FAQ about donations:

Thank you to everyone who has inquired about donations to CJSTUF and other donations in Charlotte's honor. There have been a number of questions so I am going to address them here:

1. To Whom Should I make a donation in Charlotte's honor?

There are a number of worthy causes that have benefitted us this year. Besides CJSTUF, donations can be made to Make-A-Wish Foundation, ASK Clinic at MCV, or Noah's Children. Other worthy causes not mentioned in the obituary include ReeseStrong, Connor's Heroes, Ronald McDonald House, and Caring Bridge.

2. How can I make a donation to CJSTUF (or any of these other organizations)?

You can bring your donation to the memorial service on Saturday. There will be a lockbox at the service and reception with the logos of all the organizations that have benefitted us (as well as CJSTUF). Donations can be accepted there. All cash donations will go to CJSTUF unless otherwise specified.

A donation link will be set up on the website soon (we are working on this). This will allow for online donations via PayPal. Other donations to CJSTUF can be sent to our home address: 9 Slash Ct, Ashland, VA 23005. Checks should be made out to Charlotte or to CJSTUF.

3. Are donations to CJSTUF tax-deductible?

While we are an officially incorporated organization, we do not yet have 501(c)3 status. Donations are NOT currently tax deductible; however, our board is pursuing tax-exempt status and we expect to have this before the end of 2010. We will definitely make sure everyone knows when we have tax-exempt status.

4. I work for a company or volunteer for an organization that raises money and/or matches funds for other organizations. We would like to help CJSTUF. How do we go about this?

We would love to work with you and your company/organziation. Most companies or other organizations require that a benefitting organization be tax-exempt or have tax-exempt status in order to qualify. CJSTUF is not going anywhere and we would be happy to work with you once we reach tax-exempt status! Just keep your eyes and ears open.

Thank you, again, for the momentum and energy and giving spirit that has been put forth in Charlotte's name. We are humbled and appreciative!

Rachel and Roger

DADDY'S HERE!!!(

DADDY'S HERE!!!(this is Roger)The trip out had minimal adventure although at one point, I was told by the Hertz Customer Service rep I couldn't get the rental car until 5:30am Sunday because my flight gets back in after the airport "closes."Fortunately, the people at the actual Hertz location in Hobby are better informed and they told me they have to wait until all flights are in and several come in after Midnight.So I got the car. That's about as exciting as it got except for the amazing scenery out the window. Some pics are on the "Roger Reynolds" Facebook site.I got to The House a little past 1am and Rachel was still up. Another sleepless night as I'm still fighting the gunk and coughing is the big pain.Charlotte had been in bed for quite a while so she was out. The unfortunate part was that she woke up about 5am asking for a book from Mommy. I went over and let her see me. She was kind of out of it so it took her a moment to figure out what was happening. Of course when she did, she held out her arms to give me a hug.Then the focus shifted quickly back to books. I put on a mask and gooped up with sanitizer trying to expose her to a few germs as possible while getting some lovin' in. We have spent the morning reading, playing the spelling game on my iPhone ad nauseum, and watching the Sleepytime video. Her numbers are ok so I'm not too nervous about being around her. Just kind of.We're inviting any Houston area folks to stop by The House this afternoon starting about 3. Nothing official or organized. Just a chance to see everyone again and say thanks for all the help.

Pretty good day today

Pretty good day today. It's still hot and humid as hell. I think that's my biggest complaint. (Can you do anything about that, God?) Otherwise, a good day.Proton was at 10 today so not too early but not too late in the day. I got the princess up around 8-ish and she was NOT happy. First of all, she slept in her scrubs (didn't want to put on PJs), which was fine, but she also didn't want to change her clothes, change her diaper, or have her teeth brushed. And her breath STANK!!! Unfortunately, there was no arguing with her, so Grumpy and I just left RMH as-is. We trekked over to MDA first because I had an important mission. Many of you know how rabid I can be about recycling. I'm not a raging environmentalist, but I try to recycle as much as possible. We even recycle at RNR (We collect all the cardboard, glass, plastic, cans, etc. and haul it back to my house to put in with our home recycling). I just refuse to let REFUSE that can be recycled go in a landfill. I think it's a pretty easy thing to do if you're organized about it and have a place in which it can be deposited. It just takes a little effort. And, yes, I feel INCREDIBLY guilty about Charlotte's diapers. If I knew we would be back in diapers at this age, I would have started cloth a long time ago!!Anyway, I digress. So RMH doesn't recycle. They have ONE container for aluminum cans but even that isn't well marked so people even throw the aluminum cans in the trash. The dumpster fills up every day with plastic bottles, cardboard, glass, mixed paper. AGH! They DO recycle at MDA in the cafeteria and a few other select places so I've been trying to take at least the plastic bottles that I have personally used and deposit them in the recycle bin there. So if anyone in the Houston area wants a pet project, maybe they could work with RMH to get some kind of recycling program going? Sounds like a great Eagle scout project to me. I know that some places will even get their own recycling dumpsters on their property and then get income from the recycling material once it is hauled to a recycling center. I don't know if that can be done here, but it's worth looking into. So Walter Johnson was our shuttle driver again and he took us over to the proton center. Once that was done, I decided not to brave the heat and just hang out until the 12:30 shuttle from RMH. There were two adult patients "graduating" today so there was food for celebration. Charlotte really enjoyed noshing on some brownies and was telling all the little old ladies her mantra ("chocolate makes everything better").Then the RMH shuttle driver came to pick us up and we headed back to the house. We've been here all day, alternating between spending quiet time in our room and socializing with the other kids downstairs. It was a quiet but good day. This was one of those rare days where there was no group coming in to provide a meal so we were on our own. I didn't make it to the grocery store as I had intended so I got "creative" with my dinner. Here was my recipe:1 can of chicken breast (drained and cut up)1 package of frozen broccoli (steamed and cut up)mix chicken and broccoli in a bowl with black pepper and garlic/herb seasoningadd fettucine alfredo noodles from a frozen dinner left in the community freezerI made a meal that was big enough to feed three people and the 770 calorie, 46 gram of fat frozen dinner became instantly healthier when I ate less than 1/3 of the pasta and sauce and just added chicken and veggies. And now I have leftovers for tomorrow or the weekend. I love it when I can make a meal like that. Big news on the fundraising front: looks like the concert series tonight raised about $250 for us. Thanks to everyone who came out. I will let Roger name our specific angels since I missed it all...ALSO, the ReeseStrong 5K and Charlotte Reynolds Lollipop Kids Run is starting registration. You can go HERE for more information or also go to www.reesestrong.org On that note, once we get back from Texas, I want to jump more seriously in getting CJSTUF (CJs Thumbs Up Foundation) officially up and running. Our friend Colleen has developed a logo that I love and will be used in our upcoming website (still in progress). We will need to set wheels in motion to officially launch the foundation so if anyone wants to lend their expertise in that, please throw your hat into the ring. We are not 100% sure yet what the charitable "focus" of CJSTUF will be, but that's part of what the Foundation and its board will determine. I will sign off now as I need to get the princess in bed. I finally convinced her to take a bath although I did NOT succeed in getting the teeth brushed. I pick my battles....Think energetic thoughts for Roger. He has a long day tomorrow again.

