Tuesday, November 17, 2009

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)
da Theatre,  Performing Arts Center Boro Stage
7719 Wisconsin Ave., Bethesda, MD
Tickets available at the door ($25) or in advance via InstantSeat
s ($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)

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