Board Member Spotlight

Melissa Owens

Board Member since: Winter 2011

Melissa has been involved with CJSTUF since the very beginning.  As a friend of the Reynolds’ and a Music Therapist at VCU Health System, she had the opportunity to visit Charlotte’s room often, bringing music, positive energy, and faithful minions, a.k.a. “interns,” to help make an unbearable situation a little more bearable.

            Melissa grew up with music all around her.  With a mother who majored in music in college, the norm in her family was attending concerts and musicals, gathering around the piano at home, and singing “99 Bottles Of Beer On The Wall” 450,943 times on road trips (ok, that stat is made up).

She began college life as a Communications Disorders major and switched to Music Therapy when she found that she could merge her two loves into one career.

Melissa became the first official fundraiser to help with Charlotte’s care when she and one of her "faithful minions," Miriam Smith, designed and ordered the first pink “Prayers For Charlotte” bracelets.  The bracelets were sold for $3 and the money was given to the Reynolds.

When a group of CJSTUF Board members began to rotate off due to the end of their terms, Melissa was on the top of the prospectives list and it wasn’t necessary to ask her twice to join.  She officially assumed her position in winter of 2011.

            But little did she know that she would eventually have to answer:

4 and 1/2 Questions!!!

What was the last earworm (song) to get stuck in your head?

Car Wheels on a Gravel Road by Lucinda Williams

What is your favorite animated character (Disney or otherwise?)

Jiminy Cricket

On a scale of 1-10, what is your level of expertise at reading upside down?

10! My secret skill is reading song lyrics upside down. 

Who is your inner superhero??

Xena

What would you do if…

“I had an extra day every week?”

I would have a technology-free day with my family, and share some time with my favorite local charitable organization, CJSTUF! : ) 

Well played Warrior Princess...Well played.

Insurance Hilarity...And a day tinged with sadness.

Ok, so you may think from the title that I am going to wax poetic again about health insurance.

NO!

The only thing I have to say about the health insurance front is that I think we are (mostly) done with medical bills from Charlotte. I did get one last bill from MCV for some leftover doctors visits. I had been round and round with Humana and MCV and I think they billed it incorrectly. Supposedly it was fixed but then I got another bill....

The upshot of all of this is...I will pay the bleepin' bill. In the grand perspective of things, it's nothing. Charlotte racked up over $700,000 (yes, those zeroes are correct!) in medical expenses last year and I think we paid for less than 10% of that out of pocket so I'm not going to nickel and dime the insurance company any more.

As a small aside, Roger and I have been most impressed by those in the medical community who have followed our story and contacted us in the last few weeks "just to see how we are doing". We have received cards and phone calls from my OB-Gyn, Charlotte's pediatrician (Dr. Weber who made the initial diagnosis), many of the staff from MCV including those who never even worked directly with us, people from our health insurance....the list goes on. It just feels good to be more than a number in their eyes. I know from working in health care that sometimes you have to do your job with a certain lack of emotion. If you get too caught up in it, you will go crazy or burn out (and I never even worked in a field with life or death situations like emergent medicine or oncology). That being said, it is so touching to know that these people didn't just look at Charlotte (and us) as just another cancer family. Or, hopefully, we are just another cancer family and this is how they treat everyone. These people deserve all the support, respect, and praise we can give them. It's a tough job!

Ok, I'm getting distracted. Back to the insurance story. I had to make some phone calls about a general liability policy for the Foundation. During one of my calls, I spoke with the man who answered the phone (the agent) and told him what I was looking for. He started asking very probing questions about the Foundation. What is it for? Who will it help? Do you and/or the members of your Board have any experience with nonprofit organziations (Um, yes sir. A combination of at least 50 years experience just in nonprofits alone. Not to mention the years of experience in organizational management and general quality business practices.)

The interrogation continued: What do you do for a living? What is your background? What does your husband do for a living? What is his background?

Are you getting the picture?

Then the questions got a little more inane. Actually, they weren't even questions but statements:

Him: Well, you know, it takes a lot of money to start a foundation like that.
Me: Um, yes sir. I am aware of that. It's all part of the plan.

And then it got interesting...

Him: So how did you decide to start this Foundation?
Me: Well, my daughter was very sick last year and when she passed away we decided to start a Foundation in her honor.
Him: Your daughter died?
Me: Yes, sir.
Him: That's TERRIBLE!
Me: Yes, sir.
Him: No, I mean, when a child dies that's just about the worst thing in the world!
Me: Yes, I can pretty much agree with you there.
Him: How old was she?
Me: She was four years old.
Him: Are you kidding me? That's just terrible. Horrible. That's just so sad.
Me: [Truly at a loss for words. I mean, really. Am I supposed to be comforting HIM???] Um, yes sir.

