Can't Sleep

I can't sleep so I just thought I'd take a moment to honor those people who have given to Caring Bridge in honor of our girl.  You can see these folks listed in the TRIBUTES section of Charlotte's page.  Thank you!  I don't know where our lives would be if it weren't for Caring Bridge.  It is our lifeline to our circle of support and it allows us to communicate with people across the globe and share our story. 

I know I should rest but sleep will not come. 

The CJ's Thumbs Up Foundation fan page on Facebook has jumped from less than 100 fans on Thursday to over 600 fans!  Wow.  And I watch the Caring Bridge ticker grow by the hour (so it seems).  As distracted from the rest of the world as I feel right now, I have this huge urge to move forward with this foundation and capitalize on all the good will and positive energy.  Is this "the purpose" in all of this mess?

There are so many more of you out there to thank.  I will never reach everyone personally. Know that we love you simply because you have taken the time to be a part of our story.  That's what it's all about.  (Not, contrary to popular belief, the Hokey Pokey).

Fun Fact: Did you know that the Hokey Pokey was the Macarena and Electric Slide of its day?  It was created as a group dance at a resort in the Catskills.  There's your bit-o-trivia for the day.

Ok, I think I'm getting punchy.  Maybe I can drink/drug myself into a slumber. 

Rachel

For Richer, For Poorer, In Sickness and In Health...

It's been a good day so far.  Charlotte is resting peacefully and watching the Backyardigans.  She's not too talkative and doesn't have much of an appetite but otherwise seems to be a-ok.  The tremors actually seem to have lessened significantly and she is not in any pain. 

Auntie Retta has been here since we came up from recovery and just left a little while ago.  She visited with Charlotte (and us) for a while.  It was good to talk, laugh, sing, share stories... drink coffee...

Roger and I got out for a little fresh air and a walk.  We sat in the garden at the Museum of the Confederacy (have you ever been there?  It's a Richmond treasure!) and talked and cried and talked (and cried).  I think that emotionally we are very much on the same level and in the same place and that is a good thing.  We're not in a great place but at least we are there together.  We talked a lot about what our life may look like in the near (and far) future.  Definitely more near than far.  I am so glad we had that time together today.

A week from today, Roger and I will celebrate 12 years of marriage.  While we may not be in a celebratory mood, I think we do have much to celebrate.  This year has definitely made the whole "for richer, for poorer, in sickness and in health" thing pretty real.   At the risk of sounding schmaltzy, I wouldn't pick anyone else to have on this journey with me. 

I have had many favorite scriptures floating around in my head these days.  One of my all time faves, the 8th chapter of Paul's letter to the Romans, was quoted by someone in the guestbook.  My favorite part of that chapter (verse 28): "And we know that all things work together for good for those that love Him and are called according to his Purpose."

Another favorite that has been on my mind was read at our wedding (from Ecclesiastes 3):

To every thing there is a season, and a time to every purpose under the heaven:

A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;

A time to kill, and a time to heal; a time to break down, and a time to build up;

A time to weep, and a time to laugh; a time to mourn, and a time to dance;

A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

A time to get, and a time to lose; a time to keep, and a time to
 cast away;

A time to rend, and a time to sew; a time to keep silence, and a time to speak;

A time to love, and a time to hate; a time of war, and a time of peace.

I think that just about sums it up. 

Whew.

I plan to stay here for another few hours and then I will head home for some rest and reprieve.  I definitely feel more at "home" where Roger and Charlotte are but I know a good night's sleep in a good bed will do me a WHOLE lot of GOOD. 

We are still looking at going home sometime tomorrow.  Not really sure when that will be.  Of course, the updates will keep coming.

Love and HUGS (I'm stealing this line from Sherry!) :-)

Rachel

Out of Surgery

CJ is out of surgery and in recovery.  She did fine and the shunt is in.  Dr. Tye said the pressure was far more than he expected considering how functional she was.  Just like when we realized how large the original tumor was. He expects us to go home tomorrow sometime.

The shunt comes out of the brain, runs under the skin down her chest, and drains into her stomach.  She'll have a bulge on her head where the valve is.  I tried to talk to her about what Dr. Tye was going to do.  I think she at least had a pretty good grasp of the fact that the thing going in her head is going to make her head feel better.

Now to get her home and make plans for the next month or so.

In Surgery

Just a quick update to let you all know Charlotte was wheeled into surgery at around 8am.  We sang/choked out Frosty The Snowman to her beforehand and she was talking the ears off of anyone who came by.  Then the happy juice kicked in, they took her away, and we cried some more.

Update

Our Friday afternoon/evening consisted of lots of family time.  We watched some movies and Charlotte went to bed fairly early.  Roger and I tried to sleep but it was pretty fitful.  Lots of tears.  We were both wide awake at 3 AM.  Heard Charlotte stirring.  She didn't seem to be in too much pain but she was whimpering.  Soon after, Roger went to pick her up and she was very stiff with her eyes wide open.  We are pretty sure she had a seizure.  The event only lasted about 45 seconds.  We called MCV emergency immediately and the neurosurgeon on call told us to go ahead and bring her to the ER. 

Once we got to the ER, she had another seizure that lasted about the same amount of time.  They drew lots of labs and we saw the Pediatric Neurosurgery Resident.  He was up to speed with all the recent events and recommended another CT.