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?

An Update

Very good day overall yesterday.

Charlotte slept in a bit and, when she did wake up, took her accutane in the morning with only a minimal of drama. It DID take a little piece of chocolate to seal the deal but you know what we say about chocolate...

Our appointment for the "weekly see" with Dr. Mahajan was at 11:30 so the New Mexico contingent came by right at 11 and took us over. Aunt B came into the exam room with us and Uncle Ted and Aunt Lynn stayed in the lobby. Rachel had drawn up a small list of questions/concerns to cover including what chemo drug to have CJ on after the 2 week regimine of accutane ends (today). It's obvious that Dr. Mahajan and Dr. Wolff don't see entirely eye to eye so decisions are made with a certain amount of blood loss. The proton beam protocol is still so new and some of the chemo agents have been out such a short time that they are in the dark about many of the radiation/drug interactions. The worst part is when Dr. Mahajan says, "We just don't know." It's honest and makes me understand their hesitation but it's still an urgh. So I guess I'll be the squeeky wheel today, trying to get someone to make a decision because what is completely unacceptable is Charlotte NOT taking anything because they "just don't know." Dr. Mahajan reiterated what I've heard many of her team say about thinking "outside the box" but I think whenever they look outside the box, they feel like they're flopping around like fish outside the aquarium. Very intelligent, well educated, and highly compensated fish. Fish who drive BMWs and Mercedes 700 class sedans!

We also talked about possibly squeezing the last treatment (which is on Monday, August 31) into the week before so we might be able to come back that weekend. I’m pretty committed to CJ getting all of her treatments so just lopping the last day off is not an option for me. Dr. Mahajan said they could possibly do two treatments on one day but that would be two happy juice sessions which would be pretty hard on her. Something else for her to ponder.
Overall, she was pretty happy with Charlotte’s progress.
After the “weekly see” we went back out to the lobby to wait until they called us for the treatment. The appointment was supposed to be at 1:30. At 2:10 or so, I finally asked one of the medical professionals to get me an update. Apparently, it was either a bit beneath her or she has a shorter memory than me because after she went into the back for a bit, she came out, walked right by us, didn’t acknowledge us, and went through another door on the other side of the lobby. Finally, I saw Trish from CJ’s team walking by and grabbed her. She went back and it must have been time because she and another nurse both came out to get us. It was 2:35. CJ wanted Frosty sung which I guess has been something of a rarity the last couple weeks so they were happy to oblige. Any excuse to hear CJ do her famous “STOP!”
One humorous observation is the occasional nurse/doctor/technician who just obviously doesn’t feel comfortable singing with the rest of us. Yesterday, one nurse actually tried to separate herself and stand all the way across the room near the door. I DON’T THINK SO! Lyrics were thrust into her hands and she at least gave it a go. Once CJ gets into the gantry, she’s a queen. Maybe that’s why they’re behind so often. I’m sure they treat all their patients that way.
After handing over CJ, we went out to get lunch. I tried to navigate but I ended up making us drive 10 miles to go 2. We ended up driving through the medical center to go to Chipotle (your choice of pronunciation) just down the street from the proton center. Mmmm! After not eating much all morning, it didn’t take me long to polish off the entire burrito.
CJ had just come out and was sleeping in the recovery room when we got back. Aunt B and I had a great little “small talk” conversation waiting for Charlotte to wake up.
Here’s an Awww moment…I pick on my sister quite a bit. I’m the little brother, it’s my job. But I’ve said it before, Becky quite often gives me fresh perspectives on things and I’m sure she usually has little or no idea she does it. My brother Vance does that too but he’s much more obnoxious about it! ::-) While I’m here, I should also talk about Uncle Terry (Ted, Tedricks, Pieface…) and Aunt Lynn (Lynnard). They’re sister and brother too…not in that order…then again… I admire them both very highly; mostly for how hard they work and their dedication to the family. The whole family is that way. My mom was pretty formidable when it came to defending her kids and my Aunt Moreen raised two pretty awesome kids as a single mother. My Aunt Debbie passed away relatively young and dealt with kidney transplants, dialysis, needles, and all the typical medical indignities. Hell, Grandma Jay is still plugging along in spite of a stroke she had several years back. She is one tough bird! It all makes my family pretty strong. We’re quirky but strong.
Back to our story…Charlotte work up slowly and was kind of surly until we got back to The House and got some Chocolate milk into her. She perked up after that and then promptly peed on me. She was sitting on my lap and her diaper must have been more full than I thought so all of a sudden I felt to wetness! Not too much of a mess and it was a great excuse to get her into one of the MANY new outfits the NM contingent got for her. She was pretty damned cute in the new pink dress.
THEN it was off to Costco for the traditional pizza and ice cream. I just wanted to get dinner but Aunt B and Aunt Lynnard kept finding stuff they or we had to have. I don’t mind. I got the second season of Flight Of The Concords out of the deal!!!

