An Overdue Update

Thursday was a good day.  We were going a bit stir crazy with all the rain so we headed out around noon.  First we hit Cracker Barrel for a yummy lunch.  Then it was off to some errands that included stopping by RNR (just in time for CJ to have a ROYAL poop!), Target, Ukrops, etc. We had a great Kohl's coupon so we engaged in a little retail therapy, getting some warm winter jammies for Roger and myself as well as a few other goodies. 

Then we went to see our good friend and chiropractor, Dr. Anna.  All three of us got "popped like popcorn" (as Charlotte likes to say).  Very important with all the stress we are dealing with. 

Then back home again. 

Charlotte had another relatively sleepless night.  Her brain just isn't letting her fall asleep.  We take her to bed at a reasonable/normal time but she just stays in bed reading books.  I think she fell asleep around 2 AM.  I did get some sleep but woke up wide awake around 1 or so.  Spent some time on the computer.  It's amazing some of the things you can learn on the internet.  I found out some interesting information about the function of the thalamus, including the fact that it regulates sleep.  It's really crazy to think about all those times when Charlotte was an infant and had such trouble sleeping that this tumor was growing there all along.  There's no way that we could have ever diagnosed it earlier and there are plenty of kids who have sleep issues who don't have brain tumors, but the more I think about it, the crazier it seems sometimes.  It certainly explains a lot. 

Charlotte continues to do relatively well.  She doesn't really want to do much more than read, watch tv/movies, and eat.  Pretty much all interest in her toys, coloring/art, other activities is gone.  I'm not sure if she is frustrated by her relative lack of motor skills or if her attention just isn't there.  Her speech is much slower and we have to give her lots of time to process things.  But her personality is still there.  She is still our Charlotte!

There are moments when I just want to take all the STUFF in our house (toys, games, etc.) and clear it out.  So much of it seems so useless these days.  It was nice the other night when some friends came over to play.  They actually made use of the toys that had been sitting in Charlotte's play area, gathering dust.  Anybody want to do some Christmas shopping at our house?  We've got some great, gently used toys!  We won't give up any books, though.  She uses those daily and never wears them out!

Today was another good day.  We got a relative break in the weather.  I got a bunch of RNR work done (paperwork, bills paid, etc.).  The Hayes family came over mid-afternoon for a short playdate and we all went for an early dinner at Pepicellis.  Good pizza!  It was a fun time and Charlotte ate 2 full pieces of cheese pizza!  We came home to watch more movies but I fell asleep on the couch.  Now Charlotte is back to reading and we are all heading to bed.

I think the best part of today was that it was the first day in over a week where I didn't completely break down emotionally at least once.  That's HUGE! 

I can't believe it has been a week since our devastating MRI news.  In a way, it seems more like a month.  Our calendar for the next few weeks is slowly filling with activities.  Tomorrow includes two visits/playdates and then we are headed up to a friend's house at Lake Anna for some RnR of our own.  We'll probably stay there Saturday night and Sunday. 

Monday will bring another doctor's visit with Dr. Tye and Dr. Massey to discuss next steps, including a palliative care plan for Charlotte.  We hope to get a better idea of what to expect in the next little while. 

More events next week as well. 

We got an interesting phone call today.  I think someone from Humana (our insurance company) called to check on Charlotte and when Roger told them what was going on, he received another call not long after from a counselor/patient advocate.  She was not a Humana employee but works for the company to assist families in situations like ours, making sure that we have access to any needed resources and helping us with the process, both logistically and emotionally.  Anyway, we shared with her Charlotte's story as well as the resources we are currently utilizing.  She asked about any fears or concerns we might have, said that it seems like we are on the right track and have access to very good resources (thanks to ASK and our fabulous medical team) but agreed to follow up with us in a week or so just to check in.  We also got her number in case we had any further questions for her. 

I really appreciated it.  As much as we like to complain about insurance companies (and I know I have done my share on this blog), Humana has a lot of resources like this available for their customers.  They also have an on-call nurse available for questions about medications and medical procedures.  I can imagine that if we didn't have access to our current resources and/or the knowledge and support system that we have right now, this service would be really valuable to us right now.  Her manner on the phone was very supportive and comforting.  She seemed to be very good at her job.  Nice to know that some of our premium goes to more than just paying out claims or filing denials...

I guess that's it for now.  Another busy day tomorrow.  I miss work.  I miss it a lot.  This is NOT a normal lifestyle for me.  That being said, I know that if I tried to go to Romp n' Roll and teach, I would probably be a mess and wouldn't be a very good instructor.  If you are part of our RNR family, please take the time to thank our employees (especially Annette, Samantha, Emily, Lauren, and Margie) as well as the crew at the West End and Midlothian stores who have been helping us keep it all together.  While you're at it, don't forget to register for your winter classes or birthday parties (wink, wink!). 

Have a good (dry) weekend, everyone....

Rachel (Charlotte's Mom)

Happy Easter

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

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