I'm thinking (hoping) we've made it over the hump.

I'm thinking (hoping) we've made it over the hump. Charlotte's appetite seemed to come back with a vengeance yesterday. She was eating and drinking a LOT and she only had a two hour nap yesterday. We continued the fluids overnight just to be safe, but I think we will skip them tonight. She ate two chicken strips from Chick Fil A, about 3-4 bowls of cereal, some fruit, a few cookies, and LOTS of chocolate milk and apple juice. I hope that this means that the somnolence syndrome is fading.We go in to see Dr. Khan tomorrow and I'm sure they will run numbers as well as take a look at all the other vitals. We just got a letter in the mail today telling us that her MRI has been scheduled for early morning on Friday, November 7th (a Friday). The countdown begins!She had a busy day at Romp n' Roll today. Roger stopped by with her in between running errands while I was teaching this morning and she decided that she wanted to stay. She didn't participate a lot in classes. In fact, Ms. Annette ended up becoming Charlotte's personal reader but then we went home for a mid-afternoon nap and came back to RNR this evening for princess class and two for 2's. She participated to the best of her ability and it's been good to see her trying.I heard that the ReeseStrong 5K got a great plug this morning on Lite 98 by Bill Bevins! What a great connection for getting the word out. We are very excited about the weekend's activities and it looks like the weather will cooperate.Big today tomorrow, including the arrival of granny and gramps!That's all for now,Rachel

No new growth

Good News!!!!I just got off the phone with Dr. Khan. He (finally) got the scans from MD Anderson. He and Dr. Tye looked at them and he also spoke with Dr. Wolff. They all concurred that there does NOT seem to be any new growth. Any abnormalities, swelling, or growth that appear in the MRI were either there before or may be a result of things settling after the radiation. Furthermore, they believe that with the addition of the new drug (Velcade) to her protocol, we should just continue with things "as-is" and do another MRI in about 2 months (around the first of November) to assess progress. Yay!Can I say it again? YAY!! Huge weight lifted off our shoulders.We have had a VERY busy week between long days at Romp n' Roll, shuttling Charlotte to her many appointments, and the day-to-day business of life. Charlotte and I made it to the second half of the RMC Field Hockey game and then we went with them to Estes (the dining hall) for dinner. Charlotte wore her team jersey and hat and all the girls were excited to see her. It was a very fast-paced, intense game that went into overtime. Their opponent (Christopher Newport University) is outside their conference and pretty highly ranked so the fact that they lost in overtime, while kinda sad, was VERY GOOD for them as it means they are improving and ready to take on some of their conference opponents. Good luck, Macon girls!!! We will miss their next few games as they are all "away" but looking forward to their next home game in October.Even with the hectic schedule, it feels really good to be settling back in to the closest thing I can consider a "normal" life these days. Charlotte has been hanging out at Romp n' Roll more and that has been a blessing. It's great to see her participating in classes, playing with kids, and being a "kid" again. I think that's it for now. Granny (my mom) is on her way to Virginia right now. In fact, her plane may have already landed as we speak. Uncle Kolbey picking her up from the airport. It will be great to have her visit for a few weeks. Got to get back to work but I'm sure we'll have more updates soon. 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

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.

We're BA-ACK!!!

We're BA-ACK!!!A quick update before we all collapse. This has been a LOOOONG day. Charlotte slept in this morning (till after 10!!) while we cleaned up and packed up our room. We took three boxes to the post office (one of which we sent media mail as it was full of DVDs and books!). We came to Texas with three suitcases and left with FIVE (not counting our carry-on totes, the stroller, and the car seat). I have never traveled with that much stuff in my entire life! Actually used the skycaps!We said our goodbyes to our friends at RMH and I think Charlotte was a little upset by it all. She didn't want to say goodbye so we just said "see you later". All our recently made friends have carepages or caringbridge sites so I think we will all be able to keep in touch. I'm hoping a bald chicks reunion will be in the works within the next year. After some lunch and our final checkouts, we headed to the Museum of Fine Arts for a few hours. We only got to see about 1/2 the museum (I guess the second half will wait until next year) but it was one of the best collections of contemporary art I've ever seen. Very creative and interesting art (plus some "weird stuff"). There was also a beautiful collection of Indian, Korean, and Indonesian art. After that we headed to the airport. We went to turn in the rental car but had so many bags that the Hertz agent just drove us to the terminal to drop us off. Checked the bags, made it through security in record time, and grabbed an early dinner at Wendys in the airport. Charlotte was great on both legs of the flights. Roger saw one of the pilots waiting to board before we left Houston and mentioned to him that we were going home after finishing her radiation. As the plane landed in Atlanta, one of the flight attendants announced "One of our youngest passengers, Charlotte, has recently completed her cancer treatment and we are really proud of her". Everybody clapped, including Charlotte. Yes, we're not really done but that's ok. It's an accomplishment all the same.We had to wait for the stroller on the jetway after both flights so Charlotte waved at everyone leaving the plane and worked on her best flight attendant "buh-bye". We had a very short layover in Atlanta (less than 30 minutes) and both flights were uneventful. We arrived back in Richmond where the temperature is a LOVELY 60-some degrees. SWEET. The outside feels like the indoors in Texas felt the whole time we were there...It's late and it's dark but we already know that our house (and possibly our neighborhood?) has been decorated in anticipation of Charlotte's welcome home. Thanks in advance for the welcome wishes! We are looking forward to seeing everyone in the next few weeks. Unfortunately, we will hit the ground running. Tomorrow will be another long day. Roger will be taking her in early for the MRI, I will be going in to teach in the morning, and then I will meet up with them in the early afternoon to (hopefully) get results from Khan and Tye. Plus I have no idea how long it will take me to unpack, go through mail, and just kinda settle back in. I know everyone wants to see us (and Charlotte). Patience please! We can't wait to reunite with everyone. More updates to come!

