Thursday, April 30, 2009

Update from the Hospital

Thank heaven for pull out beds! I don't know who decided that a reclining chair that really doesn't even fully recline is a healthy or sane way to sleep in a hospital, but those old-school chairs don't cut it. As mentioned in a previous post, we were blessed in this room with one of the "roll-out" style beds that we had in the PICU. What a difference! While a sleep in the hospital is rarely truly "restful", that roll out bed made all the difference. When I win the lottery, I'm going to make sure EVERY room in the hospital has one of these new chairs and trash those old ones!!

But I digress...

Charlotte had a pretty good afternoon yesterday. The nausea she had during Daddy's shift seemed to have subsided by the time I arrived. Her appetite was pretty finicky (mainly eating bread and cereal) but at least she was eating and keeping things down. We've also managed to get her to take all her oral meds except the Docusate so that's good. Again, it's so nice to have doctors and nurses who know us and her very well because nurse Nicky KNEW that we wouldn't even really try the Docusate. She didn't want to force the issue either at this point (for those of you who don't know, it's an anti-constipation med. but it tastes REALLY nasty. She is taking another med for constipation that tastes a little better.)

We had a visit from some VCU basketball players but Charlotte was too lost in "Wonder Pets" land to be very social. It was AMAZING to see her tiny hand in their HUGE hands when they gave her high fives. They gave her a VCU bag which she seems to like.

She settled down to sleep pretty easily last night and I actually got to watch LOST (!!!) I only missed about the first 5 minutes. So that pretty much made my day.

Not much else to report, I guess. Granny got here yesterday and had a safe trip. First time that she made that drive from Florida by herself so we were happy that it went smoothly. She will be here this afternoon so I can join Roger at the REGISTRATION CELEBRATION at romp n' roll tonight. If you haven't heard, there will be FREE Papa John's pizza and Open Gym time while you get to register for your summer classes and camps. Come on out and enjoy the fun!

I will bring this post to a close and maybe even try to shower before Charlotte fully wakes!


Wednesday, April 29, 2009

Charlotte had a Pretty Good Night

Always have to lose one post per round.

Just had a fire alarm so I posted what I had typed but failed to realize that my connection had "expired." So off to the great ether went my morning's thoughts.

Suffice to say that Charlotte had a pretty good night in spite of the beeps, diaper/medication changes, and the little baby admitted last night about midnight. I'm not sure if it's a boy or a girl but he/she was having a very rough night. Another one for the positive energy focus group.

I'm copying as I'm going btw.

It was the morning of her 100th day that ran over CJ like a Mack truck. I woke at around 5:30 from a deep sleep and moderately good dream to CJ "yarking" what little she had in her stomach. She was still asleep so it took her a minute to realize she shouldn't put her hands in it.

We changed her clothes, diaper, and bedding and she zonked again.

About 8:30 she threw up again so they gave her an anti-nausea steroid with a little more umph than the zofran.

She's still sleeping and I can only imagine that she will most of the day.

Grandpa left this moring and I understand he left behind some Juanita Bonits goodies. Thanks! I can't tell you how nice it was to have my dad here. He covered CJ shifts Rachel and I couldn't have possibly covered.

Granny comes in today so the family revolving door continues to go 'round which is good.

Do you think the reporters covering the swine flu outbreak from Mexico did something wrong?

In Romp n' Roll news, Rompy's Summer Concert Series has finally been set. Mark your calendars.

Thursday, June 11 - The Taters (LOVE those guys!)
Thursday, July 9 (CJ's Birthday!) - Clay Mottley (the voice of Tumble Tunes)
Thursday, August 20 - The Uptown Vocal Jazz Quartet with special guest Gypsy Roots Swing Band.

There might also be super secret surprize guests.

Concerts are free, start at 5:30pm, and we'll be accepting cash donations for Charlotte and non-perishable food donations for the Central Virginia Food Bank.

Also, we're having Rompy's Bluegrass Jam Monday night from 5:30 until...? Bring yer ax and yer kin. Kids can play in the gym for $5 while anyone can come jam for free.

Another random thought. With all the amazing technology all around us, why can't MCV have showers that don't leak or drip?

OK so Nurse Nikki just came in and tlod me there is an MRI scheduled for today. as that been on the books for a while? Sometimes I feel so out of touch.

I think a coffee mug is calling me.

Tuesday, April 28, 2009

In the Hospital for Chemo

Ok, so I'm running on fumes with about four hours of sleep two nights in a row thanks to allergies and other factors so I will keep this brief but as informative as possible. And then go crash.

Charlotte and Grandpa journeyed to the clinic this morning while Roger and I journeyed to Romp n' Roll activities. I made it to the clinic by about 1 PM and in true form, they were STILL in the clinic (not admitted yet). We got admitted about 3 PM which is actually a record on timing, I think. Not only that, but we arrived at our room on 7East to find everything "prepared". We are in one of the "nicer" single rooms with a good view, a REAL pull out bed for the parent (a rarity outside of the PICU) and Charlotte's bed already prepared with a new Elmo & Zoe pillowcase and Heather's Care Bears waiting to say hi. (Charlotte "borrows" these Care Bear Figurines from Heather every time she comes to the hospital. It has become their little ritual.

I guess being a "frequent flyer" gets you a (hopefully good) reputation that starts to pay off. We got folks watching out for us.

Our nurse (Caroline) has worked with Charlotte a lot before as well so that helped the process too. We got her situated and got everything moving and she officially started chemo (after fluids, pre-chemo meds, etc.) at 9 PM tonight. Again, another record (usually we "start" at about midnight or later on the day we are admitted).

Charlotte spent the afternoon in a very artistic mood. She painted with watercolors, drew pictures, and made sticker collages. Lots of concentration and creativity.

This was also good because she didn't seem too in need of 1:1 attention from mom. Mom didn't have the energy...

Dad came to relieve me at about 9:30 and now I am home.
And signing off....

OH!!! But wait! Before I forget:

Many of you know about the burrito eating contest at Qdoba on Sunday. I know that many of you have expressed an interest in coming out to support us (mainly by eating dinner there). IF you are in any way interested in participating in the burrito eating contest, PLEASE sign up soon. All registration fees (100%) go to Charlotte. You will eat as many burritos as you can in 10 minutes but they're not the typical Qdoba burritos. They take a few ounces out of each of them. The top prize package carries over a $1500 value and there are great runner-up prizes as well. It looks like the competition pool is kind of slight right now so your chances could be really good! Plus, it's for a GREAT cause. Anyway, the store would really like to have an idea of how may competitors to expect. I know some of you have given me "Maybes" so turn those thoughts to YESes and go by the store at Willow Lawn to register by Friday!!!

Thanks for your time...

Monday, April 27, 2009

Trip to the Clinic was as Good as Could be Expected

Charlotte was bright-eyed at 5:30 this AM! Not so nice for mama who didn't get to bed till past midnight. Oh well.

Trip to the clinic was as good as could be expected. Her numbers looked really good. The NP was checking her out and went to look in her ears. You will never guess what they found: A TICK!!! Yes, an actual, live, tick on the inner rim of her earlobe (the pinna for those who know the technical terms). It was alive and attached but not engorged. So the NP got some alcohol and tweezers and detached the little "sucker" quickly without too much drama.

Then it was dreaded catheter time. It was pretty rough and no better or worse than usual. The nurses did a fabulous job but she was still miserable. She selected a new "accessory set" from the prize box. Nothing like a new purse and jewelry to make a girl happy! Then we went home with a special request to go to McDonalds. She actually fell asleep on the ride home so we did the drive thru and then ate at home. Her appetite has been great lately.

Now she is "chillin" with Grandpa watching Dora. Grandpa will take her in tomorrow morning and Roger or I (probably me) will meet up with him tomorrow afternoon. We will see how long the admission process takes this time!

I now have three volunteers working on a display board for Charlotte. Thanks to Sarah Blankenship for coordinating this. She is contacting the other two moms today and they are going to put their creative heads together.

Roger has been busy all morning at Romp n' Roll and I'm sure he will report on his endeavors later.

Gotta run and be as productive as I can...or maybe a nap???


Sunday, April 26, 2009

You're Awesome for Keeping Up with Us

Sunday morning and we're about to go over 76,000 hits. Don't you people have anything else to do? :-)

I KEED! I KEED! You're awesome for keeping up with us and we feel so supported even by just that number continuously rising.

The "Living With Cancer" Lisa Nichols Richardson Memorial Dinner went very well and at last count, we had a very rough total of over $1000 raised for Charlotte! Thanks so much to everyone involved especially Tina Adkins and Ann Mattio for asking us to be a part of it, constantly treating us as if we were doing THEM a favor. Rarely have I seen CJ overwhelmed by attention! :-)

A band called Fat Skippy played and they were pretty decent. Good party band if anyone is looking. (I think)

We had a very nice breakfast this morning at Cracker Barrel and Charlotte, as usual, had people literally gawking at her cuteness in her "Bald Chicks Rule" t-shirt, Ariel skirt, and Tinkerbell hat. The real finisher, though, was her pair of sunglasses. She started pulling this diva attitude thing that would have been really annoying normally but had us all in stitches this morning. It was like she had no time to be bothered with answering questions with anything other than perfunctory grunts. The princess had become a rock star.

And darn if the only ones who could get her to acknowledge them were the cute college boys in the rocking chairs out front as we were leaving! I need to make a trip to Green Top soon (to get my shotgun!).

Mommy went a little nuts (in a good way, I'm sure Dear) and cleaned the downstairs in a whirlwind burst of energy. All except for CJ's living room domain that constantly remains in a state of destruction. We'll get there on that. Looks good.

I am working on RNR stuff and updating the website (as you can read). For those of you with Facebook, please go to one of our sites to see what other events are coming up. I'll get more stuff up tonight.

Obama's 100 days parallels CJ's experience so we'll be marking the occasion at the hospital with methotrexate, vincristin, zofran, and poup. (Not sure of the spelling of any of those.) 100 days of diagnosis...wild.

At the benefit dinner yesterday, I had a profound realization of CJ's physical limitations when a bunch of the remaining kids, including Charlotte, went to play on the playground. I saw children younger and smaller than CJ running around on the equipment and throwing themselves around like nobody's business while at the same time, Charlotte, who still had a tremendously good time, had to move more cautiously. The best example was the slide. The steps were great and designed in such a way to be very easily navigated by everyone but the slides themselves were a different story. They had a handle at the top so children could grab it, swing under, and drop down the slide really fast. I saw several kids do this including the very young ones I mentioned before. Then as Charlotte got up to the top, it was a challenge just to sit down and get her to push herself over the edge.

