Tuesday, March 31, 2009

Charlotte is Having the Best Week!

Darn that Adam Sandler!!!
Been a while since the last update. Charlotte is just having the best week. She's walking a lot including multiple trips down to the end of the block and meet-ups with neighbors, eating like there's no tomorrow, talking up a storm, and even using the potty once in a while. It's these kinds of great days that actually make it hard on us when we think of the week to come.
The stress has manifested itself in different ways for Mommy and Daddy. I'll let Rachel tell you her experience in her own words but for me, it came to a head while doing a little work from home on the computer.
I was sitting in the living room, sending emails, making calls, etc...and had the TV on in the background. The movie, "50 First Dates" came on with Adam Sandler and Drew Barrymore.
I LOVE that movie and I was alternating between getting things done and watching the movie. I was really enjoying it until the part came on where she goes to the doctor (played by Dan Akroyd) and they look at all the brain scans to see where her brain damage occured. Between seeing the scans on the wall and weirdly identifying with the dad (actually the whole group of friends and family) who was trying to protect her, I guess something just sort of let loose and I lost it for about a minute. Not something that normally happens.
It could actually have been related to something else since I was feeling kind of "icky" later on in the evening and have only gotten a little better today. I think I have been on the low end of some kind of a cycle and everything has suffered a little. Who knows, I could just be full of crap.
At least I got some new pics up. I'll try to get more going soon.
We still need a volunteer to hang out at the Primrose Spring Fling this weekend (Sat). No setting up or tearing down. Just refereeing the kids so they don't bleed all over each other. Please give us a call if you're available.
We could also still use megaphones of various kinds and scrap PVC pipe for Rompy's Band classes.
Congrats to all who ran the Monument Ave 10K last weekend. I honked at you all each time I drove under the bridge on I-195 as I prepared to go to West Virginia. Good luck to those running the RR Ave 10K this weekend in Ashland. Wish I could join you. Need to run off some steam.

Update from Rachel
Yes, I have been amiss in my posting as of late. For those of you who have seen my Facebook status, you might understand...basically, I have been extremely moody the last week or so. Very stressed to say the least. Yes, I know that it is "understandable" but it doesn't make it any easier. And it doesn't make the problems go away. The Charlotte stress is hard enough but work stress and other life stressors keep getting in the way too. It's a lot of balls to keep in the air and I am not a good juggler. This is proving to be a very long and very difficult marathon and I feel like we haven't even gotten through the 10K yet.
This last week, as Roger mentioned, has been alternately positive and negative. It is so great to see Charlotte's progress. She is taking stairs better, getting around really well, eating well, pooping well, full of energy and zip...everything just couldn't be better. And yet the dark cloud of doom that is the next round of chemo keeps looming over our heads. Not looking forward to the catheter going in on Thursday and not looking forward to the marathon hospital stay starting on Friday.
I am extremely grateful to my parents for being here right now. They have been so helpful and Charlotte enjoys spending time with them. It does make it somewhat easier to handle everything else.
I thought I might have more to say but I guess I don't...I'll sign off and hope Charlotte will get a good night's sleep...

Saturday, March 28, 2009

New Caring Bridge Page

There are updates to this site as you may have noticed. Some great features include:
o We can now put over 50 pics on the photo section (before we were limited to 12)
o The links section has been changed to RESOURCES and has more flexibility. Our Care Calendar, bracelets, and other information have been updated there (it disappeared for a while).
o We get to see some pretty interesting stats about our website and we can also track the other Caring Bridge sites that we are following regularly too!
Anyway, on that note, I thought you would be interested to know that the 61K+ hits that our site has generated is the result of over 630 unique visitors! Just goes to prove that 1) Charlotte has a lot of fans and 2) You folks are repeat offenders (if not addicts!). Thanks again for your continuing support.
I haven't written in a few days but Roger has kept you updated. Yes, I am sporting my new haircut. For those of you who know me well, you know that my hairstyle seems to change with the season. Until Thursday, my hair was the longest it had been since before Charlotte had been born (after which I proceeded to go much shorter and then gradually grow it out again). Anyway, while I am not brave enough to shave my head, this was the next best thing, I guess. I'm getting used to VERY short hair again but I think I like it. Charlotte seemed to like it too as she gave me a big smile when I came back from the haircut. I even brought home some hair "for the birds" from the hairdresser's. So a quick shout-out to Karin at Diva's for always helping me look as beautiful as I can possibly look! She's been cutting my hair for over 5 years and she's great!
Roger is out in WV as we speak and playing a Civil War Ball with Southern Horizon. For those of you that know us, that sentence just doesn't seem bizarre, does it?
Charlotte had a fabulous day with a playdate with her friend Abby from church that included lunch and lots of kid time. I understand from my mom that she has had a wonderful appetite all day and stayed VERY busy. She finally conked out around 8:30.
I have been very on the fence about trying to get her in for PT/OT next week. First of all, it's very difficult for them to try to get us "in" as Children's stays very busy with their clinic but I also feel like she has just been doing so well. We tried to get her back into therapy the week we ended up back in the hospital and it was oh-so-frustrating to have that setback. Anyway, I have decided that maybe we will just enjoy this upsurge and let Charlotte rest and rejuvenate as much as possible before Thursday/Friday's craziness.
As many of you know, my parents are now here and oh is life so much easier again! It just allows Roger and I to focus our efforts on work and not have to worry quite as much about Charlotte (As evidenced by what will be almost 20 hrs of work at Romp n' Roll on my part over this weekend alone!). This is the first opportunity they have had to see Charlotte since her diagnosis (she had seen them in Florida just prior to her first hospitalization) so I think the Mutual Admiration Society is very much in effect on Slash Ct.
Many of you have inquired about further details for the Head Shaving party on April 10th. Plans are definitely still in the works but we have to hash out some final details. My guess is that timing will be late afternoon/early evening to accomodate work schedules, etc. Jackie, our fun-raising guru will hopefully meet with us in the next few days and give us some solid news...we appreciate your patience as well as everyone's willingness to help and support!
The piano-moving may move (HA) to after Easter due to logistics with schedules. We will let you know when we have a different date.
FINALLY, I want to give a shout-out to Melissa, Katherine, Liz, Miriam, Amanda, Anna, Kim, Bruce, and about 50 other people who I am forgetting to mention by name: These wonderful women (and even a few men) just spent the last few days organizing and running the Mid-Atlantic Regional Music Therapy Conference in Richmond. This has been a labor of love (I'll use that term a little loosely!) on the part of the members of the Virginia Music Therapy Association for over a year and a half. Melissa and I had been local co-chairs of the event and had been in the middle of LOTS of planning, budgeting, and all kinds of other craziness when this speed bump hit our lives. One of my first calls was to Melissa (mainly because she works at MCV and I knew she would find out sooner or later that we were there) and her first directive to me was to STOP worrying about the conference. Anyway, the rest of the team rallied around Melissa and from what I understand, the conference was a giant success. I was sad to have missed it all and I owe everyone on the local committee a drink (or 3). I owe Melissa a whole KEG! Thank you from the bottom of my heart for everything that you ALL have done!
Ok, I have written enough of a novella for one evening so I promise to sign off! Let's pray for some sunshine, eh?

Friday, March 27, 2009

March 27th, Dad's Birthday

OK, so I'm doomed to lose at least one post per week. Let's try it again.
It's March 27th. Dad's Birthday. Happy Birthday! CJ has a little something coming to you in the mail.
I was saying that every good day that Charlotte has is such a gift. I have really come to appreciate every day as it comes especially knowing what's coming up next week.
Today she took a couple walks with the grandparents before the rain moved in and then ran up and down the hallway at Uncle Koldey's house like a wild child.
In a great example of just what we're willing to do for our little princess, at dinner tonight, Charlotte was shoveling in dinner and came up to the broccoli and cheddar on her plate. She wanted to eat the broccoli but not the cheese. So Gramps gathered up all the broccoli, rinsed it off and delivered it back for her to eat, which she did. And not only did he rinse off the broccoli, he did it twice.
For those who were wondering, the Youtube videos of the Uptown Vocal Jazz Quartet are back up and now all 6 are there. Here's the link to the search page:
Please remember Megan Blake as you send out the positive vibes. She had her second round of chemo this week. Katie came to RNR and was her usual adorable self.
Off to West Virginia tomorrow for a date with Southern Horizon. Taking the new guitar. Thanks Aunt B and Uncle Not-So-Hairy.
Gramps is already doing yard work so for those wanting to help with that, you'd better get over here and tie him down or there won't be anything left to do. Good thing it's raining. :-)

Thursday, March 26, 2009

Another Good Day Overall

Hi everyone,
Another good day overall. Charlotte has been having some very good days lately and we've been enjoying them profusely. Rachel got her hair chopped big time! Looks good. I'll let her fill in any details from today but the big thing is that the 'rents are here. Granny and Gramps arrived safely at around 2:00pm. I heard CJ shared waffles and other food items with Gramps. That's their thing.
Got some dates for you all.
March 27th-Grandpa's B-day!
March 28th-Uncle Tommy's B-day and the Community Appreciation Day up at Miss Alyson's Countryside Childcare up in Ladysmith. Romp n' Roll donated something to the silent auction. If you're up that way, stop in and say hello.
April 4th-Primrose School in Atlee Commons Spring Fling 10am-1pm. They're raising money for A.S.K. in Charlotte's name. We (Romp n' Roll/Virginia Canter) are supposed to provide a play area inside the school but I can't be there the whole time so I need someone there to referee kids, hand out literature, and be an overall Romp n' Roll cheerleader. I can set it up and then come back afterwards to tear it all down and Rachel can be there around 11:30.
As usual, any help is appreciated.
As far as fun-raisers go, hold Wednesday, May 6. Glen Allen Golf (about a mile or so north of us on US- 1) just agreed to have a "spirit night" for Charlotte from 7-10pm. There will be many ways to participate. A portion of sales for the night will be donated to the cause. Here are some of the costs/donation amounts:
Adult Mini Golf $7/$2 donation.
Child Mini Golf $5.50/$1 donation.
Large Bucket of Range Balls $11/$3 donation.
Batting Cage 6 tokens $8/$2 donation.
There will be a longest drive contest and "closest-to-the-pin" contest
Dean from Glen Allen Golf is also donating some very nice things as door prizes for the head shaving party on April 10th so make sure you go in and thank him. Don't necessarily grovel at his feet like I did but make sure he knows you're grateful.
May 9 is the Chick-fil-a Cow Drop at the Hanover Airpark. We'll have a booth but as is becoming more and more the case, I have a gig that day way out of town (at the Mainstay Theater in Rock Hall, Maryland) so I won't be able to stay for long. That was a very fun day last year.
OK, I think I have most everything here. One never knows and maybe Rachel will insert anything I've missed.
Time for bed.

