Clarifications, Expositions, and Compositions

First off, I guess I need to clarify a few things. More than one person was a little confused about my Facebook post concerning January 22, 2009. That was the date of Charlotte's first surgery to debulk the tumor in her brain. 6:30am was about when they started getting her ready.

Aunt B mentioned CJ doing her princess wave as we walked by the 7th floor lounge at MCV. I had almost forgotten that. I was so freaked out inside that my head was feeling fuzzy (the way it does when I REALLY get upset). I remember feeling that I needed to keep it together as we walked down the hall to the elevators. I'd seen this scene before in countless movies and TV documentaries wondering which way the dramatic shoe was going to fall at the end. (Does my life completely revolve around mass media!?) The real terror is light years worse in person, believe me.

Down in the pre-op area was where Mommy sang Frosty to her just before they wheeled her into surgery.

I remember shaking inside. Not shivering like being cold but more like a constant vibrating; like there was a humming going on inside me. Weird, I know.

I also remember feeling so completely helpless.

So that's what Jan 22, 2009 was all about.

On to other things...It's great to commemorate, bad to dwell.

Here's my Facebook post from 4:00-something this morning:


"Yesterday was halfway decent, considering... Spiritually, musically, financially, geographically, gastronomically... I'll do a full blog post later today but I just got back form Shepherdstown, WV and I need sleep." Can't believe I could even type at that point.

To expand...
Spiritually - I was ready to be very mopey, grumpy, and unhappy all day yesterday. Just didn't happen. I thought about Charlotte all day and had a "moment" on the road just south of Shepherdstown, WV but for the most part, I was moderately cool.

Musically - Uptown had a workshop/gig at Shepherd University yesterday which went VERY well. The workshop was supposed to be aimed at the vocal students. They don't have a jazz vocal group yet but seem very ready to jump in and try. Ginny and I were going to split the time with me giving some fundamental, before-you-form-the group homework and Ginny guiding the group singing portion. We were also asked to touch on the career aspect of music, being honest but not terrifying the students! :-)

Well, of course, I kind of got on a roll talking shop and hogged most of the time. We did the other stuff but it was more like 80% Rog and 20% everything else but the students were responding and we were learning stuff. Some were even TAKING NOTES!!! Uh-oh...

Funny side note: I also spread the Pomplamoose word. I was doing the shortest possible bit on improv and mentioned that the easiest way to start getting licks under the belt was to sing tunes they already know with just syllables. I started with quick examples like the ABC song, Happy Birthday, etc... Then I started "scatting" "All The Single Ladies" which really seemed to amuse them. Then I digressed, as I usually do, and told them about Pomplamoose's version. (Jack and Nataly, I'll expect a check (or maybe just a bar of soap) within the week.)

The evening concert went very well and we got a standing "O!" There was also good, moderately healthy food in the dressing room including a bag of Gala apples! Yum! (That's the "gastronomic" part)

Because of circumstances I'll go into later, I drove myself up to the gig. I ended up taking Highway 340 into Shephardtown which unexpectedly found me in Harpers Ferry. I was inspired and pulled up "Tom Burleigh's Dead" by Eddie From Ohio. I think I listened to it 4 times in a row. Perfect! Here: You should too! :-) OK So it's only a snippet - Go buy it for Pete's sake!

By the way...what a GORGEOUS area of our country!

To close out the musical portion of this epic, here is a message I got from Julia Dollison. Though you'd might like to see it.

"Thinking of you lots today...

Kerry and I just finished tracking a cappella vocals for his transcription of Keith Jarrett's live (improvised) solo piano recording of "Radiance 8" (commissioned by Long Beach Poly). I added lyrics to it this past fall, but now that we're finally laying it down, it occurs to me that they're really about CJ.

As much as I wanted to post this on your wall, I didn't want to take up that much space, but you're welcome to share it if you wish. We'll send you our recording as soon as we mix it down... :)

xo,
JD

(Roger's note: Kerry and Julia are mutants! In a good, musical way, of course)

**

Sometimes in her sleep, she smiles.
Is she dreaming? is she far away?

Sometimes in her sleep, she laughs.
Is she happy? does she wish she could stay?

Sometimes in her sleep, she cries,
and you hold her and pray.