Oh yeah, I found out that they were trying to get us a limo for our date night but the Tim McGraw concert at Reliant Stadium snapped them all up. What a great thought. Thanks guys!

Charlotte was definitely feeling better. We got pizza and after I took off the cheese and scraped off plenty of sauce (real and imaginary), she ate more than her half of the slice. Costco slices are huge! She also ate all the ice cream I gave her and finished off a good handful of animal crackers before bed. She even took all the accutane as long as I put drops of it on her animal crackers. Go figure!
Need to mention that to the nutritionist at our appointment this morning.
Then she proceeded to stay up until 1:30AM!!! What did Aunt B do to her?!?
Time to get her up. May not be pretty!

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!

Another Good Day

More FUN facts about proton radiation therapy:

1. Protons are injected via a vacuum tube into a linear accelerator and in a few microseconds, the energy equals 7 million volts!!

2. The energy increases to 70-250 million volts which allows the beam to enter the body at various points.

3. Protons move through a series of magnets that shape, focus and direct the beam.

4. At maximum energy, a proton beam travels 125,000 miles per second (or 2/3 the speed of light)!!!

5. From the Hydrogen canister to the patient, a proton travels 313,000 miles!!!

And we thought the trip from Virginia to Houston was far!
***************************

Another good day. Today started out early because of our check-in at the clinic with Dr. Wolff. He is very happy with her progress so we are down to 1x/week checking in with the radiation oncologist and 1x/week checking in with the the oncologist. Plus the daily proton treatments. We will discuss further chemo next week and he is going to begin working on her plan for when we leave and go back to MCV.

The hair just keeps falling out but in typical Charlotte fashion, it doesn't seem to bother her. She was really hungry when we got out of radiation today so we stopped at MDA for a snack (cheetos and apple juice) and then headed back to RMH. I cleaned our room and did some laundry and Charlotte was actually pretty social today.

My friend Kim sent her a farm animal lacing set and she is LOVING it. A good replacement for those shoelaces. Her OT practice is going very well and today she spent a LOT of time lacing and unlacing the horse and the pig. The other kids were really interested in what she was doing too and we had a bunch of the RMH kids working on their fine motor skills. I'll just hang out a shingle and open a clinic here.

The evening was fun because the University of Miami Alumni
Association (Houston Chapter) hosted an ice cream social for the kids here at RMH. Got to meet some fellow 'Canes (none of whom went to school during mine or Roger's tenure). Lots of recent grads. Charlotte ate a LOT of ice cream (chocolate in a pink cone with sprinkles!! and she socialized with everyone.

By the way, she keeps telling everyone "I have two boyfriends...Larson and Wyatt." Depending on the day, she changes who her "favorite" is. Of course, if anyone asks if she has brothers or sisters, she tells them that her two "brothers" are also Larson and Wyatt so I guess she's a little confused. I get lots of weird looks when she says she has 2 brothers but I say she's an only child. She also says she has "two girlfriends" but doesn't say their names.

She also has developed this adorable habit of getting my attention by saying "Tweet Tweet mommy!" That means she wants to tell me something. She's my baby bird!!

So we are settling in for the evening and getting ready for the family to come tomorrow. Hooray! I know she will be very happy to see Daddy and we are looking forward to the visit from Aunt B, Aunt Lynn, and Uncle Terry too.

OH! I learned a very good thing tonight: proton therapy patients get to stay at RMH for up to 60 days before having to vacate so we won't have to worry about appealing for more time or finding another place to stay. I also talked to one of the other moms whose kid is getting proton radiation and she said that their last treatment was supposed to be on a Monday but they are "concentrating" his last 5 treatments so that they can finish on a Friday. I'm going to have to ask about that as her current schedule has her finishing on a Monday. It would be really nice to finish on a Friday and spend the weekend packing up for home...

Lots to do and must rest too (hey, that rhymes).

Happy weekend, y'all!

Rachel

Update and Quirky Charlotte Observations and Sayings

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

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

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

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

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

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

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

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

Rachel and CJ

Update:

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

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

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

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

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

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

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

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

Cleaning up from the POOP!

"When the gods want to punish you, they answer your prayers." --Karen Blixen in Out of Africa

I woke up at about 6 AM this morning as I usually do. Turned on NPR, laid in bed, listened to the construction sounds outside our window (they are building a road and bridge near RMH and start working early due to the heat...just starting to take in the day. I got up to check on Charlotte and saw that while she was still sleeping, her diaper had busted full of POOP and had leaked all over the bed. I proceeded to get her cleaned up, including a fresh diaper, removed her nightgown, and moved her (naked except for the diaper) to my bed while I cleaned everything up. She went right back to sleep.

