Things are Going Very Well at Home

First off, Sorry about the lack of update. We are having trouble getting on to Caringbridge from home. Not sure why when the rest of our internet service at home works fine. Anyone have an insight into why that may be?

Other than that, things are going very well at home. Charlotte was extremely mellow yesterday and we kept an eye on her just to make sure she wasn't getting sick or something but she seemed fine. Her BM last night was very healthy!

As with the second surgery, she's now going through a bit of an "emotional" phase. Devon came by and spent some great quality time with CJ, snuggling with her, reading to her, and watching videos but she had a couple meltdowns when things didn't go exactly the way she wanted them. Like when the Sesame Street Halloween video ended. It took a moment to figure out exactly why she was bawling but we did and it's par for the course of recovery.

We went to Qdoba to get the official check for the burrito eating contest from Lisa. Everything added together, we raised $975! Thanks everyone who helped. CJ has such a following, the Army recruiter from across the parking lot actually came over just to see her when he found out she was there. A couple other people did as well.

We're very excited about the upcoming events at Romp n' Roll and in the surrounding community:

Our free week of preview classes has been received with a great deal of excitement and there are not many spaces left. I think the most vancies are with the babies class but we booked several of those yesterday.

The Ashland Strawberry Faire is looking to be a very nice change from this rainy weather. Forecasts call for partly cloudy skies with a high of around 81. Couldn't ask for a better outlook. We'll be there with face painting, crafts, and the bubble gun!

Rompy's Summer Concert Series kicks off on Thursday the 11th with Clay Mottley and the Taters. Food donations for the Central Virginia Food Bank will be accepted as well as donations for Charlotte's fund. There will also be a bloodmobile on site starting at 3pm.

Gotta go get ready for "Big Friday!"

Rog

As a followup to the last post:

There's now a sign-up sheet at Romp n' Roll for the Bloodmobile. Appointments start at 3:00pm and there's an average of 6 slots for every hour which equals 26 pints of badly needed blood. If you're available and eligible to give blood, please call the store to sign up. Think of it this way, after this, you get a 3-month break from VA Blood Services calling you every day to come in and give blood! :-) You're giving in CJ's name but not for her directly as she has mercifully needed very little. I'm sure, however, that that will change when we move into the next phase of treatment, whatever that means.

On another tangent...We're gonna pass 100,000 hits today!!! How exciting! You guys are amazing. Wish I knew how to save and print the page when it goes over.

I would like to paste an email I received from the father of a child who passed away from a brain tumor. They have a very active foundation and I would engourage you to learn more about what they do. I saw them featured on the Golf Channel while Charlotte was recovering from the last surgery.

"Reynolds family,

Thank you so much for writing on Payton’s blog and it is strange how these things happen to bring people together. Flipping through the channels late at night is something I know all to well about.

It sounds like your daughter is getting great care. We did the same as far as getting several opinions and ended up at Duke Hospital at the Preston Robert Tisch Brain Tumor Center. I was recently there and spoke to Payton’s doctor, Dr. Gururangan and he said they are working on a vaccine that may have helped Payton. I could introduce you to him if you like to see if your hospital is collaborating with Duke on any of their studies. M.D. Anderson is another top notch hospital. I have been invited to meet the president and tour their hospital soon and can’t wait.

Payton was first diagnosed with a PNET as well and after two weeks of collaboration between 5 different hospitals they determined it was a Medulloepithelioma tumor.

I know how you feel and what your family is going through so stay strong. That is an easy thing to say, but much harder to do. I don’t have any magic words that can make you feel better or to help you get through this. There just isn’t any. People always say I couldn’t do what you both did, I wouldn’t of made it through, I can’t believe how strong you are….many things along those lines…well you just do it. As you know, you just get through each day and take it on. There is no other choice. I am sure you have said to your daughter that you would take this cancer if you could. I said it every day. CANCER SUCKS. But you guys keep fighting because I am sure your daughter will.