I had gotten so used to the way she is, and have been so impressed by/proud of how far she has come, that I lost sight of how far there is to go. What's funny (odd) is that it didn't make me sad or feel sorry for myself or anyone else. Just kind of blew my mind in the way realizing the surreal nature of our lives tends to do. It also made me re-determined (real word) to help her improve physically as much as I can. As I've said, she's come so far already, I can't imagine she can't come that far again.

That's my mushy diatribe for the day. Get away from the computer and go enjoy the sunshine!

Well here I am at Romp n' Roll....(get ready for some FUN???) [Yeah, that's a little in-joke for all you die-hards out there!]

It has been a very good weekend after a very stressful week. Saturday was just an amazing series of events and everything worked out well. Roger already filled you in on the major details. I am very appreciative to Anne Mattio, Tina Adkins, and everyone else who helped to put the fundraising dinner together as well as everyone that came out to support it (and us).

Now I'm working on "stuff" at Romp n' Roll and trying to tie up a bunch of loose ends before the week begins. I keep jumping all over the place but at least I'm slowly moving forward.

Here are some ways that you (Charlotte's greatest fans) can help this week:
o I am still looking for someone who would like to design a simple poster or display board that we could take to fundraisers and events centered around Charlotte. It doesn't have to be fancy but it would basically have a few pics of Charlotte (we can supply those), a summary of her story, diagnosis, and treatment path, and then a place to display a calendar or list of other upcoming events. I'm thinking maybe something covered in fabric (?) and then we can use velcro to tack stuff up and trade out info. I would also love to use the board to promote great organizations that have already helped us like ASK, Connor's Heroes, Care Connection, etc. Anyway, if you have skills in this area (craftiness, graphic design, etc.) let me know. I did have one person with graphic desing skills offer up her services if someone was willing to help her.
o Register your child for a summer of fun (or birthday party) at Romp n' Roll! Yes, summer registration week is upon us and Roger and I will be busier than usual. A lot of you who follow us on this board are regular customers and we appreciate everything you do for us! One of the best ways you can continue to support us is by supporting our business or spreading the word. (Shameless plug, I know.)
Some other "official" fundraisers coming up towards the end of the week:
5/3: Qdoba Burrito Eating Contest at Willow Lawn. Register to enter the contest OR come out and EAT that night. Funds raised go towards Charlotte's health care expenses.

5/3: Need a bathing suit? Everything But Water at Short Pump Town Center will be donating 10-15% of proceeds from sales from 4-7 PM towards Charlotte. Go buy your bathing suit and then come to Qdoba!!

5/6: Glen Allen Golf (on US1 between Ashland and VCC) will be hosting an evening for Charlotte from 7-10 PM. Batting cages, mini golf, driving range...all with a portion of sales going back to help Charlotte. I think there will also be a longest drive contest and a closest to the pin contest.

So that's enough for now. I've got to get back to work and then go home.Thanks to everyone for your continued support and driving energy. You are really helping Roger and I get through this (and Charlotte too!!).

We are almost to round 3 which means that we will hopefully be near the halfway point of this marathon.

Happy day!Rachel

Friday, April 24, 2009

Charlotte is Finally Home

Charlotte is finally home after the never-ending-discharge process. We "started" going home around 11 AM and after waiting for orders, getting a dressing change, getting the last bit of antibiotics, and more all around waiting (oh and having to fix and re-do the discharge orders), we FINALLY went home around 3:30. We made it to Sonic just in time for Happy Hour and milkshake-shake (yay). Then I left Charlotte in the capable and enthusiastic hands of Uncle Kolbey and Grandpa while I drove down to Romp n' Roll, got the loaded-up SUV, and unloaded the obstacle course at the Children's Museum for tomorrow's Connections Fair.

Now back at Romp n' Roll and relieving Roger who had a HUGE day teaching four classes, hosting a playdate (happy birthday Gretchen) and doing many other things. (Good job Rog!)

Much thanks to Grandpa for staying the night at the hospital and giving Roger and I a bit of a respite. We are still both running on fumes and adrenaline but somehow we keep going.

Everything about Charlotte looks better and her white count JUMPED overnight so that is good news. We went home with IV antibiotics, oral antibiotics, but no other meds so that is good. She seemed full of energy today and continues to charm the socks off of anyone whoc comes to see her during the day.

Now the "new" news: while we checked out with the Hem/Onc team today, the doctor said, "Well, since we were supposed to start chemo today, I guess we will see you in the clinic Monday and get things rolling then." To which I said, "HUH???????" They did a double check and sure enough, this cycle is 22 days (not 28) so we were actually due to start today after all. SOOOOO, we are going back to the clinic on Monday to check labs. If everything is still a-ok, we will get the dreaded catheter inserted and will probably start things back up again on Tuesday. Now I'm REALLY glad Grandpa is here since he can probably stay a few more days until my mom can get here on Wednesday. Any child care needs for next week are on hold again so we will let you know if you signed up to help. Meanwhile, Roger and I will somehow need to reconnect, look at our schedules, and figure this out.

And now for this weekend's schedule: We are going to try to contain and curtail Charlotte's activities with others as much as possible. As much as she loves social time with her friends, we are ULTRA paranoid about germs right now. Roger and I will be going to the Children's Museum tomorrow morning, then Roger is off to his gig at the Iron Works with Southern Horizon. Then it's off to the Benefit Dinner at the Elko Center in Sandston. Then home to collapse, I guess.

Sunday is a Romp n' Roll day for mom (but not a full one); just a half day I think.


I think that about sums it up for me. Again, we are building momentum for the next big fundraiser at Qdoba on May 3rd. Come on out for the burrito contest or at least to eat dinner that night. This is a great opportunity to support Charlotte and a great business that has really helped us. Lisa Branner, their marketing director who is putting this whole event together, brought me dinner and brought Charlotte balloons at the hospital yesterday, So sweet! Again, you can get more details about this event by checking out the calendar on the romp n' roll-virginia center website (I will put a link in the RESOURCES section of Caring Bridge) or email me or Roger.

Other small fundraisers going on as well. The way things are going with the insurance company, we will need them.


Thursday, April 23, 2009

Hoping to Leave Tomorrow

Well, now we are looking at leaving sometime tomorrow. Her counts are up and getting better. There are "sub levels" to her white count that they want to improve (her neutrophils). They are going to keep her on IV and possibly oral antibiotics for about 10 days but we should be able to do that at home. Meanwhile, it looks like we are still on track to start chemo (again) next Friday. Sometimes I'm not sure why we bother to leave the hospital.

In other news, we got word from Humana that they officially denied our first appeal so we are off to write more letters. Actually, my second appeal letter is basically written and we are getting Dr. Khan to write another one on our behalf. Humana keeps looking at this as a "convenience" decision on our part and not factoring in anything like Charlotte's age or the intensity of her treatment. Basically, they see it as our "choice" to keep her at MCV and since we are making that choice, we should just suck it up and pay the out-of-network costs. They think that since they are not outright denying her care, they have done everything they need to do. I'm pretty much resigned that will be the outcome at this point but at least we will fight one more round and say that we fought the good fight.

I had a nice walk outside today while Grandpa visited with Charlotte. I journeyed over to the Capitol grounds where it was just beautiful today. Dogwoods, azaleas, and tulips blooming everywhere!

Grandpa brought Charlotte a belated Easter basket filled with Hershey's Miniatures and Charlotte and I have been "sharing" her chocolates with the hospital staff, offering some to everyone who comes in her room. It is so sweet and a great way for Charlotte to engage socially with others. The hospital staff (of course) get all googily when she offers them a candy!

She also had a fun little playdate with the preschool teacher and two other kids on the unit. They played in the playroom and finger painted. Great fun!

Now she is back to her room and watching a bit of TV. Yo Gabba Gabba for a change!

Roger's dad will be spending the evening here so hopefully Roger and I will get a few minutes together tonight. Hopefully we will not be too exhausted to keep from collapsing into bed without socializing for a bit. That has become a big challenge recently.

Let's hope for a discharge from the hospital tomorrow!


Wednesday, April 22, 2009

Update from the Hospital

Well thanks to your HUGE response, the survey we created closed automatically (the free survey option closes at 100 responses). So if you would still like to complete the survey, we created a new version (same questions). Go HERE to complete the survey if you haven't already. As mentioned before, we know that not everyone will be able to participate in this but for those who can and want to, we would like to get feedback as to how you would participate. We just want to have a way to celebrate the end of Charlotte's treatments and will include anyone who is interested.

Not much update from the hospital and no time for a longer update so we will have to write more later. I hope no news is "better" news.


Mom on duty!
I'm here in the hospital and she seems to be doing pretty well. She hasn't had any fevers for a while so that is good. Still getting loaded up with antibiotics, antifungals, anti-everything. I don't know if Roger mentioned this in the last post, but she had a visit from a pediatric gynecologist (yes, indeed, there is such a thing!) to check out her "bum-bum". [And for those of you who may be confused, bum-bum is Charlotte's word for vagina...not bottom] Anyway, they were concerned because the rash/skin breakdown was similar to that seen in flesh-eating bacteria which, while rare, can happen with kids who have low counts and neutropenic fevers. So far so good and we just continue to monitor everything for changes.

Otherwise, I understand that she has taken lots of walks today and she's eating a good bit (especially they pretzel and cheddar goldfish I brought which seem to be a new favorite).

Roger's dad is coming in from Tennessee today (yay) to help us out. That is a blessing! I think that will help with a lot of our coverage issues. If all goes according to plan, we will ride this out until next week and get ready for the process to start all over again. My mom is planning to be back here on or around April 30th.

That's all I have to report. It was a busy day at romp n' roll getting prepared for summer registration next week and teaching classes. Now it's Roger's turn...


Tuesday, April 21, 2009

Very quick post before a very busy day.

Roger and I are off to work. Charlotte is home with Uncle Kolbey who is back from a quick trip to Florida.

She had a good day yesterday with a playdate and trip to the grocery store. Roger takes her back to the clinic today for a numbers check.

We need your help. Please go HERE to take a very brief 5 question survey. As some of you know, we have been throwing around the idea of a celebration/fundraising Cruise for Charlotte to take place sometime in the Fall of 2010. We need some input so please complete the survey (even if you think you might not go on the cruise). Thanks.

Gotta get to work...


What can I say? We just LOOOOOVE the hospital!
She got to clinic this afternoon and had a fever of 102. Needless to say, we are BACK in the hospital. We'll be there at least 48 hours so lots of plans on "hold". We will keep you updated. If you were signed up to watch Charlotte this week, it may not need to happen (then again, we might need you to hang out with her at MCV on Thursday evening. Have to check the schedule.).

