Charlotte's next treatment steps

I apologize for the belated post. Better late than never, huh?Before I give Charlotte news, I need to give an update on our good friend, Reese. She is finishing the stem cell transplant from her 4th and (hopefully LAST) round of chemo today. Hooray! She is doing very well and we are so happy for their family. Keep the positive vibes flowing for clear MRIs from here on out!Now on to the princess:Monday was busy with an early morning at the clinic for labs. They didn't have time for the doctor to see her, so we were sent from there to proton for radiation. She went in relatively on time. When they're running 30 minutes late at 10 AM it doesn't seem nearly as torturous as 30 minutes late at 2:30 PM! While she was getting her treatment, I got a call from the clinic that her hemoglobin levels were up over 11 and that she would NOT, in fact, need a blood transfusion today. Good news! We got further good news in that the pharmacy came through with the insurance company and they agreed that they should pay for the oral topotecan. She has been very good about taking this medicine so now that we have the accutane and topotecan in oral form, I think the only IV medicine we will have upon our return to Virginia will be the Velcade (the new drug). That is VERY good news. We meet with Dr. Wolff tomorrow and I am hoping that he has some kind of rough draft of her new protocol. I can't begin to tell you how well she is doing. She's pooping regularly (without "assistance" from meds), she's eating a good amount and not losing weight (still no veggies or multivitamins but I'm not sweating it), and she's FINALLY getting to be social again. After proton, we took the shuttle over to the main area. We went to the cafeteria for lunch. Charlotte is the only kid (or person for that matter) that I know who can take almost 90 minutes to eat a small bag of Cheetos! That is what she did. Very slow and deliberate. Sometimes I wonder if her lack of nausea is helped by the fact that she is such a slow and dainty eater. Whatever works is what I say! I needed to make a deposit at the bank (it was close by) so we headed out for a walk. After the walk, we decided to stop at the coffee shop on the first floor and wait there for the shuttle. It was WAY too hot to walk home and I was spent. While we were waiting, Charlotte said she was hungry again and noticed a shelf full of bagged goodies like nuts, gummy bears, and yogurt covered pretzels. Those pretzels really caught her eye so I spent almost $5 on a large bag of yogurt covered pretzels (anything for her, right?). Well, I went to get in line to pay for the food and Charlotte proceeds to go up to complete strangers, saying hello and saying, "My mommy is going to buy me some pretzels! I said please and she said yes!" Too cute. The other adults were enthralled. I turned to the guy next to me in line and said, "Yeah, she's a really shy kid. We're trying to work on that." He cracked up. It also helped that yesterday she was wearing the "outfit" that her aunts bought her while they were here last weekend. The tutu is positively adorable on her and she got great second looks everywhere she went. I will be sure to attach a picture although I will warn you that she wouldn't let me "take" her picture all day (the paparazzi drives her nuts) so I never got a great angle. You can still get the idea. There's an additional photo (with hat) in the photos section. We'll work on getting one with the "full ensemble" that includes jewelry and sunglasses!After we got home, we decided to watch one of her videos in the TV room and then just hung out upstairs until dinner time. Dinner was very good again and we had a lovely time hanging out. Charlotte played with some of the kids and I got to talk to a few parents where we commisserated about the surreal existence of having a kid with cancer. Today was just a proton appointment. I walked to the proton center but we rode the shuttle home. We were home by noon! The afternoon has been full of play and reading books and laundry and lacing and just a nice bit of activity (not too much, not too lazy). Tomorrow is a VERY early appointment. We are supposed to be there at 7 AM! Charlotte (and I) have gotten so used to later appointments. This will be kind of a challenge. I will let Roger tell you about his adventure on the trip home from TX. It was somewhat eventful but I'll let you hear it from him.

Riddle me this, Batman...

