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!

Tag... I'm IT

When you get tagged and you're "it", you have to be "it". There's just no getting around it. It's like when you are double-dog dared to do something. You just have to do it. (Assuming you're playing truth or dare... you don't have to do something JUST because someone adds those words, otherwise.) Those are the rules. So, my friend Kayte (the cool "Eck's File" blogger) posted this in her blog a few days ago. Although I promised to follow suit, I have not. To be quite honest, I'd even forgotten about doing it. Oopsie. But no more! I will comply because now Kayte has threatened to do it FOR me. Yikes! Who knows what SHE finds "quirky" about me. I will probably come up with "quirky" things, while she might post the "weird"... so here goes:

Here are the rules: Link the person who tagged you. http://theecksfiles.blogspot.com/ Tell about 6 quirks of yours. Tag 6 fellow bloggers to do the same. Leave a comment to let them know.

1. I use Word's thesaurus ALL of the time. In fact, I even looked up "quirky" (idiosyncratic, original, unusual, peculiar, odd... to name a few) to see what other words are associated with quirky just in case "weird" really was one. (Even though it doesn't REALLY matter now, since I'm following the rules so Kayte won't have to post my "quirks" FOR me.) I also don't like to use the same, common, ordinary words all the time, so I check the trusty thesaurus to get replacement words.

2. I LOVE playing Backgammon. Some nights when my boys go to sleep and my husband is working, I log on to MSN games and play (is THAT the real reason I can never keep my house clean? I spend too much time playing a silly game?!?!) That'll be our secret (between me and the 2 or 3 people who actually READ this blog!). ;)

3. I'm all about following rules. It's like I believed the adults in my life when I was a kid. (See the beginning of this blog.) My sister even says that I still make all my letters the same way I was taught. You know how in school you get graded for making the letters exact? No deviations? I still do that. Which means that my handwriting is very boring... perhaps my rule-following makes ME very boring too! I do try to break the occasional rule just for the sake of doing it. Like yesterday after Chase dropped his pacifier off the skyride at the zoo, I actually lifted him over the fence to climb up the rocks and get to it! EVEN though the fence was obviously there to keep people out! See, how fearless I am?!? ;)

4. I'm VERY critical of posted signs, or things in print. It doesn't mean that I don't make mistakes myself. I just try very hard NOT to and will correct anything I find. I mean, come on, should the city REALLY send out a letter to inform the dwellers about the "pubic" meeting to discuss road construction?! I think NOT! I'm really bad/ good about noticing those things. In fact, I even took a picture of a sign on the bathroom at the zoo yesterday with the intention of possibly starting a "headlines" blog! Since I seriously notice it that much! :D



If any of you know what an "inconvence" is, please feel free to share. (I couldn't find it in my trusty thesaurus.)

5. I'm very protective of my friends and family. I think some people might call it holding a grudge. (Could that be why I thought the following quote was so funny: "I don't hold a grudge. I put it on a pedestal and worship it.") Not me. I call it defensive, caring, shielding, protective. ;) Take your pick. If someone I care about has been wronged, I will be their quickest defender. I also get very offended if I feel like I have been wronged and someone I care about doesn't support, defend, encourage, or help me. (I think you get the picture about the whole "thesaurus thing".)

6. I love opposites together. (Could that be why I married Karam?!?!) I like sweet and salty. (Ice cream with peanuts.) Hot and cold. (The only example I can think of right now is hot chocolate with cold whipped cream.) Crunchy and soft. (French bread with the hard outer crust, but the soft bread inside.)

There. I did it. My "quirks" actually came to me quite easily, which surprised me. I thought it would be a lot more difficult to come up with. In fact, I could probably even come up with more if I tried. So now I have to tag others. I think it would be interesting to hear everyone's quirks, however, I'm only tagging the people I think are "rule-followers" like me who will actually do it. If you choose NOT to, however, I will borrow Kayte's threat and do it for you! ;)

I tag: Dee Dee, Kristy, Megan, Maren, Teresa, & Denise



P.S. Feel free to find all my errors, because believe me, I would do it too!

M Vee...

That's right! I have joined the ranks of the cool M Vee drivers. Me. What? You don't know what an M Vee is? It's a cool car. It's the kind that only cool people drive and everybody else just wants to drive. I've always dreamed of the day I would join the COOL people. And finally the day is here! It's a happenin' car, too. DVD player. Navigation. Automatic opening and closing doors. Lots of space. Room to take additional people besides just the boys and me. Yep. It's sweet. NO, I am NOT just trying to make it sound great. It IS great. Really. There are other names for it that you may be more familiar with... Town & Country... Mini-Van. Somehow those sound really Mormon-mobile-like and not so happenin'. So if you don't mind, I'll just call it an M Vee because that brings to mind (mine anyway) something impressive and sporty. ;D

















As long as we're talking about "new" things at our house, here's a picture of the boys taking their new puppy, "Pinga" for a walk.









Where, oh where do they get those imaginations?!?

P.S. They dressed themselves! lol And NO, I didn't let them go anywhere like that! ;)