Oh! The Chafing!

At the risk of slighting those of you in the “over 21” age range, I am rarely inspired by grownups anymore.  Not that grownups don’t do amazing deeds all the time, it’s just that on average, those deeds pale in comparison to what “our kids” achieve daily.

Len on the road

                This weekend, I was inspired by a grown up.  His name is Len Forkas and he (along with many others) got on a bicycle in Oceanside, California and pedaled nearly 3,000 miles across the United States, all the way to Annapolis, Maryland in what was called the Race AcrossAmerica.  Not only that, he won his division (50-59 years old) and placed 10^th overall, edging out riders much younger than himself.

                Len had a bucket load of inspiration as he was using the event to fundraise for Hopecam.org, the non-profit organization he founded that connects homebound children undergoing treatment for cancer, and other life threatening illnesses, with their friends, families, and schools using laptops, high speed internet, and web cameras.

                Charlotte received a Hopecam notebook computer while she was undergoing treatment and we used it for Skyping, emailing, writing Caringbridge updates, and most importantly, for the Reading Vigil. We played recordings of friends/family reading books to CJ and people Skyped in from all over including our friend, Dr. Karen Massar who, while sitting in The Netherlands, read to Charlotte in Dutch.  It’s still one of the most beautiful things I’ve ever heard.

                One of the methods employed for keeping the purpose of the ride front and center (not to mention keeping Len pumped and focused), was to dedicate each day of his ride to one of the many children who have benefited from Hopecam’s endeavors.  On that day, Len would be read descriptions of the child as he rode. Charlotte got day 8 and a video dedication.

They also invited Rachel and me to Annapolis to be among the cheering crowd as Len crossed the finish line.  The wonderful people at Hopecam, including interim Executive Director Jennifer Bond, took very good care of us, paying for the room at The Doubletree Hotel and breakfast Sunday morning. When it became clear that Len was going to get in much later on Sunday then they had anticipated, they offered to pay for another night at the hotel so that we could stay and still see Len cross the “FINISH” line Sunday evening.

We didn’t mind since Annapolis is a beautiful town and was calling out to be explored by us. We figured we could leave early Monday morning in order to get Rachel to work in time.

So after a full day of walking, we settled at the courtyard into which the cyclists would be riding and waited.  There was a rather long time in between finishers which gave us time to network with people in the Hopecam crowd and with other riders’ crews.  One Canadian rider, nicknamed “The Hammer,” actually got hit by a car in Arizona yet was relatively uninjured and finished the race in ninth place overall.  One member of his crew had the torn up jersey he had been wearing at the time of the crash and waved it as he crossed the line.  There are many other stories and not nearly enough space.

Len hoisting his bike in celebration

We finally got word that Len was on his way and the large Hopecam crowd excitedly gathered around the finish line.  When he came around the corner in the dark with his various lights shining and blinking like a big rig on the highway, the crowd went nuts, us included.  When he got off that bike and immediately bent down to greet all the children who were assembled up front (and there were a LOT of them), it showed, even in his exhausted state, where his priorities lay.

Shannon

Soon, the emcee brought Len on stage to receive his medal, given to him by two time survivor and Hopecam beneficiary, Shannon Eastman.  Len wasted no time making sure everyone knew who the star of this event was.  “I just finished the toughest bike race in the world but it’s peanuts compared to what Shannon has had to do.” With Shannon standing close on the stage, he said, “I could stop at any time, Shannon couldn’t.  She had to finish.”

Throughout the evening, I found myself wondering over and over again, “How can I do something like this?”  It wouldn’t be easy.  Just thinking about the amount of time and effort it took to train Len, assemble the crew, plan who was going to do what and where, not to mention feeding everyone, is enough to make a lot of people quit before they even begin trying.

Roger, Len, and Rachel

But you know us; especially when we’re inspired.

Anyone wanna go for a bike ride?

Headed Home Soon

This has been a good few days. On Friday, we took the little girls (CJ and Tricia) to see The Princess and The Frog. It was fabulous with lots of great music and humor for all ages. CJ was entranced and Tricia fell asleep halfway through (it was just at naptime). Friday night we ventured over to Orlando for the first night of Hanukkah (Chanukah/Honika/CCHHHHanukah). My high school pal Kim was hosting a Latke Party at her house and it was very fun. Roger and I even spun the dreidel a bit.

