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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