Sorry if I didn’t make sense in this email or offended you in anyway. As much as I do it, it is still hard for me as someone who has lived through the horrors and seen the things you have seen to communicate with folks living through it now. Hang in there and let me know if I can help.

www.paytonwright.org"

I especially like the fact that many of the things in Mr. Wright's email are things we've found ourselves saying like "CANCER SUCKS!" I understand the last golf tournament they had raised over $70,000!

The ball is rolling again to get "CJ's Thumbs Up! Foundation" up and running. We hope it will be a "fun-raising" organization that will privide financial (and sometimes personell) assistance to individuals and other organizations that already do the things we were thinking of doing. We'll let you know when the tires hit the road.

So here's to 100,000 hits, the Strawberry Faire, and the Concert Series!

Thanks for everything past, present, and future!

Roger

Kudos Time

Another lazy rainy morning. Rachel went to "Movies and Mimosas" with some mommy friends and Charlotte and I just hung around the house snacking, reading, watching Wonderpets. etc...

Rachel is home now and pestering me needlessly.

Rachel wanted me to let you all know how needlessly I'm suffering.

So anyway, kudos time!!!

Chris from Hill Electric came in and volunteered his time to change the very high florescent lights in the gym since we don't have a ladder high enough. There's so much more light in the gym, we don't even need the big buzzy round lights. Big thanks to him.

Today, we told Charlotte that we are going on a trip this week to go see some doctors in Houston. She asked, "Houston, Texas?" She doesn't miss a beat.

Events coming up:
May 20th - Glen Allen Golf Fun-raiser (Rescheduled from earlier) on Wed, 7-10pm
FACES meeting at Virginia Crossings Starting at 7pm (still need volunteers)
May 21-23 - Houston Trip! Probably get to see Uncle Tom.

I did something impulsive and left a message on Andrew Stanton's (yes, THE Andrew Stanton from Pixar) voicemail explaining her situation and asking if there was any way Charlotte could see the new movie "Up!" It comes out the 29th and her surgery is scheduled for the 27th so I just thought I'd take a stab and see if we could work something out.

(Roger is going to stab Rachel in the head for editing without an invitation!)

Besides spelling corrections, she has nothing to add. :-)

That is all. You may go now.

What a Good Day!

What a good day! While I'm still not over feeling exhausted all the time, at least I'm not a bundle of nerves and anxiety over the unknown. that helps a lot.

Charlotte had a great day with visits from Wyatt and Heather, walks around the neighborhood, lots of exercising, and lots of eating.

We have a plan and an itinerary. We will be flying on Air Tran out to Houston on May 21st and returning on May 23rd. Our meeting at the clinic is on May 22nd. Thanks to our wonderful network of resources, we have learned about shuttles from the airport to the hotels/hospital area (hence no need for a rental car) as well as some good hotel accomodations for our stay.

Also, thanks to our wonderful staff at Romp n' Roll (as well as help from a few of the other Romp n' Rollers in the Richmond area), I think we've just about got coverage at the store covered while we are away.

We are still planning on surgery on the 27th. My mom leaves tomorrow to go back to Florida (bye Granny!). Roger's dad (Grandpa) and Juanita Bonita will be back her on the 26th in preparation for her surgery and we're getting some other "ducks in a row" for the weeks to come.

It's nice when the stars seem to align.

On a not so good note, it looks like the insurance appeals are not going to go as hoped. After our second appeal letter, Humana continues to maintain that we are well within our rights to choose MCV and they are well within THEIR rights to charge us an out-of-network rate for choosing MCV. End of story. The short answer is that I will follow up with our rep from the insurance commission and possibly make one final appeal through our delegate representative who has been following the case to see if he has any "pull" but I think the 8-ball is telling us "all signs point to NO".

Thank goodness to those of you who have led the charge on those fundraisers because we are gonna need them!!

