January 22: The First Surgery

3:46 AM, CST

No real way to give a big update for this but they have bumped her surgery back to start at 6 AM (not 8:30). Vance, Becky, and I will be heading to the hospital soon and Roger is already there. They just want to start as soon as possible knowing it will be a LONG day. I know many of you were planning on 8. Just keep the prayers going.

9:00 AM, CST

Charlotte has gone with the anesthesiologists. Roger and I were with her as far as we could go. She was getting sleepy from the medication when we left her and had a smile on her face. The procedure will probably not begin until about 10 AM. We will keep you updated as we know more. We will be at MCV hospital, 7th floor, all day today. We welcome visitors.

12:55 PM, CST

No real news to report regarding the surgery yet but I just wanted to say thank you. Roger and I feel so supported right now. We are overwhelmed (in a good way) by the response, both spiritual and tangible. We feel loved, supported, and safe. I am actually in a pretty good place emotionally right now because I know that all of God's angels (or at least a whole LOT of them) are watching us right now. God is good...keep the prayers going.

2:26 PM, CST

A nurse just called down to the OR and one of the nurses there told her they were "closing." The very preliminary word was that no blood was needed yet (Dr. Tye told us that it was almost a sure thing that they would need it and if she needed too much, they might have to halt the operation), the tube for any drainage is in place, and they would be bringing her back up relatively soon. After they clean her up, pull out the extra IV tubes, etc...they'll let us come back in to see her. Still too soon to know any real details but we're hopeful. Can't be any other way, can we?

The stream of visitors continues, the food keeps coming, the cards and toys are piling up...Awesome! Thanks everyone.

As we've been kind of taking over the lounge, we've been meeting other parents with children receiving treatment. I don't think they have CaringBridge sites as of yet but there are a lot of beautiful children here who could use the same kind of support we've been getting. Keep it all going for CJ, of course, but please put in an extra plug for the other kids here too. None of them deserve to be here and many don't have the amazing support network that (I had no idea) Charlotte seems to have.

Let's keep this on "simmer" and maybe after things settle a bit from CJ's procedure, we can think about continuing this "thing" that seems to have harnessed an incredible amount of power.

But first, let's get CJ going again. We'll let you know...

4:06 PM, CST

SHE'S OUT!!!

They brought her up about 30 minutes ago and we just got to come in and see her. She's very pale but the team said she was moving everything. Her left side will be weak for a while but that should improve with time. She doesn't need a ventilator and she did about as good as she possibly could have.

Dr. Tye said they took out between 60 and 70% of the tumor (which is good) and it will take a week or so to figure out whether it's a low level (good) or high level (not so good) tumor. If it's low level, they'll probably go back in next week and take out as much of the rest as possible. If it's high level, it'll have to be a more radiation/chemo route. There's a post-op MRI scheduled for tomorrow to see exactly how much is left.

As they were wakng her up in the room, they asked her to move her legs and she cross her left leg over her right in a "very prissy" manner according to nurse Melissa. She also is very good at giving the "thumbs up" sign to let us know how she's doing. The team said there were cheers all around. Yet more people falling in love with her.

So far, she's counted to 10 in sign for us, squeezed my hand to let me know she does NOT want me to sing to her, and, most importanly, she doesn't have a headache. No talking yet but she has opened her eyes and we got a partial smile when I pretended to put lip balm on her underarms. With all the dots and dashes they wrote on her head, I half expected her to come out with a Groucho moustache and eyebrows.

We still have a very long road ahead of us but barring an unforseen setback, a very good deal of the worst is over.

Did we mention how fortunate we feel to have had so many people all over the world sending us their best wishes?

6:35 PM, CST 

 

Thank you to all of you.

To those we know well:

Our families, friends, customers, employees, coworkers, Charlotte's friends....

To those we know sometimes in passing:

Richmond Mommies, Friends of friends, Acquaintances

To those we have never even met:

The coles network, the strangers who have found us through Facebook and Caring Bridge, those who have never met us but know someone who does...

 THANK YOU!

We feel so comforted, blessed, and secure with the messages have received. The support that has come through this board, emails, phone calls, offers for help, are just fabulous.

Keep up the prayers because we are not done yet. Charlotte is in bed, listening to music, and we are talking to her a lot. She has been in some pain so we have her on some morphine. It makes her sleepy. She is trying to talk to us though and wanted some chocolate milk!! She was very mad when juice and water were the only options!

I will sign off for tonight but keep the prayers coming. All the best...

Rachel