up for breakfast. Roger made eggs and Charlotte didn't eat much. She explored the play area and walked around downstairs.
Then we decided to take advantage of the car we have for the weekend and headed over to the Galleria. This is a mall to behold! Quite the experience and a nice, cool indoor place to window shop. We did make a few purchases. I had a Godiva gift card burning a hole in my pocket so we bought some chocolate covered strawberries and a few yummy truffles. Charlotte did a good number on the strawberries. Yay calories! We also stopped in Borders and Charlotte found a Melissa and Doug horse playset with 12 different 3" felt horse figurines. We got this for her and she has spent the evening playing with them. She decided that I got to sleep with the "grown up horses" and she is going to sleep with the "baby horses" (the horses are all the same size but somehow she decided that some are grown ups while others are babies. Whatever!
So back to the mall...we made our way down to the ice skating rink where we met up for lunch with my friend Cara. Cara and I went to high school together and we have kept in touch loosely through the years. The "keeping in touch" part has been made immensely easier lately with Facebook so when we found out that she would be spending her family vacation in Houston about the same time that we would be here, we decided to try to meet up. She got to meet Charlotte and we got to chat while eating at a Mexican restaurant by the ice rink. I think Charlotte's favorite part of the day was watching the kids ice skate. We might make a return trip to the Galleria just to do that again.
Time was getting short so we made our way back to RMH so Roger could pack last minute essentials and get ready to meet his ride (another Houston Ground Angel...actually the same one that brought me in last night.) We said our goodbyes and as far as I know, Roger is making his way home.
Charlotte spent the rest of the afternoon in the playroom with me, Granpda, and Grandma Bonita. She spent a LOT of time resting on the giant stuffed cow (it's practically lifesize and very comfy). A youth group from a local church came in to make dinner (burgers, dogs, and salad and YUMMY brownies and cookies). Charlotte's dinner consisted of a hot dog bun, about a dozen pickle chips, and a brownie and a cookie. So nutritious but at least she's eating. We said goodnight to the grandparents and headed up to our room to settle in for the night. Now she's watching Diego and resting in bed. What a day!
Tomorrow will be full of follow up appointments, her next radiation treatment, and (of course) a day full of NPO. Let's see what I can get into her by 6 AM. Hopefully, she and I will find a rhythm soon enough.
I almost forgot to mention that we actually had "coordinated outfits" today. Miss Devon (or Charlotte's Devon as she is sometimes called) sent us a great care package with a purple Dora shirt for Charlotte (that says Princess Power), a pink Peace Frogs shirt for me that says "Faith, Hope, and Love" and a big pink shirt for daddy that says "Tough Guys Wear Pink". We couldn't resist the opportunity and decided to all wear our Devon shirts today. You can see our full ensemble in the picture.
So that's all I have to report.
The trip out to Houston was mostly uneventful. The flight coming into Richmond was late so I made my connection in Atlanta (to Houston) with only minutes to spare. Fortunately, I only had to walk about 8 gates to make the connection. I also upgraded to business class last minute (yee haw) so it was easy on/off the plane.
On the second leg of the flight, I sat next to a mom with a 3 1/2 week old (!!!) and across the aisle from a couple with a 10-month old. If I didn't miss my daughter before, MAN!!! I was getting some serious Charlotte withdrawal so I thought the plane couldn't land fast enough.
My Houston Ground Angel was waiting for me when I got down to the terminal and in just a few minutes, I was "home sweet home" at RMH. Roger and I left Charlotte with her grandparents and headed out for a last-minute date. we ended up just going out for some good ol' Texas BBQ and talking. These are the best dates, in my opinion, because we rarely get a chance to really just talk with each other without tons of distractions. Plus: major bonus when the restaurant served Fat Tire beer. We hardly ever can get that in VA. It's a Colorado favorite!!
We came home late and relieved our wonderful babysitters then settled down for a quiet evening together. It was SO nice to have all three of us under one roof...if only for an evening. We slept in late (if you consider 8 AM late...it is in our house) and then got up for breakfast. Roger made eggs and Charlotte didn't eat much. She explored the play area and walked around downstairs.
