Monday, January 26, 2009

IV Fun

Quite the evening. Charlotte slept for a good long while after PT came to visit. She did finish most of the chocolate milk before drifting off to sleep, though.
We had a few visitors later today including "Dr. Dan", Auntie Retta, Uncle Kolbey, and Fred & Abby.
She woke up later in the evening complaining of pain. My guess is there are some "bowel" issues as we haven't had much activity in a few days. Trying to "move things along" (so to speak). The tylenol didn't work so nurse Ann did manage to get her some morphine (God Bless her...and morphine...)

Then it was bathtime. Well..............

We lifted one of her stuffed animals up to clear off the bed and the tape latched on to the animal. Unfortunately, it pulled her IV out. Blood started going all over the bed (yikes). She really wasn't in any pain at this point but mama sure was shocked! Nurse Ann quickly put pressure on the site and got everything cleaned up BUT we had to put in a new IV in the other arm. NOT FUN!!! The nurse missed on the first try but got it the second try. Crying all the while. (CJ, not the nurse). Well, needless to say, after that she definitely needed a bath. The sponge bath cleaned her up very nicely. I think Rompy is going to need a bath too. The nurse is seeking out some H2O2 to clean him up.

After the bath, we sat her up in the chair (on my lap) to watch an episode of Caillou. Then she was ready for bed again. Sleeping soundly (snoring even...)

Time for mama to get some sleep too.

There's Good News and Bad News (deep breath...)

Good news is that the tumor is what they call a PNET (Primative neuroectodermal tumor) which means it's operable. Malignant but operable. The "level" designation we were talking about earlier doesn't really apply to these types of masses.

The bad news is that it's in a really bad place due to what it is pushing up against. They have to go in again on Thursday and try to get as much of the rest as possible. Dr. Tye said that since the pathology report has shown him that she has a fighting chance, he wants to be much more aggressive this time (even though he's still fairly sure that he can't get it all) which means that CJ might possibly have much more serious physical deficits than with the first surgery. Fortunately, she's very young and can recover very well if not completely.

She will also probably need a shunt installed to help with drainage from the brain and a "port" of some kind implanted for the chemotherapy that is almost assuredly in her future. The shunt is completely under the skin and permanent and who knows how long the chemo port would be in. Dr. Tye wants to get another MRI done Thursday morning before the operation which will minimize the anesthesia she'll have to have. They'll put in all the hardware during surgery as well.

Then another period of recovery where she'll be evaluated and all that stuff. They may want her to go through a period of rehab before we start chemo/radiation but it kinda depends on how she is post-surgery and what type of treatment Dr. Khan wants to pursue.

While this is certainly not "good" news, it is pretty realistic with what we have been expecting. We have been warned that the process will be long from here on out. Probably year's worth of treatment and rehab. (probably at St. Jude's) We are preparing ourselves for that.

Thanks to everyone who continues to step up to the plate for us: our romp n' roll staff, the folks at the other area stores, our customers, friends, and family who have offered help wherever needed.
Charlotte continues to sleep peacefully and we will keep you updated.

Thanks to Emily Starrett for lunch today and to all the visits from our friends and family. I think cousin Jeff is bringing lunch tomorrow. His daughter, Savannah is another absolute beauty.

The big card from St. James The Less was delivered and sits nicely under the T.V.

Uncle Vance got off fine yesterday. Dad and Juanita Bonita will be coming in soon.

Babz, looks we need RNR2Go covered again Thursday if possible.

Rachel & Roger

PS She did get a sip or two of chocolate milk today! Didn't want much more than that but it's a start!

Physical Therapy

Doing physical therapy and Charlotte is being soooo brave! She's not enjoying it at all but the PT is really good and CJ is doing everything asked of her.

It's interesting to see who of the staff can get the most out of our extremely strong willed child. Dr. Tye and Nurse Joanne just came to tal about the pathology report. I'll update everything asap.


