Just wanted to echo a few of Roger's thoughts in my own post (if you haven't read his previous entry, read that first).

Yesterday eased my mind in many ways.  I was very relieved to find out that for the most part, we should expect the progression of Charlotte's disease to be relatively easy.  I definitely like the idea that she will gradually start sleeping more and more and eventually will just not wake up.  As Roger said, that's the way to go, right?

I am not really looking forward to some of the actions and discussions that will follow, but to paraphrase Miss Scarlett, that is a conversation for another day.

For now, our lives are so busy with activities and engagements.  Sometimes it's hard to keep up.  Our network is keeping us well fed, well entertained, and making us feel loved.  Thanks to all of you who send notes (sometimes with cookies or brownies attached), help us set up activities, or just support us in so many small but meaningful ways. 

It is both bizarre and relieving to have no more clinic appointments.  It was very odd to have the conversation that we did with her medical team yesterday.  For me, it was almost an out of body experience.  Everyone on her team is so competent and dedicated.  Drs. Khan and Tye were holding back tears (a few slipped out) throughout the meeting and I was touched by everyone's commitment to our daughter. 

Right now it seems our biggest issue is sleep.  The problem is two-fold: First of all, Charlotte's sleep patterns are wacky and she seems to be waking up at odd times.  It's hard to tell if her wakefulness is tumor related, medication related, or just weird sleep patterns.  Secondly, both Roger and I are struggling with getting good rest.  Part of it revolves around getting up with her but the other part is that evening anxiety that just seems to settle in.  You get to bed (or try to go to sleep) and your mind just wanders.  It's a dangerous thing.  That's probably the time when I am saddest.  It makes it hard to settle down. 

I don't have much more to say right now so I'll close and try to move on with the day.  Coffee, anyone?

- Rachel (Charlotte's Mom)

January 23: Updates

7:22 AM, CST

We have been receiving many, many messages from children or parents of children (both known and unknown to us) telling us of the kids' concern for Charlotte. These kinds of events, besides being terrifying (some of the worst moments of my life, actually) for the immediate family, can be very stressful for the other children in the patient's life.

Some of our friends have come up with great, creative activities to help kids (and adults) cope. Auntie 'Retta is the mahstah of that sort of thing and her star tree will now be a fixture in CJ's room forever.

Charlotte's friends from school and the Slash Cottage neighborhood have sent pictures they drew, colored, or help create and they will also be going up. It all helps.

If you have a child who might be having trouble dealing with the events of late, please have them color a picture or write a story or build an art project or record a song (don't be surprised if it ends up on YouTube!). Please feel free to use the guest book to share ideas of cool, cheap, easy coping mechanisms for children. I'm sure there are tons of websites dealing with just this.

I'll look for some later. In the meantime, things went well enough yesterday that I'm going into the store to teach this morning! YEAH!

Rog 

8:20 AM, CST

Charlotte is in and out of sleep. She seems kinda "grumpy" right now and I don't blame her. she aked for chocolate pudding this morning! Told her she could have some after they take another picture of her head. Just waiting for rounds and for doctors to give an update on MRI schedule.

Thanks to Roger for his post and for posting the photos. That princess pic is a favorite of many.

1:33 PM, CST
She had a decent morning. The steroids have her a little "puffy" but her color is good. She is still on morphine so she is groggy but she keeps talking or trying to talk. She is looking at all her pictures, talking about her friends, and she even tried to tell the "interrupting horse" joke (ask Roger about that).
She is in the MRI right now and it should be about an hour or so. Much easier this time as the anesthesia went straight into her IV.

Our doctor put us in touch with another family that has gone through a similar experience with their daugther. Started when she was 18 months. She is now 4 and cancer free. Just checks every 3 months. They actually live in the Fredericksburg area. We shared stories and exchanged contact information so they will be a great family with whom to keep in touch. I will post THEIR caring bridge link when I find it. Already gave us some great perspective on the journey we have ahead.

On a fun note, a toilet leaked on the PICU and flooded the whole side where her room is. We have had to move to a new room so there will be a new number directly to her room. I will post it when I know it. You can always call the main MCV hospital number and they will direct you to her new room.

More to report later.
Rachel

MRI Results

The MRI went off a bit later than planned but we're getting used to "hospital time" and we're ok with it. She came back up about 3pm and wasn't in the best shape. She was in pain from the wound in her head and started crying pretty hard as she woke up. Fortunately, Nurse Julie had the morphine handy! She was also having trouble with her "A" line IV and it was giving her some added pain so after fiddling with it for a bit, they just decided she didn't need it any more and pulled it out. Everyone breathed a collective sigh of relief.

She's very groggy still and they are watching her levels and adjusting liquids as they go.

Dr. Kahn came in (I didn't have a chance to ask him about the boots) and gave us a brief report on the MRI. He said it shows that they got about 50% of the tumor which is still pretty good. It was interesting to hear him comment on the size. Must have been pretty big for him to make special note of it.
We won't know anything else until the pathology on the tumor comes back in a few days. Until then, we'll just be keeping Charlotte as comfrtable as possible. Oh yeah, and eating. And eating. And eating.

Another Long Night

Another long night. I'm pretty sleepless these days for many reasons. Hospital noises, wanting to be there for Charlotte, general nervous energy...

Actually slept for a while but then she was awake. They have given her some morphine for pain and that makes her drowsy. Her speech is kinda funny and slurred but she keeps talking. She has also been practicing her princess wave.

We have posted all her cards, the angel star poster inititated by Aunt Loretta and created by folks who visited today, pictures of her friends...she looks at them and talks about them. She sees her name in many places and will sign a C and then says "that's my name". She loves the balloons, especially the giant Dora (thanks Wyatt!)

That neurosurgeon must be good because it seems he definitely only took out stuff that didn't belong in her brain in the first place...and nothing else. It's all still there and her personality is still very much in place. She asked for ....no...demanded chocolate milk tonight and was very upset when she could only have water and juice. Same old stubborn Charlotte.

She is surrounded by all the stuffed animals that have been sent in. They are all dear and she talks about them and pets them. They are good "bolsters" to prop her up in bed. Rompy has been close by all the time and went into surgery with her. The nurses have bandaged Rompy's head to look like hers and we told her that Rompy is trying to feel better too. She said, "I want Rompy's head to be better so he can take his bandage off."

She has been running a low fever (99-100) which is very normal after surgeries. About 2 AM they needed to give her some blood (about 17 ml) because her hemoglobin was low). Again, to be expected in a surgery like this. She was eating and drinking earlier and seemed to be voiding well but her catheter bag is getting a bit TOO full and they have sent some of her urine off to the lab. The pituitary gland can get a bit overactive and she will excrete too much fluid. They still have her on IV fluids and are monitoring her very closely.

Please keep her nurses in your prayers. Tonight she has Amy and Liza working with her. Amy is now the lead nurse on her team (she got "dibs" on her and Nurse Melissa was very upset!) :-) Nurse Keisha has also been helping. They are all very knowledgable, empathic, and caring professionals who treat Charlotte (and her parents) so well. I can't remember the pediatric resident's name but she has been checking in frequently as well and monitoring her progress.

I will try to rest and so will sign off now.
Rachel