I went downstairs thinking that at this hour, we would have plenty of empty washers. My mistake. 4/5 of the washers were occupied (at 6:30!!!) and the other one was out of commission due to service needs. I went to ask the front desk attendant what she wanted me to do with the soiled mattress pad since we aren't supposed to wash that in the regular washers. She went ahead and took the pad and the sheets and put it in the commercial washer they use for the big jobs so my laundry could wait till later.

I went upstairs with a new pad and sheets, remade her bed, and heard Charlotte awaken, telling me the plot of some Wonder Pets episode. I fudged the NPO rule a bit so she could take her accutane with some applesauce. It was early enough that we should be ok. Then we got ourselves ready and headed into the clinic. I like our walks to MDA. It gives me a good chance for exercise and Charlotte gets some fresh air. We told Reh about the good news (yay, poopie) so the enema was off the table (hooray). They drew her labs. Counts are still low but OK and Dr. Vats checked her out. The stiffness in her legs seems better today so he wasn't too concerned. We decided to just keep going with the accutane the way we are giving it (rather than compounding it) and he gave some tips for helping us make sure we get the right dosage out of the capsule.

So we headed back to the house until our PTC appointment later today. Grandpa and Bonita are meeting us here with Charlotte's new scrubs. Daddy wanted her to have some scrubs so he found a pattern and Bonita found some cute fabric and she set to work. I think Daddy is getting a matching set. Rumor has it, Broncos fabric is on the way too.

She is now enjoying PBS (Word World and Barney).

So the prayers for poop can subside a bit. How 'bout just prayers for regularity? That'll do.

She is Doing Pretty Well

Another good day...except NO POOP!! Otherwise, she is doing pretty well. She slept about 11 hours last night. I let her sleep as long as she wanted to reduce the amount of time that she is NPO and she got up a little after 9. That gave me the morning to write a few thank you notes, read my book, and toodle around on the internet. Plus, I got to eat my breakfast without having her watch me.

We got up and decided to walk over to the MDA main building for the shuttle to the proton center. She walked over a block all by herself (her choice). While she was slow, she did a great job. It actually wasn't unbearably hot as there has been a steady breeze blowing for the last 24 hours. Still hot but at least breezy and the walk from RMH to MDA is pretty well shaded. We caught the shuttle and made it over to the proton center with plenty of time and they got her right in for her appointment with Dr. Woo. The ladies at the center (all the nurses and assistants) make such a big deal over her. Today she was extra cute with her superstar sunglasses. Dr. Woo didn't seem ultra concerned with her lack of poop and was happy that her weight was stable and she doesn't seem to have any other aversive symptoms related to the proton therapy. After he was happy seeing her, we were given the option to go back to the lobby or hang out in the exam room. CJ chose to stay put so I read my book while she read books and watched videos and was greeted intermittently by the proton therapy staff.

Grandpa and Juanita arrived around 12:30/1 PM and she went out to greet them. Then she decided she wanted to go upstairs and check out the playroom there. Boy, was our timing good. The child life specialist had just arrived with some new toys, one of which was a pink and purple doodle-pro that she said she picked out "with Charlotte in mind". Charlotte played with that for quite a while and then read a few books. Finally, around 2:30 (an hour late...again) they came to get her. Off to lunch again for mommy and she went to be irradiated.

We came back and she had just gone into the recovery room and woke up about a half hour later. We went back to the "camping truck" at the RV park for dinner and Charlotte ate a whole ear of corn, some chicken, and some chocolate pie. She was pretty talkative and has been in a relatively good mood (despite the constipation).

While exploring the camping truck, Charlotte found a honeydew melon and decided it would be fun to put a hat on it. Then we found some markers and decorated it. Result: Grandpa Honeydew. Pretty cute and we all had a good laugh.

We came back to RMH and a gift was waiting for us: Aunt Lynn had donated one of those Koala Care diaper changing tables for the RMH and the company had matched it with an additional gift (and covered the shipping). Hooray and thanks, Aunt Lynn. I am sure the folks at RMH will be appreciative.

Now Charlotte and I just finished having a heart to heart about pooping. I am becoming more and more convinced that she is holding in her poop as she talks about "I don't like to poop. I only like to pee.". We have talked about how necessary it is to poop to stay healthy and that if she doesn't poop she's going to end up back in the hospital. Sigh. We'll see if it works.

Talked to Roger briefly but it sounds like he has had a good day. We are back to the clinic and then back to proton therapy tomorrow. At least we have a routine.

Rachel

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.

Charlotte has Done So Well today!