"Riddle me this, Batman..."Why would Humana One, our illustrious insurance company, pay for IV topotecan treatments which require a visit to the clinic, supervision by at least one medical professional, and the actual drug which costs well over $1000 just for the little package they hang on the pole (not to mention all the medical waste created when tubes, swabs, even the covering on the table, all have to be thrown away) and then refuse to cover the little liquid oral syringes manufactured right here at the hopsital, which we can do at home without supervision, and which costs about $800 for 14 days worth (and all we throw away is the little syringe)?Well, that's what they're doing. If you're looking for places where the wasted money goes, there's one. I would think other policy holders of Humana One or even shareholders of the company might be interested to see that inefficiency.
I just paid over $400 for a week’s worth of the oral version (It’s certainly not a financial hardship thanks to all of you filling up CJ’s account) and Charlotte took it with very little trouble. Dr. Wolff recommended this avenue because he said, “You have to get out of town; you have to go to Disney World.” The oral version offers us a lot more flexibility all around. Going into the clinic everyday is an acceptable pain but being able to forgo the visit is a very attractive proposition. I’m sure they don’t cover it because it hasn’t been “approved.” I think they ought to approve it. Otherwise, I’m pretty sure we wouldn’t be able to maintain that outflow of cash for the long term and we’d have to go back to the IV route.
Charlotte doesn’t really give a hoot either way.The other, and much more serious insurance development: Humana sent us a letter saying that the proton therapy is considered out of network. This would be much more than a "convenience" issue and would normally have us extremely concerned except that we already got a coverage waiver (serial number and all) way before we even came out. Our angel in this matter, Yvette, is out of town, however, so she’s not available at the moment to check things out. Another person in the radiation dept. talked to me and after a little minor investigating, it looks like all the important information is still there in the computers so when Monday rolls around, hopefully this can get nipped immediately.
I groused at the person manning The House front desk this morning for turning out the lights on me while I was using the kitchen, twice. I told her it was a matter of being polite and all she had to do was ask me if it was ok or at least warn me she was going to do it. She, for her part was calm and tried to explain policy, electricity costs, yadda yadda yadda (of course I wasn’t interested in listening because I was mad) but after a short bit, I realized, again, that it’s really not that big of a deal.
Then after all that, Charlotte melted down because I had cut up the apple which was why I was using the kitchen area in the first place.
OI!
I see my irritation level rising slightly, which is weird because things seem to be going so well, but I get over most of it pretty quickly. Mostly because I’m not shy anymore about letting the offending party know that I’m irritated and then I let go of it right away. Keeps it from swirling around in my mind and making me stew over things. Makes far less bad energy in the long run. I could still use better judgment as to whom I aim my grousing.
So yesterday…Not a bad day again. Charlotte has started getting “the look” again so I wasn’t surprised when later, I got a call from the Children’s Clinic saying they wanted to give her a transfusion next Monday. Her numbers are still a little low but not going down but they wanted to make sure and I don’t think it’s a bad idea at all.
Rachel comes in tonight and Merilee Beasley is watching CJ for our date. No real plans this time. Just mingling auras.

A small yet massive victory today and it had nothing to do with poop.
A friend of my cousin Jeff’s, Larry, lives in Houston and we meet up today to hang out and get a little break from The House. At Charlotte’s request, we went to Chick-fil-a (surprise!!!). She ate like a champ and then told me she wanted to play in the playroom.
We got her hat, shoes, and brace off and she started climbing up the play “thing.” She got three tiers up when a boisterous older boy came whizzing down and bonked her on the head with his arm. No harm but lots of tears and I had to go up and get her down.
I held her at the table while she got herself together. She ate some more and to my surprise, she asked to back into the play area. I told her the big boys were still in there and she said, “That’s OK.” That’s my girl! She started back up the steps and I only helped her a little and once she go up high enough that I couldn’t contort myself any more, I asked one of the boys, David (pronounced Dah-veed), to just watch that she’s ok and he agreed (nice kid). I think he actually helped CJ onto the slide and down she came! It took a very long time but she was tenacious, determined, and never even hinted at giving up. That’s my girl.
I tell you, I’ve seen more and more of the old Charlotte every day (not wanting help getting off a couch, actually sitting up in bed on her own, trying suggestions I’ve given her as to how to bend over to pick things up, etc…) and today was a big glimpse of her. Warmed my heart.
Just though I’d pass that along. Thanks, Larry, for a fun afternoon.