Then we decided to take advantage of the car we have for the weekend and headed over to the Galleria. This is a mall to behold! Quite the experience and a nice, cool indoor place to window shop. We did make a few purchases. I had a Godiva gift card burning a hole in my pocket so we bought some chocolate covered strawberries and a few yummy truffles. Charlotte did a good number on the strawberries. Yay calories! We also stopped in Borders and Charlotte found a Melissa and Doug horse playset with 12 different 3" felt horse figurines. We got this for her and she has spent the evening playing with them. She decided that I got to sleep with the "grown up horses" and she is going to sleep with the "baby horses" (the horses are all the same size but somehow she decided that some are grown ups while others are babies. Whatever!
So back to the mall...we made our way down to the ice skating rink where we met up for lunch with my friend Cara. Cara and I went to high school together and we have kept in touch loosely through the years. The "keeping in touch" part has been made immensely easier lately with Facebook so when we found out that she would be spending her family vacation in Houston about the same time that we would be here, we decided to try to meet up. She got to meet Charlotte and we got to chat while eating at a Mexican restaurant by the ice rink. I think Charlotte's favorite part of the day was watching the kids ice skate. We might make a return trip to the Galleria just to do that again.
Time was getting short so we made our way back to RMH so Roger could pack last minute essentials and get ready to meet his ride (another Houston Ground Angel...actually the same one that brought me in last night.) We said our goodbyes and as far as I know, Roger is making his way home.
Charlotte spent the rest of the afternoon in the playroom with me, Granpda, and Grandma Bonita. She spent a LOT of time resting on the giant stuffed cow (it's practically lifesize and very comfy). A youth group from a local church came in to make dinner (burgers, dogs, and salad and YUMMY brownies and cookies). Charlotte's dinner consisted of a hot dog bun, about a dozen pickle chips, and a brownie and a cookie. So nutritious but at least she's eating. We said goodnight to the grandparents and headed up to our room to settle in for the night. Now she's watching Diego and resting in bed. What a day!
Tomorrow will be full of follow up appointments, her next radiation treatment, and (of course) a day full of NPO. Let's see what I can get into her by 6 AM. Hopefully, she and I will find a rhythm soon enough.
I almost forgot to mention that we actually had "coordinated outfits" today. Miss Devon (or Charlotte's Devon as she is sometimes called) sent us a great care package with a purple Dora shirt for Charlotte (that says Princess Power), a pink Peace Frogs shirt for me that says "Faith, Hope, and Love" and a big pink shirt for daddy that says "Tough Guys Wear Pink". We couldn't resist the opportunity and decided to all wear our Devon shirts today. You can see our full ensemble in the picture.
So that's all I have to report.
Monday, July 13, 2009
Interesting Day Yesterday
I never heard from the media folks at the Houston Astros so we decided to just go and buy tickets. They have a cool deal for the summer that children get in free. We drove down to Minute Maid Park and found a tremendous parking spot right across from the Left Field entrance. Cancer really, really sucks but some of the percs are very nice, like handicapped parking!
We got in an got settled in our very nice seats. The weather is extremely hot and humid and we were "angsting" about where we would sit so the sun wouldn't be shining right on Charlotte and where we could retreat from the heat if it got too overwhelming. We held up the line at the box office trying to get just the right seat. Turns out we didn't need to worry; the roof was closed and the weather inside was fine.
All morning long, CJ had been kind of lethargic and I was starting to get worried that maybe she was getting sick or something. The "or something" part was actually really worrying me. It's been a brutal couple of weeks within the Caringbridge community and several of the children whose stories I've been following have passed away. Whenever I hear of a child passing, I go back in the journals and read several of the posts leading up to the passing annpouncement to see what happened and how things progressed. Yesterday that practice kind of haunted me as Charlotte's energy level kept going down and I got more and more worried about what might be happening to make it happen.
At the Astros game, we went into the store to get her a hat or jersey (pink, of course) but she would have none of it. She just wanted to be held and bury her head in my shoulder.