Charlotte has done so well today! She didn’t eat much of anything this morning before she had to go NPO but she did drink a container of apple juice at a little after 11. (fudged the 11 o’clock cut-off just a little). The sugar in the apple juice must have set her off because she came alive after that. Chatting and telling everyone plots of shows/books, who in our family is related to whom, and general CJ stuff like that. When the Bonitas came by, I walked to The House and did some domestic stuff including making CJ’s bed, check the mail, stuff like that. Also got a change of clothes for me. The Bayer folks were providing lunch today and were handing out bags with little teddy bears in them. They also gave out little squeezy stressball eagles. Who would need something like that? :-P
When I got back to CJ’s room, I heard that she had taken the Bonitas on quite the little jaunt. She had been on a ride around the floor in the wagon already but when they took her out to go back into the room, they found she wasn’t quite done and she led them off on a walking tour of the floor this time, followed by yet another ride in the wagon.
Then it was time for the ambulance ride to the proton center which has already become old hat for her. The crew was different and the woman could have been our neighbor, Abby’s, big sister. Charlotte didn’t see the resemblance.
At the proton center, Charlotte played in the toy area and made me give up my shoe for “lace time.” She has the most disgustingly sweet, Shirley Temple, cavities for the rest of your life way of asking, “Daddy may I PLEASE play with your shoestring?” Then after she completely deconstructs my shoe, she turns around and asks, “Is it ok if I play with your shoestring?” I mean, who can resist it. The police should isolate it and use it as a non-lethal weapon. “Mr. Bad Guy, would you PLEASE freeze?” “If done right, no can defend.” (Movie trivia time…)
After a while of great playtime, she ran out of steam and just wanted me to hold her on the couch in the lobby. But not just any couch, mind you. It HAD to be the couch we had chilled on (“on which we had chilled?”) every day we had been there. So we got settled with her wrapped up in the sheet we got from the recovery room and I must admit, I don’t mind doing it. Unfortunately, we had been settled no more than 10 minutes when they called us in.
The traditional singing of Frosty ensued. They’re starting to get pretty good at it and CJ sang along. Of course, it’s all about making her going to sleep a good experience. “If they go to sleep well, they wake up well.” It’s kind of a mantra here. All these treatment places have traditions and ways for patients and their families to stay focused on the end like the bell that chemo patients ring at the end of treatment (Dog! Dog! Dog!) Anyway, the proton center has a gong and they make these calendars for the patients that count down to the last treatment and they made a beautiful one for Charlotte.
Side note: That was actually the second time Frosty had been sung to her today. The other ambu-guy, Doug, had an earworm going that was really odd. “Santa Clause Is Coming To Town” was going through his head so I decided to manipulate him a little. I told him about Frosty and CJ and I sang the first verse. Buy the time we were done with the first set of “thumpity thump thump”s, we were at the center and Doug had a new earworm! (how does one do an evil face?) Olive Sacs would have a field day with this guy!
Treatment #4 (29 to go) went very well and we headed back to the hospital.
Then the munchy flood gates opened! After we got resettled, I pulled out mac n cheese, she ate it. Mandarin oranges? Gone! Snuck in some magnesium citrate. No hesitation. She ate pretzels, brownies, an entire chocolate milkshakeshake, a tortilla and she took her senna with almost no trouble!
This is a tale of two Charlotte’s. The difference between three days ago and now is so profound, even Dr. Wolf was forced to reconsider things. He came by last night (does the guy ever go home?) to see about CJ and was very happy with her progress. The neck is still stiff but whatever was making her nauseous and not interested in eating has passed. Yea! Looks like we may get out tomorrow (Saturday).
(It’s now Saturday and I will see my wife in just a few hours!)
Accutane is definitely the chemo drug happening starting Sat (today). Dr. Wolff wanted to start it last night but there wasn’t any in the hospital. Also, they’re going to compound it so we don’t have to worry about cutting the top off the pill and mixing it with something. The MRI from just after the third surgery hasn’t showed up yet so it’ll have to wait until next week to do the comparison.
Off to left field…Watching Pres. Obama talk about the newest education initiative. Lots of big ideas and fancy talk but I have yet to hear him say much about music. When is everyone going to realize how essential the arts, music in particular, are to education? More and more research comes out all the time saying how important music is to brain development, socialization, gross and fine motor skills, you name it. Multiple areas of the brain are utilized when experiencing/making music, parts of the brain actually grow larger when one studies music. You want a cause to support, get school boards and other LOCAL government officials to make the arts a priority in public schools instead of always making them the first thing to go.
OK, I’m done. Have a nice day. Fly safe and comfy, Dear.

Charlotte Admitted to the Hospital

I know everyone is probably chomping at the bit for some kind of update. I can't do it justice so Roger will need to give the full rundown but suffice it to say it's been a rough 24-48 hours or so for Roger and Charlotte.

Here's the brief update:
First day of radiation ran late and really long.
She got nauseous and started vomiting about 1 AM.
Had second day of radiation BUT also saw oncology doc and there were concerns that she might have some kind of bug. She got admitted to the hospital so they could give her fluids and monitor her progress. Hopefully won't be admitted for long.

That's about as much as I know.

Also (fortunately) Bob and Juanita are now in Houston so Roger has some backup support.

I will let him supply further details. Last time I talked to him, he was really tired. I'm hoping he got some rest.

As for me, I'm hanging in there. Working a lot and can't believe it's almost my turn to go to TX. Had a really good meeting with Dr. Matt yesterday (always helps) and work has been going well. I've had some great angels bringing me meals, flowers, and other bits of sunshine to brighten my days.

Gotta go get ready for another busy day.

Rachel

Update:

Guess what? This one’s tipping 5 pages in Word! Rachel's post was pretty much IT in a nutshell so if you only want shells, that's all you need. Go get some coffee. If you want nuts keep reading. And go get a whole pot!
MAN! I hate it when I'm right (and I'm right so rarely I should appreciate it).

The last couple of days have been brutal. I haven't felt awake enough, or had enough free time while awake to post on CB but hopefully my little blurbs on Facebook helped some of you get at least a partial fix. Not sure I can make it long tonight. (Actually I didn’t. I had to put down the laptop and sleep. It’s now 4:45am)

So we're in the hospital. I mean the actual hospital, admitted for observation because Charlotte isn't eating and threw up four times today. including once right in front of Dr. Wolff.

But I'm getting ahead of myself.

