The ReeseStrong 5K and Charlotte Lollipop Kids Run is this Saturday!!!

The ReeseStrong 5K and Charlotte Lollipop Kids Run is this Saturday!!! Are you ready?If you have not registered, you still have time! You can register online through Thursday at midnight at www.reesestrong.org OR in person at the packet pick up here in Royal Glen Friday from 4-7 or Saturday from 2-4. We have 274 people registered as of yesterday!IF YOU ARE PARTICIPATING IN THE RACE/WALK - here are some things you may want to know:1) Packet pick up - Friday from 4-7pm OR Saturday from 2-4pm here in Royal Glen.2) Parking - I recommend carpooling if you can! There will be parking in the neighborhood on the streets of Royal Glen and there is a parking lot with some additional spaces as well. Overflow will be directed to a church just north of our neighborhood with a shuttle back to the neighborhood. I would shoot to be here no later than 3:30 and no earlier than 2 (we have another event in the neighborhood from 11-2).3) There will be a RAFFLE for some wonderful gifts and gift cards. If you would like to participate, please bring cash! We have restaurant gift cards, spa services, a big Longaberger basket - just to name a few...don't miss out!4) We are still in need of some volunteers - mostly to help guide runners during the race. If you can help out please let us know!This is gearing up to be a busy week. At the end of the week, I have a conference to attend in N. VA (Friday and Saturday) and then I will be rushing back here for the race. Granny and Gramps will arrive on Wednesday and we plan to immediately put them to work! Fortunately, this is a "no-Velcade" week for Charlotte. Her appetite has already picked up. She ate a good deal yesterday during her playdate at the Ferias. Lots of popcorn and chocolate milk. Then she came home and ate even MORE popcorn and chocolate milk. This morning, she ate 3 bowls of cereal! Now she is resting but she was up and awake at 3 AM (as was Roger...thanks, dear).I am hoping that maybe we are "over the hump" of this syndrome and maybe another week will have Charlotte back to normal. We have a visit with Dr. Khan on Wednesday. Plans are kind of up in the air for Saturday's race although we have every intention of having Charlotte there for the big day. Roger and I had a very nice date yesterday. We had planned to do dinner and a movie but we just ended up going to a LONG dinner and talking and then missed the movie times so we used the opportunity to walk off our huge meal and do some window shopping (and a little actual shopping) at Short Pump Mall. Gotta get a move on before the day runs away...Rachel

Here’s your epic Part 1

Here’s your epic Part 1:On Thursday, July 30, Chicago White Sox pitcher Mark Buehrle pitched a perfect game. He had to rely on a mindblowing defensive play from one of his teammates near the end but he did most of the work. In the Sports Illustrated article that chronicled the event, writer Lee Jenkins put the feat into perspective this way (the best way to put any great baseball moment into perspective) - with stats:In baseball history, starting in 1900 as far as most historians are concerned, there have been 263 no-hitters but only 18 perfect games (27 up-27 down). That’s out of 779,118 starts which is .0023%!That’s pretty special and worth celebrating. I’ve been officially amazed by it and have been thinking about it a lot, lately. I mention it here because it has kind of framed my mindset recently. I’ve been narrowing down the things I’ve been celebrating lately, trying to get the most quality out my everyday experiences. I’ve been loosely following the various sports I like and trying, as always, to find new musical wonders but the sports have been slowly fading in my mind the last week or so and I’ve ramped up by musical exploration. I’m going to miss most of the UM/FSU football game tomorrow and I’m ok with that. Yeah, I know, sacrilege! I have, however, discovered a new appreciation of older singers/instrumentalists I used to not be able to stand. One being Judy Garland.My seemingly incoherent babbling has a purpose. Last week, we thought we had a pretty good handle on Charlotte’s cancer, her proton radiation treatments (conducted at world renowned MD Anderson Cancer Center in Houston, Texas) were over, we were all finally home and ready to begin the rest of the customized chemotherapy developed by researchers at the same MD Anderson.We got a call from the folks at MCV confirming an MRI appointment scheduled for early Wednesday morning and we just assumed it had been ordered by Dr. Kahn or Dr. Tye since we had an appointment in the Nelson Clinic later that day. There we go assuming again.So I scoop up Charlotte early Wed morning and we go get an MRI. As usual, when they’re not familiar with a patient, medical professionals tend to make their own assumptions and when the anesthesiologist mentioned starting an IV in CJ’s arm, I said, “Oh no you’re not. She’s got a central line.” The doc said, “We still like to have it available. We’ll do it while she’s out and cap it before she wakes up; she won’t know a thing.” I was confused as to why they would need to do this and told him I really didn’t think that was necessary. They’ve never done that to her before. Finally I showed them her Hickman double lumen (sp?) line and the lightbulb went off. I can’t tell you all how many times we have had to head off doctors and nurses diving for the needles. Shouldn’t these things be written down in her chart somewhere? I will say for the thousandth time (I’m sure it’s not the last) be your child’s strongest advocate!I also saw the Klauers before they got started. (congrats on Reese’s clean MRI!)After they took her in, I took the time to head up to the 7th floor to see one of our Romp n’ Roll employees, Lindsay, who got into a car accident and was recovering on the “older kids’ ward” of the 7th floor (that’s the infamous ward where CJ caught the nurses lying to her about medication in her chocolate milk).Lindsay’s hand was seriously injured and she’ll be undergoing several surgeries in the next few months. Her whole family has had a very bad run of medical situations in the last little while so they could use a boost of positive energy. If you would like to help Lindsay, or more importantly, her mother Laura, let us know here and we’ll pass it along. They don’t have a CB site yet but I’m pestering them to start one.So I found out Lindsay was hanging in there and headed back down to the recovery area. I timed it just right and they were just bringing her out when I got there.CJ woke up without any complications and after a little chocolate milk, we headed down to eat, where else, at Chick-fil-a! We met a woman expecting her second child (a surprise baby!) and we talked a bit. For some reason, I found it very refreshing to talk to someone who was at MCV for a very different reason than us. Her situation, risk for gestational diabetes, was almost novel (although I don’t want to belittle it at all). It’s just that is was nice to talk to someone about something other than cancer for a change.Next we went to the Nelson Clinic and signed in nice and early. Charlotte settled in with a few books and I pulled out the laptop. When they called us in, after vitals, we popped a DVD in the player and waited for mommy and Dr. Kahn. Mommy arrived not long after we went in. Dr. Kahn’s timing was kind of bad. Charlotte normally jumps for joy when she sees Dr. Kahn but this time she was so engrossed in the DVD (Strawberry Shortcake) that she didn’t want him to come in.It actually wasn’t a problem because, much to our consternation, we were greeted with complete surprise when we told him about the MRI. “You had an MRI this morning?!?” So off he went to look at the MRI real quick.Here’s where everything starts getting mucky. Dr. Kahn came back in after a little while and says that after looking at this MRI and the post 3rd surgery MRI, he can see there have been changes. Here’s your insight into the world of “Dr. Speak” for these types of situations. When they say “changes,” they don’t usually mean changes for the good. He couldn’t find the July MRI we did at MD Anderson, (they probably never sent one to MCV) so he didn’t have that one for comparison. Compared to the May MRI, parts of the cancer have grown. The thing is, it might be that the cancer grew more after the May MRI and the latest MRI might show that it has actually shrunk since then. If so, that’s good and we can hope the updated chemo protocol (which seemed to have a positive effect earlier) will finish the job.If the three MRIs show steady growth even through the proton radiation treatment, well, that’s bad. Very bad. The other thing is, Dr. Kahn only had a small amount of time to look at the scan and Dr. Tye wasn’t even a part of the conversation, so there was very little information to be had which made us feel like we were being left in the dark. That’s not the best state in which to leave our fertile, imaginative minds. I actually had the stereotypical “kicked-in-the-gut” feeling you hear about and the “all over body ache” was back.It certainly wasn’t what we had hoped or expected. Did the super hi-tech proton radiation, the hottest thing in the world of cancer treatment, work at all? Was the time in Houston a gigantic waste? Did we do all that for no reason?We felt so down for a bit that I didn’t talk about it with anyone I didn’t have to.The next day, Rachel was feeling sick with a cold so we switched Romp n’ Roll shifts. I went down in the morning to help with camp and she came in the afternoon to do Open Gym (less chance to get kids sick).Gotta admit, camp was rockin’! We had 20 kids all doing mostly what we wanted them to do. The co-op band pics on Facebook are a testament to that.Here’s also where my new appreciation of things really shows up. The co-op band “event” is not something that will change the world, just like a perfect baseball game won’t, but it was something that will be hard to match and, I think, worth remembering. I keep looking at Charlotte in those incredibly precious moments I get to spend with her and trying to devour everything about her. Every moment with her is a bonus that I cannot adequately describe in words and I want to remember them. I want to sear them into my memory no matter what happens.After camp, Charlotte and I went back down to MCV to see Lindsay and her mother, Lauren, who, despite being in a wheelchair at the moment, has been staying with her at the hospital. The night before, Charlotte drew her a picture of some food which we presented to Lindsay when we got there. Then we popped in Finding Nemo and they watched it together on her bed. Once CJ was settled, I went back down to the Nelson Clinic to be the proverbial squeaky wheel to make sure things were in motion as far as the July MRI was concerned.When I went up to the window, I thought I clearly explained to the woman at the reception desk/window that I wanted to leave a message for Dr. Kahn, making sure the MRI ball was rolling. She was obviously distracted and not listening to me and was confused about why I was there. “No I don’t have an appointment, I just want to leave a message for Dr. Kahn.” When I saw him through a window, I mentioned, “There he is right now” and she became defensive saying that he was with a patient and he wasn’t available. She also made me feel, and not for the first time, that I was somehow imposing on her by being there. I sometimes get that vibe from the other receptionist as well; almost like we’re kids being pulled into the principal’s office for breaking some rule. I can only think that the “normalcy” we’ve mentioned before that comes after being/working around very NOT normal circumstances for an extended period of time has clouded their perception of why they (and the parents with whom they interact) come to the Nelson Clinic in the first place. Just lately, I’ve been a lot less reluctant to let people know what I think (not that I was that shy before) and I may be something of a problem parent if I feel something needs to be said.Anyway, after getting the message straight, she took the piece of paper on which she was writing back to Dr. Kahn and of course, he came right out to talk to me. (In my mind, I’m childishly sticking my tongue out at the receptionist. It’s amazing what you’re reduced to in these times.) He told me he had talked to Dr. Tye and that he concurred with Dr. Kahn’s opinion. About the July MRI, he said the best thing I could have heard: Joanne is working on it. We’ve mentioned her before. Joanne is Dr. Tye’s right hand nurse and she is a force. If she’s on it, it will get done.After that, I felt a little better and went back up to Lindsay’s room. They were still watching the movie and I, unfortunately, had to do the nasty trick of skipping a few scenes to get the movie to end. We had an invitation to meet with the Randolph-Macon College Women’s Field Hockey team at the end of practice and eat dinner with them. We were getting to the point where if we didn’t leave very soon, we would be seriously late.The drama was minimal, though, so in a small amount of time, we were zooming north on 95 towards R-MC. We got there just as practice was ending and we got to meet the team and “warm down” with them. Charlotte was being her typical shy-at-first self but I was coaching everyone how to ask her about her favorite colors, her age, favorite restaurant, etc…and before too long, she was opening up a bit. At dinner in Estes Dining Hall, she sat in my lap and kind of didn’t want to do much but I needed something to eat, so I asked the girl sitting next to me to hold Charlotte while I ate something. CJ was ok with it and the girl happened to be Lindsay Walker, one of the co-captains of the team. I’m not sure what it is about Walker (as everyone calls her), but Charlotte just fell for her. She snuggled up to her and they seemed to bond very quickly. So I ate and it was pretty good.I also got to see a couple of old students of mine from when I taught there which was really great. I certainly miss it. Maybe someday…Rachel was still not feeling well by Saturday so I taught her morning class. Fortunately, she at least got to come by to see everyone since it as the last class of the session. It was nice because some of the kids will be going to preschool or taking a break until spring and it will be a while before we see them again. Big changes can take place in that amount of time.We all headed back home for a bit to rest and recuperate before CJ and I had to leave for the season opener for the R-MC field hockey team. We got there just before the half and stayed through the rest of the game. I’ve talked about the rest. It’s a great thing the Friends of Jacyln organization does.Somewhere in all the mess, Rachel and I had one of THOSE conversations. It was in Chick-fil-a with Charlotte sitting beside me eating her chicken strips dipped in Barbeque sauce. We had both been stewing over the last conversation with Dr. Kahn, thinking dark thoughts, and going through worst-case scenarios in our heads. I think one can’t help doing that sometimes and I do it all the time no matter how good things are going. I actually it’s one of the things that has helped me cope so well so far.So there we are in Charlotte’s favorite restaurant, speaking practically about “what-ifs.” By far the most morbid but functional conversation we’ve ever had. Neither of us is the kind to shy away from difficult subjects and we both think it’s wrong to not think about possible outcomes simply because it’s hard to face. Denial has wreaked its own havoc on the world throughout history. I know, so has “the sky is falling!” mentality. Try not to worry. We’re definitely not there yet.In our various conversations lately, we’ve established that when CJ was first diagnosed, she was in the 80%+ survival rate category. When the cancer grew through the first couple rounds of chemo, we figure she dropped down to maybe 60%. If the scans show growth through the radiation, she reaches the 50% or less group. These are horrible things for a parent to have to think about but we wanted everyone to know where we are right now. We’re not good. We’ve had some very difficult days since last Wednesday.We have by no means given up hope. All this darkness is mostly because of what we DON’T know. We’re actually kind of mad at MD Anderson because everyone was supposed keep everyone else in the loop and it didn’t happen with the July MRI. Having to wait for MD Anderson to get the scan to MCV is the worst thing right now. Who knows, the scan could show all kinds of progress. We just don’t know and of course, that’s where most fear comes from, right? Fear of the unknown? As before, if we had clear answers/options, we wouldn’t have nearly the stress level.This is actually only part of what I want to write but it’s already overwhelming to read. I’ll post another update later. Please keep the positive energy flowing.Love,Rog

