Happy Passover Everyone. And a blessed Holy Week.

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

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!