So here's the latest:The word of the day/week is TIRED.

So here's the latest:The word of the day/week is TIRED.Charlotte woke up Sunday morning with kind of a low-grade fever. She never went above 100 but she was very tired and spent most of the day being a couch potato. We let her rest and scrapped plans to go to the field hockey game. She just enjoyed her last full day with Granny.Meanwhile, Roger and I did check in on the Ladies Field Hockey team. We got there with about 15 minutes to go in the game and watched them beat Wooster 2-1!! That's three wins in a row! Then we headed off to a wedding.Monday was B-U-S-Y. I had a dentist appointment. We shuttled from there to the clinic where we waited. And waited. And waited. What was supposed to be a 10:45 appointment had us going in to get vitals at 12:15!!! Apparently the clinic was overbooked (go figure) so they were running behind (an understatement). I let them know in my (hopefully) nice but forceful way that we had an OT appointment at 2 PM and we would need to leave by 1:30 if we were going to make it on time. This was right before 1 PM. Fortunately, her Velcade had been ordered and was ready so after a cursory update with the NP, we decided to forgo the flu shot until Thursday, give the Velcade, and then she was going to have to call me about the Valproic Acid. Because apparently even though it has been on her protocol since we got back from MD Anderson AND we were in the clinic last week for a visit to check on anything, they waited until MONDAY to try to verify the dosage and treatment protocol. At least she got the Velcade. SighThe Velcade pretty much wiped her out. We did manage to get to OT on time and she worked really hard but she barely lasted the 45 minute session. Then we took Granny to the airport and headed home. She was asleep before 9 PM (early for her) and slept till after NOON today. It's a little after 5 PM and she is back in bed. Not asleep but she wanted to get in bed and watch movies. In the little time she was "up and about" today, she and Roger went to the grocery store and then I met up with them at Ashwood Gardens to get our annual pumpkin collection. As many of you know, Roger is our resident pumpkin artist and always comes up with some creative creations. I have some ideas for him so we will see what happens this year...Oh! More big news on the fundraising front: My good friend Amy held a yard sale for Charlotte at her home (Cincinnati) last weekend and raised about $2000 for us!! I was so excited when she called to tell us. Thanks so much, Amy! (and friends). That is about 3 months of OT/PT!Also, discussion is moving on the nonprofit/foundation front. As usual, we put the word out on CB and our network gets rolling. We are hoping to have something in the works before the end of the year. That's all I have for now. Time to go fix some dinner...Rachel

An Update

Very good day overall yesterday.

Charlotte slept in a bit and, when she did wake up, took her accutane in the morning with only a minimal of drama. It DID take a little piece of chocolate to seal the deal but you know what we say about chocolate...

Our appointment for the "weekly see" with Dr. Mahajan was at 11:30 so the New Mexico contingent came by right at 11 and took us over. Aunt B came into the exam room with us and Uncle Ted and Aunt Lynn stayed in the lobby. Rachel had drawn up a small list of questions/concerns to cover including what chemo drug to have CJ on after the 2 week regimine of accutane ends (today). It's obvious that Dr. Mahajan and Dr. Wolff don't see entirely eye to eye so decisions are made with a certain amount of blood loss. The proton beam protocol is still so new and some of the chemo agents have been out such a short time that they are in the dark about many of the radiation/drug interactions. The worst part is when Dr. Mahajan says, "We just don't know." It's honest and makes me understand their hesitation but it's still an urgh. So I guess I'll be the squeeky wheel today, trying to get someone to make a decision because what is completely unacceptable is Charlotte NOT taking anything because they "just don't know." Dr. Mahajan reiterated what I've heard many of her team say about thinking "outside the box" but I think whenever they look outside the box, they feel like they're flopping around like fish outside the aquarium. Very intelligent, well educated, and highly compensated fish. Fish who drive BMWs and Mercedes 700 class sedans!