Fighting a cold

There really isn't much to report but I'm so addicted to this Caring Bridge site that I have to write something before I go to bed...The biggest news is that now I'm fighting some kind of cold/bug. I don't think it's very bad and I'm (hopefully) coming off the worst of it already but last night I was achy with a sore throat. At least no fever. I didn't sleep very well but Roger was very nice to me and went in to teach camp (I was supposed to be on morning shift). This allowed me to sleep and convalesce a bit, especially since Charlotte slept till after 10 (!!!).We went down to Romp n' Roll at about noon and took Roger over to Chick-Fil-A for lunch. Charlotte has become quite the "regular" around there and they hadn't seen her for a while so Tim (one of the manager/franchise trainees) and Linda (another adoring fan) took extra good care of us today. Then we did the trade-off and I went to work while Roger took Charlotte down to MCV to visit our employee Lindsey.I don't think we have had the time to update everyone on Lindsey. She is a Patrick Henry high school senior who has been working for us at Romp n' Roll since the beginning of the summer. Anyway, she's having a rough week (to say the least). Her dad was in a bike accident on Friday and then SHE was in a car accident on Monday and has a crushed hand that will require multiple surgeries. Otherwise she seems to be ok but Roger has been able to go by and visit her twice now and today she and Charlotte brought a movie that they watched together. Please add Lindsey and her family to your prayer list!! While at MCV, Roger did some "nosing around" just to see if there was any progress. The only news is that Dr. Tye also saw the scans and agreed with Dr. Khan with what they saw on the MRI. The ball is in motion to get the July scans from MDA. That's all we know.From MCV, Roger took Charlotte over to RMC where they met the Yellow Jacket Field Hockey Team that has recently adopted CJ as part of the Friends of Jaclyn Foundation. They had dinner with the team at Estes Dining Hall and Charlotte really seemed to bond with some of the girls. It will be fun to have her involved in their games. They were all wearing Charlotte bracelets and gave her lots of positive attention. Thanks to all of you for your thoughts, concerns, and messages in the past 24 hours. Roger and I are dealing with the ambiguity as best we can right now and doing as best we can to keep our spirits up. It's a very bizarre time for me right now emotionally and I can't really describe it. So I won't even try. Lots of thoughts in my head. Some good. Some not so good. Just be patient with us if we seem distracted or not really in the mood to talk about it. I guess that's mostly where we are.Signing off so I can get some sleep...Rachel

The word of the day is inconclusive.