A Difficult Day

"There are two ways of meeting difficulties: you alter the difficulties, or you alter yourself to meet them." --Phyllis Bottome

It's been a rough day. Plain and simple.

First of all, it's hotter than Hades here. Heat index was WAY over 100 today and we spent as little time outside as possible. No walk, no exercise for me.

Her appointments went well. The clinic was VERY busy. The busiest I've ever seen it in the lobby (standing room only). They did get us in pretty quickly, though. Then we just waited for Dr. Wolff. Her labs look pretty good. White blood cells are low but everything else is looking ok. So as long as she doesn't get a fever, we're still good.

Had to run through some rigamarole trying to get her Accutane prescription renewed. Still haven't filled it yet but I should be able to do that tomorrow.

We left the clinic with JUST enough time to wait for the shuttle, jet over to the proton center, and go right into radiation. Second day running on time. We're going to get spoiled! And after today, her time bumps back to before 1 PM! Yay! That will mean (hopefully) earlier time slots and less time NPO.

We came back to the RMH and she has been watching movies most of the afternoon. She got a great care package today from Aunt Kimmie with some new horse figurines to play with and some new videos so she's in 7th heaven at the moment. Didn't eat much (one corn dog bite and some chocolate milk...that's it!) but she had a poopie. Second day in a row for that!

Now to the tough stuff. I got onto the MD Anderson website last night to check some reports. One of the great things about MDA is that all of her medical reports get posted online and we have access to it. We also have all her appointments and can cancel, reschedule, and request appointments as well as contact anyone on her medical team. It's a really great website. Anyway, I knew that Dr. Wolff had been able to compare the post-surgery (May 29th) MRI with the MDA (July 14th) MRI (finally) and had taken it to the tumor board on Monday. Low and behold, he had posted a report.

And I quote: "The images from May 29th and July 14th were compared and reviewed....Some of the tumor lesions which had been left behind after the surgery became smaller during that time but there were new contrast enhancing lesions and leptomeningeal disease which appears to be new. This has to be judged as a mixed response-progression."

So what that means in lay-person terms is that while it looks like some of the tumor left over from surgery actually got smaller (yay) there are new tumors/lesions forming and the cancer has most definitely spread to the spinal fluid (NOT yay). Dr. Wolff and I had quite the talk about this today. He is still confident that the proton radiation will help shrink the current tumors; however, he realistically does not believe that radiation alone will be enough to fight this. We are looking at a cancer that grows very quickly, very aggressively, and is starting to spread into her spine. Not good. He mentioned a new drug (Velcade) that is used as a chemotherapy agent with many patients who have resistant tumors and this will probably be an option after radiation. We will continue to push the Accutane and possibly Topotecan (we can alternate the two every two weeks) during radiation and then revise the protocol following radiation to include a new mix of meds (some of the latest ones and maybe the Velcade).

It is so hard to hear this. It is so hard to know that while some of this treatment is working, it may not be enough. This is a very tough battle. I have always been a very positive person. Those of you who have known me a long time know that I pretty much try to see the glass as half-full. Always try to put a positive spin on things. And I am stubborn. I rarely give up (to a fault, I'm sure!). But every time we get a report back on an MRI, I keep getting knocked down a peg or two (or ten). Hope is there. Faith is there. But it is a weak candle that threatens to be dowsed at every turn. Here we are back in the middle of the hurricane and my tiki torch is getting drenched.

Please keep the prayer cycle flowing. Please keep the positive energy up (for me and for Roger...and for all of us). And just understand that I may not be the happiest person right now. I live life one day at a time. No faster....Perhaps I will feel differently tomorrow. Today it's a difficult day.

Thank goodness I have an appointment booked with Dr. Bitsko already for my return next week. And my "spa visit" is next Thursday. Much needed, don't you think?