Progress and Reese

A Good day so far! She is needing less medication than expected and they actually want to fade the morphine doses now and just get by with tylenol. So far so good. She was up and out of bed, sitting in daddy's lap and watching TV. Speech came by and gave the OK for food. She is starting slowly and the NG tube will stay in for now (just in case) but she ate some graham crackers and drank some water. Very happy!

Her color and demeanor just look so much better today. She is napping right now.
We actually should get news on the pathlogy report today (this afternoon) so we are waiting anxiously for that! Let's get this ball rolling!

On a related note, we just found out that one of our Romp n' Roll families is going through a similar experience right now here at MCV. Her older daughter (she's 6) is a few weeks post-op from tumor surgery and they are getting ready to go to Kluge for rehab treatment before radiation begins. We lift Reese up in prayer as well. It is so good to make contact with these families and share stories. It's crazy how the world works sometimes.

I'll sign off for now but hope to have an update by the end of the day!

January 25 Updates: Post-Surgery

6:47 AM, CST
A good night for Charlotte. Not so good for mommy...

She slept very well and only woke up at 4 AM when they had to draw blood. Not a fun experience but we sang some songs. The nurses did as well as they could.

The doctor did come by about 6 AM to take out the hemovac. This was draining the blood from her brain and had slowed down considerably so they just removed it. No pain at all with that and now her hat can be "off" if she wants. They are going to try to wash her hair a little today. They said the incision looks VERY good. Nice work, Dr. Tye!

On a more personal note, I ate something that didn't agree with me (not sure what) and had some stomach cramps all night. I did sleep pretty well but felt kinda on the verge of vomiting. Yay. I'm sure everyone wanted to know that. On the other hand, I think whatever it is is passing through my system and I am already starting to feel a little better this AM. The nurse was sympathetic to my plight but, of course, they can't give me anything. She did bring me some ginger ale. Nurses are so good!
On a really good note, I finally got to see LOST last night (hooray for and a fairly fast internet connection). Oh how I missed my show! Now I've just got to listen to my podcast to figure it all out! Got a few theories if you want to favorite Sawyer nickname so far: Frogurt!! :-)
We are expecting a steady stream of visitors for Charlotte today and that is great. Visiting hours are 10 AM-9 PM and you just come to the 7th floor of the main hospital. You will need to show ID and they will page me.

All for now. Charlotte still snoozing away. I am so glad she can rest!

12:53 PM, CST
Charlotte has had a busy morning!

Some very good news: They have removed the Hemovac cord (blood drain from her head), the catheter, and one more IV so she only has one IV in her hand right now which should hopefully allow her left foot to move more. We got her out of bed and sitting up in a chair with all the stuffed animals propping her up.

She had a great visit today from a therapy dog named Riley. He was a 9 year old irish setter that did tricks, licked her, and let her pet him. He also jumped up into her bed! (She was in the chair at the time).

Visits today so far from Aunt Meg, Anna and Madison, and Miss Jan. I think she's kinda tired and not saying a lot but her eyes are very expressive. She wanted to watch a lot of Dora today. All for now. Roger is now here. I'm feeling better but tired.


6:46 PM, CST
As the day has gone on, we were blessed with many visitors. Thanks to all who came by. Charlotte has been much more quiet today and as the day has waned, she has complained more of pain. They upped her dose of morphine (she was on a really low dose) and will now give it to her on a regular schedule rather than only when she complains. It is not unusual for the pain to increase in situations like this.
At the moment, she is laughing at daddy's antics. That is good to see.

I am feeling much better. I had an extra nap today and then made a run to Target for some organizing bins (for all her goodies) and Aunt B and I got a drink at Starbucks (chai tea for me). That and an ibuprofen made all the difference in the world. I feel 100% better!

We haven't really said this yet in the journal, but we want to give an extra shout-out to Dr. Weber and all the folks at Pediatric Associates of Richmond. We are so impressed with his judgment call to send Charlotte on to the ER. With as few symptoms as she was displaying, I think it would have been very easy to dismiss our concerns and/or miss the problem. We also appreciate the fact that they continue to check on her progress. In the 3 years we have worked with this practice, we have had very good experiences, but this one "takes the cake". Thanks so much!