She had no fever, she wasn't feeling sick, she wasn't in pain, and she was eating (certainly helped make a dent in a bag of popcorn and some ice cream). She even wanted to walk after a bit (bored I guess) and we walked about 3/4 of the way around the stadium before she petered out and made me carry her.
So I was at a loss to figure out what was wrong and the fear was threatening to take over.
We lasted until the 7th inning stretch and then headed home. Charlotte conked out on the way back to the house (the only other warning sign) and I took a nap too. When we got up we headed over to our hosts, the Beasley's, home for dinner. Charlotte was STILL lethargic and I was wondering if we were going to have to take her to the emergency room. The thing was, other than the low energy and the nap, nothing else stood out.
So my habit of checking out the lead-up posts on all those other Caringbridge sites was backfiring on me because I was starting to go through worst-case scenarios.
Then, all of a sudden, she seemed to brighten up remarkably and told me, "Daddy, I pooped!"
That was it. Rachel remembered her mother saying something about that kind of pattern before and we also realized that it had been multiple days since her last BM. It all made sense.
So it all comes back to poop. The theme of our lives.
After that, Charlotte was like a different kid. She was sitting on the couch, entertaining herself like usual, singing to Mickey, rading stories to herself, watching the occasional video...
We headed back to the other house (where their daughter lives) and tried to get to bed at a decent time because we had early Monday appointments. Of course CJ was now wired and we had to set her up with books and videos while we rested. Fortunately, she took my word for it that we needed to go to sleep so she let me clear things off the bed and pull up the covers.
This morning we headed out early and got the MD Anderson in plenty of time for our whirlwind day of waiting.
I keep trying to put my "day of fear" into some kind of perspective and I just can't right now. It was mostly irrational fear fed by looking at other kids' sites, most of whom had conditions not related to the PNET in Charlotte's head. I need to digest it a while longer. I also don't think I'm describing it adequately. I don't even think Rachel has a clear idea of how I was feeling. Guess she will now, sort of.
The best news of the day is that we called Ronald McDonald House and they have room for us!!! We'll be heading over tonight to get settled in. SO that means we need to contact the Hoston Ground Angels to see if they can give Rachel a ride to the airport tomorrow on very short notice.
I'm on it!
Update:
Welcome to our new home away from home. We have been admitted to the Ronald McDonald House and can be here for the next 45 days if needed. At only $25 a day, you can't beat the accommodations! It is fabulous with a play area, lots of space for cooking, we have our own room with 2 beds and a bathroom, and even the "house dog"...a labradoodle named Mogie.
We can receive mail while we are here. The address is:
1907 Holcombe Blvd
Room 27
Houston, TX 77030
The morning was pretty much spent with paperwork and an anethesia assessment and now we are just resting before our trip over to the proton center at 3 PM. Charlotte had to be NPO at 5 this morning because of the anesthesia they will use and, of course, she did not get up at 5 AM to eat so we are all trying not to eat in front of her. But mommy and daddy have to keep their strength up so we are sneaking bits of cracker and granola bar here and there. She is holding up pretty well. We will have to FEAST tonight.
I'm very glad that we have the housing settled before I have to leave tomorrow morning. I am not looking forward to leaving the 2 most important people in my life for almost 2 weeks but we do what we gotta do!
I think we're off to play and explore so we'll talk to everyone soon.
Rachel
Update:
What a long day. A good day. A productive day. But a L-O-N-G day.
As mentioned earlier, we have found our lodgings here at the Ronald McDonald House. It's such a great place for families in our situation. We are about a mile from the main MD Anderson campus and the shuttle can take us pretty much anywhere we need to go. It even goes to the grocery store once a day. They have full kitchen facilities for us to use and lots of community items like seasonings, eggs, condiments, etc. so that cooking is pretty easy and doesn't always have to be ramen noodles!
Plus, almost every night, a community group comes in to provide dinner and sometimes even additional activities. Southwest Airlines is bringing a group tomorrow and rumor has it that their events are not to be missed. Some of their volunteers are already here starting to roast the brisket for tomorrow night (can you tell we're in Texas?).