If you missed the previous post, please make sure you read it and take the Cruise for Charlotte survey. We understand that many of you won't be able to particiapte, but we'd like to get a general idea of who would be interested. I saw some folks with school age kids comment about looking at a different time (not during the school year) and we may think about that...

That's it for now. I gotta go get ready to teach Roger's classes tonight.


Here we are again.
Maybe we should just set up shop here and never leave. Kind of frustrating. Charlotte actually looks and seems to feel pretty good. The Tylenol works pretty well to ease the aches and pains of the fever.
Timing is particularly bad as this week has so many things going on. If you're scheduled to watch Charlotte the next few days, it will most likely be at the hospital. If you're unable to come here, please let us know asap. Thursday in particular is very important.
So I caught Child Life just before they left and they had a laptop for me so I am connected (just in case you didn't realize).
The room is small and only designed for one bed which isn't a bad thing. And the DVD player works.
A lot of kids here today. Hopefully most of them are just dealing with colds and things that will let them go home soon. Come to think of it, I hope that for us too
I'm hoping we can get a visitor or two tomorrow morning (preferably with coffee!). Rachel is covering classes for me tonight and will relieve me tomorrow afternoon.
The cruise survey has garnered a great deal of interest. Already, we have dozens of answers. Thanks a lot. If you haven't taken the survey, please click on the link Rachel put up. Please go HERE to take a very brief 5 question survey. Thanks, Rog

Monday, April 20, 2009

I'm Spent!

It's been difficult for me to get moving today. That might be why it's already past 9 and I'm not showered or out of my PJ's yet. I feel like the Energizer bunny has finally lost her charge. I'm spent! (surprised???). The rain and allergies don't help. Anyway, fortunately, I just have some "office work" to do today. It DOES have to get done but at least I can work at home. More glorious rain coming down today. I have a beautiful view of my azaleas and dogwoods in the backyard as the rain falls. Very pretty.

Charlotte came home last night and we had a quiet family evening. She fell asleep before 8 PM (and slept through till almost 8 this morning!) She went home not needing any oral medications (yay) as long as she continues with a regular pooping regimen. We go back to the clinic tomorrow for more blood draws just to check numbers. Her numbers are low but stable.

Uncle Kolbey comes home tonight so we will be picking him up from the airport. I think he will watch her tomorrow morning but just a reminder that we have a few other Care Calendar needs coming up at the end of this week and next week. Please sign up to help if you can.

Another reminder about the "Living With Cancer" dinner this week at the Elko Community Center. This is an all-you-can-eat feast from 2-5 PM with all proceeds going to Charlotte. Our neighbor's daughter organizes it every year and this year they selected Charlotte as the beneficiary. Tickets are $10 for adults and kids 7+. We are selling tickets at Romp n' Roll and I think you can buy them the day of.

Thanks to everyone for the continued help and moral support.


Sunday, April 19, 2009

We are Waiting to Go Home!

The waiting game is in effect.

She's had a very good 24 hours or so. She has pooped THREE TIMES in the last 24 hours. Fever has stayed down and her appetite seems to be returning to somewhat normal. Her counts are still fairly low but stable. We are just waiting for the go-ahead from Dr. Khan before we can go home this afternoon. Hooray.

Unfortunately, the rash on Charlotte's "bum-bum" is still there but it doesn't look any worse (and may actually be a little better). It seems to bother her most when she poops.

We are getting so used to the hospital routine I think we are getting it down to a science. By this round of hospital stays, I think we've finally figured out what things we need to bring, how to get them here, and how to get them home rather efficiently. I've already taken my first "load" of stuff (dirty laundry, extra snacks, stuff we probably won't need for the next few hours) down to the car in one load. The rest can go with Charlotte in the stroller when we get the A-ok to leave.

We did get out and about this morning with one ride in the wagon and then a walk around the nurses station. And two trips to the playroom to work on puzzles and play with the farm. She's her usual adorable self with the nurses and hospital staff.

So that's all I have to say for now. Hope everyone enjoys their Sunday.

Friday, April 17, 2009

It was a Decent Night

It was a decent night. Charlotte is still spiking a fever and the Tylenol seems to keep it "artificially" at bay for a while. Then it goes up again. It's been as high as 103! She also keeps complaining that her "bum bum" is hurting and the area is very red. Nurse Nicky made up some special "booty paste" that is even better than the sensicare cream and that seems to help a little. My guess is a UTI but they're waiting on cultures to come back. Also, her latest blood counts were even lower. I guess yesterday, they were low but not quite low enough for platelet or blood transfusion. Today they were VERY low so she is getting a blood transfusion right now. She slept ok considering all of this and I got a few hours of shut-eye too. Now she's watching Sesame Street and drinking some water. Yay!

At least we are back on 7 East this time. It's so much quieter here and it's nice to be with a crew of nurses who really seem to know how to work with younger kids and really know how to interact with Charlotte. Such a difference!

I actually gave myself a "home manicure" last night. I had a fabulous coupon from Bath & Body Works and treated myself to some good stuff, including a manicure kit. Then it was off to CVS for buy 1 get 1 free nail polish. Can't beat it. I offered to paint Charlotte's nails but apparently that's only Miss Heather's job.

It seems that Auntie Retta and our friend Lauren will both be stopping by for a visit today. We will definitely be here through tonight and, of course, we just take it one day at a time. The view from the room is beautiful so I hope everyone enjoys the day!

I realized last night that we (meaning Charlotte) has spent more nights IN the hospital than OUT since January 20th. We've actually been in the hospital over 45 days and out for only 40. And during about half of those 40 days, we have been to clinic or therapy....quite a life!

Well, my tummy is grumbling so I need to round up some breakfast...


Overall, it's been a very exhausting but OK day here at Camp MCV. The highlights:

She keeps getting a fever although it is taking longer for her temp to go back up each time after the tylenol. That should be a good sign but it's still frustrating that she's still having fevers.

She is on heavy duty antibiotics and she had her last dose of Vincristine for this cycle today. No poop yet today but we're definitely hoping for one. She's due. Her "bum bum" is still very irritated and we had the doctors take a peek just to make sure we don't need to be more concerned. Right now we are just watching it and slathering with cream. Her cultures have not come back with anything positive and her counts are a little better since the transfusion. They just took more blood/cultures this afternoon.

Her appetite has been very hit or miss all day. Not eating much at all. Her color is better since the transfusion but it seems more hair is falling out. We've been noticing the eyebrows and eyelashes thinning out a lot this round. It really stinks when the lashes get stuck in her eyes. Frustrates her a lot.

Thanks to Auntie Retta for coming to visit for a while as well as Lauren (one of our Romp n' Roll buddies) for bringing mommy lunch. Sweet potato chips....yum....We also got to chat about LOST for a bit. One of my favorite activities ever these days.

She has been quite the couch potato today despite everyone's best efforts to get her up and moving. We did go to the playroom one time and she got up to walk and ride in the wagon. Besides that, we've been coloring, watching movies, and reading books. She's also talking everyone's ear off. I guess she comes by it naturally. I, on the other hand, at least got some activity by going downstairs a few times and taking the STAIRS up on the way back. Seven flights up each time. My only exercise for the day so I'll take what I can get.

So now I'm just counting the minutes until Roger gets here. Should be relatively soon. Then changing of the guard and home to a full day of Romp n' Roll tomorrow. It seems based on everything going on that we will probably be here through Sunday.

A happy birthday to Ian. We are sorry to miss his party tomorrow, especially with the weather as it is.

Oh! A big plug for Megan Blake. Many of you know her from pics of our head shaving party. She's the fabulous woman who gave Charlotte her Bald Chicks Rock t-shirt. She also has her own Caring Bridge page and posts frequently in our Guestbook. Anyway, she was nominated for Supermom of the Year on and totally deserves to win. Please go HERE to vote for her. You don't have to live in the Richmond area to vote for her. She gets a fabulous prize package (including stuff from Romp n' Roll!!) We have a great network here on Caring Bridge so I think if everyone who follows our page votes for her (and get some of YOUR friends to vote for her as well) she has a great chance!!

That's all I have to say for now.


It's amazing the effect music has on some people.
We have been playing music for Charlotte since before she was born (surprize!). She was listening to Miles Davis "Kind Of Blue" in utero.

Throughout the tumor journey, we've been trying to keep music going most of the time one way or another whether it's a CD, videos, or me playing Frosty and Battle Cry Of Freedom on the "kitar." Just lately, though, we just haven't had as much straight music going and I wanted to remedy that. I also wanted to play something "normal" for her and in my experiments, I've found two ladies who have captured the ear of the princess.

One is Maggie Drennon ( I think she's only OK but we were listening to her CD on my iPod the other day and CJ got quite irate when I wouldn't repeat one of the songs for her.

Another singer with whom CJ has fallen in love, and the best example of "huh?", is Angelique Kidjo, an African pop singer with a seriously edgy voice who can sing intensly rhythmic tunes and beautiful ballads equally well. I played it for her the other day telling her it was her "Happy Music" and she just loved it! Tonight I put on a Kidjo CD and the effect was almost immediate. She settled down and went right to sleep and it wasn't during a slow, soft song either. It was during one of those intense, rhythmically driving songs.

So she's asleep and I thank Angelique Kidjo (

Both Mommy and Daddy are pretty worn out. I had a full day of absolutely WILD classes at Romp n' Roll along with a very fun Birthday Bash. I think there are pics and videos of today's events on Facebook. Lots of fun!

Well, as usual, it has taken me a very long time to get this done and I now need to sleep. See you all in the morning.


Thursday, April 16, 2009

Charlotte is Back in the Hospital

Crap...crap...crappity crap crap...

We are back in the hospital. Charlotte woke up with a 102 fever this morning. Roger took her to the clinic and her counts are near 0. They also think she might have a Urinary Tract or Bladder infection. Joy.

She has been admitted to 7 East and they will do a blood transfusion plus possibly a platelet transfusion.

No word yet as to how long we'll be in this time. We'll let you know.

In other (much better) news, I met this morning with the Marketing Rep at Qdoba Mexican Grill regarding the fundraiser for Charlotte. They will be holding a Burrito Eating Contest with lots of prizes and opportunities to donate to Charlotte's cause. The date is May 3. More details to come in a future post. Will post on Facebook as well.

Gotta run and get ready for Romp n' roll.


Big wheels keep on turnin'....