Yesterday (Tuesday) started her proton therapy treatments and Charlotte had trouble from the start. We had to wake up at the buttcrack of dawn to try and get her to eat something before she went NPO at 5:30am. No-go. She wasn’t interested and I don’t blame her. My problem at the time (and there were many on Monday) was that she wasn’t going to get to eat all day and there is always food floating around The House. I wanted to minimize CJ’s suffering by at least getting her to eat something. As I Said, no-go.
So I let her sleep and she didn’t eat all day. It really wasn’t an issue because she hasn’t been eating much and she didn’t ask for anything. Her appointment at the proton therapy clinic was (supposedly) at 2:30pm. On MYMDAnderson.com, it actually said 2pm and, as I have since found out, the clinic had 3:30. But I didn’t know that so let’s not taint the post too early.
She slept in again and I didn’t disturb her to make the time between awake and food as small as possible. When we finally got up, we did the usual, watch a video, go downstairs, play with shoestrings, etc.
I mentioned her “stiffening up” before and it has been slowly but steadily getting worse. I was going to mention it to the Drs. at Wednesday’s appointment. She’s getting to the point that she doesn’t like to sit up. She’s also very lethargic which isn’t a good sign.
There are shuttles that go around the medical center from The House and the only one that would get us to the proton center on time for the 2:30 appt. leaves at 12:45 so we had to take that one and get there early. Not a problem, I always have stuff for her to do. She hasn’t really been the mood to do anything except be held or play with shoestrings anyway.
So we got there very early and checked in. Who knows? Maybe they could get her in early. (Writing that now I think to myself, “you silly, naïve little man.”) At least they got her in to get the vitals. Then we went out the lobby and waited. And waited. And waited…(Remember the John Houston version of the story of Noah?)
Finally, at about 3:30, I asked someone to go check and they came back and told me they were backed up (REALLY?!?) and Charlotte is up next. Well in proton radiation-speak, that could mean a long time. Most of these treatments are at least an hour long, the place has a steady flow of patients, and there are three “gantries.” The hours stack up. Which is why we were sitting there at 4pm waiting for what was originally supposed to be a 2:30pm appointment. Charlotte never complained or told me she was hungry the whole time. She was not feeling well I could tell and I just bundled her up and held her on my lap while she slept and I stewed. It was a very hard time sitting there letting my thoughts spiral around like they will do when I get riled. It also let in the “what if” demons and a couple times I just about lost it right there in the lobby. What really bugged me was that no one seemed concerned enough about us to at least keep us informed.
And then, with a lobby scattered with patients, many of whom are almost assuredly NPO (couldn’t eat), one of the doctors actually comes out and starts offering people chocolate! WHAT?!? I’m sure it was a gesture made with the best of intentions but incredibly unenlightened.
FINALLY after 4:30 (Charlotte was going on 20 hours since she ate last), they took her in and hardly anyone apologized for the delay and the sorries I got were superficial and insincere. I was livid by the time I carried her in to the Gantry that I had a hard time even talking to anyone. I wanted to break stuff, call people names, and write nasty emails. They know from before that CJ love Frosty so they had the lyrics already printed out and waiting and even that didn’t help. Charlotte wasn’t feeling great anyway so we didn’t sing. I really wanted to appreciate the scope of what was about to happen to her but I just took a couple pictures and left. Man! I was mad.
Now that she was in, I could eat something and when I went to get a snack, insult was added to injury. In retrospect, I realize this is a very silly thing to get upset over and a waste of energy but here’s where my head was at the time: In a rare attempt to eat healthy, I was going to get something other than the honey bun I got last time and realized the only thing remotely healthy was a little bag of peanuts and I just didn’t want that. I noticed anything of any “heft” was $1.25 so I stuck my $1 in and pulled out another dollar to chase but the machine wouldn’t take more than one dollar at a time. I didn’t have a quarter. Apparently neither did anyone else around me. It didn’t take $5s. There was no change machine. Internally, I blew up. My thoughts went from dark to biggest, meanest, hurricane storm cloud black. Had anyone spoken to me, or worse, asked me how I was, I think I would have just screamed in their face uncontrollably. I mean, these guys are supposed to be the absolute best IN THE WORLD at what they do and they have taken pains to make the environment as calm and “healing” as possible but they couldn’t think of a little detail like a freaking change machine or machines that take more than a dollar?!?
THEN! Noone called me back to the recovery room once she was done so it was almost two hours later (reminded of the time by my lovely wife) before I popped my head in to ask what was up. She had already woken up in the back and was getting her wits back. Talk about “when it rains it pours!” Things kept piling up so much I was beginning to think I had been set up.
Breathe. In-out-in-out
OK. Now you know how my annual freakout works. As I’ve said in a previous post, it’s turned into a monthly occurrence. I’m actually keeping a close eye on myself to make sure I’m not seriously losing it. That in itself is probably a warning sign, eh. Need to ask Matt about that. I’m doing “guitar therapy” on myself, staying very focused on CJ (once she was out of my control was when I melted down so I will need there distraction of working at Romp n’ Roll all the time) and trying to stay connected to everyone. Not doing regular CB updates takes its toll too. I’m telling you, it’s therapy.
Moving on, I did write that nasty email to MDAnderson and actually got results. They actually have a patient advocate and she filed a complaint in our name which is fine especially if they refine their policies.
OK, I said moving on. Charlotte went through her first therapy with no hitches and when I got back to her, she ate a fruit cup. The process had taken so long, we missed the last shuttle back to The House so they called us a cab. It’s not far and only cost $5 or so. I’m not sure but the woman (and her little boy) who rode back with us paid the fare and wouldn’t take any money from me. “Next time,” she said.