After we left RMH (as we will probably refer to it in future posts), we took the shuttle over to the proton center which is pretty much on the other side of the hospital area. It's about a 20-30 minute ride by shuttle. Charlotte was pretty quiet and mellow most of the day. She hadn't had anything to eat since last night and they'd only allowed her about 4 oz of juice after 10:30. Amazingly, she only told daddy one time that she was hungry. When he told her she couldn't eat until after she saw the doctor, she never asked again. What a trooper. I, on the other hand, was famished!! But didn't want to eat in front of my NPO child.
We got to the proton center and had very little wait. We immediately met a string of professionals including our Nurse Practitioner, the oncology fellow, and then Dr. Mahajan who is her radiation oncologist. We discussed the treatment plan, they went over all the possible side effects, and then we discussed the fact that she would be having whole brain and spine radiation after all. Roger and I were confused for a little while, mainly because Dr. Wolff and Dr. Khan had maintained that proton therapy was not necessary for whole head and spine radiation and that we were going to focus on the tumor area. Turns out that's not exactly the case and in fact, she stands to benefit more from whole head/spine radiation due to the location of her tumor and should receive less effects from the radiation on areas such as her thyroid gland and other vital organs by receiving the proton therapy.
After we met with the radiation oncologist, the anesthesiology crew came in. Dr. Porche is her primary anesthesiologist and she is such a sweetheart. She just swooped Charlotte up in her arms and began to sing to her and ooh and ahh over her. So nice! The nurse anesthetist (sp?) also informed us that while she was receiving proton therapy, they would change her dressing twice a week, do all the line flushes, and basically take care of anything else that needs to be done with her lines. Hooray.
Finally it was off to the simulation. Charlotte got to actually "administer" her own juice by starting the pump and pushing the syringe to flush the line. As tired as she was, she was out in no time. Then we got to meet with the research nurse to go over permissions for them to study Charlotte's blood and DNA as well as participate in a longitudinal data study for basically the rest of Charlotte's life to help them study long-term outcomes of proton therapy. This means that data such as hormone levels, cognitive tests, etc. will all be collected at regular intervals on her. Anything that will help kids down the road, that's what I say!
We also met the Child Life Specialist who told us about some upcoming kid's events and offered some ways that their services could be helpful.
Did I miss anyone? There were a lot of people to meet. Soon enough, Charlotte's procedure was finished and we went to meet her in recovery. It took her FOREVER to wake up but she finally roused (with some assistance from us) and we shuttled her back to RMH with some dinner. Roger took Merrilee's car (she had left it for us at the proton center) back to their home in Jersey Village and collected all of our belongings and made his way back to RMH all in one piece.
We must make yet another (although I'm sure it will not be final) note of thanks to the Beazley family for their most gracious hosptiality and help with this process. they have gone above and beyond and we are grateful to them as well as to Mitch and Meredith Hayes for making the connection.
So we are basically "moved in" and settled. Clothes are unpacked and put in dresser drawers. We have a moderate supply of groceries and snacks that will last until the next grocery trip. I have given Roger many final instructions and reminders on her appointments, etc. (I tend to be the "manager" of all that information. Surprised?). I am leaving early tomorrow morning and only taking my big purse/tote bag with me. No clothes (they can stay here for my return trip), no diaper bag (whoopee), no stroller. Just me, myself and I.
See many of y'all back in Richmond. I've got a lot of work ahead of me and Charlotte and Roger have quite the adventure ahead of them.
Rachel
We got in an got settled in our very nice seats. The weather is extremely hot and humid and we were "angsting" about where we would sit so the sun wouldn't be shining right on Charlotte and where we could retreat from the heat if it got too overwhelming. We held up the line at the box office trying to get just the right seat. Turns out we didn't need to worry; the roof was closed and the weather inside was fine.
All morning long, CJ had been kind of lethargic and I was starting to get worried that maybe she was getting sick or something. The "or something" part was actually really worrying me. It's been a brutal couple of weeks within the Caringbridge community and several of the children whose stories I've been following have passed away. Whenever I hear of a child passing, I go back in the journals and read several of the posts leading up to the passing annpouncement to see what happened and how things progressed. Yesterday that practice kind of haunted me as Charlotte's energy level kept going down and I got more and more worried about what might be happening to make it happen.