The word of the day is inconclusive. I don't like that word. Our day started early and has been pretty hectic. The MRI went off pretty much as planned after some early insurance confusion. Also, for some reason the anesthesiologist didn't realize she had a central line and wanted to give her an IV. Fortunately, Roger intervened!! Once the MRI was done, they headed up to the clinic. I taught my 3 morning classes at Romp n' Roll. It was great to see the kids and my great staff again! I met up with Charlotte and Roger about 1 PM and Dr. Khan came in to greet us a little after 1:15. Overall, he is impressed with her progress. We went over all the vitals (eating, sleeping, pooping, etc.). Talked about the H1N1 stuff. She can get a regular flu shot but cannot get the H1N1 vaccine due to her suppressed immunity so don't be surprised if we are ultra germophobic and hermetic in a few weeks/months. This may be the first year we all get flu shots. We don't normally and none of us ever get the flu. I think she's due for a few other vaccinations as well (that she should have gotten at her 4 year well visit) but they may have to wait.Now to the MRI results: First of all, Dr. Khan was kind of surprised that we had an MRI today, which was kind of weird. We thought HE was the one that scheduled it. I am not positive but I think that this MRI was scheduled a long time ago (before we went to Houston) and was never taken off the books and then it just coincided with our return to Virginia. In any case, he looked at the scan and compared it to the scan from her post-op MRI on May 29th. Unfortunately, they don't have the July 14th MRI from MD Anderson. We thought they did. The problem is that the MRI does show growth from the May 29th scan to today's scan. Dr. Khan needs to know, however, if there was MORE or LESS growth in the July scan. If there was a progression from May to July but there has been less growth (or stabilization) between July and now, that is good. That means that radiation, chemo, something is hopefully working. If there is more growth now than there was in the July scan...well...that's bad. Really bad. Unfortunately, Dr. Khan didn't have much more to tell us today but we did discuss starting her new protocol next week and we are hoping to have some answers from MD Anderson (the July scans) by the end of the week. Roger and I are frustrated and disappointed. This is definitely a case of "no news" NOT being "good news". You all know how much I hate ambiguity in these situations and the fact that there wasn't news of LACK of growth in any way is a pretty bad omen to me. In the meantime, I need to try to focus my energy on something productive as there is MUCH to do. Unpacking, organizing, making PT/OT appointments. Lots to do.Since my post last night, we have realized that our neighbors decorated their mailboxes and porches with pink and purple ribbons and balloons. Our house was decorated as well. The "welcome home" was very touching. We also found some food that had been "mysteriously" left in our refrigerator and I understand more is on its way this afternoon. Thanks! Roger is off to work for the evening and I'm here with the princess. We'll keep you updated as we know more.

Facts about Proton Radiation and an Update

Some fun facts about Proton Radiation:

1. The first attempts to use proton radiation for cancer/medical treatment began in the 1950s but it was only in the last decade that it has become possible to develop proton beam facilities in conjunction with established medical centers.

2. Radiation is delivered through large gantries. Each gantry weighs 190 tons, sits three stories tall, and is 35 feet in diameter.

3. 2/3 of the proton therapy center is build below ground level. The walls are 8 feet thick and 50 feet high. A 20-story building could be constructed with the amount of concrete poured for the proton therapy center (and it's only 3 stories tall!).

4. The equipment for the machinery weighed 1600 tons when it arrived from Japan at the Port of Houston and it took a 31-truck caravan to bring it to the construction site.

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On a more personal note:

She's had a good day. She did start losing her hair today. Lots of little hairs on the pillow this morning when she woke up. It's falling out in little bits and clumps, and there is obviously not a whole lot to fall out anyway.

The major issue of the day seems to be getting her accutane prescription filled. For those who do not know, Accutane is usually an acne drug and it is HIGHLY dangerous to unborn babies. Causes very severe birth defects. For that reason, any female of childbearing age who is on the drug must be on TWO forms of birth control AND must take a pregnancy test each month. In order to prescribe the drug, physicians must be registered through this system called iPledge and you can't get the prescription except through an approved provider. Furthermore, as a patient you have to register on this iPledge site. If you're of childbearing age, you have to take a test so that they know that you understand the risks of pregnancy, etc. Obviously, we don't have to do that for Charlotte but we do still have to follow all the other rules. Well, we ran into a few glitches trying to get her prescription refilled here:

Glitch #1: The prescription was originally written in VA under Dr. Khan so in order to transfer the prescription and have Dr. Wolff write the script, I had to go on to the iPledge site and transfer to Dr. Wolff as my primary doctor. It took us forever just to figure out that we had to do this.

Glitch #2: When Dr. Wolff went in to approve me (well, Charlotte) as a patient, he couldn't find her in the system. We worked on this all day (in and out of treatments) and while the system kept telling me my application was in process and awaiting doctor approval, Dr. Wolff couldn't seem to find Charlotte as his patient waiting approval. We were lost in cyberspace. It only took me coming back to the clinic after radiation and both of us getting on the telephone help line with the iPledge folks to get it resolved.

Glitch #3: I took the prescription to the MD Anderson pharmacy to get it filled. At this point, it was after 4 PM. They said if I wanted the prescription compounded into liquid form (I did) it would take almost 2 hours. So we headed back to RMH to wait. Meanwhile, Charlotte ate some dinner and we've been relaxing. I go to call the pharmacy about quarter to 6 to see if it's almost ready so we can walk back to MDA and the pharmacist tells me that she tried to call me (obviously called the home number which doesn't help much) and the insurance is not approving the prescription. No idea why since they approved it before. It may be because we are trying to get it compounded into liquid form. Needless to say, it will cost $300+. Basically, I don't care about the cost at this point, I just want the meds. She says, "Do you need this today?" and I said, "YES!!!". She didn't get her morning dose and I'm not waiting any longer to get this stuff into her. So she said it would be another hour...or so. Sheesh.

So we will be heading back over to MDA in a bit. At least the weather will have cooled a bit so we can walk. Fresh air and exercise will do us good.

Otherwise, everything is ok. As ok as it can be. Thanks for all the positive vibes and support we have been getting. It really means a lot. One step. One day at a time. That's all I can do. Dr. Bitsko called me this morning and we talked so that was helpful. One more day of treatment till the weekend. And two more days till we get to see DADDY! Yay!

Another Good Day

Another good day...except NO POOP (I feel like I'm becoming a broken record).

She slept in again this morning and barely got up when we were jetting off to the clinic. Had a nice walk over to MDA and they got us in almost immediately (plus we were early!). Dr. Wolff spent a great deal of time with us following up on things. We are still trying to track down the MRI that Joann sent so while we were talking with Dr. Wolff, he zipped an email off to Dr. Khan, Joann, Dr. Mahajan...pretty much anyone involved in her care...trying to track down the MRI. Also found out that she should have been on the accutane over the weekend. Again, typical hospital miscommunication where we thought we were waiting for the meds to be compounded and they assumed we would give it to her ourselves with our stash. I told him we would start giving her the meds this afternoon and he wants to see us again tomorrow to get the Accutane situation straightened out. He also said that he wants to get her blood drawn at least 3 times a week instead of just once per week (just in case). He was concerned about the non-poop issue and wanted to order an enema. He said I could give it myself but I didnt' feel comfortable doing that for multiple reasons:
1. I'd never given her one myself (just witnessed and assisted the nurses when she'd had them before) AND (more importantly)
2. I don't need her associating MOMMY with any more negative procedures.

The only problem was, we were only about an hour away from her proton radiation time and they didn't want to give her an enema and then have her "lose it all" on the radiation table. That could cause a whole host of problems. So we left with an appointment for 8 AM tomorrow and a prescription for lactulose which she started this afternoon. Fortunately, she took all her meds (the accutane went in the applesauce and the lactulose went into the chocolate milk) so we're good for tonight. Who knows. Maybe she'll poop before tomorrow (we can only hope...)

After the clinic, we headed over to proton center and didn't have to wait TOO long. They only took her 15 minutes late today. That's progress. Unfortunately, someone was celebrating the end of their treatment. Good for them, I guess, but there was food EVERYWHERE in the lobby. Charlotte didn't seem to mind but I really just about lost it when this very chatty woman who was waiting for her husband came over with cookies and some kind of pudding in her hand. She not only offered food but when I politely told her WHY Charlotte couldn't have any food, she continued to hold the food in front of her face and engage me in a huge conversation about her life. Oh joy. No offense to her, but I didn't really want to hear her life story and I REALLY didn't want her hanging food in front of my daughter's face (or mine for that matter since I was hungry myself).

Sometimes I really understand Charlotte's seemingly antisocial behavior. She's really not antisocial, per say, but she definitely likes her alone time. And I can totally understand that. Sometimes it's nice just to sit there with a book or a puzzle and not talk about cancer or medical treatment, or...whatever.

Anyway, after she was called in to the gantry and put to sleep, Grandpa and I went to get her prescription filled and get me some lunch. We timed it all just right and came back to find her in recovery. We were out of there by four pm. I think that's a record.