On a funny note, I called the MCV clinic today to try to get Matt Bitsko's email address and check in with him on this issue (I seemed to misplace his email address) and the person that answered the phone said, "That person no longer works here." WHAT????? was the only thing I could say. Since when? What's going on? I didn't recognize the voice or name of the person answering the phone but he said someone from the office would call me back with more information. I just about went into a panic attack. Well, I decided to call Matt's voicemail (I did have that number) and just as I reached it, my call waiting beeped and it was the clinic calling me back. The same person was on the phone and apologized saying that he had gotten confused and had misspoken. Holey moley! Don't tell a woman in crisis that her therapist is no longer available!!! That's just WRONG!

So I guess that's really all I have to report. Sorry for the downer of a post. If you need a laugh, just go to yesterday's and look at the "funny Charlotte sayings" post.

I will add one more that I forgot: Another "latest thing" is that when we go somewhere, she always picks what animals/toys she will bring (usually Mickey but sometimes one other item) but she ALSO decides what I get to bring (mom, you get to bring the tiger and the snoopy!). Oh, gee, thanks. While I'm not already schlepping around the portable DVD player, your favorite books, diapers, and all the other accoutrements and necessities, I need my own stuffed animals, apparently. Ha! I have told her that I can only bring one animal with me and that usually satisifies her. She now has a Sorcerers Apprentice Mickey that she calls "Wizard Mick" but he gets to live on MY bed. She is FUNNY I tell you!!

Ok, that is all,

Rachel

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

Charlotte has Done So Well today!

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

Some Bad, But Not Unexpected News

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

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

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

Love to everyone,
Rog, Rach, & CJ

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

Good Appointments Today

Oi! I keep not learning my lesson.

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

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

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

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

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

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

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

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

An Update from Houston

Let's settle in for a nice long one, shall we?

I'll try to get this done by midnight.

The day started off pretty good with Rachel getting off at a decent time (thanks to Robert and the Houston Ground Angels for the lift to the airport). I understand she upgraded to business class. The ticket agent offhandedly quipped, "you deserve it." and Rachel said, "You have no idea!" You got that right!

After that, I got to get ready at a leisurely pace since our first appointment wasn't until 10:15am. I woke up Charlotte, got her ready, and we walked over to MD Anderson to start our day.

The first appointment was a chest x-ray on the 3rd floor by Elevator 7 (the world of MD Anderson revolves around what elevator your appointment is near). We got there super early and I expected to wait a very long time but I guess they didn't have all that much to do and they got us right in.

The only drama was when CJ saw the actual x-ray equipment. She's had x-rays before but this looked a little more intimidating than the other times and she started getting scared but she's smart and after I explained what was going to happen and how I PROMISED it wasn't going to hurt, she was game. They actually made her stand, which was a new one, and she did whatever the x-ray technician told her to. I got to wear this big o' lead-lined glove to both protect her lower back from the x-rays and my arm from frying while I helped hold her in place. She thought is was funny.

BTW, she has started picking up the phrase, "big o' (whatever)." She used it twice today. Sometimes she adds "hairy" to it like I do once in a while: "Charlotte, you've got a big o' hairy stinky diaper!"

But I digress

So the chest x-ray was pretty easy, early, and painless so then we tooled over to Elevator C 7th floor which is the Peds clinic where we went before to see Dr. Wolfe. We wew actually slated to go to teh second floor but they re-reouted us to the 7th floor because that's where we were supposed to be anyway. The 2nd floor is for adults.

The place was hoppin. The playroom was full of kids, the music therapist was there and he had the kids wrapped around his finger. I was a little soso on him the first time but he was jammin' today. The child life specialist from last time was there too and she remembered us, remembered where we were from, and even some little details about Charlotte's favorite things. That always impresses the hell out of me.

This segment of the day went well too. Miss/Nurse Toni drew the blood, gave CJ a little Snoopy dog (she got a "Fleece" Beanie Baby before the chest x-ray and a platypus Beanie Baby at the Proton Center yesterday!), and we headed back to the "Imaging Center" for the scheduled MRI/assessment starting at 11:30.

Now things started slowing down. It seems there was a problem with one of the machines so they were running behind. Remember that Charlotte was NPO for the second time in as many days. No food all morning and it was getting to be noon-y. Never once did she complain. We read books, watched Sid The Science Kid and Blues Clues videos until the battery in the DVD player petered out. and talked to a couple other patients there. I think the batteries petering out scared them into doing something for us so they at least let us go in the back to wait. I plugged in the DVD player in the back and we finished the Blues Clues that got interrupted out front.

Then before you know it, it was our turn. We went into the MRI room, CJ was holding on pretty tightly but not really freaking out. Again, I told her what was going to happen and it helped, I think. She got the goofey juice, she conked out and I got the next 45 minutes to myself. I went and got lunch!

