Moving Forward

              

Our New Logo

Can’t do much else can we?  As Bruce Barton said, “When you are through changing, you are through.”  We’re hardwired to keep moving forward; to continually try to make our situation better even though sometimes all we do is repeat the mistakes of the past.  But move forward we must and that is what we’re doing here at CJ’s Thumbs Up Foundation (hopefully not with the whole repeating-past-mistakes thing).

Thanks to our generous Network (that’s YOU, generous reader) we’ve had a very good first half of the year.  Revenue is exceeding expectations due to increased donations, more successful fundraising events, and the release of Rachel’s book, Four Seasons ForCharlotte: A Parent’s Year With Pediatric Cancer.  It seems that so far, we have been doing things the correct way and our mission is being well-supported.

The Cover of Rachel's Book

                With all that in mind, it’s time to take some more baby steps forward.  This year, we will award a total of at least 25 financial assistance grants.  This almost doubles our impact from 2011 (so maybe “baby steps” is too conservative a term).  We also have plans to expand our Board of Directors and have welcomed some extremely capable members to the current board.  Our fundraising initiatives like the Butterfly Socials, the Thumbs Up Ball, and the Fall Art Auction continue to evolve into our primary annual events and we continue to seek ways to improve upon the last event’s success.

We are also modifying our online presence a bit.  In the near future, you will see more regular (weekly) blog posts covering various aspects of CJSTUF.org.  We are currently gathering stories and profiles of our Board of Directors, staff, local medical professionals, events, partnering non-profits, and most importantly, the reason we exist - our families.  We will spotlight these courageous families in an attempt to inspire the reader to do more, to dig deeper, or simply to help the healing process by making the families aware that they are not alone in their struggle.

You will soon be seeing small updates (in both look and function) to the website and social media outlets to include software upgrades, calendars, new widgets, and more efficient ways to keep up, and become involved, with CJSTUF.org.

One thing we are NOT changing is the mission.  We will also never forget the curly-haired, sweet-voiced little girl whose strength and courage is the inspiration for what we do every day. (We still miss you, Charlotte!)

It’s an exciting and bittersweet time for us here at CJ’s Thumbs Up Foundation as we continue to move forward, or as Jonathan Agin signs off of daughter Alexis’, Caringbridge posts, “…we are one day further, yet one day closer…”

We are so thankful to all who are helping us make unbearable situations a little more bearable.

Randolph-Macon College Field Hockey and chemo options

I was going to surprise you all with the good news but I was too slow and those on-the-ball (no pun intended) Randolph-Macon College Field Hockey Lady Jackets beat me to it.The Friends of Jaclyn, an organization that matches up young girls (with health issues) and female collegiate teams, orchestrated a connection between Charlotte and the field hockey team at R-MC and they’ve already started signing the guestbook. This should be very exciting since I never got much of an opportunity to watch them play when I was teaching there. Thanks to Coach Carper and the whole field hockey team. Here’s their website if you want to stay updated throughout the season:
http://www.rmc.edu/athletics/Womens/fieldhockey.aspx
On to other news both good and bad. The good news is that as horrible a two week stint as we had about two months ago where we were losing about one CB child a day, lately, we are seeing a rash of wonderful stories including Megan Blake’s final treatments, Reese’s continued recovery, and Nile Price’s AMAZING defeat of sickle cell! (seems he has picked up his bone marrow donor’s peanut allergy but, as he put it, it’s a good trade!).
Maddie Mingloski, possibly the second most adorable little girl in the world (she's tied with about 1000 others), has entered Long Term Maintenance (which is very good) Here’s her site.
http://www.caringbridge.org/visit/maddie1
Yet, there are always those stories with which I’d rather not burden everyone but these families need your support/positive energy probably as much as any of us. Here’s just a small list of children who have recently gone on to the next part of the journey. The stories can be rough but I know the families sincerely appreciate being on people’s minds.
Liam Riley: http://www.caringbridge.org/visit/liamreilly
Owen Lea: http://www.caringbridge.org/visit/owenlea
Anika Wilke: http://www.caringbridge.org/visit/anikawilke
We keep plugging along and fighting the fight but it always comes back to, “this should not be happening to these children.”
Last but not least, I had a dream last night that CJ was getting treatment in a super posh high-rise office with a huge bowling alley and tons of other very cool things to do! I’ll bet there was a spa for the grownups somewhere. Need to find that place. It’s a very happy place. :-)
Did we mention that I will be flying down to Houston Saturday night! Did we also mention that we’ll all be flying home, AS A FAMILY, on Tuesday? How strange will THAT be? And cool.
Gotta go take a nap!