Saturday, we decided that CJ liked The Princess and The Frog so much that we went for a second time. CJ even wore her Cinderella costume this time. I think we all still liked it just as much (if not more). The music is still floating around in my head.

Then it was on to my mom's house where we were joined by most of our family: my mom and stepdad, mom's sisters (my aunts), their spouses (my uncles), cousin Sarah, her husband John, their daughter Tricia, and my godmother Mary Ann. The only significant omissions were Kolbey (currently holding down the fort in VA) and cousin Gina (stuck in Seattle). We missed them but it was a good time had by all. The eating was GOOD. My Aunt Shelley did 99.9% of the cooking and it was a feast full of all the comforts of home: turkey, ham, the "family recipe" stuffing, mashed taters, kahlua sweet potatoes, cranberry sauce, green beans (gotta have something green), and pumpkin pie and assorted sweets for dessert. YUM!

After that feast, we all retired to socializing. CJ fell asleep in Granny's arms and after a while we retired to the condo. I didn't sleep well last night. I've had mixed feelings about returning to Virginia. I have definitely missed home but this has been such an enjoyable vacation. Roger is pretty much ready to go back to work and will probably resume many of his RNR duties during the next week or so. I'm still not sure what I am ready for. There's multiple reasons but suffice it to say that I'm just not quite there. Anyway, eventually I did fall asleep only to be awakened by CJ calling me at about 4:30 AM. she was up in bed and her diaper had somehow come undone so the bedding was all wet. I changed her and got her out on the couch and then set to cleaning the bed linens. About 6 AM I woke Roger so I could get another hour or so of sleep. Then we headed back to mom's house about 8:30 for breakfast.

Breakfast was an encore of last night's dinner and nobody complained! There was plenty of food and it was really good. We're not a family limited by the "rules" of what is or is not breakfast food.

The family hung out for a little while longer and then the S. Florida contingent said their goodbyes. The day was sunny (finally) so mom and I took Charlotte out for a walk in the neighborhood. Shortly after our return from the walk, Charlotte indicated that she needed to poop and wanted to lie down on the floor (this has become a regular habit). We tried to "get things moving" with belly rubs and leg pumps but after a half hour, nothing was moving. We had a pending appointment (which I'll get to in a moment) so we put CJ in the car and headed out, hoping for the best.

Our pending appointment was a lovely venture on a boat. Our family friends, Don and Joanne Hawkins, had invited Roger, Charlotte, and I to take a ride on their boat on the intracoastal so we headed down to Ponce Inlet for an afternoon journey. In true form, Charlotte fell asleep on the way there. She actually stayed asleep for the whole boat ride(!!) Roger and I enjoyed the experience, though. It was lovely to hang out on this boat with such lovely people. The weather was perfect and the scenery was gorgeous.

On the way home, Charlotte stirred a little but she definitely did not seem comfortable. We got back to my mom's place and tried to encourage "the poop". She laid on the couch for a while, dozing off and on. Finally, Roger held her for a while and she let go. It was a MASSIVE poop. Then she fell asleep again. She's been asleep off and on since about 2:15 PM (it's now 8:30) and she doesn't seem too happy. Not sure what she wants...

I think this is where we are headed. I feel like we've taken a turn in the process. Not sure where things will go from here, but as Roger and I have said before, our vacation could not have had better timing. So tomorrow we head for home. We will leave for the airport about 1 PM and we should arrive in Richmond (assuming all will run according to schedule) about 9:45 PM. SUPPOSEDLY a limo will be waiting for us upon arrival. I think even with all the gifts we've accumulated along the way, we are only going home with one extra bag and maybe one box mailed to the house.

Before I forget, a few "Read to CJ" requests have come in. I have not really responded to them yet but that will be first on my agenda when we get back. If you are one of the many who expressed interest in reading to our girl, please go to our website and click on the CONTACT US link. You can send an email directly with your availability or desired dates to read to our girl. We will start this on 12/16. We don't have many definite plans other than home health visits so we are probably pretty open. Visits from kids are welcome too.