The time was just after 2pm. It was supposed to start at 12noon. And the MRI lab was pretty chaotic because other doctors were trying to cram other patients in an already full dockett. Like at the Proton Clinic, CJ slept far longer than normal and this time, they had her hooked up to saline for fluids, and by the time I changed her diaper, it was a big o' hairy saturated diaper!

Well my eyes are fighting me so I'll try to finish this tomorrow.

Buenos noches and adios amoebas!
Rog

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 Great Day

I can't figure Charlotte out. She starts to look zombiesque and then turns around and has a great day.

We went to the Home-based Business Bazaar and she didn't seem to do that well. We made the rounds and saw a few friends and RNR members like the Flanagans, Bridget, Evan, Malia, Xavier. We ended up in the nursery where we stayed for a while. There were some very nice things for sale and I know Granny did her share to make it a successful event.

Then we made our exit and I promptly pulled something in my back somewhere between the front door and the end of the sidewalk. I have no idea what I did but it started really bothering me by the time we got to the car.

When we got home, I fed Charlotte lunch and took some Vitamine "I." Granny was merciful and took CJ over the Uncle Kolbey's house so I could get the ice going in best Dr. Anna style, "20 minutes on, 20 minutes off."

While I sat on the couch trying to find a comfortable position, I found myself watching, Farrah's Story. This is not a show to watch if you're emotionally fragile but if you want a real look into the life of a cancer patient, with all the ups and down, the side effects, the hopes, the impact on families, etc...then watch it.

It really ran me down though and I found myself slipping into Seriously Bummedsville a few times. Kinda ruined my day. I told Rachel tonight that it's my every 6-month funk which is actually happening once or twice a month these days.

Rachel went in to teach a class and lead Brithday Bashes today and I went in to help with the first ever Awesome Adventure Party! I was pretty much useless with my back/shoulder so I worked front desk and the regular crew wowed them. It was a pretty successful party from what I saw/heard.

When we got home, Charlotte was already saying she wanted to go to bed so we brought her back home and got her ready. She ended up having a great day, pooping, eating, drinking, and having lots of educational fun with Granny. She was just pooped.

Update:

Some of you have asked me to repeat Deb Harper's contact information. If you haven't seen yet, Deb did a photo shoot with us last week and took some FABULOUS pics of Charlotte (me and Roger too). She is doing a "Pictures for Charlotte" fundraiser where she will take pics of your family (wherever you wish) and give you an edited CD of the prints in exchange for a donation of your choice for Charlotte.

If you are on Facebook, you can take a look at the pics on either mine or Roger's sites. We should have some posted to the Caring Bridge site soon.

Her contact info is: Deb Harper (804) 273-0064
Harper3902@aol.com

Update:

Aunt B and Uncle Not-So-Hairy headed off to the Hawaiian Islands this morning and Reesestrong (the doll) went with them. Can't wait to hear the stories and see the pics.

Extra positive thoughts should go out to the Reilly family as their son, Liam, who we met at the Neslon Clinic, passed away on Monday the 22nd. I say again, cancer really, really sucks!

On a more positive note, Nile, the boy with sickle cell anemia I met in the MRI room, has had a good go of things lately as he got to meet the Super Bowl Champ Steelers and received a bunch of stuff from his favorite team, the Washington Redskins. He even got a call from Santanna Moss (wide receiver). The absolute BEST thing is that he will be receiving his bone marrow transplant next week (I think)!

Here's his CB site: http://www.caringbridge.org/visit/nileprice The Redskins visit (Howiette the Hoggett actually) was caught on film and his expression when he realized what was going on was priceless (no pun intended). It's part of Channel 12 About Town. I've asked Nile to forward a link to the video.

Just got notice that Rachel posted another new update to CJ's journal. Hope you don't mind the multiple posts. Don't forget to read Rachel's last post about Deb Harper's photo shoots!

CJ has had two "walks" around the neighbourhood today and is currently next door with Granny working on some of those cookies. She watched "Mary Poppins" again today and when I asked her if she would like Mary Poppins to visit again and bring her tea set, she said "Yes!"

Everything depends on her numbers but hopefully we can get it planned soon.

Tomorrow is a very long day because we're starting a new drug in the mix and they have to do some extra tests and such. Heard from the Klauers that they will be having a long day of it too. It'll be a Dad's day by the looks of it. The two families are conspiring to open a Tiki Bar at the Nelson Clinic as part of our new "Adult Life" department! :-)

So here's to everyone fighting the good fight past, present, and future. I raise a toast to you all.

Now on to an ice cream party!

MRI Results and Update

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

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

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

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

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

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

Rachel

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

Now on to the real news:

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

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

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

That's all I have to report for now.

Rachel

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

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

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

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

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

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

A Lot of Adventure

Well, we've had a lot of adventure since the last post. After she got settled, she was talking up a storm but then she started some erratic behavior. Her tongue kept protruding out of her mouth and she was making some very jerky movements. It was difficult to keep her still and she kept trying to pull out her lines going straight into her head (!!!). They gave her some benadryl and morphine with no results and then took her down for a head CT just to check for no additional internal bleeding. The CT scan looked clear. Finally about 9 PM they decided to try Atavan and that gave almost immediate results. She was much calmer although she was still talking with her tongue out of her mouth and wiggling all over the place.