First of all, a moment of silence for Senator Ted Kennedy. Regardless of your politics, he was an amazing individual who has done great things for this country. His leadership will be missed.Another early morning, another walk to the proton center. We were finished by about 10:30 and headed over to MDA main hospital for our check in with Dr. Wolff. We reviewed the protocol and made a few "tweaks" based on our traveling schedule. He is going to keep her on the topotecan until Wednesday of next week and then we can jump into the new drugs the following week at home (hopefully). We are still trying to firm up a clinic time with Dr. Khan and the folks at MCV but I am hoping that will be resolved by Friday.I asked a lot of questions to Dr. Wolff today about the chemo. Does each drug do the same type of thing? Do they do different things to the tumor? How will we know when to stop chemo? How do we know which drugs are actually working? Etc. The short answer (without taking a course in basic oncology and getting a degree from medical school) is that cells have what is called apoptosis, or cell death. Every cell in your body has a certain life cycle and potential for apoptosis. Some cells such as your white blood cells have a very short lifespan in the body (which is why when chemo stops new cell growth, your counts drop because your body isn't making any new ones. You get neutropenic...and then you run a bigger risk of getting sick). Other types of cells have longer lifespans. Cancer cells have their own cycles of apoptosis and there can be multiple types of cancer cells within a particular tumor. The trick is to find the agent that kills the cell at just the right particular stage of each type of cancer cell. There's the tricky part. We already know that some of the drugs we were using did not do the trick. We are trying this new regime of drugs and will see what it does. That, combined with the results of the MRI, will dictate the course of treatment for the future. Unfortunately, sometimes it's difficult to tell what is really, truly working but the morphoproteomics analysis is supposed to help with that. That, of course, is the basis for her current protocol so that is promising. There are three reasons why we would stop chemo:1. The tumor is still growing or there is new growth2. The side effects of the chemo is detrimental to her health (usually blood counts too low)3. There is no sign of cancer/tumor cells for a particular period of time. This varies depending on the cancer and is basically determined by the history of previous patients with similar tumors and the likelihood of the cancer returning after chemo regimes of a particular length.So we could be on this chemo regimen for a long time. It is very dependent on the post-radiation MRI and the success of these new drugs. We shall see. At least the oral drugs are very managable and she seems to be tolerating them well. That is a positive in our favor.After the clinic, we dropped off the prescription for more topotecan and headed back to the house. We had some lunch and then Halle and her mom invited us to walk with them across Hermann Park and over to the contemporary art museum. The stroller brigade was ON! It was a good walk. Amy (Halle's mom) is a runner and is in MUCH better shape than me so we definitely went at a good pace. It helped that she had the jogging stroller too! The contemporary art museum was small (but FREE!). There were some very unusual exhibits. Most were three dimensional with mixed media and many also featured video or sound. Halle kept saying "I don't get it." Neither did we half the time. But some of it was really interesting. I think everyone's favorite was the Fundred Dollar Bill exhibit. This is a very interesting project going on all over the country and we contributed our own artistic "money" to the cause. For more information on the project, go to http://www.fundred.org After the museum, we zipped back to RMH and I needed a shower. The afternoon was spent with movies and dinner. Ronald McDonald stopped by to visit too but Charlotte wasn't too interested. So that's all the news to report. Not much in the way of action but one step closer to home!!Rachel

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!