Thanks to Monica for that post in the Guestbook today about the Alligator Wrestler. Loved it and apparently it touched a lot of y'all too! I guess I can add Gator Wrestler to my moniker now!

Despite the setback, it's been a busy morning for me. I have posted a calendar of Charlotte's Fun-Raising events! It is on the Romp n' Roll-Virginia Center website. Go to the ABOUT US tab and then go to IN THE NEWS. Or you can just go HERE

If there are changes or adjustments to the calendar, I will let you know when an update has been posted. I hope this will help everyone get the word out and know about new events. Also, if you are on Facebook and have not joined the Get Well Charlotte Reynolds group, you can do that and stay up to date on the latest news and events.

About the May 3 event: Qdoba at Willow Lawn (they are a mexican grill with yummy burritos, tacos, etc.) is holding a burrito eating contest with proceeds to benefit Charlotte. Here is how you can help:
0. Enter the contest! There will be a $5 entry fee before May 1st and then a $10 fee after May 1st. All proceeds to benefit Charlotte. There will be "special" (i.e. simplified) burritos made for the contest and contestants will have 10 minutes to eat as many as they can. (Contest will be at 5 PM). There will be a release form available at the store that must be signed when you register. Anyone under 18 who wants to enter needs a parent/guardian signature. There will be great prizes for the winners and participants! Entry forms are not available yet but should be soon.
1. Come out to support the burrito eaters! Have your dinner at Qdoba that night (4 PM-close) and 10% of all sales will benefit Charlotte.
2. There will also be a fishbowl and prize wheel for additional donations.
Charlotte will be in the hospital at this time with her next round of chemo but we are hoping that Roger or I will be able to make an appearance at the event. I will hopefully have posters soon that will have more details about the event so you can publicize and share with others.

On this note, I need someone with a crafty bent to help. We would like to make a simple display board or poster with some pictures of Charlotte, some information about her "story" and maybe a way to list other upcoming fundraising and/or brain tumor awareness events. I think this would be a great way to promote ASK and some of the other Brain Tumor Support Groups in the area as well. This would be something that we could take to events held in Charlotte's name and/or her honor. If you are interested in helping with this, please email me at

I think that's it for now. Gotta go do some actual Romp n' Roll work, I guess! Shhh...don't tell my boss I'm slacking on the job...


So here we are.
Hopefully not for long. Let me first say that it's not nearly as bad this time as it was the first time we found ourselves here because of low blood counts. Damned inconvenient but at least she's been pooping regularly and we're back on 7-East which is more her age range.

Yesterday we went to PT and after a full day, as you already know, CJ fell asleep on my chest at around 2pm which was our first clue that she wasn't feeling 100%. Then through the rest of the evening, after she woke up around 5, she was whiny and grumpy untill I put her to bed around 8 or 8:30.

She slept through the night but I noticed that she was really warm when I came down to change her at 1:30am. Rachel got the thermometer but it consistently said around 98 Degrees. When I checked her again at 7:30, she was still hot and I didn't trust the temperal (sp?) thermometer so Rachel got a different one and Charlotte actually let me place it under her tongue. That showed 102.2 so we called the HEM/ONC Clinic. They said bring her in and "pack a bag" just in case. We would have anyway but it was good thinking on their part.

We came into the HEM/ONC clinic around 9am and were there long enough to watch "Over The Hedge" (very funny), and a couple of Doras. There was drama when one of the nurses wanted to look at the rash on her "bum bum" and Charlotte absolutely refused (still traumatized by the last catheter experience I think). This time there was no saying "no," though, so we had a meltdown when all negotiation didn't work and we had to force it. The nurse maybe could have had a slightly better bedside manner but I know it absolutely had to happen.

She also needed a "pee bag" (for want of a better word) and that could have been as bad if not worse but the nurse, a different one, made sure CJ knew that it wasn't a catheter and that nothing was going inside. Once that was established, CJ was almost excited to get it on. The relief was obvious. We even got pee out of the deal.

Right about this time, I finally noticed "the look." That cancer patient look and it didn't surprise me when her bloodwork came back showing lovels down to nothing. It's amazing her blood is even red. Dracula wouldn't want her blood. She will need a transfusion.

Overall, the nurses at the HEM/ONC Clinic were great and we saw Miriam doing a little solo MT action! She let CJ play with the "hamster bells" which were very cool. Also saw Dr. Matt Bitsko (R-MC Alumn) and we chatted a bit. He had hamster bell envy.

On odd behavior: CJ got agitated over the green oxygen tank attached to the IV tower and I can't for the life of me figure out why. It took quite a bit of convincing to get her to believe it wasn't something that was going to cause her pain.

She has eaten a good bit, slept a little and is now in a very good mood. That's good.

Although it's not "fine," I'm feeling much better about this than the last. So much better, in fact, that I wanted to share a trailer for the next movie we're planning to see. I thought, at first, that it was the story of our lives. Here's a link:

Hopefully, we'll only be here a couple days at most. Rachel is coming to relieve me tonight and she'll be spending the night. Then I'll be spending tomorow night. I'm sure Rachel would enjoy some company. Auntie Retta said she can come by tomorrow morning. Anyone interested in spelling her for a bit or dropping off some lunch? Call her cell to confirm and to make sure someone else hasn't jumped on it.

Side line...Heather from child life saw me and said, "I'm going to make your day." We went into her office and I was expecting a new Dora or Caillou video but it was actually a really big cardboard tube she had salvaged for me from a roll of flooring. I had asked her to save the center of the big paper rolls they use for art and she did one better. I'm going to make a rain stick out of for Rompy's Band class.

So off I go to entertain the princess.

Wednesday, April 15, 2009

Care Calendar has Been Updated

Needs to watch Charlotte over the next two weeks have been posted on the Care Calendar. Please go there if you think you can help. There are some morning and evening needs. You can also email me if you can do some of the time but not all. Some of the timing is flexible.
Instructions for accessing the Care Calendar (you need a code) are in the RESOURCES section of this Caring Bridge site.
I think I have also figured out how we can post a calendar with fun-raising events. More on that soon. Gotta go teach...

Charlotte is sleeping. I hope that's not a bad sign but my kid never naps! She had a busy day,though. Roger took her to PT and she did very well. The therapist was very impressed with her progress and she got to ride the tricycle.
Then it was off to lunch with her "boyfriend" Wyatt at chick-fil-a. She actually climbed up the play area and went down the slide. She hasn't been able to do that for a while. We also ventured over to Romp n' Roll for some playtime. Needless to say, when she got home, she went to snuggle with Daddy and CRASHED.
Oh, and she POOPED this afternoon. Hooray for poop.
That's all the news to report so far.

Tuesday, April 14, 2009

A Few Quick Notes

Very quick note.
The Randolph-Macon College bookstore (now owned by Wal-Mart! :-) ) has Charlotte bracelets!

There are also lots at the store and we'll be happy to deliver any where!


Next very quick note.
Ashland Breakfast and Lunch (Formerly Pete's Restaurant) on Ashcake and US 1 now has pink bracelets. (and pretty good chicken noodle soup as well).
Had a cool event in my babies class today. One of the more serious babies actually gave me a little bit of a smile while I was tickling her during Rompy's goodbye song. That was a first and it made my day!
Other news, I've confirmed the participation of the Uptown Vocal Jazz Quartet as the "headliners" for the final concert in Rompy's Summer Concert Series. The concerts will take place on the second Thursdays of June, July, and August. UVJQ will perform on August 13 and Gypsy Roots Swing (with Thomas Wakefield) will open the fun with their own brand of "jazz manouche." Both bands are donating their services.
All concerts will be used to gather food donations for the Central Virginia Food Bank and monetary donations for CJ's fund. They'll be in the Chick-fil-a parking lot and we're always looking for more sponsors!
As I get all the other bands confirmed, I'll send out the big press release. Just thought you get excited by the Uptown/Gypsy Roots development. Gotta love those guys!
OK, not such a quick note.

Mommy's turn:
Charlotte's days continue to be good. I can only assume that the overnight IV fluids that we have this time around have something to do with it (and maybe the glorious power of prayer). She continues to keep up her energy, appetite, and a poop at least every other day. We got permission today from our NP for IV fluids to continue until her clinic visit on Friday.
We will be very sad to see Granny, gramps, and Kolbey leave tomorrow. for Florida. Kolbey will fly home on Monday but Granny will not return until the end of the month....hopefully timed well with our next round of chemo.
As mentioned, i will be posting some "needs for help" on the care calendar soon. Hopefully by late tonight/early tomorrow.
ALSO, our fun-raising team has been busy, busy, busy. First of all, the checks keep floating in from the Head Shaving party with additional donations for Bob Flanagan and Mitch Hayes. Way to go! We also have a LOT of upcoming events in the remainder of April, May, and even into June that will benefit Charlotte. I am thinking that the best way to get the word out about this is through a published calendar; however, I'm not sure WHERE I can publish it. There are no spaces on Caring Bridge and Care Calendar doesn't seem to be the most user-friendly thing in the world. If anyone has any ideas about this, please email me directly. I was thinking of something in Publisher/PDF format that I could post online somewhere...I'll work on that.
Tomorrow morning it's RnR for mommy and PT for Charlotte (and Daddy). Then we'll do the big switcheroo in the afternoon.
I'd like to see the sun but I really won't complain...