Morning comes, and she'll forget -
Things we dream about never make much sense.
Then the sun shines in, so bright,
just like her radiance.

All these moments fly by so quickly,
but she never seems to mind -
as long as you're by her side.

Sometimes in her sleep,
She awakens to find you were there all the while.
With a smile, she returns to her dreams."

Beautiful. I'll leave you with that for now. More later.

A Very Long Post

First off: On Saturday there are two things happening which involve members of the Reynolds family.  I'm (Roger) singing with the Uptown Vocal Jazz Quartet on Saturday in Bethesda, MD. I'll include part of the email sent out to our fan list.

The other is a prayer service at Trinity Episcopal Church in Fredericksburg, VA starting at 5pm.  Rachel and Charlotte will be there.

The double booking is my fault.

Here's the email that went out:

"Just a friendly reminder to come on out to the historic Theatre in downtown Bethesda this Saturday and catch Uptown Vocal Jazz Quartet in a live show. We’d love to see you there, and even if you can’t make it, please spread the word to your music-loving friends!

Saturday Nov. 21
7:30 PM (one show)
Bethesda Theatre,  Performing Arts Center Boro Stage
7719 Wisconsin Ave., Bethesda, MD
Tickets available at the door ($25) or in advance via InstantSeats ($20)

Today we met with the entire MCV team including Dr.s Tye, Kahn, Massey, and Nurse Joann, Nurse April, and the Nurse Practitioner Debbie Shockey.  The purpose was to go over our options and for them to answer our questions about what to expect during the next few weeks.

The main thing is that they really can't say exactly what will happen or when.  They're just going on what they've seen before.  Everyone's different. Dr. Tye did reiterate that without the shunt, she certainly wouldn't have seen Christmas and might not even have made it to Thanksgiving so thanks to the shunt, as we like to say a lot, every day is a bonus; especially now.  Also, thanks to Dr. Tye and the shunt, we all agreed that there's no reason to think the Disney World trip won't be amazing for everyone.

They have discussed our situation with a neurosurgeon friend/colleague in Orlando and the hospital down there has been made aware of CJ's condition in case we should have a complication of some kind.

We went over whether or not CJ's immune system will recover since she is no longer receiving chemo (maybe), whether she will need any special medications or a respirator at any time (yes, to keep any seizures controlled and no, as it will probably not be necessary.  If she is ever in breathing distress, we'll give her oxygen) We will not be taking any heroic measures when the time comes.

For the most part, we're planning to keep Charlotte at home.  Critical Care will be available to us as well as something called Noah's Children and everyone on the team told us we're welcome to call them any time and even to request a home visit if necessary.  They all love her too.  We also still have the option of bringing her into the hospital at any time if it seems too much for us to handle.

As a concerned parent of a child with a terminal diagnosis, I wasn’t completely ready to give up and I spent a large amount of time researching alternative therapies.  I found a few interesting possibilities and dug into one in particular.  It is all about high dose ascorbic acid (vitamin C) treatments.  There are a few papers about it online and I was intrigued.  I forwarded several links to Dr.s Tye, Kahn, and Wolff and told them to tell me why we wouldn’t try this.  I sort of answered my own question when I found a site that reported another study on the dangers of high dose intravenous ascorbic acid (IAA).  Dr. Kahn confirmed it during the meeting.  The main problem is that the side effects are pretty bad and the track record of IAA is spotty at best and I refuse to put Charlotte through any more of that.

We will be getting her stitches out on Friday morning and occasional shunt checkups but other than that, barring any complications, that should be just about all for the hospital trips.  If she has another seizure, they would still like us to bring her in for a scan to make sure it isn't the shunt getting clogged (which is very possible)

As expected, it was a difficult meeting but one thing that Dr. Kahn said was extremely heartening.  With these kinds of tumors, there is very little, if any, pain. That is absolutely the most important thing for Rachel and me and gave us an extra layer of comfort.  We probably won't need much in the way of pain meds.  Of course, if she is in any pain at all, we'll be ready.

As her condition progresses, we'll probably see a slow but steady decline including a slowdown in eating and drinking and sleeping more and more until one day she might sleep for maybe 24-48 hours and pass in her sleep (isn’t that what most of us say we want?).  Who knows when that will be?