Wednesday, March 25, 2009

Andther Good (and Busy) Day

Another good (and busy) day. Daddy and Charlotte were off to the Doctor as I went to work. It took longer than expected (what a surprise) but:
0. Her levels are all great, some even at "normal" levels
1. They decided to give another dose of Vincristine so she got her "Day 15"/"Day 8" anyway (a week late).
2. They agreed to send a copy of her protocol to the 7th floor (peds unit) for her chart there to avoid any further confusion (don't ask me why this already had not been done).
3. She will be back again next Thursday for a catheter insertion (oh joy) for another 24 hour urine collection.
4. Next Friday we start all over again with an early morning MRI and then admission to the clinic/7th floor.
Her afternoon also included a trip to Chick-Fil-A and some playtime at Romp n' Roll. Now it's Yo Gabba Gabba time ("What's your Talent???") and mommy's gonna see what we can find for dinner.
Did I mention Granny and Gramps arrive tomorrow? Yay! Hoping for a safe and quick trip up the I-95 corridor tonight and tomorrow!
Many of you have mentioned to us that Miss Virginia is currently launching a campaign to raise $500K for children's cancer. If she raises that amount by April 11th, she will be shaving her head! We are doing some "scoping" to see if she could arrange an appearance at Charlotte's party.
Here's the Link if you want to read more about it.

Update #2 for the day:
We have an important errand on the Care Calendar for strong backs and a truck. A dear friend and fellow music therapist has donated their old piano to us (long story) and we just need to get it to our house. They live in Powhatan. SOOO...we need someone with a pickup truck and strong back and another 3 someones with strong backs to meet at our house and then drive to Powhatan to get the piano and transport the piano back to our house. Our friend threw out April 4th as a possible date (a Saturday). Pickup just needs to be completed by 11 AM. If you can help, please sign up via the Care Calendar (see information for this on our LINKS page). Once we have everyone signed up to help, we will put everyone on the team in touch for coordination. THANKS.
Also, our good friend Reese had a wonderful article written about her and her family in the Mechanicsville Local newspaper. Here's a LINK to the article...
Roger and Charlotte saw Reese at the Clinic today and it sounds like she's doing well. You can keep up with her on her Caring Bridge site:

Tuesday, March 24, 2009

Another Great Day! What a Blessing!

Another great day! What a blessing!
She had a great morning while mommy and daddy went off to work. Her day was full of two walks around the neighborhood, watching some of her favorite shows, reading books, and playing a few games with Uncle Kolbey.
Her appetite is 100% better and everything is "regular". Hooray!
Here's hoping the blood levels are good tomorrow.

Monday, March 23, 2009

Such a Good Day (for a change!)

Such a good day (for a change!) Mommy worked in the AM, Daddy worked in the afternoon, and Charlotte had a great day! We spent the day at home with her and we walked to the park, she had some impromptu ''PT" on the stairs, slides, and swings, we visited with Granny Dot, and she was in a very good mood most of the day. I think she wore herself out as well because it's barely 7:30 and I think she's already asleep! All the better for Roger and I to get some quiet time of our own this evening (I'm thinking movie???)
On a more urgent note, we are still in need of someone to watch her tomorrow morning from about 8:30 (ish) to about 1 (ish). We had a few options for childcare and nothing has seemed to pan out. Anyway, if you can help, please call us at home this evening. Most of you know the number. You can email me if for some reason you don't have it...
i'm sure we will get it all figured out. Only 3 more days till Granny and Gramps (and katrina) will be here. YAY!

Quick update: we found someone to watch Charlotte tomorrow so we are all set! Thanks!

We Are Home

Yes, we are home.

Our day yesterday was going great, Charlotte was eating like a pig (and I mean that in the best possible way!) and slowly but surely, the Docs were checking her off the lists, she was getting detached from the various lines and tubes, and the car was packed with everything but us. This was about 12:30pm.

Then the nurse thoughtfully asked if I wanted her to change CJ's central line dressing before we left. At first I thought no because we're getting pretty good at doing it from home, I didn't want to be wasteful since she wasn't due for a few days, and, most importantly, Charlotte didn't want it done at the hospital. She wanted me to do it at home. She was pretty emphatic about it in fact. But then something tugged me back and I changed my mind. I was thinking, "they're professionals, I might learn by watching her do it, and all that.

Well we started the process and Charlotte was fussing and fuming over what was about to happen. She would only let Daddy take off the dressing and as I did, we noticed something odd. Turns out the stitch that held the line in place on the outside had come out. Not sure how and it didn't look like it had torn.

Well, we immediately covered it back up and paged the pediatric surgeon on call. He was up there very quickly and they decided to put in one stitch and order a chest x-ray just to make sure the line hadn't moved too much.

They set her up with a dose of morphine and after a bit, that glassy look took over but once the fireworks started, it was like they had given her chewable aspirin. She was wide awake.

In another example of the doc either seeming to be thinking more about the procedure than the patient or lacking the language skills to say, "here we go. Make sure she doesn't move," he prepared a needle with Lidocane and proceeded to try to inject it into the spot next to the line.

That's when CJ became fully alert again.

She actually rolled into the shot making it go further under the skin and the surprised doc made some kind of "woah" sound and pulled the needle out. Which means he had to stick her again. We were all ready this time and even though she jerked again, he kept the needle in and delivered the dose with Charlotte screaming all the while. I believe the most repeated phrase was, "I don't like that!"

As usual, I was the one holding her hands up and out of the way telling her it had to be done and that nobody liked it but it had to be done because I couldn't fix this at home.

I had to hold her hands the entire time and after a while, she started crying something new that I couldn't understand. Then finally, Nurse Andrea, who is rather boisterous but we love her, translated. "Daddy, you're hurting my hand." I didn't realize how tightly I had been squeezing her hands until then. I had been trying to be strong, cool, and collected for CJ but I got found out. I've said it before, it's hard to hold your baby down while others inflict pain on her. Terrible, actually, and it showed in my hands. (You should see me fly)

By the time the doc got around to the stitching, the skin was numbed and she didn't feel a thing and I wasn't letting her watch. She even complained once that she couldn't see the TV in the middle of it all so I knew her attention had shifted. Don't worry, she was still crying a lot.

Finally the stitch was in and the nurses officially changed the dressing. Unfortunately, the needle sticks made her bleed a little and they couldn't get it completely cleaned up before they put down the cover so we're going to have to change it again in a couple days (right on schedule if I had left without trying to change it in the hospital). Good thing we checked it when we did.

After the hubbub died down and she was resting comfortably again, and as we waited for the x-ray guy to come, she said the most amazing thing. "Daddy, I still like you." That was nice to hear.

Next came the chest x-ray. She didn't like the look of the big machine being wheeled into her room but she had had an x-ray when she checked in so she was easily convinced that it wasn't going to hurt. The tech was pretty good to so it didn't take long at all.

Then it was wait for about an hour for the film to be developed and looked at to make sure the line was still in place. We chilled in her bed and I actually dosed for a bit. Everything had been taken to the car so I didn't have a lot to do. I even told the catering services woman not to worry about lunch because I was sure we'd be gone. Shoulda knowed better. At least we still had leftover pizza.

Thanks to Heather from Child Life who did a masterful job of keeping CJ occupied while I went to get coffee or the little daddy's room.

FINALLY, we got the all clear, I dressed CJ as fast as I could and we were outta there. I was half expecting someone to come chasing after me, "Wait! There's something else!" It was like one of those war movies where the people who the NAZIs have been looking for are passing through the last checkpoint before freedom and everyone is on the edge of their seats wondering if they're going to get caught.

OK, so maybe it wasn't that bad but it did make me think of it.

So after planning to leave the hospital around 1, we didn't get home until just past 6. Made the homecoming that much nicer. Now we turn right around and go back for round two in a week and a half. (One day at a time.)

Charlotte's Devon came by and visited for a while before she has to go back to school. Even with Devon wearing a mask, it was a very good visit.

Charlotte got a bath and we all slept soundly for once. When Rachel and I came down this morning, CJ was waiting for us with a nice full diaper and gave me another one later. BONUS POOPIE!

This morning was very nice, everybody got a little bit done, CJ actually got to see Dora on Nickelodeon, a rare treat.

Now I have to go do a class at Romp n' Roll and load up the car for RNR2Go tomorrow in Ladysmith.

Sunday, March 22, 2009

Update from the Hospital

Good morning again.
Here's something I thought I'd never say: I had a great night's sleep here at the hospital. The recliner chairs they have in these rooms are pretty bad for the back but I used a pillow for a little lumbar support and that seemed to help. Had a dream about being a politician chased by the mob.
Charlotte slept better than I did. She ate so much yesterday that now we need to see some movement from below. I came out of the shower this morning and the room smelled pretty ripe so I thought she had pooped but it must have been just gas. Hopefully it's a precurser.
Mommy came by last night and we had a semblance of family time. Lots of holding each other, staring at Charlotte, talking about Charlotte, catering to Charlotte's every whim. Well almost. She still had to take the medicine.
The hope is still that we will go home today. The Hem/Onc folks have to come by first (about 11) and check her out one more time.
And now for another completely unsolicited review:
Assante's Pizza near downtown Richmond
When the nurses could only find some French bread pizza, which CJ wanted no part of but was very yummy this morning, I was handed a 3-ring binder with lots of restaurant /take-out menus.
I had only one request of any pizza joint: There needs to be lots of crust on the end.
I called Assante's and the guy was pretty honest that they didn't necessarily have a ton of crust on most of their pizzas but the pan pizza was pretty thick. I made him assure me again there was a good amount of crust
and ordered a large cheese pizza delivered.
(note: normally, delivery places have to stop off at the Gateway area of MCV, next to McDonalds, and call up for you to come down and get it.)
Well, the pizza came quick, was still very hot and the service was very good. I took it upstairs and opened it to see what I had ordered. It's very much like a Pizza Hut pan pizza but thicker. Not as much crust around the edges as I'd hoped but it sure smelled and looked good. $11.99+ tax and they have take-out specials that are worth the trip.
After letting it cool down, I gave a small piece to CJ and she made me take off any little bit of sauce and cheese. But once she started nibbling, she was off! she snacked on the pizza all night! Cheese, sauce, and all. It's interesting how her associations work. As sson as she tastes it, she's fine.
So, verdict is...lots of CJ thumbs up.
Dr. Gouda (sp?) just came in and reiterated that we're most probably going home today. Need to start packing.

Saturday, March 21, 2009

What a Difference a Day Makes!