Update from Daddy and Mommy

I promise that when we publish the book, we’ll fix all the atrocious spellings and grammatical errors!
Yesterday, the New Mexico trio headed back to Farmington/La Plata but not before showering Charlotte with gifts, taxiing us around all over the place, paying for lunch, and revealing that they (Uncle Notsohairy actually) had caps made in purple and pink with Charlotte’s name stitched into them. Pink stitching on the purple hats and visa versa.
Aunt B has agreed to shave her head for a cancer walk they are doing in September but only if I can get Charlotte there for the event. Hmmm…MAN! I really would love to see that. We’ll see.
After we made our goodbyes and they left for the airport, Charlotte and I spent most of the late afternoon in the room with me catching a cat nap here and there and CJ watching videos and waking me up every time one section ended to tell me plot highlights. She got her legs back after a while and we headed back downstairs. Southwest Airlines was serving dinner so it was smelling pretty good down there.
We also met up with a new family with 3 boys and a 9-year old girl (the patient) named Mikayla. Mikayla has become a new bff (dear God, I didn’t really say that, did I?). She and Charlotte seemed to really hit it off. Charlotte doesn’t seem to mind the attention Mikayla gives her and Mikayla really seems to like looking out for CJ. It gave me the chance to get dinner, play a little piano, read a little, stuff like that. The rest of the family seems great too. Dad and the three boys all have their heads shaved in support of Mikayla.
We had a very early (7:30) appointment with the eye doctor Wednesday (yesterday) morning so I had to get CJ into bed as early as possible. It was still well after 10pm.
I slept like doggie doo doo. Not getting enough sleep this week. I’ll try to do better.
So I got her up early and decided to try to dress her in the Dora and Diego scrubs Grandma Bonita made for her. I understand she wouldn’t wear them earlier so I didn’t have much hope. I accidentally happened on the way to get her to wear almost anything: threaten to leave her in her nightgown to go see the Drs. She’s developing such a sense of “style” and fashion that going out in jammies is a complete fauxpas! She left wearing the custom scrubs, surgical cap and all!
I hadn’t actually walked the two blocks to the main hospital since I’ve been back so I forgot that it only take 5-10 minutes to get there which means we arrived at around 7:15 for our 7:30am appointment. Then we waited. The hours on the door said the office didn’t even open until 7:30. Why book a 7:30 appointment when it’s obviously never going to happen at that time? The staff was a little late opening the office so I was a little growly when I went in. Not too bad, though.
We eventually went into the office around 8:05. The “techs” got so much more out of Charlotte this time than the Dr. got last time. We even got dilating drop into her eyes with a minimum of drama. Then when the Dr. actually did come in, my theory was proven correct. CJ remembered her and really wanted nothing to do with her. We ended up having to hold her and force her eyes open so they could look at the optic nerves. That was pretty traumatic. In hindsight, I can’t believe I even allowed it let alone participated in it. Remember, this is the same Dr that asked all the bad questions last time. This time she kept saying things like, “Just do this one thing and we’ll be done.” And then she would do more, making Charlotte realize the next time she heard that phrase that the Dr. was full of crap. I finally had to be a bit rude and tell her in no uncertain terms not to do that anymore. I tell you, she knows a ton about the eye but not much about kids. I told Nurse Rhe about it and she said she’d check into it. The end result is that they left eye still has some very slight swelling around the optic nerve which may just be leftover from everything so no one is too worried about it right now.
There just has to be a better way to do that sort of stuff.
Next on the printed schedule was supposed to be proton therapy at 12:30 with a follow-up visit back to Dr. Wolff at 1:30. Hopefully you can see this wasn’t going to happen. Treatments are about an hour long with 30-45 minute recovery times.
With that in mind, I went into the Children’s Center hoping to get squeezed in before we had to leave for proton. That place is always such a breath of fresh air. Both Rhe and Nurse Carmen came out to talk to her and oogle her scrubs. Charlotte LOVES Nurse Carmen and I guess they have a little ritual conversation/routine they do getting back to the room. Unfortunately, my showing up early put Nurse Carmen at a disadvantage since before, CJ always got there after proton and they could talk about food. Carmen was quick on the uptake when I coughed out “NPO!” and she steered the small talk elsewhere.
Then Dr. Wolff came in and did a masterful job of filtering the crap (most of it mine). When he asked me what was new, what had happened lately, I started grousing about the eye doc and he quickly redirected my energy onto more constructive paths. “Ok, BESIDES the eye doctor, what has happened.” “OH! You actually want me to talk about Charlotte?!? I rarely have felt better about being scolded for being stupid. Especially as an adult. The decision was to start topotecan on Friday
I messed up the schedule yet another way because the blood draws/counts he would have used to decide what to do with the next type of chemo drugs would have been drawn by the proton center and since I hadn’t been there yet, there were no draws to study. Not to worry, we got blood drawn right there and then and we headed off to the proton center. We timed it just right and the MDAnderson shuttle was just starting to pull away when one of the volunteers (God bless ‘em!) ran out and placed her body down in front of the tires to stop the bus.
(OK, so I might be exaggerating just a little.)
The bus driver remembered CJ and I learned his name was Walter Johnson. He mentioned he shared a name with the old-time baseball player. Being more ignorant about baseball than I care to admit, I had no idea who he meant so, in perfect form, I googled him and when the bio came up, I felt even worse about my ignorance. Walter Johnson was arguably the best major league pitcher in history! 115 shutouts! Over 3,000 strikeouts!! Over 400 wins!!! Good name, I told Walter Johnson the shuttle bus driver.
We got to the proton center perfectly on time. I just walked right in, they got vitals real quick, and into the gantry we went. She was really tired already so no Frosty this time.
The other not so good thing was that when she was done recovering, I called The House to make sure the shuttle would stop to pick us up. They said the next shuttle leave at 2:30 and would be there to get us. Just to make sure I called about 2:30 to confirm and they said, yes, you’re on the list. We’ll about 3:30 I called and they had somehow forgotten me. Grumblegrumblegrumble. So they called a cab for me and I took a $4.00 ride. Not too bad. I got over my ruffled feathers pretty quickly.
The rest of the night was pretty standard…CJ read books in the room while I dozed here and there. We went back down and Mikayla was there. FREEDOM! Even if to eat in a smidgen of peace. CJ got her appetite back and devoured a bunch of animal crackers, two cups of Mandarin oranges (one of which had her accutane in it), and three slices of turkey coldcuts.
Then up for Madagascar 2, books, and bed.
So that’s where we are. Tomorrow’s proton appointment is blissfully scheduled for 10:30am!