At the Astros game, we went into the store to get her a hat or jersey (pink, of course) but she would have none of it. She just wanted to be held and bury her head in my shoulder.
She had no fever, she wasn't feeling sick, she wasn't in pain, and she was eating (certainly helped make a dent in a bag of popcorn and some ice cream). She even wanted to walk after a bit (bored I guess) and we walked about 3/4 of the way around the stadium before she petered out and made me carry her.
So I was at a loss to figure out what was wrong and the fear was threatening to take over.
We lasted until the 7th inning stretch and then headed home. Charlotte conked out on the way back to the house (the only other warning sign) and I took a nap too. When we got up we headed over to our hosts, the Beasley's, home for dinner. Charlotte was STILL lethargic and I was wondering if we were going to have to take her to the emergency room. The thing was, other than the low energy and the nap, nothing else stood out.
So my habit of checking out the lead-up posts on all those other Caringbridge sites was backfiring on me because I was starting to go through worst-case scenarios.
Then, all of a sudden, she seemed to brighten up remarkably and told me, "Daddy, I pooped!"
That was it. Rachel remembered her mother saying something about that kind of pattern before and we also realized that it had been multiple days since her last BM. It all made sense.
So it all comes back to poop. The theme of our lives.
After that, Charlotte was like a different kid. She was sitting on the couch, entertaining herself like usual, singing to Mickey, rading stories to herself, watching the occasional video...
We headed back to the other house (where their daughter lives) and tried to get to bed at a decent time because we had early Monday appointments. Of course CJ was now wired and we had to set her up with books and videos while we rested. Fortunately, she took my word for it that we needed to go to sleep so she let me clear things off the bed and pull up the covers.
This morning we headed out early and got the MD Anderson in plenty of time for our whirlwind day of waiting.
I keep trying to put my "day of fear" into some kind of perspective and I just can't right now. It was mostly irrational fear fed by looking at other kids' sites, most of whom had conditions not related to the PNET in Charlotte's head. I need to digest it a while longer. I also don't think I'm describing it adequately. I don't even think Rachel has a clear idea of how I was feeling. Guess she will now, sort of.
The best news of the day is that we called Ronald McDonald House and they have room for us!!! We'll be heading over tonight to get settled in. SO that means we need to contact the Hoston Ground Angels to see if they can give Rachel a ride to the airport tomorrow on very short notice.
I'm on it!
Update:
Welcome to our new home away from home. We have been admitted to the Ronald McDonald House and can be here for the next 45 days if needed. At only $25 a day, you can't beat the accommodations! It is fabulous with a play area, lots of space for cooking, we have our own room with 2 beds and a bathroom, and even the "house dog"...a labradoodle named Mogie.
We can receive mail while we are here. The address is:
1907 Holcombe Blvd
Room 27
Houston, TX 77030
The morning was pretty much spent with paperwork and an anethesia assessment and now we are just resting before our trip over to the proton center at 3 PM. Charlotte had to be NPO at 5 this morning because of the anesthesia they will use and, of course, she did not get up at 5 AM to eat so we are all trying not to eat in front of her. But mommy and daddy have to keep their strength up so we are sneaking bits of cracker and granola bar here and there. She is holding up pretty well. We will have to FEAST tonight.
I'm very glad that we have the housing settled before I have to leave tomorrow morning. I am not looking forward to leaving the 2 most important people in my life for almost 2 weeks but we do what we gotta do!
I think we're off to play and explore so we'll talk to everyone soon.
Rachel
Update:
What a long day. A good day. A productive day. But a L-O-N-G day.
As mentioned earlier, we have found our lodgings here at the Ronald McDonald House. It's such a great place for families in our situation. We are about a mile from the main MD Anderson campus and the shuttle can take us pretty much anywhere we need to go. It even goes to the grocery store once a day. They have full kitchen facilities for us to use and lots of community items like seasonings, eggs, condiments, etc. so that cooking is pretty easy and doesn't always have to be ramen noodles!