5:27 AM
CJ had a relatively good night. I got here about 9:15-20 after a very full day at RNR (More about that later.), and headed up to the room. I dropped off my "luggage" outside the room because I wanted to walk in with my arms free. When I opened the door, Charlotte was sitting in the chair on Mommy's lap watching, guess what? DORA! What a surprize.
It's rather odd seeing my baby with next to no hair. She's certainly still amazingly beautiful but the look is definately different. I think it's the strands left over that are weird. Once it's all out, it shouldn't be much of an adjustment. I've been ready for it for a while.
After Rachel went home, after promising me she would only take a shower and go to bed (which I think she did), Charlotte and I settled in for the night. I had to rub her back and belly often but she fell asleep much faster than I expected. It didn't hurt that I was actually in the bed with her. A couple of times, I woke up in a slight panic wondering if I had rolled over on her or something (ya know, typical parent stuff) but there she was, snoring away.
She woke up around 3:30am complaining about her back and I rubbed it a bit. She also needed a diaper change so I did that too. Interesting thing is, it got her in what I think is a far more comfortable sleeping position for her: perpendicular to the bed in the crease made when the ends are raised a little. After the diaper change, she sort of settled in to that crease and has been out ever since. Not Daddy, of course! :-) I worked on Rompy's Band. (Tamborines are finally done, Everyone!)
Still no appetite yet. She's eaten a little here and there for Rachel but nothing for me yet.
I think my exhaustion caught up to me today during my mixed ages class. I forgot to sing the welcome/hello song. Instead I went straight to the story bag. Fortunately I did it after that and I think the class forgave me.
Babies class was far worse. I dropped song lyrics left and right, had to grasp for order of things, and generally made a mess of things. Fortunately, it's babies class which is one of my favorite classes to teach so I at least kept the energy up and we all still had a very good time (I think. Not sure. What day is it?)
I had a good lunch and relaxed a little between Babies and the playdate party so I actually felt pretty good the rest of the night.
I have to admit, I think this week has been the hardest one for me (probably for Rachel, too). The unexpected hospital trip kind of blindsided us and I've been frustrated at little (and not so little) imperfections I've been noticing here. One of which is the shower that leaks constantly and sprays everywhere until you get it just right and when the physical plant guy comes by (as he did when Rachel called) he can only say that that's the best it can get and it's fine. No it isn't. The waste of water, energy and money really is pointless and I'll bet the bean counters at the MCV accounting office wouldn't be happy about it.
The absolute biggest thing is the F--- up by someone concerning CJ's medication. I can't imagine why, with the triple redundancy I see happening everywhere, that that sort of thing can happen here. We're all just lucky Charlotte didn't get hurt because of it.
On a very good note, after the conference call yesterday, it looks like the "fun-raising" effort has a serious A-Team in place and there will probably be more than 5 head shavees for April 10th. There's now a golf tournament in the works (I guess). Hope I get to play in it.
Does anyone have experience raffleing off big things like cars or motorcycles? How would one set up something like that?
In other news:
We have multiple pregnant moms at Romp n' Roll who are due in the very near future so we want to send out the best wishes to all of them as they welcome new members to their families and Happy Birthday to Bradley Chang!
Need to steal a few winks before CJ wakes up.

1:02 PM Update
What a difference a day (and a blood transfusion) makes! Charlotte slept very well the rest of the morning and only woke up because of a screaming baby down the hall and slightly obnoxious perople talking loudly in the hallway.
She's been in a very good mood all morning and although she still complains about her back and belly, it's been less. No BM this morning but it's been very loose the last few times so it's not too concerning.
The hair keeps coming out and we have a good little bag full for the birds.
She's eating! Just a little but it's something. This morning she had some Cheerios and Cookie Dough Bites. (Yummmmmm. So did Daddy!) Heather from Child Life came by and kidnapped us to a party being held by some dental college students. They had pizza and Cheetos as well as construction paper and such to make pictures. I did a shamrock and a psychedelic landscape as directed by CJ. She ate about a half a piece of pizza and a Cheeto so compared to the last few days, she's gorging herself!
On top of all that, we got another new Dora that we haven't seen yet.
The Drs. came by and said her numbers keep getting better and better so she'll most likely be going home tomorrow. Then of course we'll turn right around and come back in for the next round of chemo.
I want to reiterate how awsome Heather and her team at Child Life are. They opereate almostly entirely on donations. Here's their website:
Anamazing thing is happening. CJ is asking for "that bread I has having before." Which means pizza crust. There's no pizza left from the party so I've sent the nurses on a mad quest to find something resembling pizza crust. If they can't come up with something, I'll be ordering some pizza here soon. I'd call and ask CiCi's for a pizza but they're a bit far away and they don't normally deliver. They're just being nice to us when they do.
Gotta go find a pizza joint downtown.

Friday, March 20, 2009

An Update

11:11 AM
A quick update while she takes a morning nap...
She slept fairly well over night (as did I, considering the accomodations) and only woke a few times. Quickly went back to sleep. This morning she was pretty grumpy but managed to down some milkshake and a little cereal. Child life brought me coffee (AMEN!) and took her for a fun wagon ride tour of all the wildlife pictures on the unit.
We returned to the room for a Dora Fest and she fell asleep after about 5 episodes...
Most of her levels seems to be coming up as hoped/expected. The one big question right now is that the NP yesterday mentioned "oh, we've put in the order for her vincristine tomorrow" (another chemo drug) but I didn't remember anything in the protocol about her getting drugs in the interim weeks NOR did our regular NP or Dr. Khan say anything about coming back for another dose of chemo this week. So I'm confused. I have asked them to page the docs (Khan is out of town today) and hopefully we will get clarification. My copy of the official protocol is at home (of course). Someone had emailed me a copy but I think I deleted it. So if anyone has one handy, let me know (a few of you know the protocol we are on and are following our story...you know the drill).
I'm not usually one to "question" the docs but at the same time I feel like I stay pretty up on her protocol and this just doesn't sound familiar. I know that they probably double check everything BUT I also know that they deal with a lot of patients with a lot of possibly very similar protocols. Doesn't hurt to check, right? I don't mind getting a reptuation as a "difficult mom".
Lots more hair gone this AM. Noticed a few eyelashes falling out too.
Trying to enjoy a few minutes of peace..
Happy Friday and Happy Spring, everyone!

2:34 PM Update
Well, the update on the Vincristine is that yes, it is indeed part of her protocol to get it on days 8 and 15 of each round. What they couldn't seem to tell me was whether she received it on day 8 (since we were still in the hosptial on day 8) and if not, why she did not receive the day 8 dose. Apparently there is some flexibility within the protocol but I was deeply disturbed by the fact that they neither knew whether or not the day 8 dose had even been given or if not why it had not been noted. As someone who has worked in health care, I am all too familiar with the rigors and requirements of documentation. So needless to say, I made a little "stink" over this discrepancy. The doctor (not Dr. Khan as he is out of town) apologized sincerely and was quite red faced (and stammering a bit) over what she termed "some negligence" on their part. She did, however, proceed to explain that they would administer the Vincristine and count this as her "day 15" for this cycle.
Some of you have asked why she would receive more chemo if her counts are low but there are different requirements for the administration of different chemo drugs and Vincristine is not blood count dependent. It is more poop dependent and since we had poop, we are ok to go with this dose. They are actually giving her 75% of the recommended dose anyway.
We will have to continue to monitor her counts (which seem to keep going up. yay!) and there is definite possibility that the setback this week may delay the start of her next round of chemo. We will have to wait and see, of course. We also currently have our next MRI scheduled for mid-April.
The rest of our day has included a walk (her riding in the wagon), visits from an adorable therapy dog and our neighbor Mr. Fred who brought news of the Ashland Variety Show, many get well cards from his children's choir, and an adorably soft (and HUGE) teddy bear. All of these events have brought smiles to Charlotte's day.
She also just downed a small bag of M&Ms. Hooray for calories!
With any luck we might go home by tomorrow or Sunday.
All for now. Rachel

Thursday, March 19, 2009

We Have Poop!

7:43 AM
Really not much to report...
Charlotte slept fitfully through the night. I didn't sleep much just because these chairs are so gosh-darn uncomfortable. She spiked another temp but it came down pretty easily again. I keep rubbing her belly and she falls back to sleep for periods of time.
She did ask for and drink some chocolate milk last night and she kept it down so they are going to give her more of the Lactalose in about an hour. We will see how that goes. We also took a few walks last night (at her request..yay!).
The peds unit is probably about the quietest I have ever seen it. You can tell that RSV/Flu season is about over. I think there were only 3 kids (including Charlotte) on 7 East last night and Charlotte was our nurse's only patient. I am sure the nurses enjoy days/nights like these as they don't come around too often.
Not much else to say...hoping for a poopy day.

9:26 AM
GOOD NEWS: We have poop! It was a small quantity but this is definite progress.
Bad News: She is officially losing her hair. I noticed some hair missing around her scar area and found lots of hair on her pillow. It's pretty much coming out in clumps. A week to the day since the Vincristine so not too surprising.
We still have more poop to go to get her "cleaned out" so keep up the poopie prayers!!

12:43 PM
The Poopie Prayers May Cease and Desist!
We now have had not only 2 poopie diapers but an explosion (to say the least) of bodily fluids and I will spare the details except to say that it all came out at once from both ends.
After a complete bed change, we are back in bed and relatively happier. Still some abdominal/back pain.
Word on the street is that we can cease and desist with the laxatives but her blood counts are very low so that is the next thing we need to battle. Antibiotics will continue and she should get some more blood soon. Can't really go home until she can keep her fever down, bring up her blood counts, and keep some food down.
Met with the nutritionist and they are looking for foods that we can get her to eat. They may also look at an appetite stimulant but that doesn't always work. We talked about milkshakes and when I mentioned "maybe you can add some extra calories into it" Charlotte said, "No Calories, mommy!". (She thinks the "calories" are a kind of medicine that would go in the shake!) Smart girl knows we sneak medicine into her food and milk sometimes. Anyway, we promised her a chocolate milk shake with "no calories" (wouldn't we all like that!)
We did get a bit of fresh air on the deck today and she picked a flower that she said she wanted to save "for Granny and Gramps". She is getting very excited about their arrival next week (as are we!)
Must go attend to the princess.

