"Cancer sucks 99.99 percent of the time.

"Cancer sucks 99.99 percent of the time. But if you want your pool cleaned the next day or you want to go to the head of the buffet line, cancer rocks. Yeah, .01 percent of the time, having cancer is a real plus." -- Robert Schimmel in Cancer on $5 a Day* (*Chemo not included)I have been reading this book and it is great. It's a short read (less than 200 pages) and chronicles Schimmel's battle with non-Hodgkins Lymphoma. He is a rather crass comedian so some of the humor is on the harsh(er) side but I dig it. The memoir is both poignant and hilarious. He also lost his son to cancer 8 years before his diagnosis so he's seen cancer from many aspects. Highly recommend.In other news, Charlotte and I had a busy day. I had a part recalled on my VW so we had to trek over to the west end to get it fixed today. The guy at the dealership that checked us in saw Charlotte curled up in my arms (not wanting to be put down) and said, "Oh, someone's sleepy today? Yeah, my kids didn't want to get out of bed today either.". The guy meant well but all I could think was, "Dude! You have no idea." She had her hood up on her jacket so it was kind of hard for him to see the "cancer kid" hidden underneath all those clothes. This is just one example of the funny (funny-strange) ways that cancer effects your day-to-day life that you really don't think about until it happens to you. I mean, before this, I would never even THINK that a kid holding tight to mom for dear life was doing so because she was exhausted from chemo and wanted nothing more than to curl up and go to sleep...because of CANCER. So it stands to reason that other people would not make that assumption as well. And yet, you want to sit there and scream, "No! You idiot! My kid has cancer and gets toxic chemo medicines every week (every day) that drain her system of her last ounce of strength! She can't walk normally and doesn't have normal balance because her THREE brain surgeries have damaged her nervous system and all her coordination. Possibly permanently. She has a compromised immune system that makes any little germ a possible source of infection. She can't even get her regular immunizations because her immune system is shot. She hasn't been to preschool in almost a year and she hasn't had a normal playdate with another kid in months. Don't even THINK about telling me that YOUR kids are like MY kid. Don't even THINK about telling me how you can relate!!!"But I didn't say that. Thought it. Didn't say it. We all have our issues. Anyway, we went from the VW dealership to Occupational Therapy where Charlotte endured 45 minutes of clinical torture. She started off ok but had a really rough time and wanted to call it quits less than 30 minutes in. We took lots of breaks and gave her lots of encouragement. Still got the heartbreaking tears that made me want to cry myself!I grabbed a quick bite to eat on the way to the clinic. Charlotte munched a few crackers and a bit of cookie. Once at the clinic, they looked her over and got my report from the weekend. Amazingly, she didn't lose any weight but I am sure the overnight fluids helped that. We talked at length with the NP about the shakiness, lack of appetite, and fatigue. The best conclusion that we could reach is that Charlotte probably has Secondary Somnolence Syndrome which is a fancy term for an intermediate after-effect of the radiation that hits (surprise!) 6-8 weeks after the last treatment and (surprise!) causes fatigue, nausea, vomiting, and anorexia (lack of appetite/eating). So, that probably coupled with the effects of the Velcade is the best explanation for her current situation. It is expected that these symptoms will dissipate in about 2-3 weeks. Sometimes they will give steriods to help with the symptoms but they don't really think that is indicated in Charlotte's case. Her numbers were actually halfway decent so she got her flu shot (minimal drama), got her Velcade, and we were sent on our way till Thursday. They're going to order a few more packs of IV fluid to have at the house just to keep her sugar and hydration up. They did also check her blood for other levels such as thyroid, vitamin D, etc. just in case but so far everything looks ok.So that's pretty much it. She fell asleep on the way home and is currently resting in her "downstairs bedroom". I may seize the opportunity to get some paperwork done.Rachel

In the last 3 days, Charlotte has slept (and slept) (and slept).

In the last 3 days, Charlotte has slept (and slept) (and slept). Wednesday wasn't much better than Tuesday. She spent most of the day asleep, practically catatonic, and/or in bed resting. We were really getting worried since she wasn't taking in much food or drink and she hadn't pooped in DAYS. Yesterday, Roger took her to the clinic bright and early. She was still very sleepy. They agreed to give her IV fluids and she got about 2 hours worth. They also said that if she didn't improve significantly, they would have IV fluids brought to the house with a pump (we've done this before). She did get her Velcade but we had to put off the flu shot yet another day. We also got the prescription for the valproic acid BUT she threw up on the way home so Roger didn't get a chance to fill the Rx. She went home and got Zofran and went almost straight to bed (again). She was asleep by 5:30 PM. She slept the whole night. Now she is up and at least drinking a little (she has to drink a few sips before I will let her watch more video). Roger also got her some pedia-lax. Not as strong as the lactulose but with the lactulose she has to drink a LOT and with this she just has to keep some fluids going. I am hoping that if/when she poops she will feel much better. She already seems to have a bit more energy today but she's also still in bed and just watching videos. I am debating whether to take her to PT this afternoon. Going to kind of play it by ear.Aside from that, Roger and I just keep staying busy with work and our other endeavors. We have a busy weekend ahead with RNR events galore! Also, have you looked at the ticker lately? We've surpassed 160K!! Wow! That's an average of 17K hits per MONTH or almost 600 hits per DAY! Y'all are a devoted group of fans. I have said it before but it is worth repeating: Thank you to everyone who has given us their support these past months. Whether you have made us a meal, provided monetary or gift card donations, given gifts for Charlotte, covered shifts at RNR, organized fundraisers, sent a card, gave a hug, or just prayed for us and our little girl, we appreciate your support. Roger and I hear a lot about how "strong and amazing" we are. We definitely appreciate the praise and I have to admit that I'm kind of amazed myself...but NONE of our strength would be possible if we weren't bolstered by the incredible support that you provide. Even if we don't take you up on something you have offered, please know that just the fact that you OFFER to help lets us know that we have a soft place to fall if we need to. That makes the whole process just a bit easier. With that, I will close and ready myself for a busy Friday and even busier weekend. Happy Fall Y'all!

