Whirlwind Weekend

Saturday was busy with lots of visits.  We went to see Charlotte's godparents (the Walkers) for brunch.  They live on the Richmond Marathon route.  In years past, Roger has been a runner in the marathon and I have always been sure to make a stop at their house.  They are at mile 22 so it's a pretty key point in the race.  The runners need lots of encouragement.

We got there just as the lead runner was coming through (just shy of 2 hours into the race).  He was the leader by a LOT!  After some breakfast, we did lots of visiting.  Roger and I took turns being inside and wandering outside to see the racers.  Roger said it was very bizarre to be on the sidelines and cheering folks on.  At one point, both Roger and I were out watching the crowd and I just happened to see Dr. Tye running down the road.  When I realized it, Roger and I both shouted hellos.  He saw us, came by, and gave us both a hug!  What a guy!  How he has time to train for a marathon with everything else going on, I will never know.  We immediately came in and told Charlotte who we had seen and she just beamed.

Then it was home for a bit and we were off to Wyatt and Heather's house.  Wyatt had not seen his "girlfriend" in months thanks to our journey to Texas, their own travel plans, illnesses, and other unforeseen events.  It was nice to have the two of them together.  They built gingerbread houses and then watched a movie together.  We got treated to yet another wonderful meal.

THEN it was off to Lake Anna.  We stayed at Bob and Meryl's cabin (also known as Shangri-Log) for the evening.  The goal, of course, was rest and relaxation.  Charlotte had an odd night, though.  I think she ate too much (she had been shoveling in the food) so when she went to bed, she said her tummy hurt.  She did sleep for a little while but Roger and I both got up with her multiple times as she was "muttering" in her sleep.  Then she was awake as early as 2 AM and didn't seem to want to go back to bed.  She also was not content to read by herself and wanted company.  So Roger and I took turns with this (but pretty miserably as we were both tired).  We did finally both get some rest and then it was morning and the coffee appeared (magically!)

We were treated to another wonderful breakfast and Charlotte downed bacon, eggs, and toast.  Then we hung around the cabin, taking in the beauty of the lake and the woods.

Around 2, we set off back towards Ashland, stopping at a horse barn where our friend Kelly had offered a ride on a very mellow horse.  The horse's name was May and she was beautiful.  Charlotte didn't want to ride for very long (she rode with daddy) but Roger got to spend a little time riding.  Then we got to feed the horses (they like peppermints!  Who knew?),  and then we got a tour of the barns and saw a few of the other horses. 

From there, we stopped at Romp n' Roll to take care of a few things, ran into Kolbey, and we all went to Casa Grande for dinner.  I guess this was our "anniversary dinner".  Yes, today is Roger's and my 12th wedding anniversary.  Kind of surreal given the circumstances but we are certainly celebrating the fact that our relationship is strong enough to withstand even this kind of stress.  I am appreciative of my "other half".  Anyway, I had a chimichanga  (shout-out to my bridesmaids...you know what I'm talkin' about!) :-) and Charlotte ate an entire quesadilla and some chips!

With all this eating, i am SURE I gained about 5 pounds just this weekend alone!  Yikes!  But it was all yummy. 

We are now home, taking care of laundry and catching up on emails.  Charlotte is asleep and Roger is watching football.  Whew!  What a weekend.

Tomorrow is a meeting with Drs. Tye, Massey, and Bitsko to discuss some further plans and try to get an idea of what is coming in the next few weeks.  Tuesday we have a trip to the National Zoo scheduled (DC!!) and there are some other small events on the horizon for the week.  I am hoping that we get the Make-A-Wish stuff resolved by tomorrow. 

I can't believe Thanksgiving is almost here. 

- Rachel (Charlotte's Mom)

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)

CJsTUF on FaceBook!

CJ's Thumbs Up Foundation fan page on Facebook is over 1000!  Fabulous!

Also, for those not on Facebook, here's a link to Beth's pictures of Mary Poppins yesterday.  Enjoy!

http://bethharrisphotography.zenfolio.com/marypoppinsvisits

What A Long Strange Day It's Been...