We also talked about possibly squeezing the last treatment (which is on Monday, August 31) into the week before so we might be able to come back that weekend. I’m pretty committed to CJ getting all of her treatments so just lopping the last day off is not an option for me. Dr. Mahajan said they could possibly do two treatments on one day but that would be two happy juice sessions which would be pretty hard on her. Something else for her to ponder.
Overall, she was pretty happy with Charlotte’s progress.
After the “weekly see” we went back out to the lobby to wait until they called us for the treatment. The appointment was supposed to be at 1:30. At 2:10 or so, I finally asked one of the medical professionals to get me an update. Apparently, it was either a bit beneath her or she has a shorter memory than me because after she went into the back for a bit, she came out, walked right by us, didn’t acknowledge us, and went through another door on the other side of the lobby. Finally, I saw Trish from CJ’s team walking by and grabbed her. She went back and it must have been time because she and another nurse both came out to get us. It was 2:35. CJ wanted Frosty sung which I guess has been something of a rarity the last couple weeks so they were happy to oblige. Any excuse to hear CJ do her famous “STOP!”
One humorous observation is the occasional nurse/doctor/technician who just obviously doesn’t feel comfortable singing with the rest of us. Yesterday, one nurse actually tried to separate herself and stand all the way across the room near the door. I DON’T THINK SO! Lyrics were thrust into her hands and she at least gave it a go. Once CJ gets into the gantry, she’s a queen. Maybe that’s why they’re behind so often. I’m sure they treat all their patients that way.
After handing over CJ, we went out to get lunch. I tried to navigate but I ended up making us drive 10 miles to go 2. We ended up driving through the medical center to go to Chipotle (your choice of pronunciation) just down the street from the proton center. Mmmm! After not eating much all morning, it didn’t take me long to polish off the entire burrito.
CJ had just come out and was sleeping in the recovery room when we got back. Aunt B and I had a great little “small talk” conversation waiting for Charlotte to wake up.
Here’s an Awww moment…I pick on my sister quite a bit. I’m the little brother, it’s my job. But I’ve said it before, Becky quite often gives me fresh perspectives on things and I’m sure she usually has little or no idea she does it. My brother Vance does that too but he’s much more obnoxious about it! ::-) While I’m here, I should also talk about Uncle Terry (Ted, Tedricks, Pieface…) and Aunt Lynn (Lynnard). They’re sister and brother too…not in that order…then again… I admire them both very highly; mostly for how hard they work and their dedication to the family. The whole family is that way. My mom was pretty formidable when it came to defending her kids and my Aunt Moreen raised two pretty awesome kids as a single mother. My Aunt Debbie passed away relatively young and dealt with kidney transplants, dialysis, needles, and all the typical medical indignities. Hell, Grandma Jay is still plugging along in spite of a stroke she had several years back. She is one tough bird! It all makes my family pretty strong. We’re quirky but strong.
Back to our story…Charlotte work up slowly and was kind of surly until we got back to The House and got some Chocolate milk into her. She perked up after that and then promptly peed on me. She was sitting on my lap and her diaper must have been more full than I thought so all of a sudden I felt to wetness! Not too much of a mess and it was a great excuse to get her into one of the MANY new outfits the NM contingent got for her. She was pretty damned cute in the new pink dress.
THEN it was off to Costco for the traditional pizza and ice cream. I just wanted to get dinner but Aunt B and Aunt Lynnard kept finding stuff they or we had to have. I don’t mind. I got the second season of Flight Of The Concords out of the deal!!!

Oh yeah, I found out that they were trying to get us a limo for our date night but the Tim McGraw concert at Reliant Stadium snapped them all up. What a great thought. Thanks guys!

Charlotte was definitely feeling better. We got pizza and after I took off the cheese and scraped off plenty of sauce (real and imaginary), she ate more than her half of the slice. Costco slices are huge! She also ate all the ice cream I gave her and finished off a good handful of animal crackers before bed. She even took all the accutane as long as I put drops of it on her animal crackers. Go figure!
Need to mention that to the nutritionist at our appointment this morning.
Then she proceeded to stay up until 1:30AM!!! What did Aunt B do to her?!?
Time to get her up. May not be pretty!

Facts about Proton Radiation and an Update

Some fun facts about Proton Radiation:

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

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

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

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

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On a more personal note:

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

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

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

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

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

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

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

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

Busy Couple of Days

It's been a busy couple of days. The rest of Thursday went off without a hitch (so to speak) and she actually got in to Proton Therapy only 15 minutes later than her appointment time. A new record, I think. After that, we went over to the Galleria Mall again so Charlotte could watch the ice skaters. She really enjoys this. Plus it's nice and cool by the ice rink. We also found a Sanrio store (home of Hello Kitty!!) and had dinner at Rainforest Cafe. It was good food and Charlotte liked watching the animatronic "wild" animals putting on a show with their noises and antics.

After that, we went back to the camping truck because Juanita's son Phillip was going to appear on the Speed Channel on the show Pinks All Out. It's a drag racing show and this episode was in Texas (he lives in Lubbock). He raced his green pickup truck (most of these cars are classic, souped up dragsters) and actually made it into the top 8.

Went back "home" and Charlotte wound down with an evening of books, videos, and playing with her horses. That has become a favorite diversion. She puts them in the green drawstring bag. Then she takes them out and puts them in the "barn" (the wooden shadow box they came in). Then she takes them out and moves them around the room. Then she puts them back in the bag. It's like the shoelaces but a new obsession.