Take care,
Rog

Update:

Well, I'm not exactly sure how things are out in TX but I know that I have had a GREAT day.

It started early with an 8 AM appointment with Dr. Bitsko but we had to do some flexing with the schedule so that I could see him before I left again for Texas. I'd been having kind of a rough time emotionally since some of Charlotte's recent medical developments and I think coming home (and being by myself to ruminate over it) just makes things worse. Anyway, we had a good talk and he helped me get some perspective on things. Always very helpful and encouraging.

From there, I went to Divas for my SPA DAY! Thanks to the many people who helped make this possible, including Jackie, Meredith, Walter, Sherry, my parents, Becky, Tracy...who did I forget? Anyway, they got me a full day experience at Divas and I had a manicure, pedicure, facial, hydrotherapy treatment, lunch, and a one-hour massage. It was so relaxing and very nice to do something that was just for me.

I did actually go in to work for a bit (Thanks Annette for covering a few extra hours) and then met up with some old work friends for drinks and dinner.

So overall, I really couldn't ask for a better day. I really have work to get done that must get accomplished before I leave again on Saturday but I guess I will get there eventually. Big day at work tomorrow and then I'm on the 24 hour countdown again. Time is flying by and I guess that's a good thing.

So Roger is calling me so I must go talk to my family.

Rachel

Another Good Day

More FUN facts about proton radiation therapy:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy weekend, y'all!

Rachel

Facts about Proton Radiation and an Update

Some fun facts about Proton Radiation:

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

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

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

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

******************************************
On a more personal note:

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

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

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

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

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

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

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

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

All is Much Better

We all had a much better night last night and day today. We keep getting rides in ambulances and I think Charlotte is developing a thing for one of the "Ambu-Guys," Isreal. It must be the ponytail, goatee and earring. Hey, wait a minute!!! ::-)
The Bonitas are uber-helpful as usual. When we got settled in the hospital room, Juanita stayed with Charlotte and Dad and I went to get dinner downstairs. It was wonderful because I got to have Chick-fil-a for the first time in 2 weeks or so. It was also bad because I haven’t had hardly any fast food in that amount of time so the fried food sure did a number on me! Still working that out (so to speak).
Sitting down with Dad was so strange. Mostly because I wasn’t sitting next to Charlotte and I wasn’t freaking out about anything. And boy, did I feel tired!
So this am she ate a little and we had a relatively quiet morning. She still seemed a little sullen but her fluids sure are "fluiding."