9:36 PM
The rest of the day was pretty rough. Her belly pain/back pain comes in fits and spurts. The bowel stuff keeps "moving" although it is more of a liquid consistency (sorry if that's too gross)...
In a good bit of news, she is eating a little bit again. She's had some of the milkshake, some water, a few saltine crackers, and about 1/2 cup of popcorn. And nothing has come "back" yet.
Her counts were still very low and she had a blood transfusion for about 4 hours (I think about 30 ml of blood). They also have her on Lasix (a diuretic) because her BP has been abnormally high all day. Could be due to excess fluid. The body temp has stayed down around normal, though.
The hair has been "shedding" all day. It also got very matted in the back and in true Charlotte fashion, she has not let me comb it. She was complaining about it saying "Mom, there's a bow in my hair. Take it out." When I told her that it was her own hair all tangled up she told me to get rid of it. Long story short, at her request, I have trimmed some of her hair and what is left will be gone shortly so next time you see our dear Charlotte, she will probably either be wearing a hat or definitely look different.
I think I am more upset about this newest part than she is. She just seems annoyed at finding hair everywhere. It's sad to see all those beautiful curls go away. I know that her hair will come back eventually and that it will be "something new" when it does. It's just another part of her that has to change because of this disease and that's what stinks. At least those beautiful big brown eyes aren't going anywhere. Monica told her today about how some birds use hair to build their nests and told her how she could take some of her hair and put it in the backyard for the birds. I asked her if she wanted to do that and she said yes. So we will be saving as much hair as we can and taking it to our backyard "for the birds" (or the squirrels as the case may be in our neighborhood).
We will see what tomorrow brings. I'm hoping for a Saturday homecoming...
A big thanks to my darling husband for holding down the RnR fort today. I know he had a long day. Thanks to Miguel as well for his carpentry skills!!

Wednesday, March 18, 2009

Update from MCV

11:22 AM
I don't have a whole lot to report but I know folks will want an update. When I last spoke with Roger this morning, she was still running a fever (kept down as long as she has Tylenol) and had still not passed any stool. They are holding off on the enema as long as possible because if it causes a tear in her intestines, it will make her very vulnerable to infection, especially since her platelets are so low. I think they are looking at another blood transfusion as well. She had a pretty rough night and keeps sleeping very fitfully. Lots of belly pain. Poor thing!
I'm headed to the hospital now and will relieve Roger.
Thanks to everyone for the words of comfort and thoughts. We'll try to keep you updated.

6:23 PM
No positive progress to report.
She is still trying to "push" that poop through. Unfortunately, anything that they have tried has really not worked. They are trying to give her a very strong laxative (stronger than miralax..I think it's called lactalose or something like that) but the last 2-3 doses they have given her have just come back the way they went in. This is probably because she is so "backed up". Very frustrating. I have heard a few toots and smelled some definite methane but otherwise she's just miserable.
A few specific notes of thanks are in order:
0. To Heather, our child life specialist, for trying in vain to program the universal remote and THEN finding the actual remote for the DVD player so we are not just limited to stop/play/open functions on the DVD player.
1. To Pastor Ed for coming by and visiting and saying a prayer for healing.
2. To Monica for stopping by to say hi and bringing me a yummy banana coffee! (even if she was asleep at the time)
I will try to update when there is news. Keep praying for poop!

Tuesday, March 17, 2009

It Was a Rough Night

7:42 AM
It was a rough and sleepless night for everyone in our household. Charlotte went to bed fairly easily at first (around 8:30) but around 11 or midnite she started fussing. We brought her up to our bed so we could keep an eye on her and try to get some sleep ourselves. Despite the Zofran, she still vomited and then developed this constant cough that wouldn't allow her (or us) to sleep. We had her in many sleeping positions including sitting upright but the cough wouldn't go away. It doesn't seem like a "sick" cough but more like she keeps trying to throw up and just nothing comes out. Anyway, we called the doctor on call. They recommended that we could administer the next Zofran dose (about 90 minutes early) and to bring her in today if her condition doesn't seem to improve.
This morning she seems a bit better. She has been getting IV fluids for 12 hours now so I think that has helped. At least she won't get dehydrated.
This should be a busy day. Hopefully Roger will not have to cancel Romp n' Roll 2Go up in Caroline County. I'm crossing my fingers and hoping she will be ok...
Gotta go find some caffeine.

9:59 AM, Quick update:
Roger and I decided to take Charlotte in to the doctor this morning. After my last post, her condition really didn't improve and the clinic wanted to see her. Roger has taken her in and I hope to have an update soon...

3:22 PM, Update
Charlotte is being admitted to MCV tonight (hopefully just overnight). An abdominal x-ray revealed a rather large mass of P-O-O-P that isn't going anywhere. Plus her hemoglobin is really low and she is spiking a fever. So they are going to attempt an enema (or two), a blood transfusion, and some IV antibiotics.
Roger is with her right now and last I heard they were waiting to move her up to the 7th floor. He will be staying the night and I will be covering his classes this evening.
Please keep your fingers crossed that this goes quickly and we get to go back home (much healthier) soon.
This is turning out to be a long day for all involved.

8:27 PM, Update
Warning! Massively long post! So get some caffeen.
So here we are...
The bad news is that we're back in the hospital for at least a night if not two or three. She has stomach cramps, hasn't eaten much in almost four days and looks like one of those poorly painted manakins you find at small town department stores.
She's been very clingy and sleeping a ton but it's a somewhat light sleep so every time I turn on the TV, even at it's quietest setting, she starts to whine that, "you're-disturbing-me" whine she also uses when you're standing in the way of the TV and Dora is on.
We got to the oncology office at about 9:30 and when they took blood and all that, it turnes out CJ's white cell count was around 0. They hooked up a blood transfusion but something about that didn't agree with her and she almost immediately developed a 101 temp.
It's so hard to see her like this. There's not much I can do to help except hold her hand and rub her belly a little. What makes things worse is that the interns and doctors haven't been up to see her yet and the nurse (We have nurse Kirsty today) can't order any IVs or drugs or anything until they do.
The good news: PRIVATE BATHROOM! We're in corner room 338 on the 7th floor. The phone number is 804-649-5971
It's interesting and slightly disturbing that I feel so comfortable up here. From the cool security guy to the Child Life people, to nurses from the other wards we have met, when we see someone we know, it's nice to see them at first and then everyone realizes that it's not such a good thing to be seeing each other here on the 7th floor. Maybe at King's Dominion or Cracker Barrell or something.
It's now 7:09 and a doctor finally came in to see her and her drugs have been ordered but now they can't seem to locate a pump and stand.
CJ has been alternately sleeping, whining in bed, sleeping, whining in the stroller as we walk around the floor, sleeping, and whining in my arms as we walk around the floor. She's tried to drink a little water which is good but I think it made her cramp up again. I can't imagine how uncomfortable she must be.
We met an adorable little girl with ALL named Maddie and she is a beautiful piece of work. She's bald as a cueball, was wearing a mask so all our silly germs wouldn't make her sick, and was yacking up a storm! CJ was not in the mood to meet anyone so it was a short introduction but if you want to see Maddie's CB site, it's:
Hurray! The pump has arrived! CJ is asleep with a heat pack on her belly (seems to work).
Other housekeeping items: Jackie Plank is becoming our official "party planner" for all things CJ Fundraising related. She'll be working with us and lots of other folks to organize the various events we want to do. There are many events in various stages of planning but the ones about which we want you to know are the head shaving party on Friday, April 10th. We need at least 5 people willing to shave their heads in support/celebration of CJ getting "Daddy's haircut" We will have the volunteers' pictures on jars in the Romp n' Roll Virginia Center lobby and people can "vote" for their favorite victim by dropping in change, bills, gift cards, keys to your Ferrarri (there's that obscure reference again), etc...The one who collects the most money will receive a fabulous prize package worth hundreds or pennies at least.
We want men and women to volunteer. Our friend Heather has put herself on the chopping block so other ladies need not be afraid of being the only one.
If you have a business or organization willing to contribute a prize, please let me or Jackie Plank know. (I'll let Jackie put what contact info she's comfortable posting in a guestbook post)
Next serious event is the "Home Party Bazar." We want to get home based businesses to set up shop in a gym, church, parking lot if it's nice, etc...These could be Papmered Chef (Ooooo!), Yankee Candle (Aaaahhh), Grannie's Superdeluxe Juicer and Tanning Booth(Oooohhh). OK. So I made that last one up.
Each vendor would agree to donate some or all of the proceeds to CJ's fund. We've already heard from multiple folks willing to do this so it's only a matter of finding the right date.
Of course, we've been thinking of a benefit concert. Jackie has generously offered up her property as a venue and my fellow vocalists from the Uptown Vocal Jazz Quartet have offered to make themselves available as part of the evening's entertainment.
Anyone know higher-ups in your local police/sherriff's office? I want to explore the possibility of having a "Tickets For Charlotte" day where cops give out fake tickets and people pay the "fine" by making a donation.
It doesn't matter where you live, if someone wanted to have an event in your neck of the woods, like Chicago, Denver, or New Zealand for example, we would be available for interviews with local media, send photos of CJ and/or press releases out, etc...
OK Jackie, SIC 'EM!

Monday, March 16, 2009

Cancer Sucks!

7:04 AM
Had a great day yesterday at Romp n' Roll.

We had our "Caringbridge Open House" and had a ball. The families who came (including us) really seemed to enjoy being able to just hang out.

Charlotte had a very busy morning yesterday as she climbed down two full flights of stairs (one at home and one at church), played with friends in the church nursery and was a wonderful hostess at the CB open house.

She conked out about 3 and had a nice nap in the office while things wound down in the gym.

Her evening was not bad but the nausea comes and goes. Almost on cue with the timing of her anti-nausea meds. The worst part is that she seems to be "getting used to" the routine of telling us her belly hurts, keeping the tub near, etc...and I really hate that. I also hate that despite the medicine tasting good, she fights it pretty strongly. We have had to bribe with chocolate, Peeps, and just lately, Tylenol Meltaways. She loves them. Sometimes we give her a small piece of Tums. That will work too.

Please save Friday, April 10 for the head shaving party. We're going to use one of our Birthday Bash slots. That's about as planned as it is right now. I'll be working with our "planning committee" to get details up this week.

The hat shower is still just an idea at this point, I think. A more solid date should be coming soon. Rachel should be getting back with those details.

Wish I could think of more right now but I need to get going anyway.

8:14 AM
Mom's turn:
I don't have much to add regarding Charlotte. I agree that she is now definitely feeling the impact of the toxic medicines on her body. She is understandably tired given the fact that she has eaten very little and vomited much. I think today will be another rest day.
Unfortunately, our child care for tomorrow has become ill and cannot watch Charlotte. If anyone is available to watch Charlotte at our house tomorrow from about 8:30-1:30, please let me know. I know that some folks with kids have offered to have her come over to their house but with all her needs right now, I don't think that is a logistical option. Any healthy adults or kids are welcome at our place, though.
Anyway, I will be adjusting the care calendar. Please sign up there or email me asap.
In other news, we have received many ideas regarding the fundraising and I think we have some "chairs" in that area who will work with us. We have some ideas ourselves and will let you know. I had originally loved the idea of the hat shower but she is already being "showered" with great gifts of hats, etc. and we already have quite a collection. Have to think on that...
On the insurance front, we have also received some suggestions and ideas. I have folks with legislative connections doing some "homework" for me and I pored over our policy over the weekend and have questions for both Humana and the Insurance board which I will hopefully get answered through phone calls today.
I have to echo Roger's sentiments about the impromptu Caring Bridge party yesterday. It was small but fun and good to share stories. We are hoping to make it a somewhat regular event and hope we can add new families to the mix. We are also already talking with the Starlight Foundation about using Romp n' Roll for official "events" from time to time. Just one way that we can hopefully give back a little when so much has been given to us.
Gotta go tend to Charlotte and clean up my mess on the floor!