Monday, April 13, 2009

There is much work to do but I must complete an update before the "fans" get restless.
Easter day was good. I think it may have been the first Easter ever that I didn't attend service somewhere (either Vigil or Easter day). Kinda weird but to be expected given everything. We didn't really want to take Charlotte out too much and I was just T-I-R-E-D!!
Charlotte got to hunt for eggs in the front and back yard (a little PT/OT action with the bending, lifting, etc.). Later, she went for a walk up and down the cul de sac delivering some of her eggs to the neighbors. Kind of a reverse trick-or-treat. She did get all dressed up for the day and we will have to post pics later. I have yet to download them. A purple dress, pink sweater, white tights, and yellow floppy hat. She looked like a spring flower!
Later in the day, we had a yummy family dinner and then mom and I got a walk while Kolbey and John went exploring.
Back to the grind today. She had a small poop earlier in the day. She also got to see our chiropractor (Dr. Anna Madland) and Daddy got an adjustment too. I ran errands and did some work at Romp n' Roll. I needed to get a LOT of paperwork done but got distracted/waylaid by the day's events so it will probably be a late night. Roger was busy with his usual activities as well. Yes, spring break is over and the crunch is back.
As Roger posted, we have a lot of events coming up. Some are fun-raisers for Charlotte and some are just times when we need your help and/or support. I will try by the end of this week to get things posted on Caring Bridge, the Care Calendar, etc. I wish Caring Bridge had a calendar feature. It sure would make things easier.
Anyway, my parents leave Wednesday and Kolbey will be going with them for a few days (flying home on Monday) so it will be quiet around here for a little while. Hopefully we won't experience any more bumps before we go back into the hospital for chemo. My mom is planning to return for round 3 (which should be on or around May 2nd).
An update on the insurance front: We got a denial letter in response to the FIRST contact the insurance ombudsman made with Humana. We have since submitted a formal letter from us, a letter from Dr. Tye, and a letter from Dr. Khan advocating for our stay at MCV to be considered "in-network". This is on the basis that Charlotte needs intensive, consistent care for a severely life-threatening and complex condition, MCV has already agreed to match whatever Duke would charge for care, AND we are actually saving Humana money by staying close to home because then we will not need to take advantage of reimbursement for travel (which we would get with in-network care). We are also already drafting the response to the denial letter, again with the ombudsman's help. He has been oh-so-helpful throughout this process and i think he wants us to succeed as much as we do.
I also spoke with a representative from Senator Warner's office. She is based in Midlothian, I guess. We talked at length about the situation and I brought her up to speed on the current events. She maintains that because insurance is a state- regulated issue, Senator Warner really can't "intervene" on our behalf. I told her that I understood the legalities and logistics of all that entails and while I do not expect Senator Warner to necessarily intervene on our behalf, I DO want him to recognize that this is a situation that is indicative of why we need a Universal Single Payer system in this country. This is not necessarily about fixing Charlotte's situation but about fixing the system so that NO family has to endure this problem. We are struggling because insurance companies have been allowed to lobby and legislate medical care in this country. There should be no "in-network" or "out of network" designations...only equal coverage and equal care for all citizens. Well, my soap box seemed to fall on half-deaf and not-so-understanding ears. I think she was sympathetic enough but she just didn't see it as a "national issue". She also told me that I should write a letter "by hand" and have it delivered in the mail. I told her that had already been done and that a letter had been HAND DELIVERED to Senator Warner's office in DC. Obviously, the man either gets way too much mail or the right hand doesn't know what the left is doing. Maybe a little of both. Needless to say, I doubt our overtures for social change have done very much but we can't say we didn't try. And there is no way that I will STOP trying.
I must close this post as I have much work to do (miles to go before I sleep, as they say). More to report tomorrow...

Sunday, April 12, 2009

Happy Easter

Happy Easter everyone. Thanks so much, again, to all involved with the Head Shaving Party on Friday. It was a great day from the word "go."
The morning Open Gym was busy with lots of our regular faithful members and that meant more to me than most people can know. It meant that our members are invested and interested enough to keep track of our wacky schedule shifts and adapt with them. (This has actually been a very successful Spring Break and now we are VERY excited that the official Summer Session schedule will be available TOMORROW!)
Then, after Open Gym, I went running around, gathering stuff for the big event including some cool jars and vases for the donations, face paint for the freshly shaved heads, and prizes. I had some good karma going and the timing actually worked out perfectly to fit in a Dr.'s appointment for myself. (Yeah, I actually need those too sometimes) Just a checkup. My numbers were all good except my cholesterol for which I actually have medication but I had stopped taking for a while to see if my low numbers from last time were a result of the statin or better eating habits. Turns out it's a little of both so I started taking a half dose again since that's what worked so well for my last checkup.
So, back on task...Got everything together and got things rolling right at 3pm (again, perfect timing despite a bog ole' traffic jam on 95). The rest you know about. $4600+. THANKS!
Rachel gave out lots of thanks but I want to send out my own.
Amanda from Great Clips a couple doors up was so generous with her lunch hour and did such a great job of whipping out those heads.
Also, Cici's Pizza gave us TWO huge trays of brownies for the party and has often offered meals (which we've taken them up on once)
I can't tell you how much I appreciate Pam and Chick-fil-a for everything they've done and are planning to do for us/Charlotte. Thanks for letting me be a cow! :-)
The head shavees. You helped make it so much fun!
The completely AWSOME RNR staff who proved once again how much we couldn't do without them.
Sorry for forgetting anyone. I'll remember them during my Grammy acceptance speech!
Now we have our next event coming up:
The Lisa Nichols Richardson Memorial All-You-Can-Eat Benefit Dinner, titled, "Living With Cancer" On April 25 from 2-5pm. At the Elko Community Center in Sandston, VA. Tickets are $10 and will be on sale at Romp n' Roll VA Center! All proceeds to help Charlotte.
This post to be continued...gotta run to the store to get some last minute stuff for Easter dinner...

An Update:
OK, I'm back. Yummy Easter meal. Charlotte is still eating like a champ. She's been downing the strawberries like nobody's business. Need to get a little something else in her so she doesn't explode (if you know what I mean).
The Flannagans (Lou and Joanne) brought by a couple discs of pics from the head shaving party and I'm going to try to post a bunch of what I have to Facebook since that's the best place I've found to share lots of photos (given my limited technical ability). Thanks folks.
Back to schedules...Happy Start of the Civil War. Does licking my chops at the number of future Southern Horizon gigs make me a war profiteer? 150 years or so after the fact? :-)
Here's what else is going on:
Tomorrow evening: RNR to Go up to Caroline County for an adventure class. There were several people from up there at the Head Shaving Party. Thanks for being there.
Tuesday, April 21 - We're invited to participate in Come and Play With Chic-fil-a at Virginia Center Commons Mall (in the play area by Sears) Not exactly sure who's going to do that as I will be doing RNR to Go. Needs to be led by a trained employee but volunteer "helpers" are always welcome.
Thursday, April 23 - There's an Open House at Rainbow Station by Memorial Regional Hospital. We can use a volunteer "helper" and a babysitter for CJ.
Saturday, April 25. - Talk about a nuts day! Besides the "Living With Cancer" benefit dinner in Sandston, we also have The Connections Fair at the Childrens Museum all day, Miss Alyson's Wellness Fair in Ladysmith, and a Southern Horizon performance at Tredegar Ironworks at 1:00. So it's going to be a huge day. I would like to take Charlotte to the dinner after the SoHo (My personal abbreviation) performance but we will probably need "CJ coverage" before then if anyone is available.
Wednesday, April 29th - I have a conference in the morning and Rachel is teaching at RNR.
Saturday May 2 - Randolph-Macon College is having the Relay For Life and we might be involved a little. Several organizations on campus have contacted us one way or another about doing something for Charlotte. More details as they develop.
We're going to have "Rompy's Bluegrass Jam" at the store on Monday, May 4. Bring your axe. Free for adults, kids can play in the gym for $5.00 each. Donations to the cause always accepted! Charlotte will be having chemo round 3.
I'm sure we will eventually have all of this on the Care Calendar so please check there to volunteer/sign up.

Friday, April 10, 2009

Last Night's Head Shaving Party was Amazing!

I forgot to send out probably the biggest (most?) kudos to Granny, the original Brazen Hussy (ask us), for standing her ground and being CJ's biggest advocate when we couldn't be there. It doens't take Fellini to figure out where Rachel and Charlotte get their maddeningly lovable firey streaks.
Speaking of her, the word from the hospital this morning is that she woke up happy. I actually got to talk to her on the phone for a bit. I asked her if she wanted me to shave off my goatee and she said no, 'I like your goateer on your face." So on it stays. I didn't shave the jowels this morning because I thought everything would be coming off. Sorry if I'm a bit scruffy this morning.
The interview on WHAN 1430am went very well and Bob got a $100 donation out of it. Good thing he rolled out of bed! :-) Thanks to Bill and Skip for being so willing to have us in the studio multiple times.
Spoke to Scott at Glen Allen Golf this morning confirming the prizes for today and revisited having the Spirit Night on Wednesday, May 6 from 7-10pm. Should be fun and my idea for the longest-drive and closest-to-the-hole contests is to sell golf balls used specifically for the contests via the government stimulus method. That is $1 per ball or $5 for three.
Hey Devon, hope you got SOME sleep last night.
Gotta go get Open Gym going. (Man! Annette does a lot in the mornings! :-)

An Update:
Here I am sitting at a very quiet Romp n' Roll. Open Gym is over, birthday party won't start till 3. I'm catching up on paperwork and listening to the Dixie Chicks' Lullaby. If you've never heard it, it's a must listen...calming to anyone...
And I'm probably about the happiest I have been in weeks. Last night's Head Shaving Party was an amazing event. Let's just put aside for the moment that we raised somewhere around $5K (!!!!!) for Charlotte's ever-growing medical expenses. There was fun, fellowship, head shaving and painting by some very brave and enthusiastic volunteers, great food, and the best part about it was that I did hardly anything to make this happen. There are so many people to thank but let me start here:
o To Jackie Plank for getting the initial ball rolling
o To Bob Flangan for grabbing the baton and sprinting to the finish
o To Amanda at Great Clips for coming by on her lunch break and shaving heads
o To my fabulous employees for coming out, showing support, cleaning up, signing in guests, bringing food, etc.
o To Chick-Fil-A at Virginia Center and Cicis Pizza for providing food and a visit from "The Cow"
o To the folks at Glen Allen Golf for providing a great prize for our head shavees
o To Margie (our resident Avon rep) for another prize
o To Annette's dad for yet another prize
o To my Aunt Phyillis for the Bose Wave Radio & CD player
o To the now bald heads in the HOUSE:
Mitch Hayes, Bob Flanagan, Jeff Reynolds, Mark Bishop, Wyn Price, Kolbey Hogeboom, Bruce King, Chris Murphy, Daniel Edwards, Xavier Madrigal, Aiden Feria....AWESOME!
We did have plenty of fine folks taking pictures. Please send them our way and we are happy to post on Caring Bridge and/or Facebook. If you are on the Get Well Charlotte Reynolds site on Facebook, feel free to post pics there as well.
Thanks to everyone for showing up. We had such a great crowd and it was so good to see so many kids playing...including the guest of honor, Miss Charlotte herself. She held up really well and we were very happy that she stuck it out as long as she did.
I snuck off midway through the event for some "girl time" with one of my best friends from college (Kelly) in town on Spring Break. We treated ourselves to pedicures and a Girl's Night dinner where we got to catch up and talk about LIFE...
Then her husband Nate, who is quite the chef, treated us all to breakfast this morning: French toast, homemade blackberry syrup, fresh whipped cream, and BACON for the whole family. Charlotte's favorite part? She dipped the bacon in the whipped cream!! That's my girl!
Oh, and I almost forgot the best part: Charlotte pooped last night! Hooray! Hopefully we can keep everything going.
It was so great to feel the positive energy blowing in our direction last night. That's the kind of stuff that energizes me and keeps me going. Thanks again.
As mentioned in a previous post, bracelets are in at Romp n' Roll and some of you who paid earlier may stop by any time we are open to pick them up.
There is another fundraising dinner coming soon (April 25th) in Charlotte's honor out in Sandston and I will post the details on that soon. It is a $10 a plate all-you-can-eat feast. We will probably be selling tickets for that at Romp n' Roll as well.
Hope everyone has a great weekend and a Happy EAster. More posts later...Gotta go get ready for a Super Birthday Bash!