We came back to the house and she took all her meds (as mentioned) and ate some good lunch/dinner. Now it should be my turn for dinner soon. Rumor has it Ronald McDonald is coming to visit tonight!

Update:

POOOP!!!!

Yes, ladies and gentlemen, Charlotte has pooped. Maybe the lactulose finally kicked things into gear. (Plus all the "prayers for poop"!) It was kind of small (considering the amount she's consumed in the past week) but NOT hard (yay) and things are finally moving again. Maybe we can even avoid the enema tomorrow. See what the doc says.

She also ate even more tonight, having some cheese, chocolate milk, and bread crusts from the garlic toast (she likes the crust, not the soft middle). She watched the Ronald McDonald magic show from a distance but didn't want to get a picture with him or meet him.

On a slightly concerning note (it's always something, ain't it?), she is having trouble bending her knees. She's refusing to bend down to pick anything up or bend down to be changed. Have to check again with the doc about that. Apparently, pediatric PT services are hard to come by at MDA so I'm not sure what we can expect.

Have a good evening, y'all!!

Rachel

A Journal Post from Rachel

So I realized that I hadn't done a journal post in quite a while, so here it is...

Life without hubby and daughter is surreal, kinda lonely and VERY quiet. I'm definitely busy with work so when I come home I pretty much just veg out in front of the TV or on Facebook or something brainless like that.

It's funny how much longer it takes the dishwasher or laundry basket to fill up and it's SO much easier to keep the house clean (especially when nobody is living in it). It helps that my parents and Kolbey did a major house cleaning while we were in TX so I came back to a sparkling pad (thanks).

I have really appreciated all of the kind words and support that have come to me through emails, facebook updates, folks stopping in at romp n' roll, etc. I've had invites out and meals cooked for me (thanks, Beth!) and I am really feeling nurtured and supported. That is great. I think I am also (finally) accepting the fact that it is OK for me to take some time to do NOTHING on occasion. That's not a natural way for me to live my life but constant stress will help you realize how important a break from work and daily activities can be. I'm learning how to "treat" myself and put myself first every once in a while. As any mom can tell you, that's not an easy thing to do.

Yes, I'm still sad. The news of the week was definitely not a morale booster. This cancer keeps hanging heavily over our heads and our hearts and it still makes my heart (and body) ache. I am convinced that we are in the right place and I think of all of the fortuitous events that got us here:

If Charlotte had been older, we would have started radiation immediately (rather than waiting and starting chemo first). If that were the case, we would most certainly have stayed at MCV and probably would never have explored the option of proton beam radiation. It probably wouldn't have even hopped up on our radar (yes, pun intended!). By going the chemo route first, we have been able to see how aggressive and mean this tumor is but it has enabled us to connect with the amazing doctors at MD Anderson. I am grateful to Dr. Khan for his knowledge, experience, and connections to such a fabulous facility. I don't think we would be in Texas right now if it weren't for him. Also, while it's hard to be away from each other right now, I think Roger and I have now developed a better rhythm in terms of how we are dealing and coping with this event on our lives and that makes the separation a little easier right now (as opposed to six months ago). Yes. Tomorrow will be SIX MONTHS since her diagnosis. We have reached the half year mark.

I just want to segue for a moment and brag about my husband. Yes, he is a GREAT DAD. You all know that and helped to get him the recognition he so deserves. He is also my partner, my teammate. We've been married for almost 12 years and we've been together for almost 15 years. That's a long time. We don't always agree and we frequently drive each other crazy but I could never imagine my life without him and we wouldn't be dealing with all of this as well as we are without that strong bond. I just wanted to take a moment to get "mushy" (as Roger would say) and acknowledge what a great person he is and what a great team we are.

Ok, collective: AWWWWWWWW....

I must switch gears, close up shop, and get ready to go to work. My next "day off" from romp n' roll will be in a week. When I will be in Texas. Crazy life we lead....

Rachel

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

Happy Birthday to Charlotte!

Happy Birthday to my Beautiful Baby Girl, my Monkey Butt, my 'Mater (she was born during the Hanover Tomato Festival), Zazou the Amazing Can Can Dancing Creature (long story)!

Today will be one of those ultimate special days. We get to meet former Redskins football players at the clinic (OK, it's more for Daddy than CJ!), we get to see a concert at Chcik-fil-a with great music, great food, and Star Wars characters walking around. Really, the 501st Star Wars Regiment will be there for pics and all!

Charlotte will be there for a little while, not sure exactly how long, "Big" Rompy (strangely Daddy sized) will be there as will a parade of folk/bluegrass musicians. Bring your "axe" and someone might let you jump in! Music should commence at about 5:30pm

Romp ' Roll will be open for free Open Gym starting at 5:00pm so if you want to take a break from the festivities, come on over!

Mommy and Daddy are giving her a kid-themed digital camera because she was showing a definite interest in taking pictures earlier. Good occupational therapy as well. (SHHH! Don't tell Charlotte.)

THEN!!! The big O' Birthday Bash on Friday at 6:00pm! Charlotte's official party ar Romp n' Roll. EVERYONE is invited. There will be enough cake for both the Hatfields and the McCoys (Chek yer wepuns at the door). Don't bring presents, just love and an appetite for cake and pizza.

Concerning the trip: we are getting our appointments lined up bit by bit and we've found out that Monday the 13th will be a simulation run to give everyone a chance to organize exactly what's going to happen. Then she gets an MRI on Tuesday and then...nothing until NEXT Monday. That's right, they say they need a few days to plan everything so we will be doing just chemo at that time. (JUST CHEMO?!?!)

We have a temporary place to stay until an official agency comes through with an appartment thanks every so much to our guardian angel, Meredith, for getting that going.

I've contacted the Washington Nationals and the Houston Astros about covering the Sunday game between the two. (Why not multi-task while we're down there, eh?) If it happens, I'll let you know where to hear/read it. Most probably WHAN 1430AM on Monday morning.

Update:

What a day! Busy and good...and did I mention BUSY?

My day consisted of a haircut, many errands, and then off to Romp n' Roll to work.

Daddy took CJ to the clinic where they got to meet some retired Washington Redskins. Charlotte actually got to hold a Super Bowl ring in her hand. I'm not sure who was more excited about this visit (Charlotte or Daddy) but I think the icing on the cake was when the football players sang "Frosty the Snowman" to Charlotte in honor of her birthday. Our nurse (April) was back from vacation and everyone made a big deal out of the birthday girl's big day. She got a present from the clinic (wrapped in SNOWMAN paper...too cute!). And, of course, Charlotte got to see Dr. Khan (her favorite doctor). Rumor has it that the moment with the football players was captured by WTVR and was on the news but I haven't seen it yet. Couldn't find it online.

In medical news, we have our first appointments for next week so things do seem to be lining up. We are in email communication with our nurse practitioner out there and the Houston Angel Network is coming out in full force. We continue to get messages from people who know us or know of us and are helping us make connections for ANYTHING we might need in TX. I know that we will be well cared for.

Our local Angel Network is hopping too. The concert was a success. God served up some beautiful weather, Chris Fuller and Charles Arthur played their greatest hits, Childtime had some fun kid's crafts, the 501st Brigade was there (Darth Vader, Storm Troopers, even an Obi Wan Kenobi) taking pictures to raise money for charity. I even saw a few storm troopers directing traffic! The Star Wars group raised over $200 for Charlotte PLUS, Chick-Fil-A donated 10% of the evenings proceeds to us (a little over $100) PLUS over 23 people donated blood today! Yay! Even Rompy got in on the action and came to visit all the kids.

Our biggest Angel of the evening came in the form of plane tickets. I am not sure if this Angel wants to be acknowledged yet so I will let her remain anonymous, but let me tell everyone that almost ALL of our remaining plane tickets for travel to and from Houston have been bought and paid for. We will only need to purchase Charlotte's and my return trip at the end of August (and we just don't know the date for that yet). What a gift! What a blessing!

So 36 hours from now, we will actually be IN Houston (that's scary!!). I've got a lot of packing to do and before that we are going to party like it's on sale for $19.99. Romp n' Roll: be there or be square. 6 PM. We may have to call the Fire Marshall :-)

Gotta run and be productive (oh and rest...)

Rachel

A Really Good Day

Today was a really good day for everyone, I think. We made it to church and then spent the afternoon catching up on various projects. I worked on some RNR stuff and even wrote a few thank you notes. Roger watched some tennis and golf and caught up on some emails, and Charlotte pretty much entertained herself with books, drawing, and (her new favorite) toting around daddy's shoelaces which she removes from his shoes. At least it's good OT practice.

We had a lovely dinner at the Smokey Pig (thanks to Gramps) and just got back.