So I bid farewell to our FLA friends and give thanks for the wonderful hospitality we have received from friends and family while we were here. To our Virginia friends: see y'all soon!

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!

Charlotte has Done So Well today!

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

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

This One Will Be Another Epic

Wow! Y'all had to wait nearly two full days for an update. Sorry it took so long. This one will be another epic. In Word it was 4 pages long!

Just got done trading harrassments with my wife so now I'll concentrate on the update.

To start off, Katie Udell down under, the t-shirt was made by the mother of one of our friends and Romp n' Roll regulars, Megan Blake (also, and most unfortunately, another Caringbridge member). I told her she could start a little cottage industry making those. By the way Megan's mom, any way we could get a new pink one in a 5-t for Charlotte (her's is getting a little grimy and she loves wearing it) and a matching one in Large for a woman here at The House? I'll GLADLY pay for both. I'm telling you, they would be lining up if they could get them out.
OK, wow, where to start. Yesterday, we sort of slept in and still noodled around part of the morning after we got up. I was going to try to go the big dog show that was going on at the Reliant Center just down the road. If figured CJ would like it and I knew I would totally love it. Especially if I got to see some of my favorite breeds up close.
Things were progressing nicely, we were getting dressed, snacking, reading, watching videos…Then I tried to get CJ to brush her teeth. Holy Mother of Rhodes! Saying she had a melt-down is like saying the QE2 is a big boat! And we had been doing great up till now.
Thus started about a two hour wrestling match during which I actually got her to promise that if I didn’t make her brush her teeth, then she had to take her vitamins. That lasted until she got a vitamin, which she used to LOVE, near her mouth. Melt-down Part Deux! Then it just dissolved into crying and screaming for no apparent reason. She told me that. I asked her why she was crying and she said she didn’t know but she certainly was shedding a river of tears. I tried to take her downstairs to play…no deal. When I finally did get her down to the lobby, she found occasion to cry at every turn. She wasn’t mad at me as she clung to me on the couch and didn’t want to let go.
I had spoken to a woman earlier about bringing her daughter with us and “carpooling” to the dog show (her daughter was to undergo brain surgery on Monday-today) but I wasn’t sure we’d even get out the door the way things were going.
When it got to be now or never time, Charlotte settled down and told me she still wanted to go to the dog show so we packed up and headed out. I wasn’t feeling very optimistic that CJ would last very long but one cute thing she did was leave Mickey on the bed saying that Mickey was a mouse and we were going to a dog show. Then I suggested we take Rompy and she thought that was mildly amusing.
From here out, she was an angel. Guess she just had to get it out of her system. She sat in the stroller and actually wanted to be where Calle and her mom were and paid attention to the dogs we were viewing. She really like the obstacle course where the dogs jump steeples, go in and out of slaloms, and zoom through tunnels.
We saw dogs of every shape and size including a great dane that seriously considered devouring Rompy and I got to see some of the most beautiful animals I have ever seen in my life. Alaskan huskies, bull mastiffs (one was 225lbs!), and the biggie, Bernese mountain dogs! Ah, yes. Go here and feast your eyes. http://www.google.com/search?q=bernese+mountain+dog&rls=com.microsoft:en-us&ie=UTF-8&oe=UTF-8&startIndex=&startPage=1
I didn’t get to see any Irish wolfhounds which are the other favorite of mine but there we lots of Bernies to behold. There were booths with the various breed rescue organizations and I saw the beagle booth but they only had one very old beagle that wasn’t very representative of the breed. Seemed kind of strange. I saw no other beagles the whole time we were there. Beagles and beagle mixes are just about the most common kind of shelter dog (at least around Virginia) and they make awesome pets. We’ve rescued all of our animals and totally recommend everyone do the same. I love looking at the purebreds but in the end, a shelter dog is a better choice for us.
So, back to the story, after a bit, Charlotte actually got out of the stroller and walked quite a while. We then decided the kids had seen enough and we headed back. It was a very nice event and the fact that it was 5 minutes from The House was bonus.
Later that night we went to the airport to pick up the Beazleys and relinquish the truck. It was coming up on 9:30pm by the time we picked them up and started back and Charlotte zonked on the way. In the confusion of the load-out at The House, I left my cell phone in the truck! Talk about fortuitous circumstances, I didn’t have either of their numbers memorized and almost panicked BUT, it just so happens that I had started compiling a list of our Houston contacts “just in case.” I was actually going to leave the Beazleys numbers off because, hey, they’re already programmed into our phones…Good thing I ignored that impulse. They just happened to stop off at a nearby drugstore and were still close so it wasn’t a big deal to swing back around.
