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!

Rachel

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.

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...
Rachel

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???

Rachel

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. Fatskippy.com (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

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.

WHEW!

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.

Rachel

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!

Rachel