The short story is: she hasn't slept (at all) since waking up from the surgery about 4 PM yesterday and she is definitely not talking as much. At one point, the neurosurgeon was thinking she was having seizures but the neurologist thinks it's probably more just swelling and the combination of meds. They had her on a different anti-seizure med than they used during the last two surgeries so they have since changed back to the original med. We are just in a waiting game. Her BP was a little elevated and she got some blood last night but otherwise her levels seem ok with everything.

I got very little sleep last night (some but in fits and spurts). The most I got was from about 6-8 this morning. We've had visits from Auntie Retta and Grandpa and Juanita are here now. I'll be going to work in a little bit. Yay for caffeine.

So to make a long story short, we just keep monitoring everything and make sure there aren't any erratic changes in the next little while. As the swelling goes down, we should see her return to a more "normal" level of everything.

She will have a full head and spine MRI tomorrow morning so we'll get lots more information then.

Now time to seek out some food for me...

Rachel

UPDATE:
After almost 21 hours of wakefulness and restlessness, Charlotte finally fell asleep about 1 PM. Dr. Tye had been by to see her and concurred that she probably was not having seizures but was more likely just feeling the effects of surgery, medication, etc. He was happy with her blood pressure and how she looked and just advised us to "hang in there".

I went home to refresh before work and managed to get in an hour or so nap on our new (and much needed) mattress. Hooray!

Then I met up with Roger at Romp n' Roll and took over the evening shift while he headed up to N. Va for an Uptown Gig. The work allowed me to at least clear my head a little and get some much-needed paperwork done.

Now back at the hospital and it seems that she has been asleep the ENTIRE time. Of course, I joked with my in-laws, "oh, so you kept her asleep so now she can be awake all night" but I have a feeling she will sleep for a while longer. Her BP level is great and everything else looks good. She has been resting peacefully. Of course she hasn't eaten much so I'm sure that she will wake up HUNGRY. Hopefully she will either wake up briefly before midnite and be able to eat a little or she'll just sleep straight on through till her MRI tomorrow. Tomorrow is a full head and spine MRI with and without contrast. She hasn't had one like this since her initial diagnosis. They will be checking her up and down (literally) for any signs of the tumor spreading as well as getting an idea of what we have left to fight.

More to report later. For now, I am going to seize the opportunity to get some rest.

Rachel

Surgery

Charlotte went in to surgery at 10:08am.

We woke up at about 4:30am and got to the hospital before 6:00. The valet parking didn't open until 6:00 so we had to wait. In that time I could have parked in the garage, got validated parking, and been upstairs getting ready for the big day. But then I heard the road construction made it very difficult to manuver so it looks like we went the proper route after all.

As we got all ready for the MRI, Charlotte started getting antsy so we watched Caillou videos on the iPhone. Paid for itself several times over as far as I'm concerned.

When we went down to the MRI room, we weren't there long before the anesthesiolgist (woah! There's a $10 word!) showed up to administer the happy juice. At first she didn't want to let them at her central line so I distracted her with pics on the phone (more added value) while they hooked her up. In about 30 seconds, she got this very silly grin on her face and thought everything was extremely amusing!

Then they picked her up, took her in to the MRI room and she was gone. It all happened so fast I didn't get to give her a kiss but it was ok. Rompy, Mickey, and the hand-made pink and purple blanket (I can't remember who made it for her off the top of my head) are with her. Dug the Up! dog waits patiently with us here in the [SQUIRREL!!] 7th floor lounge.

By the way, CJ was very happy to tell everyone that she has TWO dogs now!

So after they took CJ, I found myself without a lot of direction since they sort of mentioned where I should go to wait only in passing and I was a little distracted. So I hung out there for a little while and talked to a young man and his mother waiting for an MRI. Very nice with the "Yes sir" and the "No, sir" and all that. Even with the tiff we're having with Caringbridge, I told them about CB and Hopecam.org. Turns out he is one of triplet boys and has a younger sister in Romp n' Roll's age range. So of course I gave mom my card. (Always workin' it)

So I eventually made my way down to the ground floor waiting room, got a bite to eat and settled in to wait. I promptly fell asleep. My buzzing phone woke me up - Auntie 'Retta was calling trying to find me. Ends up She, Grandpa, and Juanita Bonita were looking for me all over. They were just a floor above in the 1st floor waiting room.

I'm spoiled with the 7th floor so the other waiting rooms just wouldn't do. I pulled Loretta up with me and started the sign-in process early. I got the sign-in sheet filled out and saw plenty of folks who remember Charlotte including Heather from Child Life. They seem to be all ready for us.