Silly me. Lucky me!
Now to today (which by now is yesterday!).
This morning I woke up at 3am wide awake and it took a long time to wind down. Then as I was dozing back off at about 4, Charlotte decided to wake up. And I mean with vigor! She started talking and singing loudly, very clearly and very wide awake, and as soon as she realized I was awake, she just HAD to be in my bed. So over she came. Fortunately, she fell back asleep sometime around 6 (not sure because I dozed too) and slept in until almost 10!
She had about as lazy a day as ever while I puttered around doing laundry (did the sheets, pillowcases, etc…as well), playing online and cleaning the room. I figured we need to straighten things up and clean for when CJ’s counts plummet which they’re supposed to. Back to germophobe 101.
One of the better events of the day, as usual, was poop. Three sizable poops to be exact and every time, she turned into a different Charlotte, a little bit happier each time. Quite honestly, I can’t say where it all came from. It didn’t seem she had eaten enough to account for all of it but I’ll take it.
Another thing she’s been doing is taking my running shoes (it HAS to be the running shoes) and pulling out the shoelaces. She plays around with it for a while and then re-laces the shoes, CJ style. This activity has taken up HOURS of her time the past week. It’s good for her fine motor skills, keeps her in one place, I don’t mind wearing one shoe at a time around the lobby.
The one not so good development I’ve noticed is that she has gotten stiffer in her legs and although I’ve been stretching and massaging them, she needs a real PT/massage therapist to work on her. I’ll check into that tomorrow.
Speaking of tomorrow…The past 3-4 days have been days I'll never forget for as long as I live. I didn't think I could bond with Charlotte any more than we already had but especially today, it has been filling me up. We’ve been doing very little, actually, but the whole “vibe” today has been next to magical. Just little things like honking noses, following each other aimlessly around the lobby, her telling me over and over, the subplots in her Dora and Blue's Clues videos, etc…
There's a certain bitter-sweet quality to it and the last part of the movie "A.I. Artificial Intelligence" keeps intruding into my thoughts, the part where the androids bring the “mother” back to life for one day so the “son” can see her again and have that one perfect day and, of course, nobody in the audience wants it to end.
These have been her last few "good" days before starting up the proton radiation/chemo and I can’t help but dread the inevitable downward spiral (which, by the way, is becoming her favorite shape. How deep is that?) waiting for us as treatment, and the family fun side effects, begin to take their toll. I’m so appreciative of having these special days with Charlotte. I’m sorry Rachel wasn’t here for them since she will be coming back after the treatments begin and will have to deal with the “sunburn,” the chemo, the oh-so-fun temozolomide (there are chocolate bars in the bin in the fridge) pretty much as soon as she steps off the plane.
I just want to hold her and kiss her all the time (I think she’s getting irritated with the kissing part). It’s 1:30am and I don’t want to go to sleep, even though we have to get up super early to eat something before she goes NPO at 5:30am, because she’s over there less than three feet away from me sleeping like a little angel and I can’t get enough of her.
Fortunately, there will be support here for us during the most trying times as Grandpa and Grandma Bonita are headed this way and the New Mexico contingent will be here the 8th of August. We are also developing quite the Houston based network of people who know people following Charlotte’s progress.
The letters and packages are starting to come in. Thanks to all for those.
Now for something COMPLETELY different! I NEVER do these sorts of things on Facebook (surveys, quizzes, junk like that, especially where you’re supposed to tag people to do the same quiz or whatever). I really LOATH doing those, but one finally caught my interest. It’s the “put your ipod on shuffle and make a list of the first 15 songs that come up” game. Now, I had seen this before and I was like, “Whatever.” But local Richmond musician, Desiree Roots did it and sent her list to me. Her list was so cool, I figured she'd appreciate mine. I didn’t “tag” anyone or anything like that. I just put there for her and all to see. And it came out very cool! Here’s what came up…
1) Bills, Bills, Bills - Jonathan Coulton
2) London Bridge Is Falling Down - Romp n' Roll training songs
3) Union House Branch - Allison Krauss & Union Station
4) Digging In The Dirt (Live Version) - Peter Gabriel
5) Southern Soldier Boy - Southern Horizon Civil War Band
6) Simplicate - Upper Left Trio
7) On Your Way Down - Little Feat
8) Happy Trails - Veggie Tales
9) Hold On - Yes
10) Bangs - They Might Be Giants
11) Story Of Little Boy - Tommy Emmanuel (story, not a song)
12) At The Still Point - The Story
13) A Token Of My Extreme - Frank Zappa
14) In A Silent Way (DJ Cam Remix) - Miles Davis
15) Come Over To My House And Play - Veggie Tales
16) Speak Low - Dianne Reeves (bonus due to 11 not being an actual song)

