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!

Good Appointments Today

Oi! I keep not learning my lesson.

Had a really long post done and I had even highlighted and copied it just in case but the computer updated itself when I was doing something with Charlotte and restarted, which I guess reset the clipboard. Drat!

Suffice to say we had good appointments today including audiology and a followup with the Children's Cancer Center.

Charlotte will NOT have to be NPO for chemo which means she can eat breakfast.

Her topotecan will be administered via IV just like at MCV.

Her temazolamide (sp?) will be compounded into liquid form. (More chocolate for breakfast!)

She won't have to tace accutane while on proton therapy due to its effect on the skin.

They hadn't read the MRI scans as of her appointment time but it should be available on Mymdanderson.org very soon if not already.

Tonight we are going to the circus at Reliant Stadium courtesy of THE HOUSE. The tree huggin hippie in me says we shouldn't go because of animal rights issues but the exhausted dad in me says my daughter will love it so we're going. I'll try to re-compose the long update later.

Planning to go to MD Anderson in Houston

Not a lot of new news except that Charlotte's numbers seem to be improving rather than tanking like they were supposed to. She is just amazing!

She's been taking her icky medicine with a minimum of fuss. We've developed the technique of giving her a little bit of meds, then a little piece of chocolate, then more meds, then chocolate, and so on. Before she knows it, the icky stuff is gone and all that's left is the good (relatively) tasting medicine.

She had a pretty mellow day watching a video or two, playing with the shoelaces from my running shoes, and opening a box of birthday presants that came from Clampitville (Aunt B and Uncle Hairy). Very nice gifts folks even though we expressly said, "NO PRESANTS!" this year since she's got so much stuff already and has been getting presants almost constantly since "The Crap" began.

Speaking of Aunt B an' 'em, We got to chat with them via the Hopecam all the way from Hawaii. We (or rather "I") also chatted with the Prices for a short bit as well. CJ wasn't all that interested.

Right now, she's over at Uncle Kolbey's threading frog beads onto a string. She's getting really good at that again.

Rachel has been doing most of the work today, taking Charlotte into the clinic and then going in to Romp n' Roll for the afternoon/evening shift. I get to work hard tomorrow.

I took advantage of my free 90-minute massage today at Massage Envy. I was quite the noodle afterwards. I might get a membership because I really want that once a month! :-)

So...what the heck is on the horizon? We are almost assuredly going to MD Anderson in Houston for the proton beam radiation. We're still not 100% sure when we're going, or how we're going to get there, or where we're going to stay but there are sure a lot of resources out there of which we could take advantage. Thanks to all of you for forwarding those resources to us, especially Deb Price (Nile's mom).

There's a strong possibility we will have to postpone Charlotte's birthday party. Very disappointing but CJ's treatment comes first and we know we'll get the absolute best care at MD Anderson.

I've already contacted the Houston Ground Angels and they'll be helping out with getting us where we need to be. You want an organization that is worth a hefty donation? There you go. Here's their address:
Houston Ground Angels
P.O. Box 683127
Houston, Tx. 77268-3127

Here's the website: http://www.houstongroundangels.org/

There's a bowl of ice cream calling me.

Hoping to Leave Tomorrow

Well, now we are looking at leaving sometime tomorrow. Her counts are up and getting better. There are "sub levels" to her white count that they want to improve (her neutrophils). They are going to keep her on IV and possibly oral antibiotics for about 10 days but we should be able to do that at home. Meanwhile, it looks like we are still on track to start chemo (again) next Friday. Sometimes I'm not sure why we bother to leave the hospital.

In other news, we got word from Humana that they officially denied our first appeal so we are off to write more letters. Actually, my second appeal letter is basically written and we are getting Dr. Khan to write another one on our behalf. Humana keeps looking at this as a "convenience" decision on our part and not factoring in anything like Charlotte's age or the intensity of her treatment. Basically, they see it as our "choice" to keep her at MCV and since we are making that choice, we should just suck it up and pay the out-of-network costs. They think that since they are not outright denying her care, they have done everything they need to do. I'm pretty much resigned that will be the outcome at this point but at least we will fight one more round and say that we fought the good fight.