We asked Dr. Khan if it would be possible to postpone the TX trip so that our first day in clinic (even though it wouldn't be the first day of radiation) would be the 13th. This would make coordination on all our parts much easier. He did email me back to say that would be fine. SOOOOO....here's the plan:

We WILL have the Rompy's Summer Concert Series on July 9th at 5:30 in the Chick-Fil-A parking lot. Give blood at the bloodmobile in Charlotte's honor (if you can...they'll be there from 3-8 PM), bring some non-perishable food for the food bank, or just come out for a good time. The weather and the music should be GREAT.

We WILL have her birthday party on July 10th at 6 PM as originally planned. Tinkerbell theme. NO presents. Everyone come to romp n' roll and wear pink and/or purple. This will be her big sendoff.

We will plan to leave for TX sometime on the 11th. I am looking into flights right now. We have a few folks investigating some free options for us too but if it doesn't work out, Roger and I will have many other opportunities to take advantage with our new "commute". I will try to help get everything and everyone settled over the weekend, stay for the first day of everything on the 13th, and then catch a flight back either late on the 13th or early on the 14th. We will switch sometime on or around the 25th of July.

So now Roger and I need to get travel plans together, make lots of packing lists, figure out where we will stay while in TX, etc. etc. etc. Please be patient if we are minimally responsive to emails, etc. at this time.

Granny and Gramps plan to stay in VA until after I return from TX so that will help with the transition too.

That's all for now. Her comes Monday. What a week this will be!!!!

Rachel

Charlotte made her "Wish"

The last couple of days in the Nelson Clinic have been much smoother. We've been calling in ahead to give them "warning." Dr. Kahn wasn't there today so we didn't get to ask our latest questions but nurse April promised to corner him this afternoon and make sure he addresses them.

Saw Nile and his mother today. He was furiously playing video games in the waiting room. He looked pretty good.

Also saw Reese's Mom. She was back and forth taking loads to the car in hopes of going home. Hope it happens soon.

There were others we passed here and there who we knew or at least knew CJ. Drs., nurses, parents, staff. I actually am starting to really hate the fact that we know so many people there. As I like to say to those we meet, "Not that I don't want to see you but I sure wish it was at Ukrop's or something."

Charlotte is resting comfortably and watching Big, Big, World. I'm starting to notice "the look" creep back in. She's smiling a little less and looking more tired. Fortunately, the nausea and other problems haven't materalized yet. I'm sure they will be by soon. She's still eating so that's good. No poop for a couple days now. Can't be long as the topo-stuff is supposed to make her stool very, very loose.

Can't beat the weather the last couple of days. Tomorrow should be more like normal - Hot, humid, and icky.

Make-a-Wish is coming by soon so we'll be one step closer to that.

Phyllis is upstairs ripping carpet out of the closet. I didn't know there was anything left to do! We've got an electrical project for Grandpa next time he comes up. Our hall light looked like it needed a bulb so we tried to get the cover off to change it. I don't think we had done anything to that fixture in a very long time and it sort of fell apart when we finally got it loose. It's salvagable but I don't do electricity so Dad get's to! :-)

Got to chop a little wood yesterday. Might run out and grab some wood from a neighbour who just cut down a tree.

The business front is looking a bit better. We hit our overall membership goal, which earned the staff an ice cream party, and our Awesome Adventure Party promo is cooking along with great vigor. We've booked a large number of parties as far forward as mid-late 2010! There are some other great things coming up that will amaze and mystify you! :-) Stay tuned.

The Home-Based Business Bazaar is Saturday at St. Anne's Catholic Church from 10am-2pm.

Update:

So Charlotte made her official "wish" today. The Make-A-Wish ladies (Toni and Emily) came by to visit. Emily helped us fill out the "grownup" paperwork (releases and such) while Charlotte and Toni chatted it up. She told her that she wanted to go "Where Annette and her kids went". When probed for more clarification, Charlotte said "Minnie-Land" or "The place where the princesses are". AKA: Disney World! It was definitely her wish and her decision. Roger and I are both excited as well. We are tentatively looking at a winter date (Dec/Jan/Feb) to be solidified once radiation is over and we have a better idea of how her treatment plan will play out. We will get to stay at Disney for about a week and we will stay at the Give Kids the World hotel. It is a resort on the Disney property that was started by a man who wanted to make sure that kids with medical needs could have a great Disney vacation. They have a doctor and nurse on staff and (word has it) you can get ice cream sundaes 24/7. My kind of place. I think they also have characters who visit the hotel from time to time. Did I mention I'm excited? We are basically not getting a vacation this year (surprise) so this will be something special to look forward to. Once we have dates, anyone who is in the immediate area (or anyone who wants to travel to join us) is most welcome. I know we have a pretty big Florida fan club.

In other news, our nurse at the clinic called back with the answers we had about her protocol so that was cleared up. She will start a new medication next week (temozolamide) and will only be on the accutane till Sunday. Dr. Khan assured her that he is working on the insurance "stuff" and will update us when he has more news.

Charlotte is playing it pretty low key right now but managing to keep herself busy. She needs to poop but otherwise seems fine. She's gnawing on a HUGE apple as we speak. As Roger mentioned, we are getting ready to be pretty germophobic as her counts will soon plummet so be aware that playdates will be kept to a minimum.

Granny and Gramps will arrive tomorrow (hooray) and we will be on the official countdown to her birthday. Can you believe it's two weeks away?

Remember: two upcoming events for her birthday

1. The Summer Concert Series on July 9th (her actual birthday) in the Chick-Fil-A parking lot. Come out for the concert, donate blood, and bring food for the food bank.
2. Her birthday party at Romp n' Roll, Friday July 10th, 6 PM. All are welcome! We will have cake and some assorted food goodies, we'll put up the moonbounce and let the kids (and grownups) P-L-A-Y. No presents, please. We just want to celebrate HER! OH and the theme will be Tinkerbell. Charlotte wants everyone to wear pink and/or purple to the event so come decked out.

That's all I have to report for now. Some very good news.

Rachel

Her Protocol

Very quick update,
We're going in for the latest LP (spinal tap) this morning and hopefully we'll get to talk to Dr. Kahn about the next move.

If everything goes smoothly and there are no complications, Rachel and I are headed to the Capital Ale House to see a favorite of ours VINX! He's a percussionist/vocalist who was discovered quite by accident when Sting was passing by a club where VINX was playing. Sting heard the very cool music, pulled up short, and went to listen. He eventually produced VINX's first album. I stumbled upon it in college and Choosy Mama from his second album, "I Love My Job," has been used as sort of a theme song in our family.

Tomorrow is the award ceremony at Chick-fil-a at VCM and I think it would be very cool if the fire marshall closed the place down due to too many people! Just a thought. I'm actually feeling a little apprehensive about the LP today. Hope I can celebrate/appreciate it properly tomorrow

Gotta go wake up the princess.

Update:
We are back from the clinic. We were only there for 6 hours today. Sheesh. At least we got some answers.

First order of business was the spinal tap. They asked us to be there by 9 just in case anesthesia was ready early but they weren't so the spinal tap didn't happen until about 11 or so. Let's all remember that Charlotte had had nothing to eat since about 8 PM the night before and had to be NPO for the anesthesia. She really didn't complain too much but as soon as Charlotte was "out" Roger went downstairs to nab some (what else) Chick Fil A.

Speaking of which, y'all come on out tomorrow at 5:30 to the Chick-Fil-A at Virginia Center Marketplace to honor our Great Richmond DAD! Yay!

Back to the story...so as soon as they gave her the sleepy juice, she was pretty much out of it. It was hilarious to watch her engaged in converstaion and then, midsentence, to just flop over and go to sleep.

After the tap, we waited for her to rouse. Dr. Tye and Joanne came by to check in with her. Dr. Khan had taken out her stitches while she was out for the spinal tap so her head looks GREAT. Then Dr. Khan came back with (drum roll, please) her protocol. They are looking at starting some oral and IV medications on an outpatient basis for a few weeks. She will be on Accutane (yes, the acne drug), Topotecan (she will have to have this via IV 5 days a week in clinic because of the dosage needed), and eventually Temozolamide (another oral med). All of these meds carry their own share of side effects, all similar to many of the drugs she has been on before. The goal with all of these drugs will be to neutralize the malignant properties of the tumor (the Accutane does this) and stop the tumor growth.

We are also going to try to get her back into a somewhat regular PT/OT schedule in the next few weeks.

