Friday, December 19, 2008

Life or death.

Good morning! Today is a two-parter. First, I want to remind everyone about the Ridglea Round Up on Saturday night. Please come out and enjoy some great music. Just by being there you are supporting childhood cancer. These bands are all donating their time to try to make a difference in our lives. Let's show them our support. More information can be found at Please join us on Saturday night.

Last night was very interesting. As this year has gone by, Sydney has learned to read better and better. There is almost nothing that she can't pick up and gain an understanding of. This can be an issue when the majority of the paraphernalia that exists on my desk is neuroblastoma in nature. This is especially a problem when the majority of the marketing material that I have there focuses on the gruesome facts of neuroblastoma. This is even true in the cookbook.

Last night Sydney picked up the new cookbook and began reading. As would any child, she wanted to read anything that was near her picture. This meant that she read her story. Although she has lived every inch of it and more I don't think she ever grasped what it all meant. She knew that she had neuroblastoma. She knew that it was a horrible cancer. She knows that she is a survivor. She know that it was the medicines that she received that caused her hearing loss and thin hair. She knows that the scar across her belly is from where they took the tumor out. Up to this point in time it has always been very matter of fact for her. We have always been upfront and honest with her but have obviously withheld some of the most gruesome of facts (such as survival, etc.) from her. We felt that was an unnecessary burden she did not need at her young age. Additionally, until this point in time we did not feel that she could necessarily process the information.

Well, last night, after reading her story and some of the facts about neuroblastoma in the cookbook it began to hit home for her. On some level she began to understand the real facts and how lucky and special she was. We ended up spending about 30 minutes with her answering questions and talking about it. It wasn't an easy discussion. Some questions were benign like, "How did the cancer make it so I could not walk?" or "Was the tumor as big as my tummy as big as my scar?" Other questions needed to be handled far more delicately. Like, "Do many kids with my cancer go to heaven?" We have never hid anything from her and have always been open and honest but this was one of the more difficult times we have had. She has begun to truly realize that when she hears or reads "life or death" that it truly means "life or death." It is a burden I which she never had to carry.

It is one that I wanted to carry for her forever.

That is my purpose.

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