As we said before, it’s so incredibly sad that our perfect little princess will be leaving us so soon but at the same time, Rachel and I have found a certain amount of peace about it all.  We have had the incredible opportunity to spend a great deal of quality time with Charlotte and know that she is still enjoying life.  She is not the Charlotte of a year or even a month ago but she is still breathtakingly beautiful and continues to amaze us with her strength. She laughs when we tickle her, she remembers stuff from when she was two, she still sings to herself (which is one of my favorite things about her) It’s so amazing that we KNOW what’s going to happen and we’ve been able to start saying a long, experience filled, love/hugs/kisses laced goodbye.  We’ve been able to move through a large chunk of our grief (anger, denial, most of the fear-that’s a big one, etc…) already and to know that we gave her the happiest time that we could in the small amount of time that we’ve had with her.

Not that everything’s all hunkey dory.

Last night I found myself losing sleep worrying about the fact that we don’t have very much video footage of her. “What will I have to remember her by?”  “How will I ever remember what she looks like?” “We should have taken more pictures of her!”  “YAHHHHHH!!!!!” My thoughts did that spiral thing that gets me sometimes.

Then we had a great day today.  Mommy got some great alone time and CJ and I got to go for a long walk.  We went to Randolph-Macon College and stopped off at the fountain (the Frank E. Brown Fountain Plaza).  She has always LOVED fountains and that fountain in particular. We went in to see Barclay in the bookstore where Charlotte got an R-MC lanyard, an apple, a Jakers (PBS cartoon) book, a severed tiger tail (leftover from the Hampton-Sydney game), and $85 from bracelet sales.  She always ends up with stuff!

After that, we went back to the fountain and I started thinking (“A dangerous pastime.” “I know.”).  I really dislike the concept of donating money for the purpose of getting something named after you or a company.  Happens all the time on college campuses and I think even the toilet paper dispensers at the Houston Ronald McDonald House are named after someone.  Seems like an attempt at artificial immortality.  At the same time, I’d like Charlotte to have a cool “thing” so that people could think about her fondly. So, I thought to myself, why not a tradition?  Think we could talk someone into installing pink and purple lights somewhere during the month of July so that we could stand around, eat chocolate, and sing Frosty The Snowman?  Just a thought.

Next we went to the RR tracks to watch a couple of trains go by and CJ said she was really, really hungry.  We were on the path to go right by some pretty tasty eats so we popped into Homemades By Suzanne.  Yummy place.  Charlotte saw the fruit salad and wanted grapes.  But ONLY grapes so we couldn’t get the fruit salad there.

So we went across the street to Cross Bros. Grocery to look for some grapes.  If you don’t know about Cross Bros., it’s been around for 97+ years and I think the original bookkeeper is still in the back somewhere.  It’s the kind of place that still hand-prices items, has signs in the windows painted with tempera advertising pork loin, and will do your shopping for you and even deliver.  (Needs to be a CBS Sunday Morning segment done on it)  Anyway, we bought some grapes and a fire-starting log for $.79 and Charlotte dug in (to the grapes, not the log).

After we left Cross Bros., we started to pass the store formerly known as the Club Car (ice cream place that closed down).  I noticed it has reopened as a place called “The Station Café” so I popped my head in to see what was up.  Actually, I was attracted by the sound of children making joyful noises. Being pleasantly surprised by what I saw, I brought Charlotte in and ordered her a hotdog (not hard to do since it’s the only food they serve right now along with coffee and ice cream). The place actually isn’t all that kid-friendly but the atmosphere is very enjoyable with comfy chairs and loveseats.  Bartlett, one of the infamous “Naked Men Of Ashland,” now owns it and was running his tail off.  The hotdog was large and seemed pretty tasty to CJ (I’m not much of a hotdog guy).  She ate the whole dog and most of the bun.

So we did our part to stimulate the economy of Ashland today.

After the Station Café, we went over to the library fountain and I amazed CJ by moving the big globe around on the water.  I also found the brick Rachel and I bought to help fund the plaza and had imprinted with Charlotte’s name (what was that I said about putting names on stuff?!?)  It was actually kind of cool to point it out to Charlotte and tell her, “This is YOUR brick!” Takes on a bit more meaning now.