Radiation is tentatively scheduled to start mid-July and will be for 6-8 weeks. Pending results of the spinal tap (and assuming it is clear), we will start to coordinate with our new hospital for radiation. We agree with Dr. Khan that while many of the long term benefits of proton beam radiation are not well known (mainly because it is such a new therapy), it is worth the effort and risk given her age and all the potential benefits. He is going to work on checking with insurance and participating hospitals. She will actually stay on the other three chemotherapy drugs throughout radiation and then will continue them after radiation as well. There is a road map laid out week-by-week with all of the different drugs and when she takes them.

At this time, we don't have high dose chemo on the plan but we have to see how the tumor reacts to radiation and some of these other agents. Potentially, she could be on these medications for up to two years before treatment would be "done" BUT if we are "just" dealing with outpatient meds and an infusion or two, that is definitely more do-able than constant hospitalizations. That is good news in my mind.

In other news, as we realized that we now have a treatment timeline, we figured that we can now plan the Princess's birthday. while we were waiting in clinic, we discussed dates and I think we are going to have a party on July 10th (a Friday) sometime in the evening. Charlotte decided that she wants to have a Tinkerbell party with an ice cream cake and she wants to have the party at Romp n' Roll. So here's your official invitation:

EVERYONE that would like to come is invited to celebrate Charlotte's 4th birthday on Friday July 10th at 6 PM at Romp n' Roll. We will have ice cream cake and some food. Please no presents. This is not a fundraiser and we don't need any gifts. We would just like everyone to come out and celebrate. Hope to see you there!!!

In other event news, the Home Based Business Bazaar will be at St. Ann's Catholic Church in Ashland on June 27th. This is a great opportunity to find that perfect gift or get your Christmas shopping done early. Many home-based businesses including Pampered Chef, Arbonne, the Happy Gardener, Avon, PartyLite candles, and others will be represented and will be donating a portion of their sales to Charlotte. There will also be a silent auction.

Also on the calendar is the NEXT Rompy's Concert Series on July 9th (Charlotte's actual birthday) at Chick Fil A/Romp n' Roll. Chris Fuller and Charles Arthur will entertain and we will have the blood bank there as well as a collection for the Central VA Food Bank.

I think that's it for now. Roger and I need to get freshened up for our date with VINX. Very exciting!

I feel a huge weight lifted just to have some answers and know that we will begin treatment tomorrow.

Rachel

Every Day is a Bonus

We keep having big days but I guess they can't help but be big when every day is a bonus.

Yesterday morning as I was getting Charlotte ready for our day, I noticed something odd on her belly and found it was a tick! Rachel and I tried to get it out but it was embedded pretty deep so we resolved to get professional help.

So we went to the vet! I mean, who is better at dealing with ticks than a vet?

Well I actually had a breakfast meeting with Cate Newbanks from FACES of Virginia at the diner formerly known as Pete's and CJ tagged along. The tick wasn't going anywhere, the vet is literally right around the corner, and she wasn't showing any symptoms of anything, so we had a very nice breakfast. Charlotte had pancakes (surprize!)

We went to the vet right after breakfast and although they were sympathetic, they weren't comfortable working on a human. The chemicals they use on animals aren't appropriate for children.

So I called the pediatrician and they fit us in as soon as I got there. They weren't incredibly busy right at that moment so it was convenient for everyone. We saw Dr. Map (not kidding). I don't think I had ever met him before. Charlotte wasn't very interested in cooperating with anyone who had a stethoscope around their neck so I had to pick her up while Dr. Map worked on the tick.

It took a moderately long time and CJ was quite the champ despite her anxiety. We counted to 20, sang the ABC song, and spelled her name. I could tell it hurt a little as she counted/sang/spelled through gritted teeth but she didn't stop. I was very proud of her.

We didn't quite get through "Reynolds" when he announced success. He got the head, hooks, sucker and everything.

For the record, Dr. Map recommended Vaseline or nail polish to get the bad boy out. Unfortunately, we had probably killed it with our attention so it wouldn't have worked for us. It's a very bad year for ticks already so everyone check each other thoroughly after being outdoors. (I have the image of monkeys grooming each other in my head.)

So after that, we ended up at Romp n' Roll to bring lunch to Mommy who had taught the morning preview classes.

That, by the way, has been a tremendous success attendance-wise. Very exciting.

I left CJ at RNR with Rachel and came home to do some work. Aunt Phyllis came in from Florida (Rachel and CJ went to pick her up at the airport) so we have our latest in-house support person. She wasn't here an hour before the reorganizing glint came into her eye. She'S REALLY good at that sort of thing.

Then I headed back to RNR to teach my evening previews. The posters for the concert series came in and man! do they look great!

Today is another big day with a meeting with Drs. Kahn and Chung at MCV to discuss latest protocol options (we had a deep, emotional discussion about that last night), Camp, and the 1st Concert Series concert (which might be moved indoors due to weather. Either way, it'll be a hoot with Clay Mottley and the Taters!)

Rachel and I will be first in line at the blood mobile which opens at 3pm.

As always, we'll update everyone as to what we decide for our next step. Our positive energy need level is back up orange. That indicates a higher level of need for thoughts, energy, prayers, meditations, visualizations, puppies, kittens, balloons, chocolate, ice cream, chocolate ice cream, etc...in other words, we're feeling kind of down right now.

Not necessarily important to tell us. Just do it. Please.

One thing CJ is not lacking is cuter-than-all-getout clothes. They just keep appearing. And we keep putting her in them. She keeps being cute.

While I mentioned the amazing things going on throughout the CB community, there are still many sorrows being handed out. Please keep those in your thoughts too.

Thanks,
Rog

p.s. For those not connected to us via Facebook, there are several with which we are associated. Rachel and I both have our own, there's Get Well Charlotte, and Romp n' Roll at VA Center. The last two you need to "become a fan" to join. Just in case you didn't already have information overload.

Update:
Rompy's Concert Series is currently rockin'! The Taters and Clay Mottley are jamming inside romp n' roll. There was a threat of some summer storms so we moved the concerts inside "just in case". Sun is shining all the same but no matter. We've had a great crowd and lots of fun!!!

In addition, over 25 people have given blood at the bloodmobile today (include Annette, Michael, Babz, and myself). Roger tried to give but his blood kept clotting up...oh well. Final count on the blood drive is 25 came in, 19 gave and 2 of the 19 gave a "double dose" through a special system where they can get double the usable blood without completely disarming the donor.

Thanks again to everyone for coming out for the fun!

So, I'm sure everyone is chomping at the bit to find out the "news". Well....let's just start by saying it was one of the more frustrating trips to the hospital. We were told there was an appointment at 12 PM with Dr. Khan and Dr. Chung but we were supposed to meet up on the 6th floor (neurosurgery). We did as we were told and finally about 1 PM met with a DIFFERENT doctor who didn't really know why we were here.

FINALLY, Dr. Chung arrived but while he claimed to have been following Charlotte's case and be "in the loop" about things, he didn't seem to be able to tell us much about what we would do for Charlotte's specific situation. We asked him about proton beam radiation options and again he was pretty nondescript and didn't seem to have an opinion or much information. Basically I got a "Radiation 101" tutorial but nothing specific with a timeline or other information regarding Charlotte's treatment plan.

Finally, I was pretty abrupt and asked some pointed questions about 1) Where Dr. Khan was in all of this and 2) Why we weren't getting any answers when we had felt this HUGE sense of urgency since the news of tumor regrowth for us to get things DONE. In short, he couldn't really help us and he tried to page Dr. Khan. After about 2:30 (yes, we had been there since NOON), we settled on going down to the clinic to search out Dr. Khan and see if we could reschedule and/or find some answers.

Once we got down to the clinic, I explained why we were there and they got Dr. Khan for us. Apparently there was a wonderful series of miscommunications. Dr. Khan wasn't planning to come to the meeting while we were expecting him and (blah blah blah). I expressed my concerns and he was very understanding. Here is what I HAVE learned:
1. Dr. Khan just received the new protocol from Dr. Wolff at MD Anderson. They have some new ideas and information which he will share thoroughly with us once he reviews it and gets some clarification/follow up questions answered (hopefully by Monday).
2. Charlotte will have a spinal tap sometime next week (probably) to insure that there is no tumor cells in the spinal fluid. She will also probably start some oral chemotherapy next week (based on the protocol).
3. Based on this plan, it looks like MD Anderson is recommending localized radiation which Dr. Khan is thinking towards proton beam radiation, mainly because it offers the best chance at minimizing harmful effects of radiation while allowing higher doses of radiation to be used on the tumor. Of course, now we are going to have to figure out WHERE we will get the radiation done because it is only at certain places in the country. MD Anderson is one option but we know that they are out of network for our insurance. We might be able to find an "in-network" option.
So that's where we are. We don't have a lot more answers and it was a rather frustrating day but at least it's a tiny step in the right direction.

