Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.

Monday, February 21, 2011

Has It Been 5 Years Already?

It seems like only yesterday we were staying at the hospital for Rebekah's last set of treatments. Many of you were "there" with us. It's now been just over 5 years.

We just started the cycle of appointments that will be the end of her main "follow up" period. She will always be tested annually but the big tests every few months will be done. The next 30 days see us going to the hospital and doctors about 8 times. Today Rebekah and daddy went to get a Chest X-Ray and Panorex of her jaw. Rebekah did OUTSTANDING! She stayed perfectly still for all three of the pictures they had to take including the long Panorex where a machine has to completely encircle her head taking a 360' picture.

We have been to different hospitals recently with mommy's issues but going back to Emanuel is like going home. It is strangely comforting. Every where we turned around nurses and other hospital staff were coming up to us saying "Hi Rebekah" "You have gotten so big" and "You look so good!" Most of them daddy didn't even recognize but they knew Rebekah.

Daddy kept trying to remember how we felt when we were first in the diagnostic imaging department in April of 2005. He couldn't do it very well until he saw the fear deep in some of the eyes of a couple of parents, then it came back with a rush. As if she also remembered Rebekah kept telling other kids there "It okay, it be alright."

When the radiology tech came to get us Rebekah proudly grabbed his hand and led the way through the hospital (her tests had to be conducted in the Emergency Department way away from diagnostics) until we got to the doors that require a code to get in. Rebekah looked at him and said "You do" and he opened the doors. As if the hospital map was burned into her memory Rebekah continued through the maze of the back of the ED to the room where the machines were and marched right in. She pointed to the spot on the machine she has to look while she stands still and asked (ordered?) the tech to put one of his stickers on that spot for her to look at. "Sticker there please" she said. When we were done he offered her another sticker out of the sticker box and she said "No thank you - big box" and pointed to the box up on the counter where the bigger toys were. She does remember the important things!

After following Rebekah back through the maze (and stopping to say hi to a few more staff and other kiddos she came across) we were back to the van and on our way home. Rebekah loudly proclaimed "I DONE NOW." We hope so baby, we certainly hope so.


Monday, February 14, 2011

In Loving Memory:
Gage Dole (February 14th 2011)

6 years ago three little kiddos, Gage, Josh and Rebekah started the Ewings Sarcoma battle together. All about the same age, all at the same hospital, all about the same time. Until today, all three had survived.

Off all of them Gage and his family have been through the worst of it. Joshie has a trach and Rebekah is brain damaged but each of their parents still get to hold them tonight. Lauren and Trux don't get to hold their little angel any more.

Other than sharing such a horrible experience together we were not that close to Gage's family but nonetheless this strikes us hard. Our prayers and thoughts go out to Gage's family. Please share yours as well.

Gage's Blog

The beautiful white rose that has touched so many of us in so many ways is by and used with permission from Australian photographer Lisa Hocking. Please see her blog and thank her for its use.