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.

Sunday, May 2, 2010

Sunday, May 2

A follow-up CT scan was done to monitor the size of the ventricles in Collin's brain to determine if he would need a shunt. If a shunt was necessary, of course we'd want him to have one, but from a chemotherapy standpoint, one less possible source of infection would be a very good thing. We were told that surgery had tentatively been scheduled for Monday to place a shunt. The oncologist had also talked about having a Broviac catheter placed in Collin's chest; it would be the port where the chemotherapy drugs would be administered, and would also be the site where blood could be drawn for labs. A Broviac catheter can be in for much longer than the femoral line in Collin's groin, and had a much lower risk for infection. She planned on having the Broviac placed while Collin was still under anesthesia from the shunt placement so he didn't have to be put to sleep twice.

The rest of the day was pretty quiet; Collin still had to stay in the crib with his hands restrained and was resting comfortably with morphine; it was nice to see him peaceful instead of agitated and moaning. Bill stayed with him in the PICU while I went home for a few hours to shower and see our daughter. It was another beautiful day, and as I drove home, I remember thinking it didn't seem right that the day was so nice when my heart was hurting so much.

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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.