Treasure Ruby

One year ago today, a sweet 12 year old girl named Treasure Ruby passed away. She was such a happy, kind, humble girl. She requested that everyone at her funeral stand and sing (with the actions) "Once There Was a Snowman". In October of 2007, she told her mom she didn't feel like herself. She felt really clumsy. Her mom watched her walk to school and was shocked to see that she couldn't even walk straight. She immediately called the doctor and took Treasure in the same day. The drs ordered an MRI, which showed she had a diffuse intrinsic pontine glioma (dipg), which is a brain stem tumor. These tumors generally affect children between the ages of 2 and 10. (Treasure was 11 at the time of her diagnosis.) When children are diagnosed, their parents are told that it is a terminal diagnosis with the average life expectancy of 9-12 months from diagnosis. They generally do chemo and radiation to shrink the tumor, but because of the position of the tumor (in the brain stem) they are inoperable. Part of the treatment involves steroids, which causes the children to swell changing their physical appearance. Although the initial treatments generally reduce the size of the tumor and it's effects (it's in the brain stem, so it affects all of the body), it just buys them a little time. Once the effects return, there isn't much left to do. It is sooo heartbreaking. I was so shocked when I heard about Treasure's tumor. I remember saying to Treasure's mom, Trudy, "I would be so devastated I wouldn't have the strength or energy to even get out of bed. I'd be so depressed and cry everyday." Trudy wisely and bravely reminded me, "You can't LIVE like that." She told me they were going to just pray, hope, and trust in the Lord that his will was best. The last time I saw Treasure alive, she was in a wheelchair. Her physical appearance was so altered that at first I didn't recognize her. She was still happy, and upbeat. She was still a beautiful girl. She told me about school and how she was in denial about needing a wheelchair. She was so strong and brave.

I have since become aware of many other children who have this same tumor. One little girl, Mara Adams, passed away just a couple of weeks ago. She was only 6. Another little girl, Sadie Huish, was diagnosed in March of this year. She is only 5! She has endured and continues to endure treatments that would be difficult for an adult to endure, and yet she is so valiant and strong! Reading the blogs of these families is inspiring. They, like Trudy, are so courageous and tough.

I just wanted to take the time to honor Treasure and all the other brave souls who battle this horrible disease. I also wanted to make people aware that it's out there. Most people don't know anything about it until it affects their own family or friends. Awareness is so important in the fight against any terminal illness. The more people who know about it, the more people that will help raise money, fight for research, etc. Children shouldn't have to suffer and die like this. WE need to push for research. We need to "get the word out". Sadie's family has sent out hundreds of wristbands for people to wear to help raise awareness of this "monster". I wear mine daily. If you're interested in wearing one, just click on Sadie's link on my page for more information. If you google this disease, you will find pictures and stories about soooo many little ones suffering and others who have already lost their fight. It will touch you and affect you... and hopefully inspire each of us to do our part to fight for a cure!