So we step into the next part of the journey in just a few hours. I can't tell you how much we appreciate all the thoughts, prayers, beams of gold and silver light, etc...sent our way. We certainly don't feel alone.

Some Bad, But Not Unexpected News

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

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

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

Love to everyone,
Rog, Rach, & CJ

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

An Update from Houston

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

I'll try to get this done by midnight.

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

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

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

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

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

But I digress

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

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

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

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

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

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

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

Buenos noches and adios amoebas!
Rog

A Big Day

Big day followed by big day.

Charlotte did very well yesterday considering her anti-social tendencies these days. The football player visit at the clinic ended up being very cool and video of the crew singing "Frosty" was on CBS 6 yesterday. She was singing right along.

Then we headed back to RNR to get things set up for the concert. We cut things a bit close but it all worked out. Even the weather cooperated!

When I couldn't be at the concert last night, CJ hung out with Uncle Kolbey or Mommy. She was very excited to see "Mr. John" John Robison who heads up Southern Horizon (my Civil War era band). When Rompy showed up, Rachel had to tell her it was Daddy before she would come close.

Rachel already gave you the numbers but it doesn't really tell the story of how cool the vibe was last night. Everyone was having a good time and I think we surprised the Chick-fil-a folks with how successful the evening turned out.

Thanks to everyone involved. Definitely a group effort. And today will be just as nuts!

Now for get well wishes to someone else: our wonderful utility infielder and ebullient front desk staffer, Margie Madrigal has been quite under the weather and is recovering at Henrico Doctor's Hospital. Please put her on the lists.

I'm including a photo of the 501st Legion of Vader's Fist, Rompy, Mommy, and the princess in front of the VA Blood Services bus. The storm troopers kept aiming their weapons at Rompy for some reason and Obi Wan tried to "fix" Rompy with his light saber!

A very good time and more will be had tonight. Hope to see you all there.

Update:

What a great party! I don't think Charlotte's birthday party could have been much better. Thanks to everyone who was able to come out and give the princess her send-off to TX. We had a GREAT crowd and I think even Charlotte had fun for a bit. She certainly ate a lot of cake!

There are many people to thank. First, thanks to Jeni for making the beautiful (and yummy!) Tinkerbell cake and to our NM/CO family for ordering the yummy DQ ice cream cakes. There is some (but not a lot) left over. That goes to show you what a crowd we had!

Next, a HUGE thank you to our staff, many of whom were there tonight and worked hard to make this party a success while being "off the clock". Roger and I appreciate the time and effort you all put into your work and especially the time you put in "unpaid" on Charlotte's behalf. The party would not have been quite the success it was without you. BIG thanks to Annette for guarding the desk, Anna and Lindsey for guarding the moonbounce, Anthony for doing a lot of cleanup and blowing up balloons, Kolbey and Annette (and Michael and Babz too!!!) for assisting big-time with cleanup, and I'm probably forgetting specific things but THANK YOU to all the Romp n' Roll VCM staff who were able to be there tonight. This warrants a further shout-out to Margie who is still very under-the-weather. We missed you this week and wish you a speedy recovery!!