Fortunately, the conversation kind of shifted at this point. We talked coverage needs and policy parameters. All that objective stuff. He got a few more points of information from me, including my date of birth and Roger's date of birth just in case the underwriter needed it. At this point he says. Hmmm....you sound a lot younger on the phone. I suppose I will take that as a compliment. I guess I sounded like a young kid just starting a Foundation "for kicks and giggles" until he realized how old I really was.

So there's your amusement for the day.

I need some amusement. As I mentioned before, the emotions have been riding high lately. It's very difficult to explain because I'm obviously not incapacitated by grief. It's like a low-riding hum. I just cry a lot. At silly, small things. I miss her. I miss going to the store and filling my cart with Macaroli and chocolate milk and anything princessy. I go to the Hallmark store and see cards that say "Happy Birthday Mom" and it makes me cry. And it's not even my birthday! I just realize that I won't get one of those. At least for a while. That's when the emptiness hits. Nobody bother me in May, please. I will be a MESS. I can already tell.

Fortunately, I have wonderful friends who take very good care of me. Well, us. People still bring us meals every once in a while. I've gone out a few times for drinks with friends. I get care packages in the mail (Amy, you're the BEST!). It all helps in small ways. It doesn't take away the sadness but it helps me cope...and sometimes I can forget.

Changing subjects, I just got a freelance gig with VOPA: The Virginia Office For Protection and Advocacy. Someone in their office got my name from the presentation that I did in Lynchburg last fall on Augmentative Communication and they have brought me in as an EXPERT to consult with them on some issues with adults in state facilities. Yes, the word EXPERT is actually listed as my title in the contract. I find that highly amusing. The project will be about 3 months with meetings, site visits, and some collaborative training so I think it will be interesting as well as a good way for me to keep my professional chops up.

The most interesting part about this to me is that I met with them WAY back in November. It was right after Charlotte's condition was deemed terminal. I went to the meeting not knowing where it would go and I never told them about Charlotte. They asked for a proposal and we traded emails back and forth after the meeting. I let them know that I would be away for a few weeks for vacation and then, of course, the holidays happened. When I talked with Roger about it, he advised me to just take it one step at a time. If they wanted me to do something and I wasn't able, I could just tell them at that point. So I didn't say anything. The holidays came and went. I didn't hear anything and by the end of January I just assumed that they had decided to go in another direction. Sure enough, I got a call last week from their office saying that they apologized for the delay but they were still interested and wanted me to come in to review and sign the contract. So whaddaya know?

My final topic for the day (you're getting a nice novella today, aren't you?) revolves around fundraisers. Some of you have contacted us about using your business as a fundraiser for CJSTUF (Usborne books, Tupperware, Pampered Chef, etc.). I know that some of these are already in the works but I think I may have lost a few emails.

First of all, if you contacted me or Roger and we never got back to you, please contact us again.

Our friend Erin is going to do an Usborne books sale at Romp n' Roll on March 11th. More details to follow.

Also, our friend Susan Ferguson is hosting a Pampered Chef party at her house on March 16th with Jessica Pittman as the consultant. Jessica is a Romp n' Roll mom and also works under Marie Snyder who has always been my Pampered Chef consultant. (PS Happy Birthday Marie!).

Finally, one of the Moms Clubs will be hosting the Book Sale at Romp n' Roll again on May 6th. They did a used book sale in December to benefit CJSTUF while we were at Disney. I think this one will be even bigger and better!

All of these events will benefit CJSTUF.

We will get more details out to everyone once I have official details like times, etc. We will add them to the events calendar. Again, if you have an business or organization that would like to raise funds for us, please go for it and let us know. We will be happy to help promote it in any way that we can. Please also know that the Foundation isn't going anywhere. If you need to wait to hold a fundraiser until we reach nonprofit status (goal: by July!), that's ok. We will always have the need for fundraisers and I don't want people to get burned out on asking for money in CJSTUF's name in the first six months or year. It's like a marathon...you 'gotta pace yourself.

Ok, the carpal tunnel is kickin' in so I am really going to wrap this up.
Spring is coming. I can feel it in the air. Let's just get through the rest of February!

An Overall Update

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

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

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

A Lot of "Hurry Up and Wait"

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

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

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







•

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:
http://www.vcuchildrens.org/?id=777&sid=4
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.

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