I gotta go clean up the gym and head home so I"ll sign off...

Rachel

Staying Busy, Fundraising Update

Charlotte had a great day yesterday and a very good am this morning.

Yesterday consisted of CJ going out and about with Aunt Amy on her last day here. They went to lunch at (guess where?) and then Barnes & Noble's to read stories and play with the train table, then back to (guess where?) for milk shake shakes. Then they came home and hung out here until Rachel and I came home.

Rachel worked at Romp n' Roll and I went around putting up posters for the concert/blooddrive. I was getting it done pretty well until I got a call from Rachel letting me know there was something wrong with the AC. So I headed home to gather up the fans and then to the store.

One side seemed to be working properly but it's not enough for the whole store so the art room was sweltering. We called the AC company and they're supposedly sending someone out today. Sure hope so.

So I got to go back out to deliver some more posters/flyers to friendly local businesses.

Then it was back to RNR for our big staff meeting to tell everyone about the new BIG IDEA! which is a new level of Birthday Bash called an Awesome Adventure Party and the accompanying promotional offer.

I feel it was a great meeting I was pretty excited about things afterward. When we got home we just chilled the rest of the evening, talked to Aunt B on the Hopecam, watched my one television guilty pleasure (Primeval from the BBC) and went to bed at a relatively normal time.

This morning, Amy left :-( and CJ and did all kinds of stuff. We took Noah to the vet to check on the gash on his head and get his shots current, we went to the Ashland Library to vote and got to hear a little of storytime with Jamie, Larson, Alexander (but not Bob) and the Morris family, found an amazing book called, Imagine A World with some very good perspective pictures kind of ala Escher, stopped off at the Randolph-Macon College Bookstore to pick up bracelet money (almost $400! And of course they fawned all over her), and then went to Ashland Breakfast and Lunch because CJ wanted pancakes. Unfortunately for us, they don't serve breakfast past a certain hour. BUT! They pulled out the batter just for Charlotte and she got a couple of pancakes! Thanks to Renee and all there.

Now we're home waiting for Mommy to come back from the first day of camp! From what I heard, it was tremendously successful. I have to cover front desk for an hour or so and then teach a couple of our Week-Of-Free-Preview classes.

The weather for the first concert on Thursday is looking like there might be an isolated t-storm here and there so bring an umbrella just in case! Shouldn't be enough to drive us inside but we'll be ready just in case.

Well Rachel is here so I'll sign off. Just letting you all know the initial response to our Amazing Birthday Bash deal has been very strong already.

Keep cruizin' the CB sites. There are lots of amazing stories goin on!

Rog

Another busy day! I spent the morning at Romp n' Roll camp. Our staff was awesome and the kids had a great time! The summer is off and running.

We finally got the AC fixed (hooray) so all is well with the universe again. Not too much damage (physically or financially) so that is good as well.

We wished Aunt Amy farewell as she returned to her family in Ohio. Amy and I met in grad school at ASU and while we haven't stayed in very close touch since graduation, we have certainly remained in each other's hearts. I sincerely value her friendship and it was so good to see her again. (HUGS to you, girl!)

Charlotte has been rather moody the last week or so. Her independent streak has been very strong lately. She has definitely preferred more independent (rather than social) activities and even seems to shy away from some social engagements. I certainly don't blame her. Sometimes I think the attention is a bit daunting. We're just trying to read her moods and let her take things at her own pace.

We have some new information regarding our treatment direction. We will meet with Dr. Khan and Dr. Chung (the radiation oncologist) on Thursday to go over some options for radiation including the timeline. Dr. Khan also indicated that he is in communication with Dr. Wolff at MD Anderson and we should have a report from them soon.

Meanwhile, I thought I would take some time to give some thanks and offer some updates on our various fundraising efforts. Since our first "official" fundraiser with the Head Shaving Party, we have had over $14,000 raised on Charlotte's behalf. This includes money raised for:
o Prayers for Charlotte Bracelets
o the Head Shaving Party (over $5K!)
o Everything But Water and Five Below events (still waiting to receive some more money from the additional Five Below sales)
o 50/50 raffle at the Ashland Coffee and Tea concert
o Qdoba Burrito Eating Contest (final total on that event = $975!)
o Glen Allen Golf Fundraiser
o A bake sale at Trinity Church in Fredericksburg (our "old" home church) organized by the Middle School Youth
o Pancake Dinner held by the Middle School Youth of St. James the Less
o Money collected from various kid's birthday parties in Charlotte's honor (in lieu of presents)
Not to mention the various, random, and very valued donations that have come to us from friends, family, and strangers. Some, like the Head Shaving Party, are rather large. Other fundraisers have produced small sums but every little bit counts. We have paid out plus or minus $10,000 already in medical expenses and travel expenses for Houston.

We are also incredibly grateful for the gift cards for restaurants, cooked and prepared meals, small gifts, and homemade treasures that have found their way to our home. All of these things have helped make our life a little easier at this time. I'm just saying this now because I know that some of you have received personal thank you notes from us. Some of you will probably receive more down the line. And some of you will never receive an actual "card" that says THANK YOU. But please know that our "attitude of gratitude" (as my step-dad likes to say) is ever-present at this time. We are so grateful to our friends, family, customers, the community of Ashland, and all of those people around the country and the world who are supporting us at this time.

If our treatment regimen continues as we think it will, there will be more medical bills (thanks to idiotic insurance). Each round of high dose chemo and bone marrow transplant stands to cost us (out of pocket) up to $10000 so you get the picture.

Not to mention that anything that might be "left over" when all is said and done is going straight into the Foundation that Roger is developing. More on that to come but let's just say that we are already working on ways to "pay it forward" when we're done with all this mess.

Word on the street is that Make A Wish will be coming our way to interview the "Princess" in late June. We will see what she has to say. When we asked her where she would want to go if she could go ANYWHERE she wanted, she said "Carter Park" (which is the park in our neighborhood). All we tell her is to DREAM BIGGER...MUCH BIGGER!

So some big events coming up in the next few weeks:
On the treatment end, we will hopefully get some new direction on dates for radiation to start. That will likely be outpatient for about 6 weeks.

Fundraisers:
o Come on out to Rompy's Summer Concert Series this Thursday for Clay Mottley and the Taters. 5:30 PM at Virginia Center Marketplace (in the Chick-Fil-A parking lot). As Roger says, we're collecting "Food for the Food Bank, Blood for the Blood Bank and $$ for CJ's bank" We will have another concert on July 9th and ANOTHER on August 20th so if you miss the fun this time, there will be more fun to come.
o The Home-Based Business Bazaar will be June 27th at St. Ann's Church in Ashland. Come out and support some of our friends from Pampered Chef, Arbonne, Avon, Happy Gardener, and MORE. They are selling their wares and donating a portion of their proceeds back to Charlotte. A silent auction will be held as well. Start your Christmas shopping early!
Finally, some folks have asked about Charlotte's birthday (yes, it's ONLY a month away!!!). First of all, she does not need ANY presents. We have a house full of goodies so gifts are completely unnecessary. Any celebration that will be had will be a complete and total celebration of her and her LIFE. We have not made any definite plans yet and we may just gauge things based on how she is feeling and where her treatment regimen is in about a month. It is very possible that we may delay her "official" celebration by a few weeks. As usual, we will keep you updated.

Ok, so that's all I have to say for now. I have a boat-load of paperwork to siphon through and as it's already almost 9 PM I can only imagine how un-productive I will continue to be. Sigh. Where does the day go?

Signing off...
Rachel

We are Here in Houston

Well, here we are in Houston, TX.

The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!

Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.

I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.

When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!

We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.

Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.

So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:

I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....

I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)

So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.

When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.

I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.

In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)

ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.

I think that's all we have to report for now.

Rachel

A Lot to Consider

Hi all,
Feeling very beat at the moment. There are a lot of questions and we have some things to consider.

The good news is that her blood counts look GREAT. Everything has come up where it needs to be.

Dr. Tye does want to attempt another surgery. Given that her brain has had time to heal since the last surgery, he should have a better view of the tumor and will hopefully be able to get as much as possible. The odds of defeating these types of tumors are greatly increased when they are smaller. Obviously, the risks of surgery (coma, seizure, blood loss, weakness or paralysis, etc.) are there and were discussed. We also talked about the option of getting a second (or third) opinion and we got names of colleagues/peers at UVA, DC Children's and Johns Hopkins with whom we could speak if we want to go that route. If we don't feel the need for a second opinion, she could have surgery as early as May 13th (next week). Roger and I are currently weighing these options.

