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.

Thursday, August 5, 2010

Thursday, August 5

Chemo Round 4, Day 2

Today was a pretty good day. Collin was a bit fussy this morning, I think partly because his left eye was patched for a while, and it's harder for him to see out of the right eye. Despite being fussy, he participated in his therapy sessions; his Speech Therapist did a standardized test of his receptive language today. She had talked to me yesterday about doing the test, and explained that she had no concerns about his receptive skills (nor did I) but that she wanted to do the test so it was officially in his file. So after the test today, she said he scored at 19 months, which is exactly where he should be. Collin continues to try to repeat things I say (when it suits him of course!) Today I tried to get him to say "I love you Neya" while they were playing together this afternoon. He tried a few times, and had the syllables and tone of voice the same way I said it. Then all of a sudden, the next time he tried, he said "Love you Neya" as clear as a bell! Neya, my Mom, Bill's mom and I looked at each other in shock, like none of us were really sure we heard him right! It was great!

1 comment:

RosebudAugust 6, 2010 at 12:50 PM
HOORAY for Collin!!! And for you, too!!
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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.