Wednesday, June 30, 2010

Milestone and Ranting

We reached a milestone. William experienced his first middle of the night vomit. It wasn't too fun for all parties involved.

Today's focus has been trying to control the nausea and bone pain. He hasn't had much appetite so I left well enough alone. His main source of nutrition today was a whole bag of buttery popcorn. William remarked excitedly, "Hey, mom, popcorn tastes good with chemo today!" We'll see about tomorrow.

Today I was grateful for William's diagnosis. Well, as grateful as I can be. His roommate also has a rare tumor cancer, but the name is something long and very foreign. He was diagnosed in April and today the doctors basically told the family that more tumors have appeared and they don't know what else to do as the course of treatment doesn't seem to be working. Through tears, the grandma told me the doctors had basically given up. The family is now seeking additional consultations with doctors in New York where the expert on their form of cancer is located. I also learned that he is their only child. It broke my heart to watch their hearts breaking too.

The ugly secret about childhood cancer is the lack of funding and research because medical companies make more money off cancers that affect a greater portion of the population, i.e., breast cancer and leukemia. The government also generally funnels public funding proportionally to the numbers affected. Fact: Way more adults suffer from cancer. I'm not saying what is fair or not fair or how I think it should be changed. I just think childhood cancer should be against life rules! I don't know that I can change the world, but I know I will more diligently donate blood and support children's cancer organizations, especially neuroblastoma.

2 comments:

  1. This is where you CAN be concrete about the future--way to go Julie. We will join you. It took Susan Komen to put a face on breast cancer-and I even saw pink lilies at the garden center with breast cancer donations attached. I had heard about neuroblastoma before Will, but only because of my ECSE background--have had two survivors in preschool. Love you, Will, the other boys and Ryan today and everyday.

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  2. Julie,
    You have just given us all a way we can help and focus our positive thoughts for William! I so admire your courage and grace, and this blog is a gift to all of us who care about William and your whole family. Sending healing energy and love your way,
    Mrs. Jones

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