8:04 PM, CST
CJ has had a bath, bedding changed, fresh morphine and is enjoying a Charlotte's Web video. Auntie 'Retta and Uncle Alfred came buy with a new cool toy that kept CJ's attention for a good 20 minutes. They sang her their nite-nite song again and all was well.

Excitement on the floor...a new "admit," as they say here. Not sure of the circumstances but there were lots of police and they worked on the child for a very long time after admittance. One more add-on for everyone's various paryer lists and such. I have no name or even gender for you. Just another anonymous kid who doesn't deserve whatever happened to him/her.

10:29 PM, CST

As usual, can't sleep but CJ is out like a light.

Sorry for any/all who have tried to contact us to provide meals and services. We're having communication troubles. We're still scheduling meals and receiving meals for three or four people to freeze in the big new freezer so if you'd like to help, please call my cell..

On a very sad note, the child brought in earlier with all the police did not make it. It will probably be on the news. Another sensless, stupid shooting.

If you must have guns in the same house with children, please PLEASE keep them disassembled and locked up in separate cases with ammo in yet another location. Or better yet, don't have guns in the house with kids. This was so preventable. Hearing a woman right outside our door having to A: deal with her (I assume) baby's sudden and violent death; B: explain it to the authorities, and then; C: face the legal consequenses is not even remotely pleasant. I've not felt myself a particularly sheltered person but these last few days I'm learning so much about real life...

Please hug your children once more.

Sunday, January 25, 2009

January 24 Updates

1:04 PM, EST
Things are going moderately well today. Charlotte is awake and laughing at Uncle Vance bumping his head on the bed railings. There was one instance, however, when Vance told a particularly un-funny joke and Charlotte was brutal in her silence! :-) Aunt B asked her if Uncle Vance's joke was funny and she somberly shook her head "no." It really wasn't very funny. Go Charlotte!

One of the neurosurgeons came in to peek at the wound and he was very happy with how it looked.
I sat in on the rounds with the nurses and Dr.s and although 80-90% of it was completely over my head, I could at least pull out that there are things they were checking every hour that they will now only have to check once a day or only if they see a warning sign, her vitals are getting so strong.
Getting better all the time.

9:40 PM, CST
I taught my Saturday classes and it was so good to see the kids. Thanks to all the parents who asked about Charlotte (and us). We really feel the love and as I think about it, this helps affirm to me that we are the business owners we wanted to be: more than just "the people that run things" but those that are truly involved in the lives of our customers. It is clear that Romp n' Roll is more than just a place to sing, dance, play, and have fun. We are a family. I hope that someday soon we will be able to use our business to give back to those that are giving so much to us right now.

Thank you especially to the mommy that wanted to remain anonymous. Your gift was well received and I am gracious! HUGS!

Charlotte has been pretty tired today but still alert. She told me today that she "wanted some Chick-fil-A". Still has the NG tube because we have to wait for the lazy speech therapist to come and evaluate her ;-)

We had some very nice visits from friends and family today. Her preschool teacher came by and brought a chimpanzee (with a gauze wrapped head!) and many cards from the kids. So sweet!
The freezer has been delivered to our house (thanks again, Hanover Montessori). so anyone who was interested in helping with meals is welcome to bring frozen or ready-to freeze items by the house. We can coordinate. FYI, Becky has been having trouble with her voicemail on her cell phone so if you have left a message and she did not get back to you, please call again. You can also call our home number or romp n' roll and we will get in touch with you.

I guess I will sign off for tonight. We will see what the night has in store for us...

1:39 PM, EST
To add to Rachel's post...As bad as last night was, today was great. Charlotte interacted with her visitors and showed good improvement on her left side. We had great care from the nurses today and the awful pull-out sleeping chair in the room was graciously replaced with one that is even better than the one in our original room.

Looks like the "hemovac" (?) tube and contraption will be taken out of her head soon (tonight maybe) and her catheter might come out as well.