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.

Some Bad, But Not Unexpected News

Hi all,
Huge post ahead.
Some bad, but not unexpected news: While Charlotte was in her neurocognitive assessment playing games with the two ladies (whose names I've already forgotten, sorry), I got to look at the latest MRI scans with Dr. Vats (Dr. Wolfe's colleague). We didn't have the post-3rd surgery scan for comparison but the tumor is definitely still there in bits and pieces and possibly still growing. I'm going on the assumption that it's growing.

Dr. Vats also said that there was evidence that it has spread into the upper spine (again, not altogether unexpected) although the computer he used to show me the scans didn't have enough resolution to pick up what he saw on his own computer so I didn’t actually see it. I’ll take his word for it.

Now, before anyone totally freaks out, it's certainly not good news by any stretch of the imagination but the proton radiation protocol has already accounted for the possibility and now we know that it was necessary to plan for head and spine after all. That starts next Tuesday.
Dr. Vats was still very positive and confident that we’re headed down the right path. He did say that he would bring Charlotte’s case before the “tumor board” on Monday to elicit opinions and also that he would explore the possibility of injecting chemo drugs directly into her spine via an LP once every two weeks, adding to Dr. Tye’s recommendation of “throwing the book at it.”
On a good note, CJ wowed them in the assessment with her vocabulary. They’ll get back to us with the official results of the testing as soon as they tally up everything. Dr. Vats was also happy with the recovery of CJ’s left side.
I’ve had several messages from people worrying about how I’m doing emotionally and all that. First off, thanks for the concern. It does mean a lot to me to have so many folks concerned about us.
I’m hanging in there. I’m nowhere close to thriving and I have my off moments but I feel like I’m dealing pretty well. I’ve been thinking very deep and hard about my/our situation and I feel about as focused as I’ve ever felt in my entire life. Crisis sure brings perspective down to a pinpoint, doesn’t it? Nothing else matters besides my daughter’s fight against the cancer. If I have any concerns for myself, it’s how I will deal with things after everything plays out (however it plays out). Different scenarios (best and worst) run through my head all the time but so far they haven’t distracted me from the here and now. I guess I’ll have to figure that out when I get there.
I can’t really speak for Rachel but I think she’s doing a little better. Today’s news didn’t help but she’s using her resources at home, MCV (mostly Dr. Matt), and within the circle of friends & family, and finding more solid footing. Romp n’ Roll is keeping her occupied (my turn when we switch) and Meredith orchestrated a day at Diva’s for her so that will help too! Anyone wanting to donate to that cause can send checks to me.
We will need support in Houston as the proton therapy and chemo kicks in and leaves CJ less functional. My dad has offered to come out as early as next Wednesday and stay for about a week. If anyone was planning to come out, we could use someone after that. Don’t ask me when we want you; tell me when you’re available and willing to come out between then and the end of August and I’ll plug you into the schedule.
The Beazleys have been fabulous and will continue to be. Merrilee is watching CJ tonight so I can go see Harry Potter (Brought my “Muggle” t-shirt and everything, just in case!) and they’re letting me borrow a car this weekend in the guise of having me take them to the airport tomorrow.
Now back to the important stuff, Charlotte. We went to the circus last night and although she liked the pretty horses and she got downright excited to see the elephants, she didn’t make it to the intermission. She was pretty mellow through the pre-show stuff but perked up when the lights went down. Unfortunately they were definitely trying to be Cirque de Parfait which didn’t work in such a large venue and they lost CJ pretty early on. The ringmaster was actually a pretty good Broadway-style singer from Houston who had been with the circus for a couple years now. There was a lot more song and dance stuff than I remember from the one time I saw Ringling Bros. before. There was a moderately silly Jets vs Sharks thing during the Act I finale but one thing really grabbed me. One group of clown “henchmen” came out bouncing on what I can only describe as innertubes with saddles. They did some very cool flips and such off and onto them and now I want one for my own. They also did the motorcycles in the ball trick but they kept adding more and more riders until there were 7 in there. I can’t for the life of me figure out how they all fit in there without knocking each other’s ankles.
Throughout Act I, Charlotte became more and more clingy and finally just climbed onto my lap facing me, put her head on my shoulder and zonked. She slept through the extremely loud finale so I just grabbed everything and headed out when the lights came up for intermission. I was quite the site heading up the stairs with CJ’s unconscious body in one hand, the stroller in the other, and the backpack on my back. At least she was awake on the way down to the seats.
I was going to just call a cab and go back to The House but I just happened to run into the manager of the outing and she called the bus to come get us.
A nice side line, the bus driver told me her story as we rode back to The House last night. Her son was diagnosed with leukemia back in 2000 and spent the next 4 years being treated at MDAnderson. She lived in The House for 4 years while he was treated. She gave up everything to be with him including a successful business and most of her friends and family back home. He’s now 18 and going into college and she now drives the bus for The House. She feels such a connection to the families here that she’s always willing to come in on her day off to help or cover shifts or whatever it takes to make the families’ lives just a little easier. Yet another inspirational story out of a sea of them.
So keep the positive vibes aimed at Houston (with a little left over for Richmond). We’re keeping up the good fight from our end.

