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Caitlin’s Story

Welcome to our CaringBridge site. It has been created to keep friends and family updated about our beautiful 5 year old daughter Caitlin (site originated August, 2008, she is now 9 1/2 yrs old!).

"My Story" is the introduction to our CaringBridge site. Click on "read story" to see Caitlin's full story.

Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.

Many of you know that we have been on a quest of why Caitlin has poor vision since last October. After seeing several local doctors, she was diagnosed with Strabismus (Right Exotropia), yet we still could not figure out why her eyesite was weak. Our Dr. referred us over the The Children's Hospital of Philadelphia (CHOP) for further tests. We endured several months of visits and speculation which brings us to today.

Last Monday we met with Dr. Liu, a neuro-ophthamologist at CHOP. He felt strongly that Caitlin had Congenital Optic Atrophy and ordered an MRI to confirm his suspicions.


On July 30th, Caitlin had her MRI. The Dr.'s found a large mass on her right side of her brain and a smaller one on her left, both meet in the middle. This turns out to be the cause of her optic atrophy as well as strabismus - the final piece of the puzzle.


The Dr.'s felt that we were not in a dire emergency for surgery that night, though felt we needed to take care of it fast. With that, Caitlin was admitted to the Oncology unit. They have started her on steroids to help reduce swelling that has occured around the tumor. They speculate that the tumor is benign, though we will know for sure after the surgery. This is a slow growing tumor, which is good. They say it has been there for years.


Friday, Caitlin will get another MRI focussing on her spine. There is a possibility we can go home for a few days, but most likely we will stay put.


If all goes to plan, Dr. Storm will operate on Monday morning. Because of the size and location, most likely he will not be able to remove the full mass. If that is the case, Chemo will be the next protocol.


Caitlin is doing really well for what she is facing. She is getting more comfortable with all of the hospital attention (baby steps) and we see her opening up to the staff with high fives. Thankfully, the mass has never given her much discomfort, which is partially why this has been a long road to solving this mystery.

This has been a lot to swallow in the last 48 + hours. We greatly appreciate all of the prayers, calls and thoughts. The support has been AMAZING! We are so fortunate to be located about an hour away from this facility. The staff has been so helpful and we have met several other families and it helps to share stories.


Grandma Lucas happened to be visiting and is at home with Jakob. Grammie and Grandpa Dickey drove up Wednesday night and spent Thursday with us. It is nice to have a Dr. in the family to give support and give another interpretation of what we are learning.


We will try to update you all as we get more information. Please share this site with anyone we have missed.

Love and Thanks,

Meri and Jim

Latest Journal Update

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Thursday, June 6th, would have been Caitlin's 10th Birthday.  She was just 3 weeks shy of double digits...


We are asking a challenge!  Release pink and purple balloons in honor of Caitlin on her Birthday!  Attach a paper with whatever you would like to say to her or other people to know about her.  On the other side, write:  "Happy 10th Birthday in Heaven Caitlin!  To the person finding this balloon, please visit www.caringbridge.org/visit/caitlindickey and sign Caitlin's website telling us where you found this balloon!"


She will be smiling down on us, can't wait to see if we get any responses :)


Tomorrow, on Caitlin's 10th Birthday, Alex's Lemonade Stand will be doing an all day Telethon on CBS Philly.  Tune in all day, and especially after 6.  You may see some familiar faces ;-)  Tomorrow morning, also, on Good Morning America, there will be several kids raising awareness, one being Caitlin's friend Charlotte and family!  This weekend also kicks off Lemonade Days across the country!  Find a lemonade stand at www.alexlemonade.org and support this great cause!

 

I believe I did not reveal the final Zumbathon amount... over $8,500 was raised to benefit the Pediatric Cancer Foundation of the Lehigh Valley!  Thank you to everyone who contributed and participated at this great event!  We are forever grateful to the support that has been given to this cause!

 

Monday was an amazing day for our Hopewell Family (where Caitlin went to school Kindergarten - 3rd Grade).  Home Depot Came out and did an Extreme Makeover to the school's Habitat garden area!  The area was overgrown and seldom used.  Jakob's whole class was out there weeding and planting and getting totally dirty!  They had a blast!  Home Depot had a huge crew come in with dirt, mulch and plants!  Today, Wednesday, was a great dedication and reveal.  The garden is beautiful!  They delivered a butterfly bench in Caitlin's honor, planted butterfly bushes and the kids painted rocks.  We are honored that we can share space with Michael, another Hopewell angel and childhood cancer child.  They cleaned up around his butterfly bush and added his name in rock too!  Thank you Home Depot (Lehigh Street), without you, we could not have had such a transformation in such a short amount of time.  You have gone above and beyond and have honored our girl so sweetly - Thank You!


The following was read this morning:
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My Little Butterfly

Today a little butterfly flew by me.
I thought to myself where have you been little butterfly.
You come into this world as a cocoon all by yourself and blossom
into this beautiful butterfly and fly off to see the world.  What you don't realize little butterfly as you flutter through your days
Is how you touch those around you in your soft gentle ways.
You don't even realize the wonder and awe you create around you.

She fluttered her wings toward me as if she was waving good-by
As she headed toward the horizon, she looked very happy and content
as she went on her way, as if to say to me "Don't worry, I'll be okay."
That I knew my life would never be the same.
She had left an imprint of all the beauty life has to offer.
I know each time I looked at another butterfly or horizon
I would remember our moment in time when it was only her and I.
I knew I would be a better person all because this little butterfly flew
By me on bright sunny day.


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Caitlin, we miss you more than ever every day.  Everything we do, we think of you.  We love you so much and wish you were here with us on your 10th Birthday.  Love you always and forever!

Mommy, Daddy and Jakob