Thursday, April 9, 2009

It's been a good day for the most part.

It's been a good day for the most part.
Camp was AWESOME at Romp n' Roll today. We had a great crowd of kids and a lot of fun was had by all. Then I got to have lunch with 2 of my girlfriends at a park in Church Hill (more Christophers...YUM).
Charlotte slept a LOT last night, going to bed before 9 and then getting up after 9 the next morning. The medications are STILL an issue and we ran into an even bigger issue after the new strategy (sneaking the medicine into chocolate milk) completely backfired. She tasted it right away and was very upset at the nurse who told her "there isn't any medicine in it". We did get her outside a bit on this BEAUTIFUL day. She is getting the last bit of her chemo tonight and we should be getting loaded up with fluids and will go home sometime tomorrow. Hopefully earlier rather than later...
Very much looking forward to the Head Shaving party tomorrow. There's been so much good energy behind it and I think that is having a positive effect on my energy and mood. To me, it doesn't matter how much money is raised (but I am EXTREMELY grateful and excited by everyone's efforts. It will REALLY help us a lot). The most important part of it all is an opportunity to show some "solidarity" for my favorite little bald chick and have a chance to play, laugh, and socialize.
We are playing a Charlotte "appearance" as a wait-and-see depending on many factors. I would love for her to be there but we don't want to overdo things.
I keep thinking that I have something else to say but it's not coming to me right now so I will just sign off...Charlotte is watching a Best of Elmo video and it is great. Lots of vignettes with Elmo appearances on Sesame Street including making Angry Faces with a very young Julia Roberts and talking with Whoopi Goldberg about her "fancy hair" (dreads). Too cute!

Update from Roger:
Well, while Rachel was having her great day at camp, I was having a ball doing Romp n' Roll To Go at Primrose at Atlee Commons. Got yet another new sign-up today (I think it's up to 13 now) so I guess word's getting out. Very cool. I got a very rough estimate about how much their Spring Fling raised. The initial estimate is approximately $2000, about half of which will be going to A.S.K. in Charlotte's name! Awsome folks, thanks!
Now, it's been a while since I've posted, mostly because Rachel has been on it and doing a great job but also a little bit because I got us in trouble with risk management for saying too much secret stuff. Rachel got the lecture from the suits which is very funny (funny - strange, not funny - haha) in a way (not to her) because she could have given them the lecture on how to do their job, not the other way around. Sorry I made you endure that, dear.
I also think they're mad that I sometimes let it slip that some of their medical staff are a bunch of bone heads who tell bald faced lies to my daughter about medicine in her sippy cup. What was with that?!? They obviously don't realize that she's smarter than most of us put together. Her catching them lying to her was damaging and it's just one more insult adding to her injury with which we'll have to deal. That's the kind of stuff people file lawsuits over.
I'll say again, I'm more than a bit underwhelmed with the quality of care we've received this time around. Some child psychology training might be in order before they work in peds. Thank God for Monica who I guess helped smooth at least some of the mess out. She also has really helped our mental status on more than one occasion. With all my griping, the psych Dept at MCV has proven to be top knotch.
So let's try to be positive: Psych Dept. - Good. Hem/Onc Dept. - Good! Pediatric neurosurgery - GOOD! Monica with the meal cart - Good. Child Life Dept. - GOOD!!! PICU - Good! Med students - pains in the asses but one of them will probably save my life one day - GOOD!!!!!
On to other items. Head shaving party. Can't happen soon enough! Gotta get this stuff off of my head. It's itching constantly and driving me batty. Not to mention it's super way disturbingly silver and grey! :-) I knew the white was pretty prevalent in the beard but didn't think that it would have spread to the head. (There are lyrics to a song in there somewhere).
Extra side note: Someone cleaned the house again (thanks probably Granny, Gramps, and/or Uncle Kolbey) and the floor in the office is kind of slick so my feet keep moving of their own accord. Could be kind of creepy if I hadn't already had a little smackeral of something Kalua-esque (sp?)
To the Montesorri clan, I just tapped a pan of lazagna from the deep freezer and BOY! was it tasty! The freezer and all the food in it has been, hands down, the longest lasting utilitarian gift we've received.
So back to the head shaving party...It's going to be a blast and I'm worried it might be too good. Please be patient if chaos reigns. My clippers and electric razor are ready to take care of your cranial exterior and I'll be on WHAN 1430AM again tomorrow at about 7:30 talking about it. Bob Flannagan might make an appearance as well. Any of you competing for the coveted "Bowl Of Hair Clippings Award" may come by too if you can get yourselves out of bed.
Take care everyone. Have a good Good Friday.

Wednesday, April 8, 2009

Happy Passover Everyone. And a blessed Holy Week.

Let's pick Easter Island time today...
So Happy Passover everyone. And a blessed Holy Week.
And Happy Wednesday because that is the day on which God created LOST!!!
I digress...
Thanks to those who have responded either via the Guestbook or privately with your words of comfort, support, empathy, etc. after my last post. Much appreciated!
All in all, except for the lack of sleep it was a decent and busy day. We had a great visit with Reese and her mom before their visit to the clinic today. Reese was very talkative, happy and a joy to see. Love those Strawberry Tights! THEN we had a great visit from our new friend Cheryl and her daughter Denise. They live in Ashland and we have met through mutual friends. Cheryl is heading up what I think will be a GREAT benefit concert for Brain Tumor Awareness month (MAY) at Ashland Coffee & Tea. Her daughter is a survivor and came to visit Charlotte today. She is almost 16 so Charlotte now has a survivor "buddy" who can tell her all about being in the hospital, share a story or two, and maybe even babysit sometimes. Charlotte was excited to meet her and that was a great addition to our day. It didn't hurt that Charlotte also got a new monkey beanie baby out of the deal.
Also thanks to Cheryl for being a person to lean on. She's been there and is (mostly) on the other side. That's comforting!
MUCH thanks as well to Emily for bringing us lunch today. So good to see her 'cause it's been a while. BIG HUGS! Lunch was wonderful!
Daddy came to visit this morning after picking up our taxes from the accountant and before Romp n' Roll. We had a fun time as always. Between all her visitors, Charlotte also did some painting in the playroom, took a few walks (practicing her princess wave), and watched some videos and read some stories.
We are still struggling with the oral meds. She gets herself so worked up and then proceeds to vomit afterwards. Which basically nullifies the value of the meds. Not to mention losing any valuable nutrition she may have taken in. We're still working on this. Popsicles seemed to work for a while but even with ALL her favorites available (chocolate, cookies, milkshake, m&ms, you name it...) the bribes don't work. Where's a good behavior analyst when you need one? (Oh, yeah, right...that's supposed to be me. Oh well.)
She did poop this evening (hooray for poops) and we are completing Day B tonight so we are still on track for a Friday discharge.
I received word that BRACELETS ARE IN! I will be getting a delivery from Melissa tomorrow and we will work on getting them distributed to those who want them. Yes, there will be some at the party on Friday. Yes, Barclay, you will get as many as you want. And yes, some will go to FLA with my mom after they leave next week.
I guess that's all I have to report. I am going to grab a beer, pop some popcorn (non-microwave of course!) and get ready to get LOST...
Don't even try to call me between 9 and 10 PM. I will NOT answer the phone.

Tuesday, April 7, 2009

An Overall Update

Not much to report. I am hoping no news is good news. If all is going well, Charlotte is on her way to surgery to repair the central line.
An update on the insurance front: Humana sent me a form letter stating they had received our notice of appeal. This is what the State Insurance Commission (the Ombudsman) sent to Humana on our behalf. So the good news is that they have receieved our initial complaint and have responded. I spoke with the Ombudsman yesterday (don't you just LOVE that word???) and he is helping me draft an additional response. We also have a letter from her neurosurgeon and I am in the process of getting one from Dr. Khan. He has been "out" this week so that is taking some work. The insurance commission has great experience with these situations and have been wonderfully patient throughout this process. It's amazing how responsive insurance companies get when they are involved!!
A big thank you to (Virginia) Senator Ryan McDougle's office as well. They have been following Charlotte's story thanks to a letter sent by my mom on our behalf and have also contacted Humana on our behalf. Hopefully because of all this "response" Humana will have no choice but to act in Charlotte's best interest.
In national news, I received form letters from Senator Warner and Rep. Cantor's offices. Our good friends Lee and Susan Chambers actually received a PERSONAL response from Senator Warner's office regarding our situation but I haven't heard the result of that yet.
I truly believe in the power of our government to work for the people. We live in such a diverse nation and it is so difficult to make a system that works for everyone, but it is amazing to me how responsive our leaders CAN be when given the opportunity. In the words of Forrest Gump, "That's just about all I have to say about that..."
Signing off,

Now we have LOTS of news...
The central line surgery went well although it took much longer than expected and they gave Granny the royal run-around because a "parent was not present" (sorry and dad have to do something to make a living). They were VERY aware that we would not be there and I had consented to everything ahead of time, but in true hospital fashion, one hand doesn't always seem to know what the other is doing.
Her central line is now in and installed in a new place (in the center of her chest) which we hope will be a better placement. She has been eating all afternoon and seems to be in a good mood. At the moment she is in Caillou Land. She's been quite the couch potato today but that's ok. I guess we'll go for a walk later.
As of 3 PM this afternoon, we have started Day A of her chemo since her methotrexate level has dropped so with fingers crossed and hopeful hearts we are aiming for a discharge from the hospital late Thursday or early Friday. Hooray!
My car is now fixed and my stepdad gave me a (very early) birthday present by paying for the repairs (THANKS!). My inspection was due this month too and all seems to be in order so hopefully no more car problems for a while.
I also faxed our insurance grievance off to the Insurance Commission along with Dr. Tye's support letter. We shall see what happens....
That's all of our news for now, I guess.