4:53 PM Update
Poor Charlotte! It is so true that it's the medicine, not the cancer, that makes our kids sick.
She has had a very rough 24 (or so) hours. She has been unable to keep anything substantial in her tummy (even if she wanted food) and has been very tired. The nurse called for a somewhat related matter (our insurance company doesn't have Zofran in its formulary so we had to pay for it out of pocket...go figure!). She is going to get the approval for that but in the meantime while checking in on Charlotte's condition she decided to send out some IV fluids and IV Zofran (which is what she had in the hospital and it worked well). So we are waiting for the home health nurse to come out and do her thing. Meanwhile, Charlotte is sleeping like an angel on Daddy's chest.
As a parent it's always difficult when your child is sick. You never want them to "not feel good" but it feels even worse when you know they are sick because of somethin you did to them (not just some icky bug floating around).
Did I mention that Cancer Sucks? My new mantra...
I did have some good conversations with a gentleman from the Insurance Commission today. He is helping me sort through some stuff and will help us navigate through an appeal. We also have some friends of friends with connections and we are hoping that may help our case. All a process! I have genuine faith that one way or another this will work in our favor. We will either get the insurance company to see it our way or we will raise the money (or find the money via other sources) to take care of the difference.
Kind of a good day to stay at home just because it's gloomy and there wouldn't be much else to do (except go to work and who wants to do that???)
That's it for me...

Saturday, March 14, 2009

Charlotte is Home!

Charlotte is home. At the moment she's sleeping in our bed looking like the classic cherub out of a da Vinci painting.

That is the good news. For the most part, she seemed to tolerate this first round of chemo well. The last day, she was a little on the grumpy/fickle side and did not have much of an appetite. We came home with a whole set of prescriptions (that daddy forgot to fill last night-bad daddy!) to take and the next week will be filled with doctor's appointments, trying to get her in to therapy appointments again, etc.

Our news on the insurance front is not so good.

One problem: Humana only insures about 400 policyholders in the entire state of Virginia so while they have had a license in VA for a while, there is not a lot of insurance "history" to go on. In talking with someone from the State Commission on Insurance, he feels like we probably don't have a huge "leg" to stand on since insurance companies can arbitrarily (and legally) work these network/out of network stipulations into their policies. It would be a lot easier to fight if they were either 1) flat out denying us care for her problem or 2) if Duke did not/could not provide the chemotherapy treatments. Since neither is the case, we do not have much recourse. Fighting it with lawyers would probably not do much good either.

So we are faced with a decision: opt for in-network care at Duke for everything since it would be very difficult (if not impossible) to coordinate care between the two hospitals or stay at MCV and opt for out-of-network care for her transplant services and pay the out-of pocket costs ourselves. As we have calculated it (based on what Humana will and will not pay for out of pocket care), we would be looking towards AT LEAST $40-45K expenses just for transplant services. We have an additional out of network deductible ($8K) and then we pay 30% of the allowable cost up to $35K per year.

Roger and I have discussed, debated, and prayed over this issue in the last 24 hours and the more we think about it, the more we realize that:
1. The only reason why this has "worked" so far is because Roger and I are a team and we are handling this together (with our wonderful support system)
2. We need to BOTH stay close to Charlotte and to our "Romp n' Roll baby" (basically our second child) during this entire process or the plan just won't work.
3. We have faith that we will be able to raise the funds (somehow) to cover her out-of-network costs and it is worth staying close to home. We have also looked into some medicaid/SSI assistance options which may be helpful down the road.

We have probably one more possible route with the insurance company based on some of the documents I read over last night and I will contact the insurance commission on those on Monday but this is probably the direction in which we will head.

In the coming months, we will probably organize and/or ask others to organize some serious fundraisers to help with Charlotte's health care costs. I mean, with this network in place, we've already put about $7000 into CJ's account. Of course we can raise upwards of $50K for her. And then keep it going for others.

Many of you have been MORE than generous so far and we appreciate that. We want any fundraising we do to be creative, impactful, and meaningful to everyone. Please let us know if you have any ideas. Roger already has some tentative plans. His little mind is always churning out ideas.

Does anyone have experience in organizing non-profits and/or foundations?

p.s. Roger feels really bad about forgetting the prescriptions and he got his own as it was his "comfy shirt" that was used to catch what the anti-nausea medicine would have prevented. The other medicines weren't necessary until today.

p.s.s. CJ gets to see "her Devon" today! YAY!

Thursday, March 12, 2009

Charlotte has Rebounded and Looks Great

6:51 AM
Two things:

First: Time Magazine has a very interesting cover story about insurance this week and the author, Karen Tumulty, was interviewed in NPR's Fresh Aire yesterday (Wed. March 11). It was a great look into the problems some (many) people are having in dealing with insurance companies. This is NOT our experience as Humana One isn't denying us coverage but the mindset leaches over the boundaries. The second story is good too. Here's the link to the broadcast/podcast:


Next, I know this is extremely short notice but would any Caringbridge families be interested in a free Romp n' Roll Virginia Center playdate on Sunday? I'll open up the time between 2-5pm for any CB kids. It will be like a low-key open house and we'll have the art/party room open for a place to sit/have snack if you like.

Please answer on the guestbook or call the store at (804) 249-1001 to let us know if you're coming so we can get some idea of what kind of numbers to expect.

Thanks and take care,

4:18PM Update
We are in the homestretch of round 1. Charlotte has been doing very well and all the doctors and nurses are happy with her progress. After that little bout of grumpiness and poor color, she has rebounded and looks great. She is currently getting her last chemo medication on this round and should be released sometime tomorrow (hopefully in the morning). She has had a busy day, playing with some other kids on the unit, working with the preschool teacher on cutting and coloring skills, and taking lots of walks or rides in the stroller. She is currently being annoyingly adorable and talking her head off!
We are still trying to sort out the insurance mess. Before I call the insurance company and accept the "out of network" services, i'm trying to get some ducks in a row and make sure some of the advocates who are working with us send us in the right direction.
I finally read the TIME magazine article that Roger referenced today and it certainly echoes some of our experience. I know many people on the "conservative" end of the political spectrum who want to talk about personal responsibility and lack of government control in things like this, but what is clear in this piece is that this has nothing to do with any of the above issues. People get health insurance thinking that they are being responsible only to find out that their coverage basically only helps them as long as they are healthy. Somehow I don't understand the purpose of health insurance for healthy people. We definitely have created a system that reinforces chronic or acute care over wellness care. It's very frustrating.
Anyway, I digress...
Roger and I have looked at our calendars for the next two weeks to see where we might have needs.
To give everyone an update: food-wise, we are a-ok. We either have had meals come in this week or know that we have some more coming next week so I think the Reynolds pantry/freezer will be well-stocked for the next little while.
We also had the services of a housecleaner donated to us and will be utilizing that next week so the house will be in good order.
I know we will have to schedule lots of doctor and therapy appointments in the coming weeks. For the most part Roger and I have worked out our schedules to always have one of us with her. The main exeception is on Tuesday mornings. For the next two Tuesdays (17th and 24th) until my mom gets here, we will need someone to watch Charlotte at our home from about 8:30 (ish) until about 1:30 (ish). If you can help with this, please sign up on the Care Calendar. If you need a reminder or help accessing the Care Calendar, please go to the LINKS section of our Caring Bridge page. A link to the webpage is there as well as the username/password codes that you need in order to access the site.
Aside from that, we do welcome visits from friends, family, and other kids. While we do not need to take out of the ordinary precautions, her immune system will be compromised, especially in the next week so please do not visit us if you have recently been ill or have had a household full of unhealthy people.
I think we are reaching the end of our current batch of bracelets and Melissa will be placing another large (1000!) order soon. This means that we have sold almost 300 bracelets in just a few short weeks! WOW! Her bank account is growing and I just had to write a few checks this week for medical bills that have begun to "trickle in". We are so grateful for all the donations. The money, gifts, gift cards (many times for restaurants or groceries), clothes, and thoughtful cards are all so appreciated. Again, if you haven't received a personal thank-you from us yet, you should soon and I really appreciate your patience!
The 1000 bracelets should tide us over for a while, I think! I spoke with Barclay DuPriest at the RMC bookstore yesterday and she has asked for a large quantity from our next shipment so they can be a central distribution site for the Ashland area. More on that to come soon!
Before I sign off, I want to mention the "Secret Angel Stitchers". I had never heard of this organization before, but last week we started to receive random cards in the mail from this group. Somehow we were nominated and these ladies send machine stitched angels, animals, and other sweet tokens with a personalized card. These people send their gifts anonymously and pray over each token. We have received gifts from as far away as Australia and every day when i get the mail there are 1 or 2 more. So sweet! For more information on their organization, you can go to www.secretangelstitchers.com
Thank you to whoever sent in the nomination. We feel more than blessed!
HUGS to everyone,

Wednesday, March 11, 2009

Not a Bad Night

9:17 AM
Wednesday morning. Not a bad night.
When I got here, I ran into the dynamic duo (Mom and CJ) touring the 7th floor. Both were definately not having the easiest time. Made me feel good to brighten their evening even if just a little bit.
After Mom left, Charlotte and I read a little and went for another walk./ She was pretty uncomfortable just sitting in the room.
We met Leah's mom in the lounge and got her update which is not great. She was the one who was seriously injured in the car accident coming back from the ski vacation. The MRI showed brain damage and it has been confirmed that she's paralyzed from the neck down. Before our experience here, I would have just said "Wow, that's too bad." and written her life off as kind a waste. But after seeing things here and recent developments on the news, I can't help but be hopeful for Leah and her family. Might be wishful thinking but mom is extremely positive through it all and I look forward to keeping up with her progress and expect good things. Either way, they could definately use our positive thoughts and energy.
Nurse Andrea, who started off dubiously the night before, was a dream last night. There were several diaper changes, vital gatherings, and liquid exchanges both ways and she never woke Charlotte. I was up everytime but that's just me.
CJ is stirring, gotta go put on Sesame Street.

2:18PM Update
Leah's page is on Carepages.com. Search for leahaveryporterfield.
Looks like we'll have to file a grievance with the insurance for the stem cell/bone marrow transplant. Dr. Kahn tried to get the insurance on board for having MCV in network but it's not going to happen. More on that when I get more time to write.
Right now, Aunt B is here and I need to get to Romp n' Roll for evening classes.

