Our Little Princey Fellow - Collin Cureageous

When Collin was born, his sister called him her "princey fellow." Collin was diagnosed with High Risk Metastatic Medulloblastoma (a brain tumor that had spread to his spine) on 4/22/10 at 16 months of age. He has had brain surgery, high dose chemo, an autologous stem-cell rescue, maintenance chemo, a phase II trial, more chemo, and radiation to his brain and spine. He has relapsed twice, but is fighting with such strength and courage, we have more recently dubbed him Collin Cureageous.

Tuesday, October 9, 2012

Guardian Knights Motorcycle Club

As you probably know, one of the blessings we have received along Collin's journey has been the amazing kindness and support from the Guardian Knights Motorcycle Club. This past September, they held a fundraising ride, called an Iron Butt Ride, in which participants rode 1000 miles, from Harrisburg, PA to Lexington, KY and back, in 24 hours.

I had very much wanted to be there to see the riders off and to welcome them home, but it wasn't possible since Collin, Neya, and I were still in Houston when the ride took place. Today I got to read the account of the whole event, from the idea, through the planning, to the ride itself, written by Guardian Kight Rick Cagno. Once again, I am humbled by the incredible dedication and generosity of people around us. I had no idea the amount of time and effort that went into this event, and I don't know how to begin to thank John, Rick, and this wonderful group of people for all they have done for Collin and our family. Take a few minutes to read Rick's blog entry...you'll be glad you did.

http://rcagno2010.blogspot.com/p/collin-1000.html

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I am the proud mom of 2 wonderful kids, Neya (born in 2004) and Collin (born in 2008). When Collin was born, Neya loved princesses, and called her baby brother her "princey fellow." As a mom, my greatest fear in life is something happening to one of my children. My fear was realized when my sweet 16 month old son was diagnosed with cancer in April of 2010. I have watched him go through things no child should ever experience, and I am in awe of his strength. He is my hero.

I have learned that cancer is the #1 cause of disease-related death in children under the age of 20, killing more than asthma, cystic fibrosis, diabetes and pediatric AIDS combined. 46 children are diagnosed with cancer every single day. 7 children die from cancer every single day. 1 out of every 5 children diagnosed with cancer will die. There are 5 children diagnosed with cancer for every one diagnosed with pediatric AIDS, yet only $20,000 is invested in cancer research for every $595,000 invested in pediatric AIDS research. Of the National Cancer Institute's budget of $4.6 billion, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancer combined received less than 3%.

I started this blog as a way of keeping loved ones and friends updated on Collin. Now I also hope that his story will help raise awareness about Medulloblastoma and all childhood cancers. Awareness about childhood cancer needs to be increased so that it may some day receive the funding it deserves so that a cure can be found. Children deserve the chance to grow up and live their dreams; they shouldn't have to fight for the chance to live.

For more information on Medulloblastoma, view this document from the American Brain Tumor Association web site.