Monday, September 29, 2008

Guitar Hero 3 competition

At the Utah state fair they had a Guitar Hero 3 competition, my oldest boy seems to be pretty good at GH3 so we encouraged him to try out for the competition. the preliminaries were held at a local video game store, my 2 oldest sons and my husband made it to the final round at the State Fair. Well ... my oldest boy won second place and won $50.00 he was very excited about it, he was younger than the other winners and the man who took 1st place is a "professional" GH3 player. After the competition my son said all those viola lessons we gave him for all those years finally paid off.
Yeah, Right, that's what the lessons were for...

Monday, September 22, 2008

A national shame, our children are dying

I read this article, (see link at bottom) It made me realize that I need to speak up and say something. As a parent of a brain tumor survivor. I saw treatments that were available to adults, but were not available to my son because he was a child. These treatments were not available to children because they have not been tested on children and there weren't even any trials even being done. I know what it is like to decide to treat my child for his brain tumor with treatments that I knew would reduce his IQ by more than 10%, destroy his Thyroid, damage his pituitary gland, cause possible deafness, and blindness and leave him permanently bald. I chose that treatment because it was the only one available.

The number one killer of children is cancer. Cancer claims the lives of more kids than the next 5 on the list combined.

Half of the children diagnosed with brain tumors will die within 5 years. Overall one in five children diagnosed with cancer will die within 5 years. The 5 year survival rates for breast cancer is 88%. So why was breast cancer funding in 2006 $ 584 million, while childhood cancer received $ 26 million.

For some, the battle with cancer ends quickly because there are no good treatments. There has only been 1 new chemotherapy medication approved for children's cancer over the past 20 years. Mostly because there are so few clinical trials for pediatric cancer. The funding for pediatric cancer clinical trials has gone down every year since 2003.

The treatments known to destroy these rapidly growing cells can also destroy just about every system that is rapidly growing. As our kids grow so quickly, all of their cells and systems are targeted and this leads to multiple disabilities - if they are fortunate enough to survive. The course of treatment for cancer can last upwards of 3 years. During these times they go through irreversible trauma. When they are finished and try to fit into the "normal" world again, they are faced with many physical, intellectual, and emotional challenges in trying to adjust to a new world. The impact is devastating to each member of the family - emotionally, physically, mentally, spiritually, and financially.

Children can't advocate for themselves and their parents are usually too devastated financially and emotionally to petition congress and promote childhood cancer awareness. I do need to say something, perhaps it is too late for any research that may help my child, but I never want another mother to have to make the choices I had to make. We need better treatments for our children with cancer.
read this

Thursday, September 4, 2008

MRIs cause brain damage

I have decided that pediatric MRIs cause brain damage, not in the child receiving the MRI, but in the parent of the child receiving the MRI. It is that time again, and I thought I was going crazy, I couldn't concentrate, I didn't seem to be able to string two words together coherently.

I am so glad that his MRI is over now: Jimmy had a "stable" Mri-*WOO-HOO*. The most amazing thing happened: my 7 year old boy held absolutely still for over 40 min. and did this MRI without sedation! I was so impressed by that! especially when he still had to have an IV for contrast. He hates IVs and thought that if he went without sedation he might not have to have an IV. The whole without sedation thing was his idea and it really made things so much quicker and easier. I am so proud of him.

Tuesday, September 2, 2008

Ride for kids

We went to the Ride for Kids, fundraiser for the Pediatric Brain Tumor Foundation recently, we had lots of fun, all the kids got to ride on motorcycles all the way up the canyon. They loved it. Utah had a record amount of donations. we have only been doing Ride for Kids in Utah for a 4 years in Utah and we out fund raised places where they have been running much longer.
Our family had enough donations for the drawing for the motorcycle, but of course we did not win.
They fed us very good lunch, after lunch they interviewed the brain tumor patients on the stage. Little Jimmy was the youngest Brain tumor patient there, but he spoke as if he were much older. Among other things he said "I am grateful that so many people cared about kids with brain tumors that they were willing to come out". It sounded like a speech that an adult had written for him. I guess he is a good public speaker.
My husband drove his motor scooter the entire way and kept up with all the bikers on their big Harley's just fine.