The ambulance folk showed up at about 1:30 to take CJ to the proton center this time Isreal came with Laura (who reminded me a huge amount of one of our fellow Romp n’ Roll franchise owners). This time we got there very early and waited for about an hour until our appointment time. Grandpa held her on his lap for most of that time. She sure loves her Grandpa!
After she went in (with the accompanying rendition of Frosty. I hope she doesn’t get sick of it but her little hand out for “STOP!” just tickles the staff to no end) the Bonitas and I went back to The House so I could check mail (stuff keeps coming in, thanks), get a few things, and eat. Juanita made me some amazingly good stew and we were treated to another big o’ hairy thunderstorm that dumped a large amount of rain on our area.
Radiation treatment #3 went fine and CJ was in the recovery room when we got back. The Bonitas (isn’t that a kind of sport fish?) had to go check on the dog and awnings on the RV so they left planning to meet back up at the hospital.
Not much else happened until the ambu-guys showed up to take us back. It was Laura and Isreal again (that guy keeps showing up! Gotta go clean my shotgun! If I had one, that is). One thing I’m going to say about the drivers, they have to have super senses of direction because the maze that is MDAnderson Cancer Center is mind boggling. I do pretty well with directions and I’ve been so turned around multiple times, if I had been alone, I would have ended up like Jack Nicholson in The Shining.
Charlotte was actually feeling much better and was chatting up a storm. Laura had never seen the real Charlotte and was amazed.
So after we got resettled in the hospital room, Dr. Wolff came by to do what he does and work out what he thought might be a good plan of action. The short-term plan is to keep watching her at least one more day, do the new routine of hang out here, ride the ambulance ( Isreal is off tomorrow so I don’t have to worry about him!  ), and see how she improves. He was happy with the looseness of her legs but her neck is still stiff. She interacted with him pretty well and smiled for him. It definitely helps that he’s a friend of Dr. Kahn, “one of my favorite doctors!”
As far as the chemo goes, he is deferring to Dr. Mahajan (radiation oncologist) who feels uncomfortable having her on the multiple drugs for which her protocol calls so I think they will only be doing one. Dr. Wolff mentioned Acutane but that’s the one that really dries out the skin so that may not end up being the one.
After Dr. Wolff left, the Bonitas came back and Dad and I turned right around and went to the Target for sinus headache stuff for me (nothing happening now but just in case) and a Clifford video. We didn’t find one but I found a cheap Thomas video and one with several Nick Jr. characters doing bedtime stories including, but not limited to, Wonder Pets, Blue, and Dora. Perfect.
We got back to Juanita teaching CJ about swimming in chocolate pools (not a bad thing at all) and to say “AWESOME!” (could be a bad thing). She was feeling restless so we went for a walk!!! She was raring to go and didn’t have to asked twice. It’s the first walking she’d done since Wednesday and that wasn’t much. I guess it was the first real walking since Tuesday night.
The rest is actually nice and boring. The Bonitas left, Charlotte and I snuggled on the bed for a bit, I got into my jammies, and here I am typing the update. I can deal with boring for a few days.
There! Got it done in under 3 pages!

Charlotte Admitted to the Hospital

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

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

That's about as much as I know.

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

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

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

Gotta go get ready for another busy day.

Rachel

Update:

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

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

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

But I'm getting ahead of myself.

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

Update:

A relatively short update:

The end

Interesting Day Yesterday

I never heard from the media folks at the Houston Astros so we decided to just go and buy tickets. They have a cool deal for the summer that children get in free. We drove down to Minute Maid Park and found a tremendous parking spot right across from the Left Field entrance. Cancer really, really sucks but some of the percs are very nice, like handicapped parking!

We got in an got settled in our very nice seats. The weather is extremely hot and humid and we were "angsting" about where we would sit so the sun wouldn't be shining right on Charlotte and where we could retreat from the heat if it got too overwhelming. We held up the line at the box office trying to get just the right seat. Turns out we didn't need to worry; the roof was closed and the weather inside was fine.