A Final Update:
Just feeling the urge to write today so I hope folks will understand the multiple updates they are getting in their inbox in the last 24 hours... and pardon what will probably be a bit of a rant/vent on my part but this is my forum...
Charlotte is resting right now. They forgot to bring her dinner (again) but it doesn't seem to matter as she was very happy with popcorn, milkshake, and popsicles. She is looking very gray today (the gray hoodie dress that has currently become her favorite article of clothing probably doesn't help). The dark circles seem to grow by the hour under her eyes and it just breaks my heart. We had to change her dressing where the new line was inserted. It had bled a little and nurse Lauren felt it looked "yucky" (I concurred) and we worried about the possibility of infection. So Charlotte endured one of her least favorite things: the dressing change.
You know, everyone on Facebook lately is listing their "top 5's" (beers, tv shows, movies, celebrity crushes).
Here are Charlotte's Top 5 Crappy Things to Happen to Me:
0. Inserting a Catheter
1. Any kind of needle prick or shot or IV insertion
2. Having my Dressing Changed
3. Taking Docusate (or any other oral medication)
4. Having a doctor or nurse interrupt my TV shows to talk to me or do something to me
I think that about covers it. And here is the saddest part: these things have become a part of her REGULAR life. They are so regular, they are routine to Charlotte, her parents, and others who work with her on a daily basis. They are so routine that my 3 (going on 13) year old daughter is learning medical terms daily. Not just the word itself, but she knows what they MEAN. Man, it sucks.
She should be spending her days playing at school, taking classes at Romp n' Roll, running around the yard, picking out her Easter dress, learning to play soccer....NOT THIS CRAP!!!
Everyone keeps saying, "I don't know how you do it." and I agree. I have no idea. I just go one day at a time. I put one foot in front of the other. I force myself to get out of bed in the morning. Sometimes I cry myself to sleep. Sometimes I cry sitting at traffic lights for no apparent reason. I force myself to go to work, to pay the bills, to make another to-do list, to check off items on my to-do list. Why? What other choice do I have? I can't let my life implode. I can't give up. I have to keep going for Charlotte's sake. And so I do...
And yet, there are days and moments when I am genuinely, truly happy. There are moments when I laugh, smile, find comfort, and experience joy. They seem fewer and far-er between these days. They are also often tinged with that bittersweet taste of a Sadness That Will Not Go Away.
The problem is, how do you react to the words, "How are you doing?" Compared to what? Compared to 5 minutes ago? Last week? Last year? My "new normal" changes so frequently that I'm getting ready to ban the word from my vocabulary.
I try to look on the bright side. And I see it. I see that 6 months from now, we should be free from treatments. We will hopefully be cancer free and into what will become the new routine of less and less frequent doctor visits. I look forward to the day when Charlotte will no longer be a Cancer Patient but a Cancer Survivor. But that bright light is SO far away right now. I can't even plan events in my life a month from now without a "well, we will see" or "perhaps". Because who knows how long the next round of chemo will take? Or when we will end up unexpectedly in the hospital because her blood counts bottom out?
But right now it hurts. My heart hurts. It aches for Charlotte, for Roger, for me. For everyone in our family and our circle of friends who have been upside the this crisis. It hurts for all of Charlotte's peers. Her friends and her playmates who ask daily, "When will Charlotte be better?" Not understanding why a kid their own age isn't well when "sick" usually means 3 or 4 days in bed at home.
I am never one to sensationalize tragedy. Yes, I have my dramatic side but on the whole, I work to minimize drama when it comes to stuff like this. The "person-first language" person in me says that she is NOT a victim. She is NOT suffering from Cancer. We are not "those people" that you see on the TV news (or from whose stories they make Lifetime movies). And yet here we are.
How did we get here? Unless you've been here (and some of you, my dear readers, have been here. Or you are HERE RIGHT NOW. Having your own tragic experience. And for that I am both enormously sorry and simultaneously enormously grateful for the empathy, advice, and comfort which you have poured in my general direction). BUT unless you've been here, it is virtually impossible to describe. My life had been touched by sadness and tragedy before. I had definitely felt pain in my three decades on this planet. But this one takes the cake. It's almost indescribable.
Yes, for everything there is a reason. For everything there is a purpose under Heaven. That which has come before has prepared me to be the person I am today: to face this crisis...this SITUATION as best I can. And someday....years from now...I will look back and say THIS was the reason why Charlotte had Cancer. Sometimes that is still not comforting.
So I think my time to vent is up. I must rest, must do payroll, must end this post before it becomes the NEVER ENDING STORY.
Thanks for listening. Thanks for letting me vent. Thanks for smiling at me every day and asking about my daughter. Thanks for planning fundraisers and parties in her honor. Thanks for gifts of toys, time, money, Starbucks Cards, handmade angels, and understanding. Thanks for bringing your kids to play at Romp n' Roll (bring more! :-)) Thanks for making connections that get us in touch with the Insurance Commissioner. Thanks for praying, for sending positive vibes, for sharing our story. Thanks for crying. Thanks for making me laugh. Thanks for cleaning my house, doing my laundry, cooking meals, feeding the cats. Thanks for organizing my pantry, raking the leaves, planting new plants. Thanks for stepping in to plan conferences and take over school contracts. Thanks for Easter baskets and homemade cookies. Thanks for all the things I haven't the energy to say thank you for. Thanks for tolerating my horrible grammar in this post.
Tout Finis!

Monday, April 6, 2009

Parents Have to Be Advocates for Their Children

Just about 4am (as you can read intelligent CJ lover) and we just had an interesting experience. It's also reason #42 why parents have to be advocates for their children.
Because the central line pulled out, they had to put a traditional IV line in her hand-not a lot of fun. When I got here everyone informed me they would have to poke her again to draw blood for her labs and, of course, they couldn't do it at any kind of sane hour, NOOOOOOOOOOOOOOOO!!! They have to do it at 3am because that's when they have to check her numbers.
I settle in at around 11pm to see what kind of sleep I can get from this very noisy room and slightly lopsided chair knowing what's coming at 3.
Now being the kind of guy who gets a little freaked out about oversleeping when there's an early wake-ups time, I was up just about every hour until 3 when, as usual, nothing happened. (Hospital standard time). The nurse came in to do vitals and in the back of my mind, I was actually hoping they had decided to wait. No luck. On her way out the door after the vitals check, she warned me it would be about 10 minutes.
It was more like 7. Which is good because it didn't give me the chance to fall back asleep.
in comes the nurse and another woman, presumedly (sp?) to hold Charlotte down. Of course, that's my unpleasant jorb. (yes I said, "jorb." That's the next trivia challenge...) Turns out the other woman was the one doing the actual poking. That, believe it or not, made me feel better as the night nurse, nice as she is, doesn't seem all that secure doing procedures above and beyond taking vitals and hooking up drugs to the pumps. The other nurse, Mary, came down from the PICU and we all know how highly trained they are down there. She said she gets called out to do draws all the time because it's so difficult to access little veins.
I at least feel like CJ is in capable hands. I get on the bed next to her and shield her eyes as they lights go on and the "big rubber band" gets tied onto her other arm, which she doesn't like and lets us know. I mentioned out loud that they should have some kind of topical cream that would numb the pain right at the site. (There's a really bad movie in there somewhere with Phil Hartman and Sinbad involving liquid novacaine and mistaken idenity.) Can anyone tell me why they don't use it in hospitals for little pokes and things like that?
I'm thinking, "This is REALLY going to suck. I'm getting ready to help them inflict more pain on my baby and she'll be wide awake screaming and I'm never going to get a shower." (Yeah, selfish, I know)
Then I remember something the night nurse mentioned, totally in passing just after Rachel left, about pulling blood from the IV line and how she was scared to try it because it might pull out the IV which would be far more tramatic for Charlotte. Almost in desperation, I said, "So there's no way you can do this through the IV line?" Nurse Mary from the PICU looked up like the lightbulb went off and said something like, "Hey, let's try that."
Bless her and all her progeny from here to the mext millenium. It worked and all CJ had was some minor discomfort from the "big rubber band." She was out again in about a minute, and I'm not exaggerating.
Of course, I'm wide awake and about to get my wonderful shower.
So let that be a lesson to you. Ask those "dumb" questions and be the obnoxious, persistant parent.
In my hyper emotional state, I think "Mary" just made it to the list of potential names for future children/pets behind Tye, Joanne, Kahn (only as a Trekkie pseudonym), Melissa, etc...(about 10 others)
Speaking of that, we forgot to mention that Charlotte went by the PICU for a walk and just happened the see Nurse Melissa and another nurse, whose name I'm ashamed to say I've forgotten, near the front doors. They certainly remembered her and came out to fawn (faun?) all over her. She didn't mind.
After having Leah's death weighing pretty heavily on me for most of the evening, we had a sliver of a good thing happen. It's all we can ask for, right?
The spring fling at Primrose went smashingly and a good chunk of money was raised for A.S.K. in CJ's name. Thanks to all there including the teenage volunteers and especially to Karen Giles who allowed me to leave and go perform with John Robison from Southern Horizon at the Confederate Heritage Days celebration down at the Old Chester Courthouse. (There's some irony in there somewhere)
An aside: Although I really love playing the music and I'm becoming a student of the history behind the "War of Northern Aggression," I think some folks need to realize that the Civil War is over. I used to think that sort of thing was just reserved for geeks like me who got caught up in the Renaissance Faire mentality. (Man, I loved those days!)
Hey, did I mention we're having a head shaving party Friday?!? :-) The golf tourny and other various fun-raisers are being planned and I'm blissfully unaware of most of the details. Just point and tell me to go, I'll be there. You'll probably know about it before I do.
Wesley Berry's family (who we met here) is having a golf tournament Friday April 17 up Cameron Hills Golf Links in King George County. Romp n' Roll is going to sponsor a hole and donate some prizes. Here's the link to a story about him:
Go play a round for us.
It's now 5:00am and I still haven't showered. Here I go.

A Quick Update before going home for the day:
It was a great day at Romp n' Roll and Roger and I have been busy all day. Roger is now up in Caroline County launching our Adventure Classes at Ms. Alisons!
Charlotte is doing ok from what I understand. We FINALLY got a call from the surgeons asking for permission to re-insert her Central Line and that will happen first thing tomorrow morning. I don't have news on her methotrexate levels but I understand she was peeing like a racehorse today and eating well. Not sure if she's pooped.
Thanks to the Masseys for visiting with Easter Baskets. Riley's second grade class actually made baskets for all the kids on the floor and delivered them to Child Life today. What a sweet gift!
Now it's time for me to call gramps and get picked up from work. Did I mention that the alternator in my car died? More joy to the world.
On a positive note, I spent the morning running errands and got to listen to my This American Life podcast which was full of fabulous stories (as always). And through the rain I got to see a pretty cool rainbow while trekking down I-295. Plus I got to hang out with some pretty cool kids at Romp n' Roll today! At least I can find some joy in the day.
Time to sign chariot awaits.