She played extensively with the princess computer Audrey gave her. We developed a system whereby she used our fingers (dad's and Uncle Vance's) as poking tools and showed us what buttons to push. She was usually correct

The pain medication has shown a tendency to wear off every three hours almost on the dot but when I left her at about 9pm which was 3 1/2 hours after her last dose, she seemed pretty mellow (asleep actually).

Sarah is the adorable red-haired girl we've been getting to know in the lounge. She has a plethora of conditions that actually frightened me just to hear about them but, like with most kids, she was laughing and eating and enjoying the aquarium last time I saw her.

Thanks to Jody for the killer crab cake sandwich she brought me for lunch.

I'm stopping by St. James The Less Church tomorrow (10:00am service) to thank everyone for their support and to be available to the children in the nursery if they have any questions about Charlotte. Might help any anxiety they're feeling. Then it's back off to the hospital (after a little supply shopping) for another day/night of waiting.

Uncle Vance leaves tomorrow for Colorado. Thanks for all your help Bro! Loved seeing you. Thanks for making CJ laugh.

Many people are wondering what they can do to help when they can't cover shifts at Romp n' Roll, wash laundry (already done), provide meals, or chauffeur around out of town visitors. Rachel and I came up with an idea. The small, but very appreciated cash donations we've received have come in handy to fill in little gaps here and there so we thought that if anyone wanted to donate $5 to Charlotte's savings account, we would use that for things like gas and other intangibles connected to her recovery not paid by insurance. We promise not to spend it on yachts, trips to Bermuda, or $35 million condos in Manhattan. Anything not used long-term would simply be applied to CJ's college fund. Just a suggestion for anyone who wants to help but can't put their finger on the way to do it. Thanks in advance.

Now I absolutely HAVE to get to bed!

Saturday, January 24, 2009

Video from a Friend

I would like to pass along a short but very cute Youtube video made by one of CJ's friends from Hanover Montessori School.

Quiet Day?

4:23 AM, EST
 Quiet night/morning. Melissa Owens told CJ to tell her mommy and daddy to get some sleep. Well since I have no recollection of her coming in to check on her this morning, I must have been out for at least a little while. Probably got between three and four hours.

Charlotte has been well attended to all night with fresh drugs, diapers, and turnings. She's opened her eyes occasionally during these times but has always fallen right back to sleep. Doesen't seem to be in any pain but she occasionally explores the tube going into her nose..

The music has been playing off and on (mostly on). We are strong advocates of including music in any healing plan. Right now we're listening to a great compilation of lullabies from around the world called, "On A Starry Night." We've also had Miles Davis', "Kind Of Blue" (which she heard in utero.) and a double CD of "the most relaxing piano album in the world...EVER!" Doesn't seem like a very relaxing slogan.

Since we got flooded out of the other room, I've been enjoying the amenities of the new corner room; mostly the private bathroom and shower. The only drawback is that when the door is closed, the nurses can't hear the many beeps and alert sounds so whoever is in the room has to make the staff aware and they scold me when I try to push buttons.

Whoops, invasion of the nurses wielding florescent lights. Gotta go...

5:24 AM, EST
DOAH! Spoke too soon. The nurses came in like that because they couldn't get a steady stream of blood from the IV in her left hand so the had to poke her right wrist to get a vial of blood.
Nothing starts your morning off right more than having to hold your child still while someone else causes her pain. It also didn't help that her head started hurting again. (Did I say thank God for morphine and Barbie Band-Aids?) It really wasn't much by normal standards and the nurses were very efficient but for me it was awful.

I think Daddy needs the music "therapy" as much as CJ. The latest selection is a very cool CD called Le Voyage De Sahar by Anour Brahem on the ECM lable. It's some of that weird music I love to collect. A strange combination of jazz, classical, and European and Middle Eastern folk music. A nice mellow set of songs with oud, piano and accordian. If CJ doesn't have the most varied musical taste in her first grade class, it's not our fault.

So she's sleeping again and before the nurse left, we did a little massage/excercize session on CJ's legs and right arm. That actually seemed to help a little.


Thanks go out to Becky for letting me hang on to her laptop for the night. Don't mind the ranch dressing spots on the screen.