All morning long, CJ had been kind of lethargic and I was starting to get worried that maybe she was getting sick or something. The "or something" part was actually really worrying me. It's been a brutal couple of weeks within the Caringbridge community and several of the children whose stories I've been following have passed away. Whenever I hear of a child passing, I go back in the journals and read several of the posts leading up to the passing annpouncement to see what happened and how things progressed. Yesterday that practice kind of haunted me as Charlotte's energy level kept going down and I got more and more worried about what might be happening to make it happen.

At the Astros game, we went into the store to get her a hat or jersey (pink, of course) but she would have none of it. She just wanted to be held and bury her head in my shoulder.

She had no fever, she wasn't feeling sick, she wasn't in pain, and she was eating (certainly helped make a dent in a bag of popcorn and some ice cream). She even wanted to walk after a bit (bored I guess) and we walked about 3/4 of the way around the stadium before she petered out and made me carry her.

So I was at a loss to figure out what was wrong and the fear was threatening to take over.

We lasted until the 7th inning stretch and then headed home. Charlotte conked out on the way back to the house (the only other warning sign) and I took a nap too. When we got up we headed over to our hosts, the Beasley's, home for dinner. Charlotte was STILL lethargic and I was wondering if we were going to have to take her to the emergency room. The thing was, other than the low energy and the nap, nothing else stood out.

So my habit of checking out the lead-up posts on all those other Caringbridge sites was backfiring on me because I was starting to go through worst-case scenarios.

Then, all of a sudden, she seemed to brighten up remarkably and told me, "Daddy, I pooped!"

That was it. Rachel remembered her mother saying something about that kind of pattern before and we also realized that it had been multiple days since her last BM. It all made sense.

So it all comes back to poop. The theme of our lives.

After that, Charlotte was like a different kid. She was sitting on the couch, entertaining herself like usual, singing to Mickey, rading stories to herself, watching the occasional video...

We headed back to the other house (where their daughter lives) and tried to get to bed at a decent time because we had early Monday appointments. Of course CJ was now wired and we had to set her up with books and videos while we rested. Fortunately, she took my word for it that we needed to go to sleep so she let me clear things off the bed and pull up the covers.

This morning we headed out early and got the MD Anderson in plenty of time for our whirlwind day of waiting.

I keep trying to put my "day of fear" into some kind of perspective and I just can't right now. It was mostly irrational fear fed by looking at other kids' sites, most of whom had conditions not related to the PNET in Charlotte's head. I need to digest it a while longer. I also don't think I'm describing it adequately. I don't even think Rachel has a clear idea of how I was feeling. Guess she will now, sort of.

The best news of the day is that we called Ronald McDonald House and they have room for us!!! We'll be heading over tonight to get settled in. SO that means we need to contact the Hoston Ground Angels to see if they can give Rachel a ride to the airport tomorrow on very short notice.

I'm on it!

Update:

Welcome to our new home away from home. We have been admitted to the Ronald McDonald House and can be here for the next 45 days if needed. At only $25 a day, you can't beat the accommodations! It is fabulous with a play area, lots of space for cooking, we have our own room with 2 beds and a bathroom, and even the "house dog"...a labradoodle named Mogie.

We can receive mail while we are here. The address is:
1907 Holcombe Blvd
Room 27
Houston, TX 77030

The morning was pretty much spent with paperwork and an anethesia assessment and now we are just resting before our trip over to the proton center at 3 PM. Charlotte had to be NPO at 5 this morning because of the anesthesia they will use and, of course, she did not get up at 5 AM to eat so we are all trying not to eat in front of her. But mommy and daddy have to keep their strength up so we are sneaking bits of cracker and granola bar here and there. She is holding up pretty well. We will have to FEAST tonight.

I'm very glad that we have the housing settled before I have to leave tomorrow morning. I am not looking forward to leaving the 2 most important people in my life for almost 2 weeks but we do what we gotta do!

I think we're off to play and explore so we'll talk to everyone soon.

Rachel

Update:

What a long day. A good day. A productive day. But a L-O-N-G day.

As mentioned earlier, we have found our lodgings here at the Ronald McDonald House. It's such a great place for families in our situation. We are about a mile from the main MD Anderson campus and the shuttle can take us pretty much anywhere we need to go. It even goes to the grocery store once a day. They have full kitchen facilities for us to use and lots of community items like seasonings, eggs, condiments, etc. so that cooking is pretty easy and doesn't always have to be ramen noodles!