Sunday, April 5, 2009

It has Been an Up and Down Day

It has been an up and down day. She slept fairly well and we spent most of the morning watching DVDs, reading books, and making our "rounds" both inside the hospital and out on the play deck. Taking the morning meds (oral) was still a battle. No pooping yet but I have heard a few toots.
Our best part of the day came around 3 PM when Charlotte got a special visitor: ELMO! One of our Romp n' Roll families (the Murphys) have an Elmo costume leftover from their daughter's birthday party and they stopped by to visit with an Elmo balloon as well (pics to follow). Charlotte seemed to enjoy Elmo's antics although she was a little reticent about hugs. She did talk to Elmo a lot about all his Sesame Street friends as well as her friend Dora. Then Elmo even got to visit with a few other kids on the unit. Thanks so much to the Murphy family! You really brightened her day...
Then we went to "Sunday School" and Charlotte made a butterfly, got a puzzle, and heard a few stories. The event was enjoyable enough but I just had to laugh at the concept of trying to share heaven/hell theology with a bunch of preschoolers. We were treated to a good ol' Bible tract and the concept that "There are only two places to go when you die: Heaven or to live in the fiery pit". [This is LITERALLY what the woman said to these kids]. I don't think Charlotte or any of the other kids (all but one were under the age of 5) really got that... The person sharing the experience was nice enough but as she was telling Bible stories, she kept saying things like, "Remember the time that Jesus was crucified and all the priests in the temple were against him?" Her "verbage" was not really for the pre-K set and I found it amusing that she would even consider the fact that these kids would "remember' theses stories, let alone have heard them before.
Anyway, I digress. Charlotte had a good enough time and that's all that matters...
At the moment I am trying to wipe "sauce" off of the cheese and bread that makes up the pizza. Apparently the cheese and bread are good; just not the sauce in between. And then when I wipe off the sauce it's "too soggy". We really need a grilled cheese option on the culinary menu (sadly there is none).
So here is the really bad news of the day: we were returning from Sunday School and had just stopped at the nurses station since her line was beeping and she needed a new flush of Leucovorin. Her nurse checked the line and sent us on our way. I got us back to the room, proceeded to lift her out of the stroller, and her line went in the other direction. Yes, Ladies and Gentlemen, her Central Line literally fell OUT of her chest!
Fortunately, I didn't panic and Charlotte hardly reacted at all. I asked her if her chest hurt and she said "not anymore". I called the nurses and they all came in and looked at it...shocked, to say the least. Also on a good note, it didn't bleed as some central lines do when they are "unplugged". My personal theory is that her body has rejected the line (rather than accepting it and forming scar tissue on the inside to hold it in) and it just kinda pushed itself out. That would explain the lack of blood.
So the ped on call said that we probably can't get surgery done to repair the line until tomorrow (apparently surgeons ascribe to the don't-work-on-Sunday motto that Chick-Fil-A and Ukrops ascribes to as well...except in cases of extreme emergency...which this isn't). BUT we have to keep fluids pumping through her to flush the methotrexate AND she still has to get some of the Leucovorin SOOOOO....the nurses had the extreme pleasure of putting an IV in her left arm. Plus we will need to get blood draws at 3 AM to check all her levels. More fun. It was not a pleasant experience but the nurses were (of course) awesome and got her IV in on the first stick. Hallelujah.
Just another bump in the road. But it still sucks.
I feel like lately, all the "little" bumps in the road are magnified. When you're driving down the road in a 2009 Cadillac Escalade (Hybrid, of course), it's smooth sailing and even if you hit a pothole, you can keep cruising along OK. But we're riding in a beat-up 1978 Chevy Nova with a rebuilt transmission, 200K miles, and we're barely passing inspection. We feel EVERY little bump in the road and we're on a cross country trip. So lately even the littlest thing (something that in the grand scheme of things is probably not that important and certainly not high priority) can upset me and ruin my day/week/month/life.
Charlotte has developed a few "odd" behaviors and sayings in the last few days. One is that she now LOVES the lemon cleaning wipe that comes with the silverware on every food tray. She has to clean her hands and face after every meal with it. The other is that she has said a few things like, "Kittens don't die" when looking at a picture of kittens. When I ask her about it she expands, "Kittens don't die because they're babies." Not sure where this stream of logic comes from or why she's suddenly obsessed with it butI find it fascinating. She really has such an interesting perspective on the world.
So daddy is on his way here and I'm very happy to give up the reins for the evening. Please pray for a quick fix to this central line mess as well as a quick flushing of this methotrexate from her system so we can get on with the rest of the chemo.

Update from Roger:
Please join me in wishing strength to the Porterfield family as they mourn the passing of their little girl, Leah. We met them the second time we came to the hospital. Leah was admitted after they were involved in a car accident.
I'm not sure if you can view their website but here's a link...
Love to all,

Saturday, April 4, 2009

A Lot of "Hurry Up and Wait"

Charlotte had a pretty good day yesterday. In typical hospital fashion, it was a lot of "hurry up and wait". We got to the clinic early and got that "nasty catheter" removed. She immediately seemed to feel better. After some lab draws it was off to radiology. She again went easily into the MRI. It was kind of weird for me this time as it was the first time she had an MRI when she was not admitted to the hospital. We were taken to the heart catheterization recovery area which is where they bring everyone who is coming out of anesthesia, etc. from procedures. Anyway, the nurse said the she did very well and sang Frosty the Snowman as she went to sleep. Some of the nurses mentioned that kids frequently wake up grumpy after anesthesia but another nurse said, "No, when they go to sleep easily and peacefully, they wake up peacefully. And Charlotte went down peacefully". Sure enough, when she finally DID wake up (it took a while) she awoke with a smile on her face.
Dr. Tye and Joanne came down almost immediately to read her scan and as Roger mentioned, it did look good. Not a lot of shrinkage but no growth either so that is good. Dr. Khan looked at it later and concurred.
While Charlotte rested, I went down to Christopher's Cart and got chicken and tuna salad lunches for me and mom. If you've never checked out Christopher's while at MCV, you are missing out. Relatively healthy, very yummy, and affordable. And it sure beats the crowds in the cafeteria. Highly recommend.
After Charlotte woke up, it was back to the clinic to wait for a bed on the 7th floor. It took a while, apparently because Peds was very busy yesterday. Charlotte even ended up on 7 Central (the "big kids" area) instead of 7 East because of the crowd. So we have a new set of nurses to get to know but many of the faces are still the same. Had to go through all the requisite processes of getting settled (forms, getting water/juice/etc., finding a remote control that works for the TV...all the fun stuff!). They FINALLY started her on IV fluids about 6:30 PM (apparently they had trouble locating a free IV pump and cart) and I left the hospital around 7 PM. She was excited about her slumber party with granny. Chemo should have officially started sometime after midnight.
She really was in quite the good mood yesterday. Everywhere we went, people smiled and waved at her and she almost always waved back and even engaged many folks in conversation. I think maybe she wrote the book on "How to Win Friends and Influence People". She has never met a stranger and can charm the socks off anyone!
Roger and I got a date at Casa Grande last night. First time I had been in there in a long time where I had to wait for a table. That place was hoppin'! Now it's off to a full day at Romp n' Roll and my turn at the hospital this evening.
Hope everyone enjoys their spring weekend.

Update from Rachel:
A full day of work for Roger and Rachel and a full day of fun (mostly) for Charlotte. According to Granny, she slept well and has received the methotrexate. Plus all the regular meds for keeping the poop moving, keeping the nausea at bay, etc. Her day has been spent with lots of her regular activities including walks through the halls, visits with nurses who took care of her on other units, and videos and coloring. She was very happy to see mommy and daddy and I think Granny was ready to go home to her bed and a nice dinner (thanks again, Granny!!!).
Now we are getting a little family time before it's mommy's turn to take the night shift. Not much news to report. We are definitely feeling "at home" here at MCV and that is probably not such a good thing...except that it makes the whole experience a little bit easier, I guess.
Hope everyone is enjoying this glorious weekend. We certainly saw lots of yard sales and other events going on today!

Final Update:
She's finally asleep. She was rather whiny all evening but had one good walk around the unit. We found out that her sugar was slightly elevated which may have contributed a bit to her jittery/agitated behavior. I guess they will adjust that through her IV bag (i.e. the amount of sugar in the fluids). [Actually, as I'm typing this, nurse Katie just came in to say that her sugar is down again but still not "normal" so they are going to give her a bag with 1/2 the sugar content...]
Any oral meds take so much prompting and prodding and bribing. It's exhausting. Even chocolate is not a surefire bribe these days. Then when we tried to bribe her with one of her favorites (Tylenol meltaways) we found out that we had to get the little bottle of tylenol and all its contents approved by the doctor and they have to keep it at the nurse's station. Just a CYA move on the hospital's part because insane people often bring other (unapproved) meds in medicine bottles and then try to give them to their kids. We did finally get the Senna into her chased with a tylenol meltaway and chocolate milk. Then more drama when they had to put the bag over her "area" to catch urine for a sample. Of course, there was the "it's a catheter" terror despite our protests that it was just a bag with NO needles and NO catheter.
This, to me, is the saddest part of this process. My child who until this point took all kinds of medicine with no question and never feared ANYTHING (possibly to a fault) is now fearful of every procedure being done to her and wants full explanations of what, when, where, and why everything will happen. And even with that there is still fear. It is so sad because this disease (and the process of curing it) has changed my child and as many of you know, any kind of change is a grieved breaks my heart.
In the past 24 hours, she has developed more dark circles under her eyes. More and more she looks like "the kid who has cancer". She's still cute as ever. Don't get me wrong. Hands down she's the most beautiful kid on the 7th floor tonight and she could still win beauty contests anywhere she goes with that winning smile and personality. But it is still sad.
Roger was more than frustrated today with many things (namely ME). I'm sure he will give his own recount of the day's events including his forays into the world of the Confederacy but I'll use this forum to give my own public apology for making life difficult (I'm trying....) and hope he has a better day tomorrow. At least he gets to work a birthday party for one of our favorite families (the Cadienas!)
Well, while she sleeps I need to try and mom was right. This unit is much noisier than 7 East. Not really sure why but sound just seems to carry differently and I think they use the intercom more. Hopefully it won't be too bad tonight.