Discharge Pushed to Friday

Charlotte has taken a definite turn and it's probably not for the better. Aunt B was with her for most of the day (THANKS!) while Roger and I worked and while she seemed to have a really good morning, her afternoon/evening seemed to go slowly downhill. Her "color" is much paler and we are noticing dark circles under her eyes. Definitely the toll of the medication, I'm sure. As the evening wore on, she just kept getting grumpier and grumpier and I am sure she is not feeling her best.

Her stay in the hospital has been pushed to probably Friday (who knows???). Apparently I was a little off on the protocol and while the 5 day stay is an estimate, they can't do the 3 day chemo cycle that she is on now until the methotrexate reaches a certain level in her urine and that can vary dramatically in people (mainly due to metabolism). They said that in some kids, it cycles through quickly. In others, it can take over a week just for the methotrexate to cycle out so I guess we're doing "ok". She has completed her "A" day and we are on to "B" and "C" tomorrow and Thursday. So let's hope for a Friday release?

Meanwhile, Charlotte's parents are both fatigued (to say the least). Speaking of a "cumulative effect", I think it's just trying to keep everything in balance including work, the inevitable lack of sleep, and worry for Charlotte's well being. We are hanging in there and appreciate all the support.

I haven't checked in with Melissa lately but I know the Romp n' Roll stash of pink bracelets are almost gone (less than 10 left?) so I know we will have a new order pending soon.

Meanwhile, Aunt B has been cooking like a wonder woman and helping out a lot. We really appreciate it!

Gotta go get some sleep.


Tuesday, March 10, 2009

Another Really Good Day

7:39 AM
Yesterday was a very busy day for mommy and daddy. Fortunately, Aunt B was ready and willing to hang out with Charlotte at the hospital. She had a pretty good day, including some regular poop action (hooray for poops!). She ate well and was up till almost midnight (!!!) after only a 45 minute nap. She had been given some goodies from birthday parties over the weekend. I shared those with her and she was very excited.
She is still asleep. I slept as well as could be expected in the "recliner" and will now be out in search of coffee...
Roger and I had a lovely "date" last night including dinner at the Smokey Pig and a movie at home (Burn After Reading...Coen brother's flick.) Very funny. Very Coen Brothers. Oh and did I mention both Brad Pitt and George Clooney are in it??? :-)
All in all, she seems to be tolerating everything well and has been able to get "up and about' more often than our last hospital stay so that is good. She certainly keeps us busy. Ask Roger how many times he has seen Madagascar (1 or 2).
Hope everyone has a great week. Spring session starts at Romp n' Roll and we are excited! New classes and new faces.

9:10PM Update
Another really good day. I am very happy to report that she is managing this first round well (everyone knock on some wood). She slept in until almost 10 AM (and only got up because I woke her up). Had a decent breakfast. Her appetite has definitely shifted. Some of her medicines that she takes orally (mostly for prevention of constipation) seem to bother her now when they never bothered her before. She also does not have the "ravenous" appetite that she had previously but she is still eating well.
We went "out and about" for about an hour on the unit including out to the playdeck. Weather was so nice! We rode on the swing and she played "hide and seek" with a plastic hippo we had found in one of the playrooms. She would count and I would hide it in different places around the playdeck. It was a great way to get her walking!
The afternoon was mostly TV/movie watching with some books and time for crafts. She made sticker pictures with some of the great stickers folks have brought her. That was fun.
Aunt B arrived later with dinner (yum AND healthy) and we took another multi-lap walk around the unit. I stopped counting after 5...
We keep seeing lots of her former nurses and doctors and they all remark about how great she looks (and she does). Other than the slight appetite shift and the very full diapers every hour (cause they are flushing her with fluids), she is in great spirits and seems to feel great. Only the occasional "ache and pain" and I haven't heard her say once that her "head hurts".
Word on the street is that they think we will be out sometime Wednesday. They are waiting for her methotrexate levels to fall below .1 before they can administer the next round of meds. Since we started late on Friday this is not too surprising.
All for now...

Sunday, March 8, 2009

The First 24 Hours are Over

The first 24 hours are over.
We have received the second of the anti-cancer drugs, vincristine, another real winner, (more happy fun time reading at http://www.chemocare.com/bio/vincristine.asp) and the “rescue” drug, Leucovorin, which counteracts the methotrexate. It’s also called a “chemoprotectant.” http://www.chemocare.com/bio/leucovorin.asp See all the new things you’re learning? The vincristine is one of those hair-fall-out drugs so we'll see.
Aunt B (Becky) came relatively early on and gave me the flexibility to be occasionally useless which I was. Sleep was hard to come by last night so I was exhausted most of the day. I did get a nice nap while a couple nurses took CJ into the bathroom and gave her a real bath. Another great crew of nurses. I haven’t given out any new nicknames this time around. (So far!)
Dr. Kahn came by just before Becky got here this morning and addressed the catheter situation. Since the purpose was to keep her urine away from her skin and it wasn’t really working and was actually giving her a great deal of discomfort, Dr. Kahn recommended we just take it out and deal with the skin issue by changing diapers often and applying large amounts of cream every time. It seems to have worked and as soon as the catheter came out, she was a much happier girl. The unfortunate thing is that CJ now associates diaper changes with the pain of her catheter so I taught her to answer the question, “Where’s the catheter?” by saying, “It’s in the trash.”
With release from the catheter came the freedom to go for walks/rides around the floor. We went out and about 4 times visiting some her former nurses in the PACU and PICU and meeting folks in the lounge. There’s one family here from North Carolina who got into a car accident coming back from a ski vacation. Their daughter, Leah, was seriously injured and is in the PICU. They have a tremendously upbeat attitude and are handling it as well as anyone could be expected to. They don’t have a caringbridge site but they will be starting a similar page soon. I’ll try to get that info.
So ya hear the one about the guy who got drunk and lost his two toddler girls in a snowstorm? I did. I really shouldn’t hear stories like that. It gets me so riled. I kind of get beside myself. It completely astounds me how people can get so screwed up that they shuffle what should be the absolutely most important thing in their universe, the care and welfare of their children, to somewhere below getting drunk, doing drugs, taking a dump (which is pretty much what they’re doing to their kids). Talk about another illness that needs a cure yesterday.
OK enough of that, The Rock is hosting SNL, I’m now able to go to Dre McLaughlin’s senior recital at Randolph-Macon College tomorrow at 4pm (gonna be awesome!), and I think Rachel and I are actually going to get another date in after that. Crazy, man!
Need rest too.

11:15AM Update

Good morning,
Not too bad a night for Charlotte except she threw up at about 4am. The anti-nausea drug was due to be re-administered at about 4:30 so they just gave it to her immediately after we cleaned her up. She's been up since but is in pretty good spirits.
On a very nice note, Nurse Princess (her real name) form the PACU down the hall came by and visited a while this morning although CJ was brainfrying on the Micky Mouse Playhouse.
We met another family of a boy caught in a trailer fire a week or so ago. He was burnt over 70% of his body and is in the PICU getting some amazing treatment. Here's an article about it.
http://www.timesdispatch.com/rtd/news/local/article/FIREGAT031_20090303-134405/220517/CJ is fussing. Gotta change a diapey

Saturday, March 7, 2009

Can I freshen up your methotrexate, Hun?

Can I freshen up your methotrexate, Hun?
Not the most pleasant evening. Aunt B and I got here a little after 9 then she took Rachel home after the changing of the guard. Charlotte was feeling pretty uncomfortable due to the catheter and I was trying to do what I could to calm her including the old, lay-on-the-edge-of-the-bed-try-not-to-fall-out trick which actually worked a little.
The nurse (Nurse Katie, who looks a lot like Reese Whitherspoon) came in to check on the catheter because her diaper was wet and while her diaper was off, she leaked onto the bed. This is a big problem in multiple ways; first off, they need to see how much she’s peeing so they can be sure she’s adequately cleaning out the drugs she’ll be getting. Second, last night, they hooked up the first of the chemo drugs, methotrexate, (a really fun chemical the whole family can enjoy! Learn more about it here: http://www.drugs.com/methotrexate.html), and it’s very toxic, especially when it touches bare skin. That’s why a catheter leak is a bad thing. A monumentally bad diaper rash is the least of her worries if exposed for too long.
So…along about 11pm, Nurse Katie and another whose name I didn’t get came in to deliver the bad news. They were going to have to replace the catheter with one that had a larger balloon. Not nearly as traumatic as the first one but no fun nonetheless. Fortunately, she had already fallen asleep and as soon as the procedure was done and the screaming stopped, she was out again. Unfortunately, Nurse Katie, who is a nice and very capable healthcare professional, has become Medusa in Charlotte’s mind as she was the one who changed the catheter and who woke her up throughout the night to check her out and change more diapers because, guess what, she’s still leaking. Not sure what the point of the catheter is when we’re changing diapers every 20 minutes. Dr. Kahn should be in soon and we’ll figure out what to do next.
Our neighbor is a tiny little boy named Silas and he has a serious hernia. He had surgery to repair it and they will, hopefully, be going home to South Boston (past Farmville) today. He makes the funniest sounds when he sleeps and has a great set of lungs when he’s unhappy. They’ve been great to have as roommates. Mom loves WALL-E as much as we do and has been very patient with all commotion surrounding CJ.
As we’ve said before, if you have to have a sick kid, MCV is the place to bring ‘em. Not the least reason is Miss Monica from the kitchen. She cooks good meals and brings them around to all the kids’ rooms. She also slips parents meals sometimes if there’s something extra. She even threw something we brought into her oven. Breakfast this morning was pancakes, sausage, and eggs. CJ didn’t eat much. I think the chemo is having it’s effect and her belly is a bit upset. Overall she’s doing pretty well now, watching TV, telling everyone she loves me and mommy, telling the nurses they’re nice (angels compared to how she feels about Nurse Katie), and asking lots of questions about Silas in a hushed voice.
Gotta go attend to the princess…

First Day of Chemo

Here's your update.

Yes, it has been a LONG day but I wanted to try to get an update in before I hit the hay. Another long one tomorrow.

Charlotte and I made it to MCV a little after 9 AM and we finally got admitted to the 7th floor at about 3:30 PM. We hung out in the Hem/Onc clinic for most of the day with a brief respite outside for lunch (yay hot dog cart and park benches...oh and did I mention cheesy poofs!). Fortunately, the Hem/Onc clinic is like an amusement park/toy store with medical treatments going on in the background. There are lots of kids getting lots of different treatments but there is a DVD player/VCR/video game system everywhere you look plus toys and books galore so CJ was pretty well entertained.