Plus, almost every night, a community group comes in to provide dinner and sometimes even additional activities. Southwest Airlines is bringing a group tomorrow and rumor has it that their events are not to be missed. Some of their volunteers are already here starting to roast the brisket for tomorrow night (can you tell we're in Texas?).
After we left RMH (as we will probably refer to it in future posts), we took the shuttle over to the proton center which is pretty much on the other side of the hospital area. It's about a 20-30 minute ride by shuttle. Charlotte was pretty quiet and mellow most of the day. She hadn't had anything to eat since last night and they'd only allowed her about 4 oz of juice after 10:30. Amazingly, she only told daddy one time that she was hungry. When he told her she couldn't eat until after she saw the doctor, she never asked again. What a trooper. I, on the other hand, was famished!! But didn't want to eat in front of my NPO child.
We got to the proton center and had very little wait. We immediately met a string of professionals including our Nurse Practitioner, the oncology fellow, and then Dr. Mahajan who is her radiation oncologist. We discussed the treatment plan, they went over all the possible side effects, and then we discussed the fact that she would be having whole brain and spine radiation after all. Roger and I were confused for a little while, mainly because Dr. Wolff and Dr. Khan had maintained that proton therapy was not necessary for whole head and spine radiation and that we were going to focus on the tumor area. Turns out that's not exactly the case and in fact, she stands to benefit more from whole head/spine radiation due to the location of her tumor and should receive less effects from the radiation on areas such as her thyroid gland and other vital organs by receiving the proton therapy.
After we met with the radiation oncologist, the anesthesiology crew came in. Dr. Porche is her primary anesthesiologist and she is such a sweetheart. She just swooped Charlotte up in her arms and began to sing to her and ooh and ahh over her. So nice! The nurse anesthetist (sp?) also informed us that while she was receiving proton therapy, they would change her dressing twice a week, do all the line flushes, and basically take care of anything else that needs to be done with her lines. Hooray.
Finally it was off to the simulation. Charlotte got to actually "administer" her own juice by starting the pump and pushing the syringe to flush the line. As tired as she was, she was out in no time. Then we got to meet with the research nurse to go over permissions for them to study Charlotte's blood and DNA as well as participate in a longitudinal data study for basically the rest of Charlotte's life to help them study long-term outcomes of proton therapy. This means that data such as hormone levels, cognitive tests, etc. will all be collected at regular intervals on her. Anything that will help kids down the road, that's what I say!
We also met the Child Life Specialist who told us about some upcoming kid's events and offered some ways that their services could be helpful.
Did I miss anyone? There were a lot of people to meet. Soon enough, Charlotte's procedure was finished and we went to meet her in recovery. It took her FOREVER to wake up but she finally roused (with some assistance from us) and we shuttled her back to RMH with some dinner. Roger took Merrilee's car (she had left it for us at the proton center) back to their home in Jersey Village and collected all of our belongings and made his way back to RMH all in one piece.
We must make yet another (although I'm sure it will not be final) note of thanks to the Beazley family for their most gracious hosptiality and help with this process. they have gone above and beyond and we are grateful to them as well as to Mitch and Meredith Hayes for making the connection.
So we are basically "moved in" and settled. Clothes are unpacked and put in dresser drawers. We have a moderate supply of groceries and snacks that will last until the next grocery trip. I have given Roger many final instructions and reminders on her appointments, etc. (I tend to be the "manager" of all that information. Surprised?). I am leaving early tomorrow morning and only taking my big purse/tote bag with me. No clothes (they can stay here for my return trip), no diaper bag (whoopee), no stroller. Just me, myself and I.
See many of y'all back in Richmond. I've got a lot of work ahead of me and Charlotte and Roger have quite the adventure ahead of them.
Rachel
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!"
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
Thursday, May 21, 2009
We are Here in Houston
Well, here we are in Houston, TX.
The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!
Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.
I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.
When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!
We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.
Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.
So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:
I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....
I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)
So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.
When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.
I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.
In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)
ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.
I think that's all we have to report for now.
Rachel
The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!
Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.
I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.
When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!
We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.
Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.
So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:
I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....
I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)
So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.
When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.
I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.
In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)
ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.
I think that's all we have to report for now.
Rachel
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