We got some great packages in the mail including a set of about 30 craft projects with all the materials (conveniently placed in individual ziploc bags) from my Aunt Shelley. Just have to get her interested in those. She did like that they came in a plastic container with a pink and purple lid!!

She refused to take her accutane last night (I didn't do a very good job of hiding it). Oh well. This morning I had to wake her up and she started the day kind of grumpy. Again, I couldn't get her to take the medicine (this time in applesauce) and about the time Grandpa showed up, she had gone into a full-blown crying jag. Just very emotional. She screamed, "I MISS MY DADDY!!" and just sobbed. Poor thing. She has been so much more emotional lately. Some of that is actually a side effect of treatment (especially the accutane) but I think it is more a side effect of just STRESS. Her life is so out of control and I think that a lot of it catches up with her at odd moments so that the least little thing sets her off. It's become kind of a pattern. She usually calms down after a little while but I've learned not to push her to do something unless it's really vital.

We decided to head off to the Science Museum anyway and see how the day went. She definitely calmed after getting in the car and once we were to the museum, she was fine. Thanks to our Houston connections, we pretty much had free tickets to the exhibits we wanted to see. We spent the morning checking out the main exhibits (dinosaurs, other animals, a great Native American exhibit, a fantastic seashell collection, and a gem and mineral collection that was beautiful). We also went to see the butterflies. Very impressive as well and I think this was her favorite part. Charlotte was tolerant of most of the events but if I stopped at any one exhibit for too long she would say (from the stroller) "Keep pushing, mom!".

We left the museum after a huge rainstorm (that we thankfully missed) and headed over to the PTC. One of the patients (an older gentleman) who was having his last treatment was treating the other patients and their guests to a concert. He and his wife are musicians. She played piano and he played saxophone and fiddle and sang with a drum track behind them. It was pretty good and the crowd was lively. Charlotte even bopped to the music a bit. She went in kinda late again today (not too bad) and we did our "old routine": Go get some lunch, run a few errands at Target, etc. and head back to the PTC. She woke about 4 and we went back to the camping truck for dinner. I did manage to get BOTH doses of accutane into her by the day's end so that was good. Now she's reading her books and settling in for the night. I think we're going to head to Galveston tomorrow while we have family and a car available.

Good night all!! One week down, one more to go (for me) and 4 more to go (for all of us).

PS: Charlotte Says, "HAPPY BIRTHDAY AUNT B!!!!"

Rachel

Cleaning up from the POOP!

"When the gods want to punish you, they answer your prayers." --Karen Blixen in Out of Africa

I woke up at about 6 AM this morning as I usually do. Turned on NPR, laid in bed, listened to the construction sounds outside our window (they are building a road and bridge near RMH and start working early due to the heat...just starting to take in the day. I got up to check on Charlotte and saw that while she was still sleeping, her diaper had busted full of POOP and had leaked all over the bed. I proceeded to get her cleaned up, including a fresh diaper, removed her nightgown, and moved her (naked except for the diaper) to my bed while I cleaned everything up. She went right back to sleep.

I went downstairs thinking that at this hour, we would have plenty of empty washers. My mistake. 4/5 of the washers were occupied (at 6:30!!!) and the other one was out of commission due to service needs. I went to ask the front desk attendant what she wanted me to do with the soiled mattress pad since we aren't supposed to wash that in the regular washers. She went ahead and took the pad and the sheets and put it in the commercial washer they use for the big jobs so my laundry could wait till later.

I went upstairs with a new pad and sheets, remade her bed, and heard Charlotte awaken, telling me the plot of some Wonder Pets episode. I fudged the NPO rule a bit so she could take her accutane with some applesauce. It was early enough that we should be ok. Then we got ourselves ready and headed into the clinic. I like our walks to MDA. It gives me a good chance for exercise and Charlotte gets some fresh air. We told Reh about the good news (yay, poopie) so the enema was off the table (hooray). They drew her labs. Counts are still low but OK and Dr. Vats checked her out. The stiffness in her legs seems better today so he wasn't too concerned. We decided to just keep going with the accutane the way we are giving it (rather than compounding it) and he gave some tips for helping us make sure we get the right dosage out of the capsule.

So we headed back to the house until our PTC appointment later today. Grandpa and Bonita are meeting us here with Charlotte's new scrubs. Daddy wanted her to have some scrubs so he found a pattern and Bonita found some cute fabric and she set to work. I think Daddy is getting a matching set. Rumor has it, Broncos fabric is on the way too.