Love to everyone,
Rog, Rach, & CJ

p.s. I'm using Facebook for photos and Caringbridge for updates (mostly). If you don't have Facebook and want to see pics, please have someone show you. I don't want to fool with photobucket or the others.

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

Mishy Matchy

Strange request,

I have been deeply touched by one particular Caringbridge story of a boy named Zachary White. He passed away this week and the story of how his community is pulling together to support the family is as inspiring (if not more so) as ours.

The visitation is tomorrow, Sunday, and in the latest post (If I wasn't posting as therapy myself, I would have absolutely no idea how they can be doing it), they talked about how Zach got angry when they tried to explain why his clothes needed to match. I think the term he used was "mishy matchy." They suggested to friends and family that Zach would get a kick out of it if people wore mis-matching clothes to the viewing.

It seems like kind of a cool thing to do so I plan to do it tomorrow. I was hoping some of you might join me. I'll be taking pics to post.

You could read their story directly if you like. I'm sure they are completely overwhelmed right now so maybe just a quick blurb on their CB site would be sufficient. http://www.caringbridge.org/visit/zacharywhite

One thing with which I'm struggling is the desire to support others during what is an intensly personal and private time. I know I would want people to kind of leave me alone and at the same time it feels so good to type things out and know there are so many people out there supporting us that I get conflicted. I think contacting the Whites or whoever should be low key and the mere fact that there are so many hits on the page and there is so much positive energy floating around really helps those of us dealing with the things we've had to go through.

That being said, I'm at least wearing two different kinds of shoes tomorrow for Zach so I can be un-"mishy matchy!"

MRI Results and Update

I know everyone is anxiously awaiting MRI results. So are we. Since it may be a while (I think Dr. Tye is in clinic so we might have to wait till this afternoon for results) I thought I would just satiate everyone with a mini-update.

Charlotte slept till 4 AM (that's 15 hours for anyone keeping track). They even tried to arouse her at midnight so she could eat something before she became NPO but she could not be budged.

She was entertained by Caillou and Frosty till her MRI at 7. They took her down and she came back at about 10 or so. Dr. Tye did check in with us about 9:30 but he said the scans weren't quite ready so I'm guessing he had to go back to clinic.

She came back pretty out of it from the anesthesia but she's been gradually coming back to arousal. She's had some milk and apple juice and a few cookies. We tried to get her interested in coloring but she seems only interested in the Wonder Pets right now.