Speaking of which, it looks like the Glen Allen Golf event has been rescheduled for next Wednesday (May 20th) from 7-10 PM. Mini-golf, batting cages, and driving range. Pray for sunshine and come out to see us off to Houston!

We also have the shopping events this weekend. Saturday 5/16: Five-Below (at VCC). You need to bring a flyer. We have LOTS of flyers at Romp n' Roll. 10% goes to Charlotte so stock up on your summer pool noodles, bouncy balls, and other un-necessary junk....

THEN Sunday 5/17 at Everything But Water (bathing suits, etc.) in the Short Pump Mall. I don't know if you need a flyer of some kind for this but 10-15% should go to Charlotte and I understand that there will be a chick-fil-a wheel with prizes and opportunities to help there as well (with food???). Thanks to Torrie for arranging this.

It looks like we will be getting back into town after the Brain Tumor Awareness concert at Ashland Coffee and Tea (featuring Susan Greenbaum and Cheryl Fare). I am SO sorry that we will miss this because I know it will be great. Please come out and support the event for us! There will be a 50/50 raffle for Charlotte and a chance to hear some great music.

That is all I have to say for now. Rumor has it Charlotte will be making an appearance at a Princess class tomorrow. And I get to watch the season finale of LOST tomorrow night. And did I mention that I get my new iphone tomorrow? Should be a good day....Signing off...

Rachel

A Lot to Consider

Hi all,
Feeling very beat at the moment. There are a lot of questions and we have some things to consider.

The good news is that her blood counts look GREAT. Everything has come up where it needs to be.

Dr. Tye does want to attempt another surgery. Given that her brain has had time to heal since the last surgery, he should have a better view of the tumor and will hopefully be able to get as much as possible. The odds of defeating these types of tumors are greatly increased when they are smaller. Obviously, the risks of surgery (coma, seizure, blood loss, weakness or paralysis, etc.) are there and were discussed. We also talked about the option of getting a second (or third) opinion and we got names of colleagues/peers at UVA, DC Children's and Johns Hopkins with whom we could speak if we want to go that route. If we don't feel the need for a second opinion, she could have surgery as early as May 13th (next week). Roger and I are currently weighing these options.

On the oncology side of things, Dr. Khan met with his former supervisor and mentor at MD Anderson Clinic in Houston, TX. They have a new method for treating PNET that would probably benefit Charlotte. What they do is take samples of the tumor and treat it in the laboratory with multiple agents to determine the "best" method of treatment for her specific type of tumor. Instead of using a standard protocol, she would get a customized treatment just for her tumor. This tends to work better in cases where the tumors are "ill-behaved". Here is how it would work: Once Charlotte was well enough to travel (but before we would need to begin chemo/radiation), we would travel to Houston and they would see Charlotte as well as get a set of slides with the tumor on them. That part of the process would take just a day. We would return home and within about two weeks, they would develop a treatment protocol for Charlotte which would involve some combination of radiation and chemo. They would share this treatment plan with Dr. Khan and we would proceed from there (with her continuing to get her treatment at MCV).

Meanwhile, in all of this we "lost" Mickey Mouse. We accidentally left him in the lobby of the clinic and by the time we realized he was missing, he was gone. Kinda interesting because he had a name badge on him with her name on it. Anyway, we have already received a "loaner" Mickey and are probably getting another one very soon thanks to some Disney connections (thanks Annette!). Just one more thing to slam us down while we're already on the ground. Roger's pretty upset about it.

Anyway, hope everyone is enjoying the weather. It is GORGEOUS. Roger and I have to get to work and we will update everyone as we know more.

Rachel

We are strongly leaning on this option. We just have to consider timing, logistics, and the reality of leaving our business for about a week's time.

Right now we have a lot to think about and we let everyone know that we would consider our options and let them know on Monday.

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.

Breathing...breathing...

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.

Rog

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

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

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".