First of all, it was a long night.  After a mid-afternoon nap, Charlotte was "not tired" at bedtime.  We had watched the new Tinkerbell movie AND Cars and took her up to bed but she wanted to read books.  We let her read with her big pile of books and Roger and I went to bed.  We just listened to her singing and reading.  She stayed awake till after 3 AM!  Roger and I would go to sleep and wake up every hour or so, taking turns checking on her, occasionally reading a book with her, and listening to her read. 

Needless to say, she slept in until about 10 AM.  She dressed in her Tinkerbell outfit today and we prepared for our visit from Mary Poppins.  Unfortunately, the shock of the morning came when I went to put Ms. Poppins' "note" on the door, opened the front door, and was SHOCKED to find our cat Punkin dead on the front porch.  Yes, you read that correctly.

We don't use our front porch very often and just hadn't noticed him there but Roger thinks based on his "state" that he had been there a few days.  It looks like he just crawled up there and died.  No trauma, no injury.  I yelped and Roger came and did the noble job of disposing of him.  We buried him in an old pillowcase in the back corner of the backyard.  SIGH.  He was only about 5 years old, I think.  We had taken him and Tigger in from our friend Holly a few years ago. 

Can we cut a break?  Seriously. 

Our visit from Mary Poppins was great, though.  It has all been chronicled by Beth Harris who came and took pictures for us.  A link to the pics will be posted soon.  We had tea, cookies, sweets, and Charlotte ate plenty of jelly (both with and without bread).

Other than that, we've been laying low with the dismal weather.  We have been lining up some visits and events for the next few weeks.

One event of note for our Fredericksburg friends: I spoke with Rev. Kent Rahm at Trinity Episcopal Church in Fredericksburg and he is helping to organize a prayer service for Charlotte next week.  This will be a service of Compline (an evening prayer service) at 5 PM on Saturday 11/21.  Trinity Church is on College Avenue, directly across from Mary Washington Univ.  Anyone in the Fredericksburg area is invited.  It will be a very informal prayer service with a simple reception to follow.  This was the church in which Charlotte was born and baptized so our Trinity family is still very special to us.  We haven't seen many of these folks in almost 2 years although I keep in touch with a select few via email, etc.  I am glad we were able to organize this.

In other news, our CJ'S Thumbs Up Foundation fan page on facebook will hit 1000 fans today!  Hooray.  The advisory council will be meeting next week to work on some orgnaizational steps toward incorporation, etc. so I am very happy this will happen.  It gives us a focus for our energy (as well as everyone else's energy).

It feels very strange to be out of our normal routine.  I am enjoying being at home with Charlotte and Roger but I definitely miss my old routine.  I miss the kids at RNR and I miss teaching.  I am struggling to find elements of normalcy in each day because that helps me manage the sadness.  It will be nice when the weather clears a bit.  That will help us get out a little more, I think.

I guess that's all for now. 

- Rachel (Charlotte's Mom)

Thank YOU!

At the risk of sounding like a broken record, I will say again: THANK YOU!  To all of you who are supporting us in so many ways.  Many have used the analogy of a large circle of support in which we can safely fall and I feel that we are there.  I am still sad.  Oh man, am I sad!  But I feel safe and secure and able to BE in my grief because I know you are all out there to catch me.  It helps a little.

Thank you for all the loving messages today.  Thank you for the visits.  Thank you for the food (more than enough and oh so yummy).  Thank you for the coffee.  Thank you for the hugs.  Thank you for the prayers.  We do not have many physical needs right now.  Just love and mental support. 

I am not sure what God's plan is in all this but I always believe and still believe that God has a plan for each of us.  Somehow, Charlotte's journey is touching SO many people.  It is amazing.  I still can't make sense of it all but I have faith that we will be guided by the Holy Spirit to be at peace and make the best of what comes our way.  That is my prayer.

Charlotte has been eating and resting all day.  The flow of doctors, nurses, and residents has been steady.  We have met with all specialties concerning her care and she is set for shunt surgery first thing tomorrow (probably between 7 and 8 AM).  The whole procedure, start to finish, should take about  2 hours.  Dr. Tye will be performing the surgery. 

I am on the "night shift" at MCV and Roger will be here in the morning as well.  I know Auntie Retta is planning to be here too. 

Charlotte's appetite has been great.  She is currently munching on chick-fil-a nuggets (can't get enough).  She's also had quite a few homemade gingerbread men (thanks, Eleanor!), mac and cheese, some chocolate croissant, applesauce, cheesburger, tater tots, and plenty of ketchup.  Gotta love the appetite inducing steroids!