Her tongue is still hanging out of her mouth. You can kind of understand her when she talks and she can sometimes put it in her mouth on command and talk normally but she still seems to have some motor difficulty holding over from the surgery. The general consensus is that it is a tardive dyskinesia resulting from a combination of meds, swelling, and the very act of the surgery. Everyone is expecting she should be better as time goes on. All of her other levels (blood counts, CBC, etc.) look great and hear drain is looking good too.

So that's all I have to report. I will let you know when I have more news.

Rachel

Update:
First of all, I will direct your attention to the Caring Bridge thermometer at the right. Please notice that Charlotte's name has been un-bolded and only her first name is being used. Thanks to all of you who complained about their misleading fundraising tactics. It looks like although we did not get rid of the thermometer entirely, it was made "less misleading". For now, we will stay with Caring Bridge (happily) and much thanks to those of you who HAVE supported this website. We admit that it is a great service and has benefited us greatly these past few months.

Now on to the real news:

Charlotte is finally resting again and everything is looking great. Her ventric is draining nicely and very clear. Her speech is becoming slightly more clear and the tongue protrusion seems to be dissapating. Yay.

The MRI looks really good. NO cancer cells visible in the spine and I would say that more than half of what was left in the brain (maybe even close to 75-80% is gone. There is still a few spots including a section on the brainstem that he couldn't get from the angle of surgery that he took but it leaves a good amount for radiation to "throw the book at" (as Dr. Tye put it).

So now we just let her heal and will start the consultation process with oncology, radiation oncology, and the good folks in Houston for the next steps. More wait and see as far as options go but we are at least done with this milestone. Dr. Tye thinks the ventric might be able to come out by Sunday which means that if all goes well and she remains stable, we may get to go home sometime next week. All good news.

That's all I have to report for now.

Rachel

Update from Roger:
Let me also add that I am satisfied with the adjustment of the thermometer. It is consistent across Caringbridge so now would be the time to donate to CB if you were holding off. Let them know how powerful we are!

Also, I really need to let you know about a very impressive young man we met in the MRI room before CJ's surgery. I already mentioned him before but left out names so the suits wouldn't get mad at me. But now I'm very happy to announce he has just started a CB site and everyone should visit and sign the guestbook.

His name is Nile Price (I spelled it correctly. No "s" on the end of "Nile.") Here's his site:

http://www.caringbridge.org/visit/nileprice

He's one of those kids you just naturally pull for. (I think his mother deserves just a little credit! :-)

Gotta go relieve Rachel. We're going on a date tomorrow! Gonna go see "Up!"

Letter to Caringbridge and Update from Houston

Here's an email I sent to the Caringbridge folks about the thermometer over there to the right. I realize that in the scheme of our lives, this is not that high on the list but it's kind of important to us.

Dear Caringbridge,
Thank you for your reply to my email concerning your "thermometer" on the website.
I have no problem with Caringbridge fundraising and as I've said, we and our support network have donated and (until recently) planned to continue our support past the end of Charlotte's treatment. My problem is with the use of Charlotte's name as if the donation will be going to help her directly. It is very misleading. This has already been a problem as a friend of ours clicked on the link and sent a donation to Caringbridge thinking it was going to Charlotte. He is not happy and several of our fellow Caringbridge users aren't either. We've heard that other users have complained and have also been refused by you. Not the way to garner loyalty.

I will make my request only once more, please take Charlotte's name off of the thermometer ad. Paying or not paying a fee for the service is not an issue for us. Having our name associated with an organization with questionable ethics is. The thermometer idea is great. Just take the names off of it and make it clear that it's for Caringbridge and not the user. It's especially confusing when the users (like us) are frequently in the middle of fundraising themselves.

In case you didn't notice, we have over 90,000 hits from about 700 independent viewers. How many more people are following other patients as well? I would say it's very bad business to piss off that many people at once.