The worst news besides the wait for a bed was that she actually has to have a foley catheter put in for the duration of the chemo since the methotrexate is highly toxic and can hurt her if it gets on her skin (i.e. through the diaper). We even have to be extra careful and wear gloves during diaper changes, etc. So putting in the catheter was no fun. She now knows what is coming so in anticipation, she gets upset and extra tense which, of course, does not make the process any easier. Sigh.

We did finally settle in well to our room which we are currently sharing with a little two-month old boy who is being released tomorrow. After sufficient IV fluids started, they started the anti-emetics (AKA the "no-throw-up meds"). That was when Daddy and Aunt B entered the picture and we traded places.

I wish the hospitals gave you little bar code key tags like you get at the grocery store for being a "frequent patient". They could just save all of my information in their files and then when they need us to check in all over again, they could just scan the bar code. Would save a lot on redoing many things. I do feel like an "old pro" now when it comes to navigating around the hospital, getting through security, and managing all the ins and outs of just being there. Hard to believe that the place was pretty foreign to me before about 6 weeks ago. I had been there a few times and knew the basics but NOW I know where the turtle is that Charlotte has to visit every time we pass through the Gateway building. Plus I know the quickest route to Chick Fil A from any point in the hospital. Hee hee...

In all honesty, for those of you who marvel at my strength and attitude at this time (and I do appreciate the praise and support), I have got to say that I'm EXHAUSTED. It's been a very tiring week...probably more mental than physical. We are happy to have Aunt B here and hopefully Roger and I can get a date in here one of these days. Maybe even with each other!! Ha ha!

I am off to Romp n' Roll tomorrow for what is the OFFICIAL last day of the winter session (sorry, Rog, but you forgot about Saturday!). And then 3 birthday parties. yay! Then I think 2 more parties on Sunday. Did I mention it was a busy weekend?

We have staff and volunteers covering our Bon Secours event at Memorial Hospital on Sunday. Know any moms to be? Send them out for free stuff!!

Much thanks to Kolbey. I came home tonight to a clean floor in the kitchen and clean bathrooms upstairs. Very nice!

Ok. That's it now, I mean it...
(Anybody want a peanut?)

Friday, March 6, 2009

Charlotte has Been Having a Great Few Days

Very sorry to have to tell you that the event at Glen Allen Golf has been cancelled. They'll still be open I believe (call first).

Not a lot of new stuff about Charlotte. She's been having a great few days and we won't have any kind new road map until Friday at the earliest. That's when we meet with the team to figure things out.

Rachel says she has noticed a possible and very slight decrease in her ability to spit words out off the top of her head so there is a perceptible (however slight) change over the last couple of weeks. The words she DOES get out, however, are still amazing.

Just to address a few questions people have asked us:

They are all discussing our case widely with experts from all over the country so we're getting second, third, fourth, etc...opinions. We really feel like we're in good hands.

We should be getting the webcam laptops set up at home and at "Montessori House" so CJ will be able to see her friends very soon. I'm sure if any of you have webcams and a Skype account, you'll be able to visit too. It isn't anywhere near as good as hugs but it will have to do for now.

Whenever we start the month of radiation, we will need to call on our friends and family a good amount to either stay with her or occasionally take her to treatment since it will be an everyday thing. Tuesdays will definitely be high maintenance as both of us are scheduled with Romp n' Roll activities that day. After this Friday, we'll have to reassess our needs and then adjust the care calendar. Stay tuned.

With the kaibosh on the Glen Alen Golf (Thanks anyway, Dean and we'll pick another night soon) tomorrow holds the next "event" which is massages for mom at Romp n' Roll. Lori Raybold will be back tomorrow from 1:30-8:00pm with both her chair and her table so Mom can get pampered either way.

Chair massages are walk-in and can last from 5, 10, or 15 minutes.

Table massages are 30 or 60 minutes and must be reserved. Plan to arrive 10-minutes before your time.

Lori is offering a really great deal for us so poke and prod your significant others to sign you up. It's the least they can do for a hard working mom! (Call the store to reserve your time)

Friday is our Mom's art project and Saturday is the Chick-fil-a Cow Drop at the Hanover Airport.

Then next week we start all over!!!

Chemo Starts Tomorrow

Big day today. Last day of RNR's Winter Session, Aunt B coming in, and Charlotte goes in for her first chemotherapy treatment
Imagine the emotional turnaround when I first hear from Rachel that CJ gets to start treatment Friday. At first it was, "Yay! She gets to start chemo tomorrow!" Then it was the polar opposite as the concept hits, "Ugh, she starts chemo tomorrow." A sick twisted part of me heard The Price Is Right "YOU LOSE" music as I realized exactly what that meant. But as usual, I think the adults make it worse
CJ keeps amazing us and from what we've heard, kids weather the first treatment pretty well. We've been talking to her about it a good amount and the other day, Charlotte was overheard in the gym telling someone that she was going to get daddy's haircut. (see note below)
It's been just another of the totally surreal experiences leading up to this first round of chemo. Haggling with the insurance company, keeping the store going, dealing with regular, normal domestic hassles that seem so much less important and are that much more irritating because they really do have to get done.
In the "something-seems-silly-but-I-really-don't-want-to-deal-with-it-right-now" category, it looks like our monthly week of meals from Ashland Community Preschool is not going to happen. There are still members planning to provide some meals but I think I'll have to reassess our situation and do some more planning. I'll let you know what we need.
Just lately, we've been taking advantage of all the great gift cards that have come in like Applebees and Starbucks and Ukrops, OH MY! Yum and thanks to all for those.
As for the head shaving thing, I'm now growing the top-knot so please forgive any scruffiness on my part. When the official party gets planned (probably a Friday afternoon in April if CJ is feeling well enough) I'll have enough stubble to build a moderately respectable mound on the art room floor.
Another big event: The Shifflett's Birthday Bash is today and I can't tell you how excited I am to host it. Obviously, CJ can't be there but we'll have lots of fun and I'm sure the photos will filter back to her.
Gotta go do another marathon day at RNR and Mom has a marathon day at the hospital. Thanks to all who are writing letters and keeping the energy up. We kind of need it right now.

Thursday, March 5, 2009

Quick Update

Quick update:
I feel like I have been on the phone or managing stuff all day. Between tech support for our DSL (that did NOT get fixed with an onsite visit today), other business related stuff, and other misc. phone calls, it feels like I haven't stopped. What time is it?
Anyway, the main update is that we have determined that Dr. Khan and Charlotte's oncology care at MCV is considered in network and if all goes well, we will start chemo tomorrow (Friday). We will get everything with the stem cell stuff worked out and have a few options including:
0. Our rep from Care Connection is talking to the VA insurance commission to see if they can intervene. It seems ridiculous that there is no Virginia hospital (especially a teaching hospital) on their "approved" list.
1. Dr. Khan has a peer-to-peer meeting set up with another doctor who works for humana and hopefully they can work things out without filing a formal grievance.
2. We have the "formal grievance" option if none of that works but the good news is that we can start chemo and have time to deal with the stem cell issue.
Miss Charlotte is much happier now that the catheter has been removed and she has been a busy bee today, making pictures, "wrapping" presents with paper and decorating the wrap and being in all other ways a busy and adorable preschooler.
Gotta run and be busy some more...
Thanks again for everyone's ideas, comments, support, and help. I noticed on the news last night that the topic of health care is hot, hot, hot on the agenda in DC right now so this is a great time to make your representatives aware of how frustrating our current system is.

Wednesday, March 4, 2009

Addendum to Previous Entry

Quick Addendum to the previous entry:
I have been on the phone with Humana reps for about the last 40 minutes. While I may be frustrated with their policies and all the hoops we are having to jump through, I have to say that their customer service representatives are top-notch. They have been very helpful and the one person I have been working with most closely has gotten other people on the line and has actually given me the direct number of the head of her department to contact if needed. These are definitely not the people who are trying to "screw us over".
Here is the latest on where things stand:
MCV hospital IS in network for medical care. What I don't know (yet) is if Hem/Onc (specifically Dr. Khan) bills under the same Tax ID. If so, part of our problem is solved. If not, we have a few options:
1. We can see if Dr. Khan can bill through MCV's tax ID (some hospitals can do this, others can't).
2. We can have Dr. Khan get in touch with Provider Affairs to be "in network" and have him date the start of his "contract' with them to be the date he began care for Charlotte. This could be a lengthy process but could be approved while she is undergoing chemo and if they backdate the contract, it will be covered
3. We can accept that we are "out of network" and then file a grievance. This is how we get the insurance company to pay for an "out of network" doctor. Another 60 day process for an appeal but in the meantime she can receive treatment.
4. If MCV/Oncology is in network but stem cell is still out of network, we can do #3 just for the stem cell part and see if we get approval.
5. OR we can just pack up and go to an in network hospital for everything (or just for the stem cell part).
I will be talking in depth with the doctor tomorrow to see what our options are.
Meanwhile, I can't imagine what families who don't have the knowledge or time or energy to fight this stuff and/or ask the right questions do in situations like this. It boggles the mind!

Insurance Companies Suck!

(No offense intended to anyone who works for an insurance company...unless you are one of their fat cat CEOs)
This has been a day of the run around. Charlotte's catheterization was probably the easiest part of the whole day (and that wasn't all that peachy).
The short of it is: we will not begin chemo tomorrow. Instead, we are doing whatever we can to figure out what the insurance company will and will not cover and what our next options might be.
Dr. Khan is working with us and will do whatever he can to set an appeal that allows us to stay at MCV. I have also spoken with someone at Care Connection (thanks for the advice!) and they are going to try to help us navigate this process including figuring out exactly what the insurance company is and is not willing to do right now (Dr. Khan and I keep getting different answers from different people) and what we can do to get what Charlotte needs. The tricky part is that we do not have a lot of time. Her cancer is very aggressive and we need to start treatment sooner rather than later. We can't waste time with appeals. We have a "short list" of hospitals where Charlotte can get care. All are reputable but all are far from home (the closest still being Duke).
A friend of ours who works at the Library of Congress is planning to hand deliver copies of our letters to our Senators in Washington DC. I will be revising the previous letter with updated information. We shall see what happens. (Thanks Ginny!)
In the meantime, please direct your prayers to our advocates and physicians as well as to giving us the time we need to make this happen.
Somehow we are still holding it all together. Roger is working his heinie (sp?) off at Romp n' Roll and I apologize publicly for giving him major distractions yesterday and today. I have not been the most helpful spouse the last two days. I am home with the cathetered princess who has been such a brave and strong little girl today!
A few bits of good news: her follow up with the orthotic specialist was great and we may not need the brace much longer. She is also on a "regular" schedule and not needing laxatives. We do still have a fiber/flax rich diet but that doesn't hurt anyone, does it? :-)
PLUS: It's Wednesday which means it's LOST night. Also means it's Business Time. If you don't know what that means, go see Flight of the Conchords. Ha ha!! (That one's for Roger)!
A new batch of bracelets were delivered to Romp n' Roll today if anyone "local" needed to pick some up.
HUGS to all,