Another big thank you to the family and friends who just helped with every little thing tonight (putting out napkins, blowing up balloons, taking out the trash...you name it!). Many of you have future careers leading romp n' roll parties...

Thanks for the cards and (yes there were a few) gifts. Some of you even got sneaky and brought presents "for Roger and Rachel because you only said no presents for Charlotte." Nice. Some of the cards that were handmade by the kids are really great! I got an extra SPECIAL present this evening. A bunch of you (and you know who you are) all chipped in and got me a FULL SPA DAY at Divas which I plan to use sometime after I come back from these first few days in Texas. What a very special and much needed gift. You bet I will use it!!! I understand Meredith was the Queen Bee organizing this effort but thanks to all who contributed as well.

So we are home. Charlotte is asleep. We are (mostly) packed. Just down to the final few items and then it's time to get a few hours' sleep before a big trip to the airport EARLY in the AM.

Our next post should be from TX.

Rachel

Happy Birthday to Charlotte!

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

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

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

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

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

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

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

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

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

Update:

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

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

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

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

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

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

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

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

Rachel

A Whirlwind of Developments

Hi everyone,
This has been quite the week and it's not even close to being over! Today was a whirlwind of developments. We simply got too antsy waiting for the folks at MCV to get us details about out treatment at MD Anderson so we started making our own phone calls and waddya know?!?! We got stuff done! We got our flights for Saturday, rides from the airport, a place to stay (at least for the weekend), a social worker at MD Anderson (who is amazing!), an appointment at the Proton Center, our "My MD Anderson" account set up, and a thin mint! I got the thin mint. Rachel did everything else. We still have some details to iron out including our long-term housing arrangements but it's definitely steps in the right direction.

Charlotte had a very good day except for when she fell on her butt coming in the door (no damage but lots of drama) and when Wyatt turned off the TV because he wanted CJ to play with him and she had a melt down.

Rachel took Charlotte to the clinic this morning and I got to do stuff at home and go running.

Charlotte had a good potty day as well! She told mommy her bottom hurt and Rachel took her to the bathroom and low and behold!!! She did both (pee and poop)! We are trying (slowly) to get her back into that idea of using the potty. Some new tinkerbell panties from Aunt B might just help things along. We don't want to rush things but...it's time.

While I was working at Romp n' Roll tonight, the rest of the family went over to Wyatt's for dinner (where the TV meltdown took place). It was a lovely evening, eating dinner outdoors in the "country" while the kids played.

Big events coming in the next few days. We'd love to see folks at the concert on Thursday in the Chick-Fil-A parking lot (5:30-7:30). Then Friday will be her party at 6 PM at Romp n' Roll. We have said no presents...AND WE MEAN IT!! She has more than enough toys and clothes. We just want to heap on the love! A HUGE thanks to Jeni Mauney (a Romp n' Roll mom and good friend) for making a cake for the party as well as to Roger's Aunt Lynn and the NM/CO crew for ordering her DQ ice cream cakes. We will have PLENTY of cake for everyone. Don't forget to wear your pink and/or purple in honor of the princess.

One final note I will leave you with: the other night as I was flushing Charlotte's lines and putting her to bed, she said, "Mom, you and Dad take really good care of me." Sniff, sniff, AWWWWW! That was definitely a sweet moment! Nice to hear her say that. I can't believe she will be four. What a journey this has been. I still remember that little 6 lb, 12 oz rocket baby that showed her stubborn strength from the very beginning. She has always been a fighter and we will continue to fight. She was born strong for a reason.

Ok, I'm done...

Rachel & Roger

Planning to go to MD Anderson in Houston

Not a lot of new news except that Charlotte's numbers seem to be improving rather than tanking like they were supposed to. She is just amazing!

She's been taking her icky medicine with a minimum of fuss. We've developed the technique of giving her a little bit of meds, then a little piece of chocolate, then more meds, then chocolate, and so on. Before she knows it, the icky stuff is gone and all that's left is the good (relatively) tasting medicine.