She is now enjoying PBS (Word World and Barney).

So the prayers for poop can subside a bit. How 'bout just prayers for regularity? That'll do.

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

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.

Low Key Days

A moment to breath between things.

Charlotte is hanging in there. She's definately starting to show signs of chemo side effects. Less energy, dark splotches under the eyes, etc... You wouldn't have known it by looking at the pics Deb took of her last night, though! As soon as they get all uploaded and to us, we'll share a few or you can go to Facebook and see them on my, Rachel's, or Deb Mead Harper's site.

Aunt Phyllis is back home and Granny and Gramps got here safe and sound yesterday.

Next week starts the next level o' crap. CJ finishes Accutane and starts on a new, far more toxic, drug. We have to mix it into applesauce or something but we have to wear double gloves and masks, prepare it in a room far away from food, have no air movement, click our heels three times and say, "Peace in our time" over and over again.

Rachel took CJ into the clinic this morning and it seemed to go well enough. Qdoba and Costco were also on the agenda. They saw her "other boyfriend" Cole at Qdoba which was a nice bonus.

Enjoying it while we can. The sequestering begins soon. Yesterday, she was saying something from the back of the car that I couldn't understand and she wouldn't say it louder even though I asked her three times. Finally I turned off the air and radio and heard her say, "Daddy, I don't like being alone." Where she got that or from where it came, I have no idea but I tried to reassure her several times that someone will always be with her. Could be time to have her sit down with Dr. Matt. Maybe it's the chemo talking. Not sure.

Don't forget the Bazaar tomorrow at St. Anne's Catholic Church in Ashland 10am-2pm.

Enjoy the heat!

Update:

If I were to describe the last few days with Charlotte in two words, I would say "low key". The good news is she seems to be weathering the current chemo regimen fairly well. No nausea, no vomiting, we FINALLY had a poop today (hooray for poop) but she's definitely been more tired and more likely to want to just "chill out". And that's OK!

We had a photo shoot last night with Deb Harper. She's a romp n' roll mom who also takes fabulous pictures. Some posts ago, we announced that she is doing "Pictures for Charlotte" where she will do a photo shoot with your family, edit the pictures, and give them to you on a CD in exchange for a donation in Charlotte's name. She has already booked 16 families (!!!) and last night it was our turn to mug for the camera. She has posted some of the pics on Facebook (they are awesome!!).

On a photography note, a Star Wars enthusiast group called the 501st Legion is going to be taking pictures (in costume, of course) at the next Rompy's Summer Concert Series. For a suggested donation of $5, you can get your picture taken with Darth Vader, storm troopers, or a whole host of characters from the Star Wars Brigade. Big thanks to Jim Woods, RMC soccer coach and RNR customer, for organizing this on Charlotte's behalf.

On a more clinical note:
Yesterday's and today's clinic visits both went pretty well. It was a busy day in the fishbowl but they still got us out of there by 11. We saw Reese and her mom the last two days. Sherry and I got to commisserate (sp?) a bit about the draining treatment regimens. Draining on our kids as well as us. We are advocating for some "adult life" services in addition to the fabulous child life services available at the hospital. I mean, why can't we get a little Tiki Bar put in the clinic? While our kids are getting their infusions, we can get ours...

But I digress...

After the hospital, we went to Qdoba for lunch and had a very chance meeting with Charlotte's friend Cole. He goes to Charlotte's preschool and they just happened to be getting lunch at the same time. They seemed to have a good time seeing one another and talking a bit. From there, it was a few more errands and now we are home. I'm quite exhausted and need a nap (or more caffeine?) and Charlotte seems to be keeping herself busy.

We found out that the Accutane will stop tonight. No chemo over the weekend and then on Monday she will need to go in for blood draws and THEN (assuming her counts are good) she will get the two meds (one oral and one IV) so it could be a L-O-N-G clinic day on Monday. At least they warned us this time.

Roger is working a MARATHON day at RNR with 4 classes in the AM, a birthday party, and THEN Kid's Night Out till 8:30. What a blast! I'm sure he will come home tired. My turn for the marathon day tomorrow.

Big reminder about the Home Based Business Bazaar at St. Ann's church from 10 AM-2 PM tomorrow. Big thanks to Jackie Plank for organizing this and all the vendors for putting it together. This is a great time to start your Christmas shopping or find the perfect birthday gifts for everyone on your list.

Gotta go seek out some mid-afternoon caffeine.

Update:

Ok, so if you didn't notice, Roger and I posted separate but similar journal entries only minutes apart. Yes, our strange synchronized brains work like that somehow...enjoy the weekend!