She has watched a few movies today and slept for a good portion of the afternoon.  I haven't slept much but I will try (I promise) tonight.  As old veterans to the floor, we did our best to get one of the "good" parent beds (as opposed to the 2nd rate la-z-boy wannabes that fold up on you at the slightest movement).  That should help the effort, at least. 

I don't have much to say so I will close.  Hug your babies, count your blessings, and spread the love!

Rachel

Sigma Alpha Iota Symphony

Thanks for all the words of kindness and inspiration. Roger's post yesterday was pretty powerful, I agree. Now it's my turn.

Another thing that has been wandering around in my head is the Sigma Alpha Iota Symphony.  A little background:

In college, Roger was in the men's music fraternity (phi mu alpha sinfonia) and I was in the women's music fraternity (sigma alpha iota).  And yes, it was a FRATERNITY.  Anyway, the social circles in which we ran basically created the opportunities that allowed Roger and I to become friends and, later, a couple.

SAI was a huge part of my college life.  Not only are my best friends from college also my sisters but my involvement in the organization allowed me to develop my leadership skills which, in turn, helped in my life beyond college.  Although my formal involvement with SAI has waned over the years, the concepts of our sisterhood stay with me.

A few days ago, I started replaying in my head our Sigma Alpha Iota Symphony.  This is a poem/credo that I think frames our values as an organization and as individuals.  One of the first things we learned as pledges was the SAI Symphony.  The elements of the poem have different interpretations to each member but I often liken it to a scripture.  It's an inspirational piece of wisdom by which you live your life.

Since it has been on my mind, I thought I would share it with all of you (and no, I am not breaking some vow that will put me on double-secret probation by sharing it.  This is kind of "public knowledge" fraternity stuff...).  Shout out to my Sigma Chi SAI's: "That's NOT the secret knock!!!"


Anyway, here it is...

The Sigma Alpha Iota Symphony

To study and practice the goodness of life, the beauty of art, the meaning of music.

To sing the song of sincerity and universal peace.

To speak the words that build, that bless, that comfort.

To play the harpstrings of loving kindness, tolerance, appreciation, and genuine gratitude.

To strive for the joy of simplicity, for the noble.  To be faithful over a few things.

To listen, to be still, and to know the harmony from within.

To falter never in seeking loving service, wisdom, and understanding.

In a word, to be loyal to Sigma Alpha Iota and her teachings; to find joy, hope, and inspiration; to remember that "every good gift and every perfect gift is from above" and "whatsoever ye do, do it heartily as to the Lord and not unto men."

And again to practice.

This is to be our Symphony.

 

-Rachel (Charlotte's Mom)

EPIC PART II (Kind Of...)

We are home from the hospital.  Charlotte is doing well.  She and Daddy are settling in on the couch in their Bronco outfits getting ready to watch Monday Night Footbal.  Below is Roger's post that he has been working on for the majority of the day.  Read on...

Not really Epic Part II but still long.

“Everything is on its way to somewhere else.”

Here we are looking at the probability of going home soon.  CJ woke up about 5:30 and the moment she saw me, she reached out and wanted to kiss my nose!

She's doing very well this morning, eating well and all that.  The only side effects of the surgery so far are an eye that pulls inward a little and a very stiff neck.  Neuro has already been up to see her and they say the eye thing is most probably a little swelling or maybe a nerve got "touched" during surgery.  She moves it well all around so the Doc wasn't too concerned and they'll be back to check up on her later.

The stiff neck was expected.  I've done my poor man's physical therapy on her head and left hand a little to try and help.  She doesn't necessarily like it but she tolerates me interrupting her Mary Poppins or Curious George or whatever she's watching at the moment.

They sent up her dose of steroid and it tasted awful (I checked).  So I didn't make her take it.  We have some good tasting stuff at home that we had brought down because one doctor said we could but the pharmacy refused to let us give it to her (I mean, what's it going to do to her?).  I appealed to them again and they finally agreed to let us give her ours.  Rachel had to turn around and go back home to get it but I think it's worth it to A) get it in her to help with the healing of the surgery, and B) not turn her taking it into a crisis situation. So everything is cool at the moment.