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

Today marks 8 MONTHS since we started this journey.

Today marks 8 MONTHS since we started this journey. That seems like a long time. And yet the year seems to by flying by. I can't believe we are already thinking about Fall....Halloween, Thanksgiving, and (gulp) Christmas. Crazy!!! Charlotte has been doing well the last couple of days. Her biggest symptom is being "tired". She just doesn't have the energy level of a typical four year old. Our days have been busy with treks to OT, PT, the clinic, etc. Saturday we even went to the Children's Museum so Charlotte could show granny her Kourageous Kids picture. We played there for a while as well and she had a good time. As always, it is SO nice to have my mom here. It definitely allows Roger and I the flexibility to work as we need to. Plus she has a GREAT time with her granny and Uncle Kolbey too. Friday she had a minor meltdown in Physical Therapy. She is working on some tough stuff including bending down, getting up from one knee, and picking objects up off the floor. All things that are challenging to her. We were about halfway through when she just broke down crying (correct that:WAILING) about how she was tired and didn't want to work anymore. We're using a rewards system and everything but I guess we're just going to have to "ramp up" the reinforcement schedule (shout out to all my fellow behavior analysts!!). I foresee M&Ms being added to the reward lineup. Tomorrow is one more clinic trip for the Velcade and then we're off of that for two weeks. Have to work out things with her Accutane prescription because (true to form) things got a bit mixed up in the transition between Texas and Virginia and since Accutane requires an act of Congress (practically) in order to get a prescription filled we have to jump through more hoops and cross more t's. Sigh. Busy week ahead and then Charlotte is off to NM with Daddy so Aunt B can shave her head along with 5 or 6 other brave souls for the Head Shaving Party: West of the Mississippi version. They will just be gone for a long weekend. Before I forget, I have been nominated by someone (I wonder who???) for the Richmond Mommy Makeover Contest. This is the same website that sponsored Roger's Great Richmond Dad contest. I have the opportunity to win a makeover (insert joke here) if I get enough votes....SOOOOO if you feel I am deserving of such an honor (???) cast your vote HERE. Voting ends next Saturday, the 26th.

New drug, Velcade

Hi everyone,Not too much in the way of updates but here is the latest:Charlotte got her new drug (Velcade) yesterday. It took a while to get everything set with the meds and the infusion but once they got everything they needed at the clinic, the whole process took about 5 minutes. The biggest side effect for her right now seems to be sleepiness. She fell asleep around 5 PM yesterday and woke up about 7 PM (just as I came home from work). Then she was up until almost 2 AM and at 11:40 AM on Thursday, she is still asleep! So needless to say, her schedule is a little "off". Otherwise, she seems to be ok. The word from the pharmaceutical company that administers this drug is that successive doses have to be given at least 72 hours apart so she will get the next dose on Monday and then probably Thursday of next week. Then another the following Monday. I am stil nursing my infection/cold. The antibiotics are hopefully doing their thing. The cough is S-L-O-W-L-Y fading and I still can't hear anything out of my left ear so my tube must be completely clogged. Joy. I am slowly getting some energy back so that is good. We have a busy fall session coming so I must convalesce quickly!!Some other news is that Three Oaks Montessori has given Charlotte "Honorary Student" status. They are going to include her in as many activities as she is able this year and are going to try to help us with meals as well as bringing her baskets of activities at home from time to time. We are very grateful to Kim, the director, for this offer and hope that we will be able to have Charlotte participate as much as possible. A few of Charlotte's friends from her old "Montessori House" are at Three Oaks so we hope this will be a good transition. Plus they are trying to get a Romp n' Roll 2 Go mobile program going at the school so it should be great all around!Thanks to Meredith for bringing us dinner yesterday. It was YUMMY!!! (and healthy).So she has PT this afternoon. Roger went in to work this morning and I have the PM shift. Busy weekend ahead. No news on the MRI but we will let you know when we know. Rachel

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