I've been shouting the praises of CB all over the place. I even told someone about it this morning so I have not given up on you yet. Do right by us and it could be very good for you. Refuse us, and our friends, again and we're gone. Your choice. Personally, I really like CB and don't want to leave but I have discussed it with my family and we will.
Instead of forcing this on us, why not enlist our help? Obvoiusly, there is a great deal of organizational experience here.
Sincerely,
Roger Reynolds

Don't hate them yet. We'll give them a chance to work with us. CJ update later!


Alright, here it is now, your moment of Zen...

I will warn you that I have had a very long day (and two margaritas) so I apologize in advance for any typos or "crazy talk".

We made it to and through the behemoth that IS MD Anderson fairly well. The shuttle got us to the hospital without much ado and with the help of some handy greeters, we found our way to the children's clinic.

WOW! It's quite an operation. Similar in scope to the ASK clinic at MCV but even more impressive. There was a LARGE playroom and lots of books to keep CJ more than amused. While we were there, the music therapist stopped in for a session with the kids. It was well attended and Charlotte joined in the fun after some encouragement. She even got in a request for Frosty the Snowman.

The receptionists and all the staff just LOVED her bald chicks rock shirt that she wore proudly today. She made fast friends with everyone and charmed the pants off of just about everyone in breathing distance. That's our girl.

I filled out oodles of paperwork, summarizing for the umpteenth time Charlotte's birth history, health history, developmental milestones, etc. Seriously...can we not get electronic records that automatically transfer this stuff from doctor to doctor???

I also dropped a check for $2500 for the evaluation. Turns out we are out of network here in Houston so we will start paying down that $8K deductible. Thanks to the fundraisers...we couldn't be here without you!

Our appointment for paperwork was at 9:30 and our appointment for Dr. Wolff was 10:30. We made it in to see the doc about 11 am (not bad for getting squeezed in at the last minute). Dr. Wolff came in, met us, greeted Charlotte, and got the "low down" on her history and scans. He explained the procedure with the evaluation of her tumor and how the process works and then decided to send us immediately over to see Dr. Brown in the research area of the medical school. He told us to wait and that he would get us directions and then he promptly left the building...

We were kind of left in limbo land for a while but eventually got a medical data specialist to walk us over to the medical school herself (it was about a four block walk). Meanwhile, we got to hear her interesting story: she was living in New Orleans during Katrina and ended up needing to evacuate. Interestingly (still..) she stayed during the hurricane at Nicolas Cage's house (a friend of a friend) in New Orleans and then ended up borrowing his car to get out of the city since their cars were flooded out. Crazy! She ended up in Houston and hasn't been back since.

So we met with Dr. Robert Brown who is a researcher at the University of Texas Medical School. He is also a graduate of MCV (go figure!). He shared a few journal articles which he has published on this process. The official term is morphoproteomics (for any of you interested in googling it). The science behind it is pretty much beyond my capability but basically this is a VERY new and VERY experimental process used for cancers and other diseases for which typical therapy is not successful. According to Dr. Wolff, only about a dozen people have been through this process before Charlotte and maybe only one her age. The doctor will look at the tumor markers under a microscope and analyze the life cycle of the tumor. By this process, they will recommend directions for therapy which may include drugs that are off-label (i.e. they are not typically used for cancer treatment) and/or drugs that may not have been tested on children. All the drugs are FDA approved but they may not have been through clinical trials with kids.

SOOO...we basically told Dr. Brown that we wanted to move forward with things. He gave us things to ask for (more tumor slides after Charlotte's next surgery) and we headed back towards MD Anderson for lunch. We ended up at one of the many eating establishments available on this campus where there was (surprise) a Chick-Fil-A! Hooray.