Rachel

A Busy Day

Guess I wasn't kidding when I said, "so much for my 15-minutes."

Today was supposed to be a lazy day for Charlotte and I - putting up pictures in the office, shelf braces in the downstairs closet, eating cereal with no milk,"watching shows that Charlotte likes," things like that. Rachel went in to to do birthday parties and I offered to come help a little since the two "helpers" were new and could use a little extra on-the-job-training.

I was on the way down when I got a message from Rachel that Charlotte had been invited to the 1pm Birthday Bash so I turned around and came back to get her. We slathered sunscreen on her for the second time since the accutane has the wonderful effect (among others) of making her extra sensitive to the sun. We also changed her dress because some of the jam I had given to her on bread for lunch found it's way to her very nice blue dress that Aunt Phyllis had found for her this morning.

It was ok since I went and got that pink dress she wore in the Kourageous Kids (sp?) photo shoot. She looked adorable of course. While we were there, Michelle Reynolds' (wife of my cousin Jeff and mother of Savannah) mother came in with an interactive bear that was a gift from her "Women Of The Moose" organization. It's very cool with headphones and a DVD and I'm thinking I might have more fun firguring out how it works than Charlotte will once I do. Thanks to them for that!

Well, not long after that, we found out that one of the helpers wasn't coming in to work so I officially became "on the clock. It wasn't too diffucult to do since CJ was an actual guest of the first party. The hard part was going to be what to do with her during the second party. We'd figure that out when we got there.

That question was answered when CJ was sitting on the chair behind the front desk and suddenly started crying saying that she had hit her head on the chair. The padded chair that she had been lightly bumping her head against since she could sit there. What it actually was (probably) was the onset of some of the side effects of the Accutane. One is headaches. So while mommy got her an ice pack and held her while she cried (quite heavily actually), I got the car and pulled up to the front and Rachel loaded CJ into her seat.

She was pretty groggy and unhappy on the way home so we stopped at "Old McDonald's" and got a small milkshakeshake. Charlotte wanted to wait and "eat" it at home so we started off and before we got out of the parking lot she was asleep.

When we got home she woke up a little but I shooed everyone out of the house and got her comfortable on the couch and for one blissful hour (plus 15-min or so) the house was silent and Charlotte slept. I dozed too which was nice.

When Rachel got home, CJ woke up and complained about her head again. We tried to give her liquid Tylenol but she wouldn't have it and only wanted Meltaways. I think it was effective as much as a placebo as anything. CJ and I went to hang out in her "upstairs room" because she was still a little tired and wanted more quite time. After a little while of looking out at the trees getting buffeted around by the wind, we read a book and went back downstairs for dinner, meds, and "something Charlotte likes" on demand.

We did all that, watched some Thomas The Tank Engine, and got ready for bed. She read her books, threw them out of the bed, and at last check, was sining to herself in the dark.

By the way, the second party went very well and Rachel and Lindsey rocked on the BB without me.

I discovered a good way to get her to take the Accutane without changing the routine too much. I mixed it with the Amoxicillin she's used to taking already and she didn't have any more trouble with it than usual. The hard part is getting the Accutane out of the capsule and into the oral syringe. Rachel figured out that it's actually liquid in there! Who'd a thunk it? So now we pop a hole into the end, drip it into a large lid and mix it with the Amoxicillin, then take it all up into the syringe and then we do the usual dance of talking her into taking it.

Here's something fun to do if you live, or plan to be in Grandpa's and Juanita Bonita's neck of the woods next month:

The Good Shepherd lutheran Church in Morristown, TN is sponsoring of a Benefit Pancake breakfast along with Applebees Resturant from 7-10 am on July 18, 2009 for Charlotte at the Morristown location on AJ Highway. Tickets cost $5.00/person for all you can eat pancakes, bacon, coffee. Applebee's provides the cook and food and the members of the Church will wash dishes and wait on customers. Tickets will be available at the door or from Charlotte's grand parents (Grandpa and Juanita Bonita) at the Hamblen County Car Club Cruise-In on Saturday night or the Church.

Next events for us here in Ashland are the Home Business Bazaar at St. Anne's Catholic Church on June 27th and the July 4th parade and pahtay! I've been asked to be a judge in the best apple pie contest and I want to get as many of the nominated great dads together as possible to march in the parade. It's completely casual and doesn't take long to walk. It's mostly for the kids (and bassett hounds).

Did I mention that as soon as Charlotte "rings the bell" we're getting a dog? Hanover SPCA of course.

So go watch "Little Miss Sunshine" twelve times on the Oxygen channel.