She had a pretty mellow day watching a video or two, playing with the shoelaces from my running shoes, and opening a box of birthday presants that came from Clampitville (Aunt B and Uncle Hairy). Very nice gifts folks even though we expressly said, "NO PRESANTS!" this year since she's got so much stuff already and has been getting presants almost constantly since "The Crap" began.

Speaking of Aunt B an' 'em, We got to chat with them via the Hopecam all the way from Hawaii. We (or rather "I") also chatted with the Prices for a short bit as well. CJ wasn't all that interested.

Right now, she's over at Uncle Kolbey's threading frog beads onto a string. She's getting really good at that again.

Rachel has been doing most of the work today, taking Charlotte into the clinic and then going in to Romp n' Roll for the afternoon/evening shift. I get to work hard tomorrow.

I took advantage of my free 90-minute massage today at Massage Envy. I was quite the noodle afterwards. I might get a membership because I really want that once a month! :-)

So...what the heck is on the horizon? We are almost assuredly going to MD Anderson in Houston for the proton beam radiation. We're still not 100% sure when we're going, or how we're going to get there, or where we're going to stay but there are sure a lot of resources out there of which we could take advantage. Thanks to all of you for forwarding those resources to us, especially Deb Price (Nile's mom).

There's a strong possibility we will have to postpone Charlotte's birthday party. Very disappointing but CJ's treatment comes first and we know we'll get the absolute best care at MD Anderson.

I've already contacted the Houston Ground Angels and they'll be helping out with getting us where we need to be. You want an organization that is worth a hefty donation? There you go. Here's their address:
Houston Ground Angels
P.O. Box 683127
Houston, Tx. 77268-3127

Here's the website: http://www.houstongroundangels.org/

There's a bowl of ice cream calling me.

A Great Day

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

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

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

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

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

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

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

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

Update:

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

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

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

Update:

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

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

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

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

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

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

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

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

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

Now on to an ice cream party!

Charlotte made her "Wish"

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

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

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

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

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

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

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

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

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

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

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

Update:

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

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

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

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

Remember: two upcoming events for her birthday

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

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

Rachel

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.

More Good Days

The good days keep piling up. Charlotte had a great morning of reading, drawing, and playing. Phyllis reorganized the office and I helped her get the old futon mattress under the new one. Now we have a very tall bed! Can't wait to sleep on it.

Rachel worked Camp Rompy this morning and I stayed home. Among other things, I went to the post office to send out some letters including a small package to PIXAR Animation Studios with some pictures that CJ drew and a thank you letter. Extra shout out to Sean Feeley for helping out with all that.

Meredith and Anya came by to pick up Charlotte in the early afternoon and the three of them went to their house, put on some girly clothes (including tutus) and went to a dance class! The picture is attached.

While CJ tripped the light fantastic, I collected some leaves and twigs for the kindling pile and did some wood chopping which always makes me feel manly!

Then it was off to Romp n' Roll to teach the afternoon/evening classes. Charlotte came down to visit with Mommy and Phyllis who were on their way, eventually, to Bed Bath & (WAY) Beyond. When I got home, Charlotte was hanging out, watching Caillou (who looks an awful lot like her friend, Larson, did as a very young boy).

She gave a big yawn and went right to bed when mommy asked her to. She read her books for a while and when she was through, she tossed them out onto the floor, as she is prone to do. That's usually my cue to ask her if I can turn out the light. She usually says yes and is zonked in a bout two minutes.

So guess what?!? We have a procedure planned! CJ and I will be going in to get the LP (lumbar puncture) Thursday. Other than that, what do YOU think? We don't know anything. We'll probably know more very soon though.

The possibility of going to Shands in Jacksonville, FL for proton beam radiation is very high. I'm pretty sure we would stay in Jacksonville and make occasional trips down to Daytona Beach to visit Grasnny and Gramps (or they would come to us). My dad has volunteered his palatial RV for us to stay in for at least a little while since CJ likes the "campin' truck" and would probably be comfortable there. We will also explore Ronald McDonald house and other Hospitality House-type places.

I'm guessing but treatments would probably run 6-8 weeks. Rachel and I would set up our schedule so that one of us was down there constantly and then we would switch off every two or three weeks (we think).

All just conjecture. We really don't have a clue yet.

Cluelessly yours,
Rog