After lunch, we went back up to the clinic. We weren't exactly sure when Dr. Wolff would see us again but we knew that he was expected back from a lecture about 2 PM. Charlotte resumed her playing in the playroom and we met volunteers and child life folks who helped give her (and us) some extra TLC. The highlight of the day was getting to see this girl named Bailey ring the bell for the end of her treatment. Not sure of the diagnosis but I'm guessing Leukemia or Lymphoma. She was another cool bald chick and looked to be in her mid to late teens. There was a big announcement made as Bailey came out to ring the big bell for the end of her treatment. Charlotte walked right up to see the events and even ran up to Bailey and gave her a big hug. There wasn't a dry eye in the house. Ok, well, I was bawling!!

Then we waited...and waited...and waited. Finally about 4 (or so) we got back into the clinic again and we met with one of the other oncologists on staff. He finished taking Charlotte's health history and THEN we met with Dr. Wolff again. He helped talk us through the next steps as we discussed possible options.
We learned that there are certain chemotherapy drugs that she may be able to take very soon after surgery (depending, of course, on how the surgery plays out).
We also discussed radiation options (whole head and spine vs. localized and proton beam radiation which is only available at about three places in the country...MD Anderson is one). No decisions made today, of course. All of this depends on how the surgery plays out, how the initial rounds of chemo go, and what the morphogenesis results tell us.

But here is what was made very clear to Roger and to me: Charlotte has a very dangerous, very aggressive tumor that is (frustratingly) not responding to many of the typical therapies. We are embarking on pretty much unexplored territory when it comes to therapy options but this is pretty much all we have. There is much danger of the cancer metastisizing (into her spinal fluid or other areas of the brain) and there is much danger of the cancer continuing to grow.

Slight segueway...there is an episode of the Simpsons where Homer actually tries to gain weight so he can go on disability and work from home. In his attempt to gain weight, he goes on a super fat diet and takes the family along with him. In a scene where Homer tries to get the kids to eat fat-upon-fat, Bart responds "Dad, my heart hurts!" and Homer replies, "Butter your bacon!!!"

Well here we are....my heart hurts. And not from the buttering of the bacon. Over the last few weeks, we keep digging deeper into this process and I continue to realize how grave her conditino is. The fact that her tumor is not dying despite the poison we put in her body. The very fact that we are having to resort to experimental, aggressive, and potentially dangerous medicines to keep her alive. That makes my heart hurt.

I feel this weight in my chest that won't go away and I am genuinely sad. I fought back many tears today (and a few slipped out anyway). I know that there is still hope. I know we are not at the end of the line. But I am not nearly the picture of optimism that I felt about 3 months ago. This is hard stuff and it will take me a while to process this.

Ladies and gentlemen, the eye of the hurricane is getting ready to pass. Get ready for the rest of that oncoming storm. We can't prepare for much because EVERYTHING...every step in the next part of our journey....hangs in the balance of the step that comes before. Her chemo treatment will be determined by how well she responds to the surgery. And radiation will be determined by the success of the surgery and the results of the analysis. And all of the experimental stuff will hinge on how everything else plays out. I can't plan ANYTHING anymore...

So, just to finish the story of the day: we FINALLY left the hospital at about 6:10 PM (after being there since before 9 AM) and the hotel shuttle never came to pick us up (despite 3 telephone calls) so we eventually decided to hoof it the 1/2 mile or so back to the hotel on our own. Not a bad walk and thank goodness for Google maps on our phones.

Just so we don't end on a downer, we did have a lovely evening with Roger's Uncle Tom. We went to dinner for Tex Mex (Roger and I had been craving fish tacos and, yes, Margaritas). Charlotte was a doll and was serenaded by the mariachi band. She really loved it when they played Old McDonald!!

We will leave tomorrow and journey back to Virginia. More to update later.

Rachel

Cancer Sucks!

7:04 AM
Had a great day yesterday at Romp n' Roll.

We had our "Caringbridge Open House" and had a ball. The families who came (including us) really seemed to enjoy being able to just hang out.