We met people we know, or who at least know Charlotte, along the way and it was interesting to observe how some people completely avoid talking about IT and some have no qualms at all.  None of it’s right or wrong and everyone is in a different place so I don’t necessarily judge people for it.  It’s just interesting.  For the record, I usually don’t have a problem talking to people about CJ’s journey.  Sometimes I just want to crawl into a hole but not often.  Not today.

Then we walked home.  The weather got progressively more and more beautiful and by the time I turned the corner into Slash Ct., I was actually in a good mood.  My anxiety from the night before was gone because I’m pretty sure that the many, many awesome days like today that I’ve been able to spend with Charlotte will stick with me the rest of my life and the pictures and videos I have of her will do.

The meeting was after that and things got darker.

On the way back, we stopped off for dinner at, where else, Chick-fil-a (CJ’s request). She ate pretty well again and we came home.

We read some books, watched Charlotte’s Web (CJ’s request), changed her dressing, and finally got her to bed.

I’m definitely going to miss her and when she finally passes, that will be the most awful day of my life, I guarantee it, but that’s me being selfish and she’ll be free.

We’re all about coping mechanisms here and I had an idea about one:  After we get back from Disney World, we’d like to do something to keep the energy as positive as possible and directed at Charlotte.  When it looks like things are nearing a junction, we’d like to have what I call a “reading vigil.” We’d like people to come by and read children’s books to her all day, no matter if she’s awake or not.  We’ll organize “shifts” and feed whoever comes by.  It’s her favorite thing in the world and I can’t think of a better way to send her off.

Also, for those with kids in our area, we think a special event at Romp n’ Roll VA Center might help them (and the parents) cope.  We’ll let the kids know what happened and then probably have a professional on hand to help anyone who needs it (all of us).

We’ll let everyone know when these things get scheduled.

Tomorrow we go up to DC to visit the butterflies at the Smithsonian, I have rehearsal with Uptown, we’re spending the night up there and then we get to visit with the Pandas Wednesday morning at the National Zoo all thanks to some bigwigs with big hearts.

Wednesday afternoon is another pony experience and then dinner brought to us.

Thanks for all the love.  We really feel it.

- Roger (Charlotte's Dad)

Another Busy Day

Another busy day. Charlotte and I are enjoying a quiet evening at home watching a movie (Cars) so I thought I'd use the time for an update.

First of all, we got a substitute Mickey and I understand more are on the way (that way we'll NEVER run out!!). Knowing our luck, by the time the new ones arrive, she will have a new "obsession".

Also, Roger now has the webcam with Skype hooked up so Charlotte can talk/meet with her preschool friends. If anyone else has Skype connections, please let us know. We would love to schedule some "Charlotte talk times" with you.

Thank you to everyone who has written or who we have seen in the last few days and offered their thoughts and concerns. We really appreciate it. As we have said to many people who have asked about Charlotte, she is doing great. Really, reallly great. That is part of what makes this so difficult. To look at her, you would still never really know (except for the bald head and the sometimes awkward motor stuff) that she had this tumor growing inside her. As usual, Roger and I are suffering more than her through a lot of this.

After some consideration, Roger and I have decided that we do not need to pursue a second opinion on the surgery. We trust Dr. Tye and his team and know that this is a necessary next step regardless of how we proceed with the oncology side of things. We will be talking with his office first thing on Monday to determine when exactly surgery will happen. It may be soon.

We still have some questions about the trip to Houston and MD Anderson. Mainly the questions revolve around "how" not "if". Mainly, we are concerned that the timeline the doctor has given us may involve travel sooner than we think Charlotte will be ready post-surgery so we just have some more questions to ask. Our initial thought is that we will take Charlotte to Tennesse to meet up with Roger's dad and from there we will take his RV to Houston. This will allow us to keep Charlotte as comfortable as possible on what will be a very long road trip. Others have mentioned Angel Flights and we are investigating that as well. There is a question about whether air travel will be a possibility so soon after brain surgery.

Anyway, we will report more as we know details. My mom is still planning to leave on Wednesday (the 13th) so we will let you know if we need help in the coming weeks.

Today was a busy day with the Chic-Fil-A Cow Drop. The weather cooperated and it was good to see many romp n' roll friends as well as meet some (hopefully) new customers. Roger is up in Maryland performing with Uptown Vocal Jazz Quartet at the Mainstay. He should be back late tonight.