When we got back, they were playing BINGO and giving out some really amazing donated prizes. Charlotte wasn’t interested of course and just wanted to go into the playroom. That didn’t last long and it was off to bed. Good because we had an early appointment in the morning at the main hospital. I was feeling pretty wrung out so I just closed everything up and was asleep by 10.
Now there are few sounds in the world that strike fear into the heart of a parent than the tell-tale gurgling of a child about to throw up; especially in the middle of the night. I heard those sounds at around 1am. It yanked me from my sleep but I wasn’t fast enough with the bucket it went on the bed. I held her up, let her finish, and then got her cleaned up and gave her a zofran. I also stripped the bed and started a late night load of laundry (Man, is THAT a nice perc of The House.)
She threw up again about 4:45 and once more at around 6 but there was no fever and I figured it was just a little side effect of the proton therapy. I think in the end might have been part right. After the last episode, we just got up and got ready.
We walked to the main hospital because for some reason, CJ refused to get out of her stroller to get into the bus. No biggie, I need the exercise. When we got there, what I thought was a regular Dr.s visit ended up being an opthomology assessment. It was a bust because by now, CJ has become the most anti-social, uncooperative patient ever. It didn’t help that the eye doc kept shaking toys in her face and asking her 5 questions in a row without waiting for an answer and she asked “bad” questions at that. Rachel would have had a field day with her. Finally, I had had enough of it and ended the pointless berating telling her we would have to reschedule. My observation: a drawer full of toys doesn’t make you good with kids.
Can you tell I’m becoming disillusioned with MD Anderson at this point?
Next I went next door full of my daddy self determined to get some answers and see some people who, for some reason, weren’t communicating with us after we made it abundantly clear multiple times that we needed that. I checked in, told the receptionist that I really needed to find out what was going on with the chemo schedule and what we needed to do next. She got us squeezed in to see one of the nurses who took blood from CJ and then they put us in a room to wait for Dr. Wolff whom I had already seen running around looking very busy. I wasn’t feeling optimistic.
Then Dr. Wolff went and spoiled my mood. He single handedly renewed my faith in our purpose by coming in relatively soon, bringing his crew including Nurse Reh, who is his version of Dr. Tye’s Joanne, and did what I like second best about him (the best being that he’s a darn good oncologist), he sifted through the crap around the story, compiled information in his brain out loud right in front of us, and in a very short time, convinced me that CJ was actually dehydrated, had a bug that was probably easily treated, decided to admit her for observation and noticed the stiffness without my help. He actually said it was a classic sign of meningitis or a related condition although he said if it were really full blown meningitis, she would be a lot sicker.
He also asked me questions about what I think! Imagine that! I told him the impression I had gotten from my discussion from Dr. Vats about the tumor growing and the cancer cells in the spine. I think what I said jibed with his discussions with Dr. Vats so he finally told me what he thinks. He doesn’t think the tumor has grown but he needs the previous scan to tell for sure. Dr. Kahn was supposed to have sent it but no one can find it. Rachel is going to try to get a copy on disc to bring with her on Saturday.
(And now for something completely different: my belly makes a great laptop table!)
OK, I’m back. Dr. Wolff also suspects the cells in the spine have been there longer than everyone thinks. Another clue that it probably isn’t growing. He also said something interesting. He had mentioned how busy they were and the lack of rooms and I said I was sorry for throwing a monkey wrench into his day.
“Nonsence!” he said. "She’s a sick child, I love to treat sick children. The sicker they are the better.” I don’t think it came out quite right but I know what he meant. He’s up for it.
He didn’t want to interrupt the proton treatments because if it was actually something caused by the tumor, he didn’t want to get in the way of that. So Nurse Reh arranged an ambulance ride for us! Charlotte got to ride on a gurney through the halls and then in an ambulance to the proton center. First time I’ve ever been in an ambulance too. No lights or siren though. Oh well, I’m actually thankful we didn’t need them.
Before we left however, they hooked up a bag o’ fluids to her and she got rehydrated. Talk about a difference! She perked up and became quite chatty. By the way, she can see fine. She can see tiny pictures up close and identified pictures out in the hall from inside the room.
Day two at the proton center was like Charlotte after she poops (I just couldn’t have a post with no poop references!), completely different. We actually got there a bit after we were supposed to be there but right on time for the appointment and they rolled her right in. I carried her in to the Gantry and this time she was into the singing of Frosty (me too). She even did the “STOP!” with her hand when we got to that part. Then the happy juice kicked in and the last I heard was, ”That’s my favorite {zonk!}
In anticipation of the upcoming slumber party, I took the MDAnderson shuttle back to the main hospital intending to walk over to The House to get provisions from the room. I called my dad to see where they were in terms of getting into town and they said they were just getting ready to park at the main hospital! That was handy. So we met up, drove over to The House and I got stuff. We drove back to the proton center just in time to go see Charlotte in the recovery room. When she woke up and saw Grandpa KATIE BAR THE DOOR! I hadn’t seen that much energy out of that girl in a week. She sure loves her men. Grandma Juanita Bonita was all over her too “gettin’ lots o’ sugar.”
We got another ambulance ride back to the hospital and got settled in to our private room with shower. By the time we got here, she had closed back down and I don’t think she’s very happy to be here. Nice facilities, though. That’s another post.
Last night she had some juice and this morning she ate 4 crackers, a large pretzel, and most of a bag of 100 calorie pack Girl Scout cookies so at least something is going in.
So here we are at 8:15am, she went back to sleep pretty easily after some Blue’s Clues. Can’t wait to show her the playroom here. Pretty boss dude! Think she may need a diaper change.