CJ will be in room 614 of the PICU which means for now, kids can't visit and we have to space out the number of adults but after a day or so, we certainly want people to stop by. It can do nothing but good for her.

So now we're camped out, waiting for word. They are supposed to call anytime now with an update.

"Charlotte's Devon" is headed over to have lunch with us and Dean from Glen Allen Golf just called to let us know the total from the fun-raiser was $140! Thanks to all who came out.

Just heard from Nurse Janice in the OR. Charlotte is still in surgery and things are going as expected. If she's still in surgery at 2:00 they'll call with another update.

More details as they come up.

Latest update:

They were finishing up and might be done within a half an hour. Charlotte has been stable the entire time and everything looks good so far.

I don't think I'll be making it to Romp n' Roll this afternoon. Anyone in my Wednesday classes will be in the very capable hands of Miss Samantha. (She's been doing so well covering my classes lately, I think I might be losing some of my kiddies to her classes!)

Thanks to Devon for a very tasty lunch.

Stay tuned...

She is out of surgery and looking GREAT!
She is still a little loopy from the anesthesia but that's mostly making her act very funny more than anything else. She is gradually getting tubes, a-lines, ivs, etc. taken out. She is talking and moving all her limbs. Looks a little pale and will probably have a small transfusion but overall we can't complain.

Dr. Tye thinks he got a LOT of tumor. No word on percentage but he is reasonably confident that he got a very large amount. He said the pathway was really clear and he was able to get quite a bit. She will probably have an MRI tomorrow or Friday and they are going to aim for both head and spine to get a full picture.

Her tumor samples have been sent off to the MCV lab as well as a lot that will be going to Houston by Friday.

We have a nice room in the PICU...actually one of the ones we had last time with lots of space and a great, sunny view of the capitol and the governor's mansion.

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

Thanks for all the prayers and support.

Rachel and Roger

Something of a Plan, Finally

Hello everyone,
Hope everyone had a great Mother's Day. We sure did. We opened Romp n' Roll up for open gym and let the kids have a good time. The crowd was pretty good.

Charlotte's numbers have been so good lately that we have come off the germophobe box which is great because I'm no good at being a germophobe. We even had visitors from St. James The Less. The Shiffletts came by with a Mother's Day present from the Sunday school class. Annabel (or "Annablell" as Charlotte calls her) is one of CJ's favorite friends and they had a lot of fun tickling Annabell's sister Piper on the knees!

We also took her down to Romp n' Roll to play and met up with The Hayes family from Montessori House. Anja is another of CJ's favs.

We then went to Panera with Granny and Uncle Kolby (walked from RNR in fact!) for Mother's Day dinner and then to Coldstone for dessert!

When we came home, I gave the princess a bath and settled in for the evening. A little bedtime drama having to do with a thrown book and not being tired but nothing too bad.

Overall, it was a very nice Mother's Day and as we've stated in various places, seemingly extra special.

The history of Mother's Day came up in conversation and after a little online research (We're kinda geeks that way), we found some very interesting information. I always went with the prevailing wisdom that it was just a fake holiday invented by Hallmark to sell cards. "NOT SO LIZZARD BREATH!" (there's your trivia question for the day) Turns out it's more of a peace movement/community organizing event with various religious roots. Here's one website that chronicles just a bit if the history.

http://www.momscape.com/articles/momsday.htm

As for the more serious side of things, no final word yet on anything.

Nothing.

Zip.

Nada.

Zilcho.

Feel left hanging? Us too. We're at that stage again where we really can't plan anything until we know more.

We'll let you all know as soon as we do.

Happy Monday.


OK, so we finally have something of a plan. And as usual, it looks very little like what we were hinting at last time I wrote.

After a good amount of back and forth between Rachel and Dr. Tye, it was determined that the MD Anderson team could, indeed, use the samples Dr. Tye removed during Charlotte's 2nd surgery as well as the last MRI scan so she doesn't have to have surgery this time until after we go to Houston.

That makes flying much more attractive as we won't be worrying about how she is going to handle travelling a week after a major brain operation although I was quite looking forward to the road trip in Grandpa's camping truck.

We wanted to see about Angel Flight but they would only let one parent go and we actually found a halfway decent rate on Airtran.

We've had some very generous donations come in recently which will take care of our travel expenses. Another reason to thank everyone!

That makes the schedule look something like this:

Thursday, May 21: Fly from Richmond to Houston
Friday, May 22: Meet with MD Anderson Drs.
Saturday, May 23: Fly back to Richmond

Tuesday, May 26: Check into MCV
Wednesday, May 27: Surgery #3

We'll probably be in the the hospital at least a week post-op recovering. Time to stock up on Morphine, Tylenol, and Dora videos!

We're hoping to get various family members here to help with things starting the 27th (maybe the 26th) including Grandpa and Juanita, Aunt Phyllis, Granny (again but this time WITH Grumps...I mean Gramps!), Anyone else who wants to drop in.