Insurance Dance Continues

Charlotte got the catheter this morning and Rachel says she was very brave. She also got the baseline set for her hearing (let’s hope it doesn’t change much).
The insurance dance continues. Now we come to find out that ALL the chemotherapy is considered “out of network.” Rachel only learned of that by chance from talking to Dr. Kahn. So Rachel was on the phone with Yolanda from Humana Benefits trying to figure things out. At one point Yolanda (very politely and trying to be helpful) says, “You could just go to St. Jude.” There is no “just going to St. Jude.” I’ll tell you what, if we do go there, I’m camping out at the Elvis Presley Archive. (Anybody know someone in Memphis who needs a singer?) There are other possibilities as well. I'll let Rachel update you on all that.
Dr. Kahn has stated that he will start filing papers to get this cleared up but it takes a very long time to process so unless we can somehow get it expedited, we won't be starting chemo tomorrow. Which means that the whole catheter thing was unnecessary.
Keep writing those letters and send the positive thoughts our way. Our frustration level is rising.
Got some Styrofoam peanuts and bubble wrap and I understand there are some materials on the way. Thanks everyone.
Charlotte Bracelets are in! We will probably have some at the front desk but there are so many ordered, we will most likely have to put in yet another order! This time for 1000!
Volunteer needed!
This Sunday, Bon Secours is having one of their baby expos at Memorial Regional Hospital. With all the things going on in our lives, both personally and professionally, I was just going to let it happen without us (me) but then remembered our amazing network. So I thought I’d put out the word.
The commitment will be from about 2pm-5pm at Memorial Regional on Meadowbridge Rd off of 295. Building 1.
Please email us or call my cell if you are interested (540-220-4922). Thanks a ton in advance.

MCV an In-Network Provider

Good news: I got a message from Dr. Khan today that he is working on some paperwork that will (hopefully) allow us to use MCV as an in-network provider with our insurance. Keep your fingers crossed. Even if we get "our way" with this, it still drives me crazy that the insurance companies force us to jump through hoops just to get the care we need. Sheesh.
Off to MCV again tomorrow for tests and the insertion of a catheter for the urine sample. Thursday is the big day (hopefully).
I am tired so will make this short but she has had a great couple of days. Roger and I actually talked with her a little today about what the next few days have in store for her. She seems to understand (to the extent she can) and asks us lots of questions. We are definitely deep into the "why" phase of life. Her latest "bit" is to ask "what kind?".
An example:
"Mom, where are we going?"
Romp n' Roll
"What kind of Romp n' Roll?"
The one at Virginia Center
"What kind of Virginia Center?
Etc. etc.
It can get a little tedious. But oh is she adorable!
Gotta go catch some zzzzsssss

Monday, March 2, 2009

Funny Anecdotes

Two funny Charlotte anecdotes from today:
1) She was sitting on the couch and had one of her "monumental poops" and after she was finished, she raises both legs in the air and says, "Hey mom does it stink?" NICE.
2) As we were changing our clothes from a jaunt out in the snow, Charlotte noticed my bracelet and said, "Why are you wearing that, mom?". I said, "So everyone will know that I'm your mom." She replied (with I think as much sarcasm as a 3.5 year old can muster), "I think everyone knows that you're my mom." I really think if she knew better, she would have rolled her eyes as well just for effect!
Too funny!

Grassroots Activism!

You gotta love grassroots activism! Many of you have shared that you have passed along your own letters of support to government officials. Please feel free to contact our VA reps (if you live here in VA), President Obama, and other reps (if you live in other states) on our behalf. I have posted links to the websites of our Senators, Representative, and the White House on the LINKS page. There are Contact pages on all of these websites where you can send emails as well as "snail mail" addresses and phone numbers for those who wish to make contact that way.
We have had a somewhat lazy morning with the snow. Charlotte got out and got to "stomp around". Unfortunately, the snow was more powdery than we expected and not so good for snowmen. We will post pics soon (hopefully).
Gotta go help Roger change Charlotte's dressing. Fun!
Stay warm everyone!

Letter to Our Senator

A switch back to the snowflakes because WOW is it ever snowing in Richmond! We will be making a snowman in the yard tomorrow for sure!Thanks again for the letters, ideas, and reassurances regarding our insurance issues. Our church friends, Lee and Susan Chambers, have already begun a letter writing campaign on our behalf to Senator Mark Warner and it has inspired me to do the same. I am copying below the text of a letter I submitted to Senator Warner via his website. I may send copies to Senator Webb, President Obama, and a few other folks as well. If people want to get involved, I encourage you to write to your respective legislators. Share our story. Share YOUR story (many of you have commiserated with your own insurance woes). Our representatives need these stories to create reasonable and just policies around health care in this country. I can only hope that this will help other families down the line so that they don't have to travel circuitous routes such as using patient advocates, calling billing offices, and arguing with insurance companies just to get the care that is best for their children. Here is my letter:
March 1, 2009
Dear Senator Warner,
I am writing to you on behalf of one of your youngest constituents. On January 20, 2009, as President Obama was taking the oath of office, my 3 year old daughter, Charlotte Jennie, was in the hospital receiving the diagnosis of a brain tumor. The tumor was pervasive in her brain and judged to be about the size of a large orange. Within 2 weeks, she had undergone two craniotomies to remove as much of the malignancy as the surgeons could safely take. After 3 weeks in the hospital, Charlotte is fortunately home and progressing well with the physical and occupational therapy that was needed due to the effects of both the tumor and the surgeries on her motor skills. Now we are in the process of removing the rest of the cancerous cells with chemotherapy. Through all of this, my husband and I actually feel relatively blessed. We have a wonderful social support system surrounding us. Our friends and family have showered us with hugs, gifts, meals, and prayers. The doctors tell us that Charlotte’s prognosis is good even though we know the road ahead of us will be long. We feel extremely lucky to live close enough to Richmond to receive the best care possible at a hospital such as the Medical College of Virginia (MCV) and we are constantly amazed by the skill and technology available to the physicians and other health care workers who heal our daughter on a daily basis. The proximity to the hospital has enabled my husband and I to continue working (albeit in a more limited capacity). This is especially important because we are both self-employed and are struggling as many businesses are right now to keep our household as well as our business afloat in the current economic climate.As small business owners, we had purchased individual insurance to cover our entire family. Since we are all relatively healthy, we opted for a high deductible plan that would provide for regular wellness but sufficiently covers our needs in a case such as this. Until last week, we felt very comfortable with everything our insurance would provide. We had not met with any denials for care or logistical hurdles. We had discussed plans for Charlotte’s care with her doctors and they had drafted out a road map of chemotherapy, possible radiation, and stem cell transplants that would take from 6-12 months. Her first round of chemotherapy is scheduled to begin March 5.Imagine my surprise when I received a call from the insurance company telling me that while my daughter’s main health care needs could be met at MCV, the stem cell collection and transplant services that she will require throughout this process would need to be handled at a different hospital because MCV was not considered to be “in-network” for our insurance. In fact, the closest hospital for this service is at Duke in North Carolina, a four-hour drive from our home. Because of this, in the midst of my daughter’s chemotherapy treatments, we will now somehow have to coordinate care between MCV and Duke. We will need to uproot my daughter and at least one of us (myself or my husband) to travel miles away from our home in order to harvest her stem cells (three times, after each initial chemotherapy treatment) and then somehow coordinate her transplants during the three high-dose chemotherapy treatments she will need to receive down the line. We will need to get to know a new set of doctors who will need to coordinate treatment with the MCV team and make sure that everything stays consistent for our daughter’s care. All the while, MCV has the staff, knowledge and ability to provide this level of care and services for my daughter. They are simply not “allowed” to because MCV is not considered a part of their “network”. We plan to do whatever we can to fight this decision made by the insurance company. We plan to discuss this situation with MCV and see if they are willing to negotiate with the insurance company so that our daughter’s care can stay in her hometown. My question to you is why should this even be an issue? At the moment, all of our energy is running towards the care of our daughter. I do not have the time to negotiate with insurance companies. I do not have the energy to fight more than my daughter’s cancer. As President Obama and Congress begin to tackle the many issues surrounding the health care system in our country, I would like for you to consider our family’s story as one example of how the insurance companies have taken control of health care when the control should be given to the hospitals who hire physicians with the training and expertise to know what is best for their patients. We would like you to also consider those families who have not been nearly as lucky as ours. We know another Hanover County family whose beautiful six-year old daughter (Reese) began her fight with a brain tumor only two weeks before Charlotte’s. The Klauer family has been met with denials from their insurance company over the physician’s recommended protocols. They have been forced into “battle” with the insurance companies to get the best care for their daughter.Finally, please consider the many families we have met while at MCV whose stories are far from blessed. We saw children who were alone in the hospital on a daily basis because their parents had to choose between keeping their job and staying with their sick child. We met families who had no choice but to wait until their children got “sick enough” to come to the emergency room because they had no insurance for wellness care. Through this process, I have realized that within our current insurance system, my daughter will need to constantly remain insured in some way for the rest of her life because of what will now be considered a “pre-existing condition”. Any gap in coverage would surely result in denials of coverage and/or exorbitant premiums on the part of most insurance companies. Is my daughter less deserving of affordable health care throughout her life because she met Cancer before her fourth birthday?The saddest part in all of this is that many of these cases seem to boil down to insurance companies denying health care coverage for seemingly arbitrary reasons. I see no reason why the insurance company could not pay MCV just as easily as Duke for any stem cell transplant services provided to our daughter. There is no good reason for uprooting a family and disrupting a treatment plan simply because of insurance company decisions. As a friend said to us, “"If our insurance industry would stop spending a large fraction of our premiums figuring out how not to provide coverage, we'd not have these problems."Last week, I received a treasured gift from a close friend: a necklace with a small circle pendant that has the word “BELIEVE” etched into the circle. It carries so much meaning for me right now. I BELIEVE that the physicians and health care workers will use their expertise to provide the best care for my daughter. I BELIEVE in God and the power of prayer and I know that belief will help us get through this crisis in our lives. I BELIEVE that my daughter will find the strength and the will to see through to the other side of cancer. Finally, I BELIEVE that our government will work to create sound and equitable health care policies that will allow American citizens of all ages, economic levels, and abilities to receive the very best care available to them without fear of bankruptcy, future denial of coverage, or lack of choice in how they receive that care. As you move forward with President Obama and your fellow legislators, please think of my daughter’s story. Please share our story with your fellow Senators and other policymakers. It is my hope that stories such as ours will be the foundation for lasting, positive change for the citizens of our nation.
Sincerely,Rachel Reynolds Ashland, Virginia