Charlotte had a very busy morning yesterday as she climbed down two full flights of stairs (one at home and one at church), played with friends in the church nursery and was a wonderful hostess at the CB open house.

She conked out about 3 and had a nice nap in the office while things wound down in the gym.

Her evening was not bad but the nausea comes and goes. Almost on cue with the timing of her anti-nausea meds. The worst part is that she seems to be "getting used to" the routine of telling us her belly hurts, keeping the tub near, etc...and I really hate that. I also hate that despite the medicine tasting good, she fights it pretty strongly. We have had to bribe with chocolate, Peeps, and just lately, Tylenol Meltaways. She loves them. Sometimes we give her a small piece of Tums. That will work too.

Please save Friday, April 10 for the head shaving party. We're going to use one of our Birthday Bash slots. That's about as planned as it is right now. I'll be working with our "planning committee" to get details up this week.

The hat shower is still just an idea at this point, I think. A more solid date should be coming soon. Rachel should be getting back with those details.

Wish I could think of more right now but I need to get going anyway.

8:14 AM
Mom's turn:
I don't have much to add regarding Charlotte. I agree that she is now definitely feeling the impact of the toxic medicines on her body. She is understandably tired given the fact that she has eaten very little and vomited much. I think today will be another rest day.
Unfortunately, our child care for tomorrow has become ill and cannot watch Charlotte. If anyone is available to watch Charlotte at our house tomorrow from about 8:30-1:30, please let me know. I know that some folks with kids have offered to have her come over to their house but with all her needs right now, I don't think that is a logistical option. Any healthy adults or kids are welcome at our place, though.
Anyway, I will be adjusting the care calendar. Please sign up there or email me asap.
In other news, we have received many ideas regarding the fundraising and I think we have some "chairs" in that area who will work with us. We have some ideas ourselves and will let you know. I had originally loved the idea of the hat shower but she is already being "showered" with great gifts of hats, etc. and we already have quite a collection. Have to think on that...
On the insurance front, we have also received some suggestions and ideas. I have folks with legislative connections doing some "homework" for me and I pored over our policy over the weekend and have questions for both Humana and the Insurance board which I will hopefully get answered through phone calls today.
I have to echo Roger's sentiments about the impromptu Caring Bridge party yesterday. It was small but fun and good to share stories. We are hoping to make it a somewhat regular event and hope we can add new families to the mix. We are also already talking with the Starlight Foundation about using Romp n' Roll for official "events" from time to time. Just one way that we can hopefully give back a little when so much has been given to us.
Gotta go tend to Charlotte and clean up my mess on the floor!

4:53 PM Update
Poor Charlotte! It is so true that it's the medicine, not the cancer, that makes our kids sick.
She has had a very rough 24 (or so) hours. She has been unable to keep anything substantial in her tummy (even if she wanted food) and has been very tired. The nurse called for a somewhat related matter (our insurance company doesn't have Zofran in its formulary so we had to pay for it out of pocket...go figure!). She is going to get the approval for that but in the meantime while checking in on Charlotte's condition she decided to send out some IV fluids and IV Zofran (which is what she had in the hospital and it worked well). So we are waiting for the home health nurse to come out and do her thing. Meanwhile, Charlotte is sleeping like an angel on Daddy's chest.
As a parent it's always difficult when your child is sick. You never want them to "not feel good" but it feels even worse when you know they are sick because of somethin you did to them (not just some icky bug floating around).
Did I mention that Cancer Sucks? My new mantra...
I did have some good conversations with a gentleman from the Insurance Commission today. He is helping me sort through some stuff and will help us navigate through an appeal. We also have some friends of friends with connections and we are hoping that may help our case. All a process! I have genuine faith that one way or another this will work in our favor. We will either get the insurance company to see it our way or we will raise the money (or find the money via other sources) to take care of the difference.
Kind of a good day to stay at home just because it's gloomy and there wouldn't be much else to do (except go to work and who wants to do that???)
That's it for me...