Now we are up on 7 East (Home Sweet Home....oh how we've missed it).  She has been resting comfortably and they have let her eat soft things (applesauce, etc.) just in case she has to go in for surgery soon.  We are just waiting to hear the final decision from Neurosurgery.

Thank you to everyone for your wishes, prayers, and words of comfort.  Although we are not communicating much with everyone directly, we are feeling the love. 

I mentioned this on Facebook earlier, but if anyone in the Daytona Beach area is available, it would be great for you to reach out to my parents.  I think my Aunts (mom's sisters) are trying to get there from S. Florida soon but I know they would appreciate the support.  I'm not sure what they need right now.

To the rest of our family: thanks for the calls and words of comfort.  We know you are grieving too and frustrated by the distance between us.  We love you!

The original plan for the weekend was that Roger had a Southern Horizon gig up in Warrenton tonight and Charlotte and I were going to tag along...just so we could all be together.  Obviously, these plans have been scrapped.  Sigh. 

That's all for now.  We are in 718 at MCV.  Healthy adult visitors are welcome.  More news as we have it. 

Rachel, Roger, and Charlotte

To Our Family (if you are reading this, you are family),

The MRI affirmed our worst fears today.  The tumor is still growing in Charlotte's head despite chemo and radiation.  The more urgent problem is that the tumor is once again blocking flow of the ventricles.  This is causing hydrocephalus which, in turn, is causing swelling in her brain.  This is the source of Charlotte's head pain and the tremors are probably a result of increased tumor growth.

We have few options.  One option is a shunt which will, at most, buy us some quality time with her and ease some pain.  There are very few chemo options.   Most of the more aggressive options can not be done with a shunt or can not be done for weeks after a shunt has been placed.  Anything that is left has never been attempted in someone Charlotte's age so it's basically a crap shoot.  All the Dr.s and Nurses on the team are communicating back and forth including the MD Anderson team.

Both of us agree that we want Charlotte to be in as little pain and experience as few side effects from any medications as possible.  We also feel the urgent need to make sure she gets to Disney World on her Make-A-Wish trip as soon as possible so whatever we decide to do, it will be toward making her as comfortable and "functional" as possible so that she can actually enjoy it.

This has been a very painful day.  We have placed everything else in our lives on hold for at least a few days.  As far as I know, Romp n' Roll is covered.  We have a stocked pantry and we are at home.  Our plan for the next few days is to spend some quality time together as a family and determine our next step.  We ask that you respect our need for privacy at this time.  You are welcome to call, send an email, or sign the guestbook.  Please know that we probably will not answer the phone or reply right now.

We can't tell you how sad we are at the moment and we know many of you will be hurting as well.  Charlotte is a very special child and has touched so many lives.  We know you might be feeling helpless and are desperate to do something, anything, to help us.  Your notes here on Caringbridge and Facebook are very much appreciated but the main thing you all can do is take some of that positive energy you've been aiming at us and turn it on each other. Hug your children and love each other.

We love you,
Roger, Rachel, and Charlotte

Scanxiety

Well, I'll start with the good news because that is the easiest.  We received a check last night from the ReeseStrong Foundation for our share of the 5K race and lollipop run.  We got a big-ol-honkin' check for $6300!!! Wow! We were just amazed!  Reese's family got a check for the same amount.  We are so grateful for everyone in the community who helped with this effort, including the sponsors, families that participated, and most especially to Randy and Kristin Mudd as they were the primary energy and force behind this effort.  Big thanks to everyone who played a role.  There will be an article in the Mechanicsville Local with a picture of us receving our checks.  Now I just have to find a giant ATM where I can cash it (ha ha).

In other news, the CJ's Thumbs Up Foundation momentum is picking up.  We have a small advisory committee formed that will be meeting in the next few weeks.  We are also working on a logo, website, and other official "stuff".  If you are on Facebook, you can become a FAN of CJ's Thumbs Up Foundation.  More news to come soon.

My parents made it safely back to Florida and my mom is following up with her doctor today.  She seems to be doing fine since her hospital stay so hopefully that will be something I don't have to worry about.

The last few days, Charlotte has been continuing to have difficulty with movement and mobility.  She has been sore at night, sometimes waking up in the middle of the night telling us her head/legs/arms/ something hurts.  Ibuprofen seems to help her go back to sleep.  Roger took her to the doctor today for her Velcade.  The doctor said her valproic acid levels are actually fine so it's not the medication that is causing these symptoms.  She's also having some kind of pressure/fluid behind her eyes causing some strange eye movements.  They prescribed a steroid to help reduce swelling.  There's not much more we can do before tomorrow but here we are again.  MY HEART HURTS.  If I thought I had SCANXIETY before....man, is it pounding away at me now.  Yes, I am fearing the worst.  I am still hoping for the best but it is turning out to be very difficult right now.

Please direct your energy towards whatever positive vibes you can muster for Charlotte.  We need prayers and good thoughts in the worst way right now.  I am actually heading out to a get-together with some friends that has been planned for a few weeks.  Boy, do I need it! 

I apologize in advance for any distracted behavior or anything that doesn't get done in the next week.  I just can't do it.

On that note, we DO need a babysitter on Sunday, probably from around 8:30/9 until the early afternoon.  Roger has a gig in the VA Beach area (overnight Saturday-Sunday) and I need to teach and help with parties at RNR.  If anyone can help, please contact me directly via email. 

Rachel