The Staff at Romp n' Roll has been forwarned that they may be asked to do some extra stuff (as if they haven't been asked before!) I'm confident, we will be able to work something out.

Another note about our staff at RNR. Throughout this whole experience, they have been the best staff any business owners could possibly have any right to hope for. They've come in at odd times, covered myriad classes, volunteered hours of work over and over and kept the business going when we were balls of stressed out goo! They are more perfect examples of how we couldn't do it without our support network.

We apologize to our customers for the revolving instructors but at least the replacements seem to be doing a great job.

Other news: The Glen Allen Golf Fun-raiser has been tentatively moved to Wednesday, May 20th.

Big new Fun-raiser in the works! Dr. Anna Madland of Atlee Chiropractic and Bill Roberts at WHAN 1430am Radio and I did a little mind melding and hashed out a little more of the "Yoga-thon" idea. It will be 100 "yoga-ists" doing 100 minutes of yoga And we would like to try doing this during the Strawberry Faire in Ashland on Saturday, June 6th. People would sponsor yoga-ists for $1.00 per minute and if every person on a mat got every minute sponsored, that would make $10,000 raised! So that's our goal. "Can we build it? Yes we can!" (Who knew President Obama liked Bob The Builder?

We want to get it going relatively early in the morning to avoid the heat so it will probably start 8:30 or 9:00am. We need 10 instructors and 100 (or more!) people to do the yoga. I know with our network, Dr. Anna's, and the Greater Ashland listening and reading public, we should have next to no trouble getting it together.

After the event, stick around for one of the coolest days of the year.

As per usual, Jackie Plank is knee deep in this one as well. Contact her at jplank@oscient.com to sign up or to sponsor a minute. Day-of sponsorships welcome if there is space. So please spread the word!

Thanks,
Rog

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

Charlotte had a Pretty Good Night

Always have to lose one post per round.

Just had a fire alarm so I posted what I had typed but failed to realize that my connection had "expired." So off to the great ether went my morning's thoughts.

Suffice to say that Charlotte had a pretty good night in spite of the beeps, diaper/medication changes, and the little baby admitted last night about midnight. I'm not sure if it's a boy or a girl but he/she was having a very rough night. Another one for the positive energy focus group.

I'm copying as I'm going btw.

It was the morning of her 100th day that ran over CJ like a Mack truck. I woke at around 5:30 from a deep sleep and moderately good dream to CJ "yarking" what little she had in her stomach. She was still asleep so it took her a minute to realize she shouldn't put her hands in it.

We changed her clothes, diaper, and bedding and she zonked again.

About 8:30 she threw up again so they gave her an anti-nausea steroid with a little more umph than the zofran.

She's still sleeping and I can only imagine that she will most of the day.

Grandpa left this moring and I understand he left behind some Juanita Bonits goodies. Thanks! I can't tell you how nice it was to have my dad here. He covered CJ shifts Rachel and I couldn't have possibly covered.

Granny comes in today so the family revolving door continues to go 'round which is good.

Do you think the reporters covering the swine flu outbreak from Mexico did something wrong?

In Romp n' Roll news, Rompy's Summer Concert Series has finally been set. Mark your calendars.

Thursday, June 11 - The Taters (LOVE those guys!)
Thursday, July 9 (CJ's Birthday!) - Clay Mottley (the voice of Tumble Tunes)
Thursday, August 20 - The Uptown Vocal Jazz Quartet with special guest Gypsy Roots Swing Band.

There might also be super secret surprize guests.

Concerts are free, start at 5:30pm, and we'll be accepting cash donations for Charlotte and non-perishable food donations for the Central Virginia Food Bank.

Also, we're having Rompy's Bluegrass Jam Monday night from 5:30 until...? Bring yer ax and yer kin. Kids can play in the gym for $5 while anyone can come jam for free.

Another random thought. With all the amazing technology all around us, why can't MCV have showers that don't leak or drip?

OK so Nurse Nikki just came in and tlod me there is an MRI scheduled for today. as that been on the books for a while? Sometimes I feel so out of touch.

I think a coffee mug is calling me.