Miss Heather, Wyatt's mom, is bringing CJ a milkshake-shake this morning.  She got to talk to Wyatt on the phone for a bit this morning which was really nice.  He's certainly talking a lot these days.

Now for some heavier stuff...

As things progress, I think it's typical for people to fall into despair.  This is a horrible situation and both Rachel and I have cried more than we thought possible.  Personally, I have only "broken down" a couple times since we got the news on Friday but there seems to be a constant drip from the eyes like a faucet that can't be completely shut off and my heart constantly aches.  I know our friends and family are feeling awful as well.

But, and this is very important to me, as sad as this situation is, we can't despair. My spirituality runs slightly different than most but it's still very deep.  I am thoroughly convinced that things happen for a reason.  There has to be something holding the universe together; otherwise, according to chaos theory and quantum physics, there's no reason why we shouldn't all suddenly turn into random objects like ashtrays and lawn mowers or have VWs growing out of our heads at strange angles.  We have no idea the reasons but they are there.  My latest mantra is: Don't try to find the reason in the darkness of the moment.  The reason will show itself eventually.  Right now there is no reason. It's my version of faith.

That doesn't mean we're sitting back and just letting things happen.  We are still discussing options with Dr. Kahn, Dr. Wolff, and Dr. Tye.  They are reaching out, discussing CJ's case with other colleagues and we will be seeking out alternative therapies like acupressure and chiropractic if for no other purpose than to manage any pain.  The absolute main goal is for Charlotte to be as comfortable and functional as long as possible.

We appreciate the occasional message letting us know of treatment options or a doctor who does a certain kind of therapy but rest assured, between all of our medical and therapeutic professional friends, we have explored possible avenues everywhere you could think of.  Dr. Kahn and Dr. Wolff especially have discussed CJ's case with other Doctors all over the country.  The last chemo protocol and the Proton therapy were both cutting edge research/technology, all with high degrees of success.  None of it worked.  Anything is possible but we're not going to delude ourselves as painful as that may be.

Which brings me back to my discussion on spirituality and the word of the day, "Grace."  It's a word that has been floating around in my brain for quite a while and I'm still digesting it but I feel I'm finally starting to get the slightest glimpse if it's true meaning.  "Kung Fu" is one of my favorite TV shows of all time and it was full of little tidbits of wisdom including one I still use.  "When a man finds his true path, Heaven is gentle." That, very loosely, is what grace means to me. It's that Michael Brecker concert back in 1988 on the University of Miami patio that reached deep inside me and showed me what power music could wield.  It's that bartender at the Invershin Inn in Scotland who pulled out a guitar and reignited my passion for music.  It's the "Home" feeling I get when I'm teaching at Romp n' Roll.  It's the conviction I feel that CJ came here intentionally; that she chose us to be her parents because of some purpose way beyond our ability to comprehend. It's asking the network for a pony ride for Charlotte and getting 50 offers in an hour.

Here's something else...In Robert Schimmel's book, Cancer on $5 a Day (Chemo Not Included), he mentioned his son who had died from cancer some years before. He said his son was an old soul and that he believes they had known each other before.  It's easy for me to imagine that for Charlotte considering how easily she learns things and the amazingly deep connection CJ and I share but the one thing keeping me from truly believing that is the pure wonder with which she seems to view everything.  Like a very young soul.

So my take on it is that she is a "wondering/wandering" soul who came here this time to learn stuff and to touch peoples' hearts.  And she has done both extremely well.  I know I'm biased and (trying not to sound trite) that ALL children are special but I look at all the people Charlotte has touched, even those who have only heard about her or just seen a photograph, and I can't help but be convinced that she has something extra special about her.  How many of you fell in love with her the moment you saw/met her?  It's more than just chemical or visual.  She has SOMETHING about her and I can't tell you how privileged (full of grace?) I feel to have been allowed to be her parent; to watch her “collect” people’s hearts and see that special something in action.

And because of all the hearts CJ has touched, I'm fully convinced that CJ's Thumbs Up Foundation is going to be absolutely huge.  She will continue to collect people’s hearts long after she’s gone on to the next part of her journey and families in similar situations as ours will have at least one more place to turn for support.  Could that be a reason for all this? Odds are it’s just another step towards somewhere else.