Update:

A relatively short update:

The end

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.

We Watched the Sunrise

Charlotte woke up bright and early this morning and we watched the sunrise through our window. It was pretty nice but already very hot so no chance of early morning playground activity.

A needs request: The Ronald McDonald House here is in need of fold-down, plastic, wall-mounted, Koala brand or similar diaper changing tables in at least the two downstairs bathrooms. All they have is a dresser in the hallway between the two that they call a diaper changing table but it has no rim or safety strap or anything. It's just a dresser.

I can probably install them myself and with my dad coming, I think I could probably enlist his help with that. If anyone knows of a company somewhere in the Houston area that supplies that sort of thing and would like to donate two, please let me know. I'll also work on it from this end.

Back to our story...After a while we went downstairs for applesauce and chocolate milk. We got a call from a friend of a friend who works at the Houston Museum of Natural Science and he offered to hook us up with some passes! HECK YEAH!

The Beazleys let me use their truck while they are out of town so I took the opportunity to head over to a nearby Target and spend some of the gift cards we've been given. some fresh books and videos for CJ and a new of cheap sunglasses for me since I can't find the ones I brought with me. I do that a lot. That's why I buy cheap ones.

Then it was off to the museum. (I'm getting to know my way around town pretty well!)

The museum was very cool and we got to see dinosaurs, a mammoth (maybe a mastodon - not sure), a giant sloth that makes the one in Daytona Beach look puny, animal displays that reminded me disturbingly of Night At The Museum, the very cool Terra Cotta Warriors, and the coolest of all, the butterfies. There were some amazing butterflies in there.

Charlotte pooped out before we could get to the Diamond display but she, surprizingly, liked the Terra Cotta Warriors mostly because of the horses they had. She also found the concept of someone made up like one of the statues and scaring the crap out of people as they walked by very amusing.

When we came back to The House, there was food being served by yet another organization and I chowed while she played in the toyroom. She's eating a little so I'm not hyper concerned but it ain't much. Applesauce, some dry cheerios, and she's drinking plenty. Stop obsessing Roger.

We came back to the room with our new found treasures and after a little Dora, she was out. For three hours.

We have most of the flights back and forth set with

Update:

Not sure what was up with the partial journal post. Must have gotten distracted. (Who, me???)

All I was going to say was that we got most of the flights booked with ride requests in to the Houston Ground Angels.

I wanted to let you know that it's now 11:45pm Houston time and Charlotte barely turned over to go to sleep 15 minutes ago! 3-hour naps will do that to ya. So she'll sleep in maybe.

I also wanted to share another story. A family of 4 daughters and their parents, the mother expecting her 5th(!) a boy this time, came to The House the day before us and we've been passing pleasantries and watching out for each other's kids and all that but tonight I finally met them.

The boy, Connor, is the patient! He has a blocked bladder and they have been perfoming surgeries (3 now) in utero to place shunts to help drain the bladder. Connor keeps pulling them out. Mom said the last sonogram was a pic of Connor with his eyes open, toungue sticking out, and the end of the tube dangling defiantly in his hand. I told her I want a copy of that one!

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

Long and Busy Days

Did you miss us?

It's hard to believe that our last post was on Sunday. These days have been long and full of action (and tiring...what else is new?).

Trip to the clinic yesterday was L-O-N-G and frustrating for daddy. Her numbers are low but not horrible so she was able to get both medicines. Unfortunately, she refused to take the temozolamide in any type of food no matter how much we tried to convince her that it wouldn't taste bad (and it shouldn't). She's way too smart for us now and knows that when we bring her food or drink that is unopened, it is already "tainted" with something.

Anyway, Roger took the prescription to the compounding pharmacy and they made a concoction. Fortunately, we only have to do this medicine once a day until Friday (for now). The topotecan infusion also seems to be going well.

Oh, and she's still having problems with no poop. I think it might be the Zofran that's stopping her up so we're back on the mag citrate regimen.

She's been very quiet and mellow lately. She definitely gets tired quickly. I took her to OT today and she worked hard. Then we had to go back to the orthotic place to get her brace readjusted. The PT wants her to go back to wearing the brace again just to help support her muscles. They are still carrying a lot of tension and it should help with the overcompensation.

In other news:

We found out that BOTH MD Anderson AND Shands Jacksonville are in our insurance network AND they should be able to find us radiation oncologists in-network at both places as well AND the insurance will cover the proton beam radiation (yay). This opens up a whole host of possibilities and I think MD Anderson is back on the table for options. While we know we would have great family/friend support in Jacksonville, MD Anderson is already going to be fully supportive of her protocol (since they created it) and we wouldn't have to get to know a whole host of new physicians. Plus, we know they will accept her in TX. Not so sure about FL yet.

SOOOO...Roger and I have been doing some talking and we will talk some more tonight. Look for a big announcement tomorrow I guess.

The other potentially bad news is that wherever they go, they may want her there as early as the end of next week. That's right. We may have to reschedule her birthday party. Stay tuned and we will let you know. Kind of a bummer but we're learning how to go with the flow....

Meanwhile we have also been looking at the transportation logistics. Odds are, one of us (probably Roger) would fly out to (wherever) initially with Charlotte and we would switch places about every two weeks. Whoever is in VA would cover RNR and hold down the fort. The other person would handle Charlotte and all the medical stuff. Oh joy. It really doesn't make me happy as I know that part of why and how we have survived all of this so far is because Roger and I make a great team. This goes for parenting as well as all the business stuff. Potentially, Roger and I may go over 6 weeks without some quality time together and we haven't done that since before we got married (let alone had our lives in crisis). Yes, we know we will need lots of support and we will plan to seek it out!!!

Fortunately we have some airline credits saved up on AirTran that will probably help with tickets and the fundraising efforts will definitely help with travel expenses. We will be investigating lodging options (apartments, Ronald McDonald House, etc.) once we make a final decision.

So that's my update for now. More to come. I'm hungry and dinner (cooked by the 'rents) is calling...

Rachel