On the oncology side of things, Dr. Khan met with his former supervisor and mentor at MD Anderson Clinic in Houston, TX. They have a new method for treating PNET that would probably benefit Charlotte. What they do is take samples of the tumor and treat it in the laboratory with multiple agents to determine the "best" method of treatment for her specific type of tumor. Instead of using a standard protocol, she would get a customized treatment just for her tumor. This tends to work better in cases where the tumors are "ill-behaved". Here is how it would work: Once Charlotte was well enough to travel (but before we would need to begin chemo/radiation), we would travel to Houston and they would see Charlotte as well as get a set of slides with the tumor on them. That part of the process would take just a day. We would return home and within about two weeks, they would develop a treatment protocol for Charlotte which would involve some combination of radiation and chemo. They would share this treatment plan with Dr. Khan and we would proceed from there (with her continuing to get her treatment at MCV).

Meanwhile, in all of this we "lost" Mickey Mouse. We accidentally left him in the lobby of the clinic and by the time we realized he was missing, he was gone. Kinda interesting because he had a name badge on him with her name on it. Anyway, we have already received a "loaner" Mickey and are probably getting another one very soon thanks to some Disney connections (thanks Annette!). Just one more thing to slam us down while we're already on the ground. Roger's pretty upset about it.

Anyway, hope everyone is enjoying the weather. It is GORGEOUS. Roger and I have to get to work and we will update everyone as we know more.

Rachel

We are strongly leaning on this option. We just have to consider timing, logistics, and the reality of leaving our business for about a week's time.

Right now we have a lot to think about and we let everyone know that we would consider our options and let them know on Monday.

MRI Results

I apologize in advance for our lack of update. It's been a busy 24 hours (or so).

VERY excited to see that there are at least 12 contestants in the burrito eating contest! Hooray! Come on out and support these crazy eaters! That's wonderful!

Yesterday was a busy day all around. Charlotte was active and feeling pretty good most of the day. Her methotrexate level was about 2.1 which is good (it has to be .01 before they can start the next part of chemo but usually after "day 1" it was around 3.). That means her body is flushing the "stuff" out of her at a good rate. They were monitoring her blood pressure for a little while as it seemed to be high...BUT then she pooped and the pressure seemed to drop back to normal. Again, hooray. Her appetite was good yesterday and she ate lots of fruit so I am sure that helped.

Auntie Retta visited in the morning and brought mom coffee and yogurt for breakfast. YUM. She and Charlotte played some Candy Land and we all had some good visiting time. Granny arrived at the hospital around noon. We took a few walks, went to the playroom, and she was in a very "artsy" mood, drawing and doing collages with stickers. I understand that the rest of her day was very active as well.

I left after signing the consent for her MRI today and headed over to Romp n' Roll where things were hoppin'. It was a very busy afternoon and evening with our registration event. Lots of fun and we didn't stop until after 8 PM!! It was good to see many of our regular customers and a few new faces as well. Lots of people asking about Charlotte.

Roger and I got to spend another night together. That is a rarity these days so we try to appreciate it. Now it's off for another busy day and a weekend ahead.

Many of you have commented to us about hoping that the MRI will show shrinkage of the tumor. Interestingly enough, my understanding from Dr. Khan is that we really don't expect a lot of shrinkage during the first stages of chemo. They just hope not to see any additional or new growth. Today they will be looking specifically at her spine to make sure that none of the remaining tumor has spread to other areas of the central nervous system. Until she starts the high dose chemo, they do not expect the tumor to die and/or shrink. Kind of depressing when you think about all that she has been through and how this really doesn't do much (visually) to solve the problem but I know and trust that this will be the right thing for her.

Gotta go get ready for a busy weekend. Can you believe it is May already? When we started this process, it was cold, wintry, and January. Now there is green everywhere and flowers in bloom. And we're starting to think about summer. Crazy!

OH an update about the cruise: I think we are pursuing options for a 5-day Disney cruise that will leave out of Port Canaveral (Florida) sometime in Mid-June 2010. There are more details to come but start to think about whether you and your family would be interested. We know that not everyone will be able to go but Charlotte would love to celebrate her recovery with you on a Disney Cruise! I've already got an idea brewing in my head for t-shirts...

I'm sure there would be some kind of initial deposit but the balance would not be due until April of next year so you have a year to save for the big event. We are working with our travel agent on this and will distribute more information when it is available.

Happy Friday!

Rachel

Charlotte went in for her MRI at about 12:30. I got to the hospital just in time to see her off into the capable hands of the radiologists. She was really funny when they gave her the "sleepy juice". As we may have mentioned before, it has about the same effect as a fast acting cocktail. So true to form with most of the women on my side of the family, she's a "fun drunk" (Roger can elaborate on that) :-) Anyway, she was very giggly and talkative and cracking up me and Granny.

Granny and I went upstairs to wait. She had a pretty good night from what I understand and slept well. Much thanks to Granny for staying with her and giving me and Roger a break.

She came back from the MRI still loopy but has since had some juice, most of an apple, and most of a hot dog. Now she's in Backyardigans Land (at least she's branching out from Dora).

No report from Radiology or Neurology yet about the MRI results but I did talk to Dr. Massey for a bit about her current levels. It looks like Potassium is good again but her Vitamin D is low. Not surprising because the chemo tends to deplete this nutrient a lot. Combine that with the fact that she isn't getting her normal daily dose of "outside" and we have low Vitamin D. Apparently we need to watch this pretty closely as long-term studies of kids with these kind of treatments sometimes result in low bone density down the road. So she'll probably get started on a Vitamin D supplement in addition to her multivitamin regimen.

The subject of radiation was once again broached as well. Looks like this will be even more of an inevitability. As she gets older and we see how the chemo progresses, they will tighten the plans for her protocol but since we weren't able to get 100% of the tumor out and the PNETs tend to be very aggressive, I think they are already looking forward to what type of radiation protocol we will need to consider. I don't have any more info on that yet but I'll find out and you (our loving fans) will be some of the first to know :-)

That's all I have to report for now.
Rachel

Big PS: (and the whole reason I signed on in the first place)...

The Fundraiser at Everything But Water (Short Pump Town Center) has been postponed until May 17th. More info to come soon.

Ok, folks...not so good news:

We got the MRI results back. The long and short of it is: the tumor is growing. It seems that the chemo has not done anything to stave off the growth of these cancer cells. PNET tumors are, as Dr. Khan says, "Notoriously Ill-behaved". And this one is no exception.
SOOOO...what does this mean, you may ask?
We are stopping chemo for now (no sense in putting her through more of this if it's not working). She will go home tomorrow. We may still see her counts drop a bit but hopefully not as much since she didn't get the full round of chemo this time. We will be back in the clinic next week to check levels. We will also have a consult with Dr. Tye next week. He is out of town at a conference this week but has spoken with Dr. Khan and while he has not seen the scans, they are already talking about the possibility of another surgery to debulk as much of the tumor as they can. This would be probably two weeks from now (we have to wait for the chemo to completely get out of her system and for her levels to come up). They have to weigh the pros and cons of a third surgery that will remove as many cancer cells as possible vs the risks of surgery, etc.
Whether or not surgery is an option, the next step will be RADIATION (yes, indeedy, we are there). It will probably be pretty localized (not full head or spine) at this point but probably about 30 days worth. This could start as early as four weeks from now (if no surgery) or later if she has to have surgery. This should be outpatient but just about every day.
And then we reassess and probably jump at that point to the high dose chemo. Hey, at least we're not in a time crunch to get the insurance company to agree with us now (see, I can see the bright side of things....)
Needless to say, this has been very disappointing to me. Roger knows the "scoop" but did not have the advantage of seeing the scans. We will get to meet with Dr. Khan again on Monday to go over questions, etc.

In good news, Charlotte has been in great spirits all day. Thanks to Granny's conversations with the nutritionist, we got some extra strawberries ordered for her and she ate them ALL (not to mention all the berries granny brought yesterday). She also had a visit from Lisa Branner (the Marketing Director at Qdoba who is organizing this great burrito eating EVENT on Sunday). She brought Charlotte chocolate ice cream (YUM!) dinner for me (YUM YUM!) and stayed and talked for a while. She actually got here while I was meeting with Dr. Khan so it was good to have someone to talk to immediately after taking in all this bad news.

Charlotte is deep into her sticker collage creations and made pictures for Lisa AND Dr. Khan. Now it's Dora Time. Anything for this Princess, that's for sure!!!

HUGS and Deep Breaths to everyone. May the prayers for healing continue.

Rachel