Today should be a grand day for visiting. Looking forward to the parade of friends and family. When you get here, don't be shy about snacking. Lots on which to snack. Nothing left from the very yummy lunch provided by the Richmond Dads Yahoo group, though. (never had a cashew chicken salad sandwich before!) Thanks guys.


A Wonderful Story

Todd from Roger's Dad's group stopped by tonight to say hello. He said that he was at the gym today and was talking with someone about Charlotte's story. Someone else (a perfect stranger to Todd) overheard the story and also knew Charlotte. They shared that bond of knowing both are keeping their thoughts on little Miss CJ. So amazing! Todd is sorry that he could not remember her name...

But what a wonderful world we live in.

I am overcome with joy.

Tonight I lift up in prayer the staff at MCV. There are those involved in the primary care of our child and all of the other children (and adults) in need of medical care. There are also the 1000s of hands that make the hospital work: custodians, specialists, volunteers, security guards, maintenance workers, elevator operators, parking attendants. They are all such integral cogs in the wheel of an amazing machine.

I also lift up those less fortunate than us. We have met many families who drift in and out of the family room on the 7th floor. Many of their stories are even more dire and they do not have the foundation of support we are experiencing. Please keep Hope and her family in your prayers. Remember Ashana and her mother. The beautiful red-haired girl whose name I forget but whose smile lights the room....and all the others on the 7th floor who are searching for health and strength tonight.

We are kinda stuck in a holding pattern till Tuesday or so. We hope to rejoin some of our "normalcy" as the week progresses but we are so grateful for help because we know that "normal" is going to change for us from here forward. (like we ever lived a "normal" life to begin with).

The updates will continue and I promise to get some sleep!


Friday, January 23, 2009

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!


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.

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.

Feeding Tube Is In

Charlotte got a feeding tube tonight and that was not fun. They had a little trouble getting it in and had she the strength, she would have made them take it up the nose! They also had to try three different types of tape before they found one that stuck well enough.
One of her friends from Romp n' Roll, Audry, was very concerned about CJ and made her grownup get her a gift. She absolutely loved the Princess Computer. She played with it for a good while tonight. She also loved the hug the Audry gave me to give to her.

Before visiting hours ended, Charlotte had some very welcome visitors who made her smile and played games with her and, of course, sang to her. Becky and Vance came back for a while and Vance created a great little game where he held up a corner of the blanket, placed the purple car that Larson gave her and when Charlotte said, "Ready, set, go," he let it run! It would roll all the way onto her belly/chest which amused her to no end.

Auntie 'Retta and Uncle Alfred also came by. Alfred played peek-a-boo and actually got a few big laughs and then they sang to her with occasional moments of two-part harmony.

As Rachel said, "Now we wait." We'll be in and out of the store teaching, picking things up, dropping things off, etc... I taught today which was a grand diversion. I felt a little rusty but everyone seemed pretty patient. Rachel will be teaching tomorrow. We needed a little "reality" back in our lives.
The Richmond Dads Yahoo group provided lunch for us today and the Greater Ashland JayCee's brought dinner. Lots o' yummy goin' on.

More in the morning...

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 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.

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

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...

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...

Thursday, January 22, 2009

How to Help

Many of you have asked how you can help.

We will be at the hospital all day Thursday and expect her surgery to last most of the day. We will be on the pediatric floor (7th floor) of the main hospital at MCV.

Some have already donated food (thanks!).We have some great folks on staff at the VCM and WP romp n' rolls who are helping us fill in the gaps.

We will let you know if there is anything y'all can do to help. Prayers are most important right now.

Rachel, Roger, and Charlotte

Wednesday, January 21, 2009

The Results Are In

The MRI results are in. She has a very large tumor (about the size of an orange) in the middle of her brain. It is basically consuming the cavity above the thalamus that would normally contain spinal fluid. The tumor is putting pressure on the fluid which is causing the swelling and pain. It touches some very important parts of the brain (like, isn't it all important?).

Here's the upshot: the good news is that the tumor is not very "solid" in the scan which leads them to believe that it will be more "fatty" than "fibrous". This usually makes it easier to remove. The bad news is that it is very large and they will need to make a diagonal incision along her forehead, go about 8 cm into her head to get to the tumor.

