Tuesday, December 29, 2009

Charlotte is still here, sort of.

She's reacting less and less to questions and her breathing goes through these periods of slowdown and then it comes back up. I'm sure this will increase.

Nurse Cathy checked her out today. She said CJ's heart rate is slowing and her body is to the point where it won't take any food/water and wouldn't know what to do with it if it had some. Her blood pressure is very good which means she's in no distress or pain. Cathy confirmed for us that Charlotte would probably pass within the next few days. There will be noticable additions to the website when that happens so that everyone will know without having to read the blog because who knows what shape we'll be in?

Charlotte and I have a certain way of holding hands that I think she got from watching the movie, Wall-E. The concept of holding hands and interlocking fingers became a major theme and Charlotte developed this way of wanting to hold hands with me. I'll assume she did that with others but I'm not sure. Yesterday, she initiated that with me which made my day.

I quite possibly heard her last words the other day as well. I may have already mentioned this but at one point, she actually opened her eyes and said, "Daddy?" (preparing to tell me a plot point from one of her books or videos the way she had done so many times in the last few months)

Just about falling off the chair, I sputtered out something like, "Yes dear?" or "yeah, Baby?" or "Charlotte?" or something like that. I was pretty flustered by hearing her little voice which was raspy from dryness and lack of use.

"Marianna (I think) put on her crown and ..." didn't understand the rest. I asked her to say it again but the moment was gone. Haven't heard her speak since then except to grunt "Mm Hmm" (yes) once when we asked her if she wanted some chocolate milk.

The reading vigil continues and it's become so much more than I ever imagined. I came up with the concept to have voices filling Charlotte's last few days with stories because books/words are her favorite thing in the world. Since she couldn't manipulate the books very well anymore and I knew we weren't going to be able to read to her all day so I figured we'd get other people to help.

What has happened is people from all over, some we've never met before, have come in/Skyped in at all hours of the day and night. Some of you have brought your children and have used the opportunity as a very healthy way to introduce them to the concept of death. Some of you have sent in recordings or videos of yourselves reading stories and the energy of this house has remained. The only thing missing is a Skype from Holland. (Let us know when you're available Karin. Needs to be soon.)

The food, which has become healthier (mostly), keeps coming in and the wine bottles have been multiplying. Rachel and I are determined to bring our physical selves (fat tubs of goo) back up to the level of our spiritual selves (growing ever more peaceful).

I helped with Winter Camp at Romp n' Roll this morning which was great. It was a total parade of cuteness and it was so nice to feel the warmth of the kids when they saw me. Next week we start back big time and I think I'll be taking over some of Rachel's classes for a little while. I think Samantha, Annette, and Emily (who have taken over the lion's share of work at Romp n' Roll) can't give up the responsibility and extra hours fast enough!

Speaking of Emily, she's gone and done a very cool thing. She is a student at Randolph-Macon College in the Drama Dept. and is directing the upcoming production of Alice In Wonderland. She has coordinated with Prof. Joe Mattys to donate all ticket sales to Charlotte's fund!

So go see it! :-) It runs March 17-20, 2010 at the Black Box Theater on R-MC's campus. Tickets are $5. Can't beat it with a stick! I'm thinking we might pick one of those nights to be CJSTUF Night Out At The Black Box. We'll let you know. Call(804) 752-7316 to reserve your tickets. It's a small venue and large crowds are expected every night.

Here's another thing coming up for runners/walkers. For anyone who wants to use the races for fund raising, we will have registrations available for the Ukrop's (What are they going to call it next year?) Monument Ave 10K in March and then more for the Suntrust Richmond Marathon, McDonald's Half Marathon, and HCAVA 8K in November. All those interested in participating who raise $500 or more in pledges will receive their 10K registration free. Not sure what the limit will be for the Nov races.

For the 10K, we will have pledge forms available very soon or you can make your own. Make sure all checks are made out to Charlotte or CJSTUF. For the November races, we hope to be a little more technically advanced. We're working on our own race accesories and everything.

Please let me know if you're interested in participating and what race(s) you want to be in. I'll be doing the 10K, the Richmond Marathon, and probably a few other races during the year. I even want to try the very questionable act of running the Chicago Marathon in October as well.

That's all for now.


  1. Roger and Rachael~ I pray your little Butterfly will have amazing peace with her loving parents with each new hour and God will hold you all in His arms for the rest of your lives! We love you and aare praying with all our hearts! Sweet dreams, sweet CJ!

  2. Dear Roger and Rachel,

    Prayers. God surround and shelter you three with love.


  3. Thinking of you all. I would love to race for Charlotte this March, will switch my donation info over to CJSTUF.


  4. Here is a video of my son reading a story called "Superhero," if you need a filler. http://vimeo.com/2860844 The password is "Zachary." There is another story out there too called "The Bird's Turn."

  5. May God surround the three of you with his love and give you peace.
    Elsa Falls

  6. My heart aches for you ~
    God Bless you ALL now, when it is time for Charlotte to join all the Special Butterflies in heaven...and always.

  7. Always thinking of you and your precious butterfly. Peace be with you.

  8. Heard this song by Celine Dion and thought of Charlotte.


    Fly, fly little wing
    Fly beyond imagining
    The softest cloud, the whitest dove
    Upon the wind of Heaven's love
    Past the planets and the stars
    Leave this lonely world of ours
    Escape the sorrow and the pain
    And fly again

    Fly, fly precious one
    Your endless journey has begun
    Take your gentle happiness
    Far too beautiful for this
    Cross over to the other shore
    There is peace forevermore
    But hold this memory bittersweet
    Until we meet

    Fly, fly do not fear
    Don't waste a breath, don't shed a tear
    Your heart is pure, your soul is free
    Be on your way, don't wait for me
    Above the universe you'll climb
    On beyond the hands of time
    The moon will rise, the sun will set
    But I won't forget

    Fly, fly little wing
    Fly where only angels sing
    Fly away, the time is right
    Go now, find the light

    I only got the pleasure of meeting Charlotte one time and that was at my nephew, Matthew Yagla's bday party. She is such a sweet little girl and she is so blessed to be loved by so many people. It breaks my heart but I know that she will be in a better place, where there is no cancer. God bless you Roger and Rachel!!
    Suzanne Chinn Rouse

  9. We are sending our prayers and thoughts to all of you. Beautiful Charlotte,you are an inspiration to all of us. We have grown to love you and your parents from afar, as if we were right there too. The unbelieve Grace with which your family has allowed us to share in your journey,has given us such unmatched vision. We cherish you and bless you all for this gesture of true unconditional giving. Our lives are changed and enriched,forever. Peace and comfort to you, dear CJ,Rachel and Roger.
    Jane and Bill Lawrence (Gulosh)

  10. You have been in my thoughts and prayers every day. May God bless you and keep you close.

  11. I had only learned about Charlotte in October through some friends at work. They attended a 5K family walk for Charlotte and "Reese". My heart goes out to you and my prayers too.

  12. Sweet Dreams little CJ. May you feel the love and support of the many people whose lives you have touched. My Prayers are with you all and I am so humbled by your positive outlook and wonderful ability to find where GOD's blessings are in the midst of this pain. There are a very select few that I count as hero's if you will. And I have to say that the way you have handled the past year and a half have put you very solidly in my hero's category.

    With love and lots of prayers,
    Tonya Tiffany

  13. I know you can feel the love surround you and hold you close. Never forget how much Charlotte means to so many, how much you both mean to so many. You have been so open, so honest and so true during CJ's illness and I know that has meant so much to so many. Love and hugs ~ Always! Deb Harper


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