Sunday, October 11, 2009


CureSearch unites the world's largest childhood cancer research organization, the Children's Oncology Group (COG), and the National Childhood Cancer Foundation through their mission to cure childhood cancer. Research is the key to the cure. Every advancement in curing childhood cancer has come through research. It has treated more children with cancer than any other organization in history and has been responsible for many of the improvements in the treatment and cure rates of childhood cancers.

Nick's Warriors supports CureSearch and 50% of all contributions raised have gone to this charity (the other 50% to First Descents). Joan Darling, co-founder of Rhabdo-Kids - the online rhabdo support group - works with COG and reported the following:

Date: Sun, 11 Oct 2009 16:53:01 -0400
From: Joan Darling
Subject: News from Children's Oncology Group (good news and bad news)

Hello All,

I attended the Children's Oncology Group meeting the week before last, and there is some good news in terms of the number of new agents that are being developed that may be found to be useful in treatment rhabdo. This is the first time that I've gone to a meeting where there are so many new targeted biologic agents that it has become difficult to determine which ones to test.

There are two things that are needed to test these: patients, and funding to run the trials.
Unfortunately, there are usually more children who have relapsed with sarcomas or other solid tumors than there are trials to test new agents.

Despite that passage of the Conquer Childhood Cancer Act last year, which could allow congress to allocate up to $30 million a year for childhood cancer research, none of this money has come through yet.

So if anything is really needed, it's more funding for childhood cancer research. That's the bad news - that often I heard a lot about how to pay for running clinical trials, and setting priorities for what trials to run.

If anyone is interested in a great place to contribute, I highly recommend Curesearch Charity Navigator gives it an extremely high rating for efficiency - only 4 percent of income is not spent on research.

By the way, I do not get any compensation for being a COG patient advocate, but I do get my travel expenses reimbursed. I'll post more in a series of messages.

Joan, mom to Ali, dx stage 3 alveolar 9/96 List co-owner, Rhabdo-Kids

Just a little news to forward to those who have supported Nick's Warriors. Please take a moment to visit the CureSearch website ( and to learn more about them. I think Nick made a very wise choice in supporting this charity.

And the fight goes on...


PS: The radiation machine broke at Huntsman on Friday, darn it. Nick is scheduled for treatments (radiation only) every day next week. His blood counts stayed above critical this time and although he let me shave off his Mohawk (WAHOO!), he still sports a 5:00 shadow on his head. He did admit that perhaps he should realize his limitations when he came back from hunting for the afternoon with a buddy, half frozen, utterly exhausted and thankful he didn't pass out or throw up from the long hike. He finally told his friend that if he shot an elk, he might as well shoot him, too, because he wasn't helping cart out a dead elk and was going home. Too funny to me! That being said, he is gearing up for a trip to California on Nov 5th and watch the Penguins play the Kings (compliments of Aunt Chris & Uncle Stan). Even though his new normal way of life is counting out days on the calendar when he will be feeling well, he jumps on any opportunity to make the most of those precious days. I LOVE THAT! What would our world be like if everyone that felt good (decent) when they woke up, then tackled the day, making the most of every second? I don't hit that moment until 10:00 a.m. after coffee, and then my enthusiasm only lasts until noon. But, ah, I have an example to follow - I can only get better. Thank you, Nick. I love you!


Jay Paterson said...

Yesterday was our Canadian Thanksgiving. A clear very cold day.
I was blessed to get up very early, about 4 AM, and have some time for myself. I sat in the dark and thought of all the wonderful Thanksgiving days I had enjoyed with my family, and extended family, since I could remember. Lots of fun, laughter, stories, turkey, turkey and more turkey, and lots of memories of those who are dear to me.

A lot of my thoughts were of the 146 pound turkey in Utah, that would be Nick, and his wonderful family and extended family.

Hey Skinny! keep piling on the adventures. Luke ( 5 yr old grandson) thinks you are a hero. He has to go and have surgery on his eardrum and he can't wait to get his head shaved so he can have a mohawk JUST LIKE YOU. Gavin, Rachel, Anne and all the gang at Balmy Beach in Owen Sound say "HI" as well.

Finally, for Nicks's appreciation, I have to comment on the state of Canadian hockey. The management of our CDN teams has forgotten it's a game, treating a fun sport like a business. The guys that are having FUN stand out like the stars they are, Crosby is the leader of that group.

Oh yeah, and there's another young kid that stands out like a star, inspiring a lot of others. It's not intentional, it's just him being him. He's about 20, skinny as a rake, great smile, great energy, and a true leader. That Raitt kid from Utah. Whatta GUY!

Lots of love from the frozen north.

Chris Ulvin said...

Dear Lori and family,
I too use Nick as an example of how to be thankful for each day. I also appreciate Nick's attitude of "YES" when opportunities are presented to him. Stan and I look forward to seeing him in LA for the Kings and Penguins hockey game.
Dear Lord, help Nick and all who walk with him on his cancer path to reach out to you, to trust you as our guide, to see your wondrous hand at work. Thank you God for not putting an elk in Nick's gun sight. Amen.
Love, aunt Chris