They will not know until they get in there exactly how much they can get out. They will not know until they get it out whether it is malignant or benign.

She will go in for surgery at about 8:30 AM and the surgery will be 6-8 hours. Once the surgery is finished, she will retun to recovery in the PICU. She will probably have shunts to drain fluid from her brain for a while and they will be able to assess her condition at that point. Recovery can range from 1-2 weeks (before discharge) and at that point we should know our next course (further surgeries, chemo, radiation, etc.).

Here is the GREAT news: Her doctor (Dr. Tye) and nurse practitioner (Ms. Joanne) have been wonderful. They perform surgeries of this type 30-40 times per year and many people have told us that we are definitely in the right place and working with the right people. I also know that we have a wonderful network of friends, family, and others supporting us, praying for us, and lifting up Charlotte's health to God. I have tremendous faith!

We will be at MCV for a while, going back and forth between home and romp n' roll as well. Thank you for all your messages, offers to help (some of which we have already accepted), gifts, and most importantly, prayers.

We will keep you updated.

Rachel, Roger, and Charlotte

Tuesday, January 20, 2009

Our Story (from the very beginning...)

Charlotte had been complaining of headaches for about 2 weeks. We decided to take her to the pediatrician and they immediately sent us to St. Mary's hospital for a CT Scan. The scan revealed a large (orange-to-grapefruit-sized) mass and Charlotte was admitted on 1/20/09 to MCV hospital in Richmond. She was diagnosed with a PNET tumor (Primitive Neuroectodermal Tumor) with its origin in the thalamus. PNETs are similar in structure (on the cellular level) to medullablastoma. Medullablastoma is the most common malignant brain tumor in children. On the other hand, PNETs are more rare and can sometimes behave differently. From what we understand from her doctors, her pathology revealed a very aggressive tumor that tends to regrow quickly without treatment.

She had 2 craniotomies in 2 weeks. Surgery was able to remove about 90% of the tumor and after a 3 week hospital stay, we came home for outpatient therapy. She emerged from the surgeries with some left side weakness but quickly regained the ability to walk and use her left hand with support.

Charlotte finished her first round of inpatient chemotherapy on March 13th and finished her second round on April 10th. We started a third round of induction chemotherapy on April 28th; however, a new MRI revealed that her tumor was growing in spite of the chemo.

At this point, we scrapped her current protocol and had a consultation with the clinic at MD Anderson in Houston, TX to get guidance on future treatment of her tumor.

Her third surgery occurred on May 27th and was very successful. Dr. Tye removed nearly all of the remaining tumor with just a few very small bits left over in places he wasn't comfortable going, including some on her brainstem.

Her new chemo protocol developed by the folks at MD Anderson began soon after her 3rd surgery. On July 11, 2009, two days after her fourth birthday, we packed up and headed back to Houston, TX for 30 days (7 weeks) of proton radiation therapy. She also received some chemotherapy during this time. Charlotte tolerated the radiation/chemo combo well and we returned from Texas on September 1, 2009.

Charlotte continued on a revised chemo protocol that included accutane, valproic acid, topotecan (all oral) and velcade (IV 2x/week every 2 weeks).

Charlotte's latest MRI (November 6, 2009) revealed that the tumor continues to grow despite radiation, chemo, and all other treatments. The tumor growth is once again placing pressure on the spinal fluid in her ventricles, causing enlargement of her brain cavity.

On November 8, 2009, Dr. Tye placed a shunt in her head. The shunt drains to her stomach and allows pressure to be relieved.

We are pretty much out of treatment options at this point and our time left with Charlotte is probably limited. We are going to enjoy whatever time we have left, including a trip to Disney World sponsored by the Make-A-Wish Foundation.

We are extremely grateful for the tangible, monetary, and spiritual support that Charlotte's community continues to provide in our time of crisis. In the near future, we will formally establish the CJ's Thumbs Up Foundation (CJSTUF) in her name as a mechanism to "pay it forward".