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.

Monday, May 24, 2010

Monday, May 24

Chemo Round 1, Day 10

Today was another quiet day. Collin was taken off the oxygen he had been on since the reaction to the IVIG on Friday. He hadn't bothered with the nasal canula until this morning when he kept pulling it out of his nose, so I'm sure he was happy to have one tube taken off his face. The Vancomycin, one of the two antibiotics that were started early Saturday night due to the fever, was stopped; blood tests showed that it had not yet reached therapeutic levels, but his fever had gone down anyway. The tube feeding that was restarted after the high doses of chemo were complete is slowly being increased; the goal is to increase the tube feed to the normal level and then stop the TPN (the IV nutrition boost) as prolonged TPN use is not good for the liver. The physical therapist let Collin rest today since he spent the morning throwing up.

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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.