Plus, almost every night, a community group comes in to provide dinner and sometimes even additional activities. Southwest Airlines is bringing a group tomorrow and rumor has it that their events are not to be missed. Some of their volunteers are already here starting to roast the brisket for tomorrow night (can you tell we're in Texas?).

After we left RMH (as we will probably refer to it in future posts), we took the shuttle over to the proton center which is pretty much on the other side of the hospital area. It's about a 20-30 minute ride by shuttle. Charlotte was pretty quiet and mellow most of the day. She hadn't had anything to eat since last night and they'd only allowed her about 4 oz of juice after 10:30. Amazingly, she only told daddy one time that she was hungry. When he told her she couldn't eat until after she saw the doctor, she never asked again. What a trooper. I, on the other hand, was famished!! But didn't want to eat in front of my NPO child.

We got to the proton center and had very little wait. We immediately met a string of professionals including our Nurse Practitioner, the oncology fellow, and then Dr. Mahajan who is her radiation oncologist. We discussed the treatment plan, they went over all the possible side effects, and then we discussed the fact that she would be having whole brain and spine radiation after all. Roger and I were confused for a little while, mainly because Dr. Wolff and Dr. Khan had maintained that proton therapy was not necessary for whole head and spine radiation and that we were going to focus on the tumor area. Turns out that's not exactly the case and in fact, she stands to benefit more from whole head/spine radiation due to the location of her tumor and should receive less effects from the radiation on areas such as her thyroid gland and other vital organs by receiving the proton therapy.

After we met with the radiation oncologist, the anesthesiology crew came in. Dr. Porche is her primary anesthesiologist and she is such a sweetheart. She just swooped Charlotte up in her arms and began to sing to her and ooh and ahh over her. So nice! The nurse anesthetist (sp?) also informed us that while she was receiving proton therapy, they would change her dressing twice a week, do all the line flushes, and basically take care of anything else that needs to be done with her lines. Hooray.

Finally it was off to the simulation. Charlotte got to actually "administer" her own juice by starting the pump and pushing the syringe to flush the line. As tired as she was, she was out in no time. Then we got to meet with the research nurse to go over permissions for them to study Charlotte's blood and DNA as well as participate in a longitudinal data study for basically the rest of Charlotte's life to help them study long-term outcomes of proton therapy. This means that data such as hormone levels, cognitive tests, etc. will all be collected at regular intervals on her. Anything that will help kids down the road, that's what I say!

We also met the Child Life Specialist who told us about some upcoming kid's events and offered some ways that their services could be helpful.

Did I miss anyone? There were a lot of people to meet. Soon enough, Charlotte's procedure was finished and we went to meet her in recovery. It took her FOREVER to wake up but she finally roused (with some assistance from us) and we shuttled her back to RMH with some dinner. Roger took Merrilee's car (she had left it for us at the proton center) back to their home in Jersey Village and collected all of our belongings and made his way back to RMH all in one piece.

We must make yet another (although I'm sure it will not be final) note of thanks to the Beazley family for their most gracious hosptiality and help with this process. they have gone above and beyond and we are grateful to them as well as to Mitch and Meredith Hayes for making the connection.

So we are basically "moved in" and settled. Clothes are unpacked and put in dresser drawers. We have a moderate supply of groceries and snacks that will last until the next grocery trip. I have given Roger many final instructions and reminders on her appointments, etc. (I tend to be the "manager" of all that information. Surprised?). I am leaving early tomorrow morning and only taking my big purse/tote bag with me. No clothes (they can stay here for my return trip), no diaper bag (whoopee), no stroller. Just me, myself and I.

See many of y'all back in Richmond. I've got a lot of work ahead of me and Charlotte and Roger have quite the adventure ahead of them.

Rachel

Her Protocol

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

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

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

Gotta go wake up the princess.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rachel

Every Day is a Bonus

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks,
Rog

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

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

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

Thanks again to everyone for coming out for the fun!

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

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

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

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

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

Rachel

Staying Busy, Fundraising Update

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

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

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

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

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

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

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

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

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

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

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

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

Rog

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

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

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

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

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

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

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

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

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

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

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

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

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

Signing off...
Rachel