I had a nice walk outside today while Grandpa visited with Charlotte. I journeyed over to the Capitol grounds where it was just beautiful today. Dogwoods, azaleas, and tulips blooming everywhere!

Grandpa brought Charlotte a belated Easter basket filled with Hershey's Miniatures and Charlotte and I have been "sharing" her chocolates with the hospital staff, offering some to everyone who comes in her room. It is so sweet and a great way for Charlotte to engage socially with others. The hospital staff (of course) get all googily when she offers them a candy!

She also had a fun little playdate with the preschool teacher and two other kids on the unit. They played in the playroom and finger painted. Great fun!

Now she is back to her room and watching a bit of TV. Yo Gabba Gabba for a change!

Roger's dad will be spending the evening here so hopefully Roger and I will get a few minutes together tonight. Hopefully we will not be too exhausted to keep from collapsing into bed without socializing for a bit. That has become a big challenge recently.

Let's hope for a discharge from the hospital tomorrow!

Rachel

Another Great Day for Charlotte. She is Amazing!

I am changing the time zone to "Hawaii Time". Maybe that's wishful thinking...
Another great day for Charlotte. She is amazing!
Yesterday, I came home from Costco with three Nandina plants that John had helped me pick out for the front yard. Charlotte greeted us at the care and proceeded to ask all kinds of questions about what we were doing. She said, "How many plants did you buy?" and I said, "Well, you tell me." So she responded, "You bought the number of plants that match my age." WOW! Pretty higher level thinking from that kid!
For those of you wondering about further plans with the Head Shaving Party, the current schedule is that the party will be Friday, April 10th from 3-8 PM at Romp n' Roll (Virginia Center) with lots of play time for the kids. We will probably do the actual head shaving/decorating at about 6 PM to allow for folks to get off of work, etc.
Bob Flanagan and some other folks from the Ashland Jaycees have stepped up to take the reins for this current project. If you would like to coordinate efforts with him, please contact him at bob@dewre.com
I can't think of anything else to say tonight. LOST was great until it started tugging on those "mommy" heart strings. Damn that show!!!! I'm going to try to be brave and watch the series finale of ER tomorrow but I know it will be one big bawl-fest.
Time for night-nights. Early day at the clinic tomorrow.
Rachel

Update:
The girls are off to see Dr. Kahn.
Urgh.
Earlier, I had been trying to talk to Charlotte about what to expect and all that but this time, I just couldn't bring myself to ruin that great mood she's been in all week. When I tried to bring it up last night that she had to go back in and see Dr. Kahn about the "headache in her head" her face visibly darkened and she said, very matter of factly, "My headache's all gone now." Feel kind of sneaky not warning her better about today.
Gotta love that parental guilt.
Gotta go do Romp n' Roll To Go at Primrose. Thanks to Karen Giles for helping out this weekend with the Spring Fling. Did I mention that Primrose is using the event as a partial fundraiser for A.S.K. in Charlotte's name?
Thanks guys.
p.s. Where is Rarotonga?

Update, Today was Kind of Rough:
And now we begin the slow descent...
Today was kind of rough. She went in first thing for the catheter. She knew it was coming so despite getting to watch Strawberry Shortcake on DVD, having all her favorite loveys close by and mom's hand to hold, the whole experience was rather traumatic. Chocolate milkshake after it was finished made it a little better, I think.
We got home around lunch time to find John and Kolbey cleaning the house top to bottom! Excellent!
She spent most of the day on the grumpy, clingy, whiny side. She knows that she is going back into the hospital tomorrow and she is not very happy about it.
Meanwhile we are mostly packed and ready to go. Kind of getting this routine down to a science with what we need, etc. We will go straight to the clinic in the morning for blood draws (labs) and then down to Radiology for the MRI. And then (hopefully) we will get admitted to the 7th floor without too much delay.
The plan is for granny to actually stay the night Friday night. Rachel is on duty Saturday night and Roger on for Sunday. I am sure there will be more updates over the next few days.
Big thanks to Bob for jumping in with both feet on the Head Shaving party and for all the other "heads" that have volunteered. I think plans are slowly falling into place.