A Lot of "Hurry Up and Wait"

Charlotte had a pretty good day yesterday. In typical hospital fashion, it was a lot of "hurry up and wait". We got to the clinic early and got that "nasty catheter" removed. She immediately seemed to feel better. After some lab draws it was off to radiology. She again went easily into the MRI. It was kind of weird for me this time as it was the first time she had an MRI when she was not admitted to the hospital. We were taken to the heart catheterization recovery area which is where they bring everyone who is coming out of anesthesia, etc. from procedures. Anyway, the nurse said the she did very well and sang Frosty the Snowman as she went to sleep. Some of the nurses mentioned that kids frequently wake up grumpy after anesthesia but another nurse said, "No, when they go to sleep easily and peacefully, they wake up peacefully. And Charlotte went down peacefully". Sure enough, when she finally DID wake up (it took a while) she awoke with a smile on her face.
Dr. Tye and Joanne came down almost immediately to read her scan and as Roger mentioned, it did look good. Not a lot of shrinkage but no growth either so that is good. Dr. Khan looked at it later and concurred.
While Charlotte rested, I went down to Christopher's Cart and got chicken and tuna salad lunches for me and mom. If you've never checked out Christopher's while at MCV, you are missing out. Relatively healthy, very yummy, and affordable. And it sure beats the crowds in the cafeteria. Highly recommend.
After Charlotte woke up, it was back to the clinic to wait for a bed on the 7th floor. It took a while, apparently because Peds was very busy yesterday. Charlotte even ended up on 7 Central (the "big kids" area) instead of 7 East because of the crowd. So we have a new set of nurses to get to know but many of the faces are still the same. Had to go through all the requisite processes of getting settled (forms, getting water/juice/etc., finding a remote control that works for the TV...all the fun stuff!). They FINALLY started her on IV fluids about 6:30 PM (apparently they had trouble locating a free IV pump and cart) and I left the hospital around 7 PM. She was excited about her slumber party with granny. Chemo should have officially started sometime after midnight.
She really was in quite the good mood yesterday. Everywhere we went, people smiled and waved at her and she almost always waved back and even engaged many folks in conversation. I think maybe she wrote the book on "How to Win Friends and Influence People". She has never met a stranger and can charm the socks off anyone!
Roger and I got a date at Casa Grande last night. First time I had been in there in a long time where I had to wait for a table. That place was hoppin'! Now it's off to a full day at Romp n' Roll and my turn at the hospital this evening.
Hope everyone enjoys their spring weekend.

Update from Rachel:
A full day of work for Roger and Rachel and a full day of fun (mostly) for Charlotte. According to Granny, she slept well and has received the methotrexate. Plus all the regular meds for keeping the poop moving, keeping the nausea at bay, etc. Her day has been spent with lots of her regular activities including walks through the halls, visits with nurses who took care of her on other units, and videos and coloring. She was very happy to see mommy and daddy and I think Granny was ready to go home to her bed and a nice dinner (thanks again, Granny!!!).
Now we are getting a little family time before it's mommy's turn to take the night shift. Not much news to report. We are definitely feeling "at home" here at MCV and that is probably not such a good thing...except that it makes the whole experience a little bit easier, I guess.
Hope everyone is enjoying this glorious weekend. We certainly saw lots of yard sales and other events going on today!
Rachel

Final Update:
She's finally asleep. She was rather whiny all evening but had one good walk around the unit. We found out that her sugar was slightly elevated which may have contributed a bit to her jittery/agitated behavior. I guess they will adjust that through her IV bag (i.e. the amount of sugar in the fluids). [Actually, as I'm typing this, nurse Katie just came in to say that her sugar is down again but still not "normal" so they are going to give her a bag with 1/2 the sugar content...]
Any oral meds take so much prompting and prodding and bribing. It's exhausting. Even chocolate is not a surefire bribe these days. Then when we tried to bribe her with one of her favorites (Tylenol meltaways) we found out that we had to get the little bottle of tylenol and all its contents approved by the doctor and they have to keep it at the nurse's station. Just a CYA move on the hospital's part because insane people often bring other (unapproved) meds in medicine bottles and then try to give them to their kids. We did finally get the Senna into her chased with a tylenol meltaway and chocolate milk. Then more drama when they had to put the bag over her "area" to catch urine for a sample. Of course, there was the "it's a catheter" terror despite our protests that it was just a bag with NO needles and NO catheter.
This, to me, is the saddest part of this process. My child who until this point took all kinds of medicine with no question and never feared ANYTHING (possibly to a fault) is now fearful of every procedure being done to her and wants full explanations of what, when, where, and why everything will happen. And even with that there is still fear. It is so sad because this disease (and the process of curing it) has changed my child and as many of you know, any kind of change is a grieved loss...it breaks my heart.
In the past 24 hours, she has developed more dark circles under her eyes. More and more she looks like "the kid who has cancer". She's still cute as ever. Don't get me wrong. Hands down she's the most beautiful kid on the 7th floor tonight and she could still win beauty contests anywhere she goes with that winning smile and personality. But it is still sad.
Roger was more than frustrated today with many things (namely ME). I'm sure he will give his own recount of the day's events including his forays into the world of the Confederacy but I'll use this forum to give my own public apology for making life difficult (I'm trying....) and hope he has a better day tomorrow. At least he gets to work a birthday party for one of our favorite families (the Cadienas!)
Well, while she sleeps I need to try and rest...my mom was right. This unit is much noisier than 7 East. Not really sure why but sound just seems to carry differently and I think they use the intercom more. Hopefully it won't be too bad tonight.
Rachel







•