The Beagley's... & our fight with cancer!: Hats Off For Cancer

Saturday, September 17, 2011

Hats Off For Cancer

Raylee received a Tinkerbell ball cap in the mail from "Hats Off For Cancer." This is a international organization that has given more than one million children around the globe a since 1996. How incredible and creative! What an amazing thing to do. When Raylee received her hat she was smiling and happy. She felt sooooo special. The hat is too big and drowns her, but she didn't care. She wore it proudly, and I wouldn't have expected anything less from her.

We also received a letter from NENA (Neuroblastoma Epidemiology in North America) based at the University of North Carolina Gillings School of Global Public Health. The letter stated Raylee has an opportunity to help provide knowledge about neuroblastoma by being part of a research study. Since Raylee is part of a study by the COG (Children's Oncology Group) she is part of the CCRN (Childhood Cancer Research Network's) registry. This means her name and my contact information will be shared with other pediatric cancer research studies. We will receive additional information about this study soon and then we can decide if we want to be part of it. We basically decided that all these studies will want a part if her tumor to study. We already allowed the COG to have the tumor and the piece from her biopsy. They also have a sample of her bone marrow, bone, and blood. This is one way we are able to help pediatric cancer researchers to help prevent neuroblastoma, find better treatment, or just help the medical professionals understand this horrible disease better. A "horrible disease" isn't the best way to describe what I feel about cancer, I am sure you know I hate it, but to put it into written words will cause me to use inappropriate language. I haven't hated something with everything I am for a really long time. But I really hate cancer! I hate what it did to my daughter, and what its mission was to do! I hate what if does to other people. I hate the treatment.for cancer Andrews how it makes the patient so sick. I hate watching people who are doing things to increase their chances of getting cancer like smoking, drinking, not eating well nor being active. When I see someone smoking I wonder if they really know what could be going on inside of them, I wonder if they really know what cancer is capable of. I want to reduce my chances of getting this, I want to reduce the chances of my family getting this again. Some cancers, like Raylee's, is unavoidable--but those cancers that are avoidable--I want to avoid.

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Neuroblastoma

Neuroblastoma is cancer of the sympathetic nervous system--a network of nerves that carries messages from the brain to all parts of the body. Primary neuroblastoma is a solid, malignant tumor that usually first appears as a mass in the abdomen (most often in the adrenal gland) or near the spine.

About 650 children are diagnosed with neuroblastoma each year in the United States. Two-thirds of children diagnosed with neuroblastom are 5 years old or younger.

(Educating The Child With Cancer: A Guide for Parents and Teachers, Second Edition, 2011, Edited by Ruth I Hoffman, MPH, page 5)

The Native American Legend of the Butterfly

As a gift to His human children, the Great Spirit created butterflies. He took black from the maiden's hair, yellow from the warm sun, and blues from the lake and sky. Once he gathered the most beautiful of colors, He made them into butterflies.

If you want a special wish to come true, whispher your heart's desire to a butterfly. Since butterflies make no sound, they cannot tell the wish to anyone but Him. Being so colorful, the butterflies will easily be seen as they fly to heaven. The wish will be taken by the wings of love to heaven to be granted.