I'm looking forward to a relaxing evening and day tomorrow. Happy Mother's Day to all the moms out there (especially mine!)

Reminder: Open Gym at Romp n' Roll tomorrow from 10 AM-4 PM for all those dads that need to give mom a break...

Enjoy the rest of your weekend.

Charlotte has asked to type a message so I'm going to let her type here:

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New Goldfish for Charlotte

"I came, I saw, I kicked its booty!"That's the phrase I'm trying to get Charlotte to say when they aske her about the speech therapy evaluation. We went in and the two SLPs had next to no information about CJ other than "Brain Tumor."They asked me about her skills before and after the surgery and I felt like the completely biased, "my child is perfect" kind of dad because I told them how off the charts she was, in terms of language, before the surgery. I did say that her speech is still slurred at times, she speaks pretty slowly and the nasal quality is pervasive.They started the testing at the 3 year old level and it was pretty straight forward..."Which dog is bigger..." stuff like that. She didn't get a question "wrong" until they had advanced to the 4.5 year level! A couple questions she answered incorrectly were pretty complex but at least one was "wrong" only because she was grouping things differently in her head than for what they were looking.She also used the word "caught" in its proper context which just about floored the SLPs. That's my baby!Needless to say, she doesn't really need too much speech therapy. They said most of the nasality will probably clear up in time and not to worry about the speed as she's using complete sentences and communicating her ideas very clearly. "Slow and steady wins the race," one of them said.There was a bit of good chaos in the house last night as cousins Jeff Reynolds and daughter Savannah came by to visit as well as "Uncle" Nate and "Aunt" Kelly came down from NY and brought little Ethan for a first-time visit. All the while, Dad and Juanita were fixing things and feeding everyone. Then we all went down to Romp n' Roll to play and hear Southern Horizon (one of the groups in which I fumble around) rehearse. It was CJ's first trip back to RNR and there were plenty of people at open gym who were very happy to see her.This morning we fully intended to use our Cracker Barrel gift card and go to breakfast with Nate, Kelly, and Ethan but they wouldn't hear of it so thanks for breakfast guys!Rachel has taken CJ to see the daring duo of Dy Tye and Joann this morning and I'm off to Maryland for a very cool vocal jazz clinic followed by an Uptown Vocal Jazz Quartet performance at the Avalon Theater in Easton. It's a thing called Radio From Downtown and it's always a hoot to do because it's almost all National Public Radio people including Susan Stamberg, Karl Kassel (sp?), etc... and I get to see first hand how totally top-notch people do their thing.Leaving now so wish us all luck for he weekend! Dad and Juanita...you're in charge! Don't forget to feed the cats.Oh and by the way, CJ has decided to name the new goldfish Abbey Cadabby. We'll try real hard not to kill it.

Well after our wonderful breakfast this morning (mmm...Cracker Barrel! What a treat!) we kissed Daddy goodbye and headed to MCV for our meeting with Dr. Tye. Charlotte and I had a discussion about whether Dr. Tye would be wearing a tie (as he sometimes does) or scrubs (as he usually does). Her guess was scrubs. Mommy's guess was tie. Charlotte won!
Word to the wise: a handicapped tag is NO help at MCV. We actually had to go through the parking garage 2 times to find a space. Of course, I counted at least 6 "open" spaces but since they like to sandwich the spaces as close as humanly possible and many people like to "straddle the lines" (or worse, just take up two spaces entirely) we were out of many options. Finally found a spot between two HUGE SUVs on the 4th level and traipsed over to the ACC for our meeting with Dr. Tye and Joann. She looked great to them, got both of her sutures from her ventric line removed and were told they would meet up with us again once we started things with Dr. Khan.
Then we had a quick lunch at the hospital Chick-Fil-A (of course) and then hurried home to meet friends from Commonwealth Autism Service who stopped by to visit. I then left Charlotte with Grandpa and Grandma Bonita while I went to Romp n' Roll to work!
It is so great to hear everyone's comments about the journal and how they love to keep up with Charlotte's goings-on.
Open Gym almost done so I must start to clean up...gotta go home and put Abby Cadabby in her newly redone fish tank.