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.

Saturday, April 24, 2010

Saturday, April 24

Collin was still groggy from the surgery the night before, and then they had to sedate and intubate him again to do another MRI to make sure the whole tumor had been removed. Our daughter came to the hospital that day, and we talked to her about what kinds of things she would see and hear when we took her into the PICU to see Collin. She asked great questions, and then said, "Can I see Collin now?" We took her back to his crib, and got a tall seat for her to climb onto so she could see Collin and hold his hand and talk to him. He did open his eyes for a moment and seemed to realize she was there.

That night, Bill and I took turns sitting by Collin's crib. I was again taking a nap in the family waiting room when I was awakened by crying. I knew right away that some other poor family had just experienced the unthinkable. Not wanting to intrude on their pain, I just laid there with a feeling of sick dread and pretended to still be asleep. I dozed off again, but woke up when they came in to get their things. Once they were gone from the room, I went into the PICU to be with Bill and Collin, and realized that the baby of the young parents we had spoken to earlier that day had just passed away, and they were there saying goodbye. I avoided them, because my baby was still alive, and I had no idea what to say to them, and then I felt guilty.

1 comment:

AnonymousFebruary 16, 2011 at 10:45 AM
"some other poor family had just experienced the unthinkable"

You're right, it is unthinkable. When I try to think something like this happens to my kids (I have 3), my brains just stops...

- Adam
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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.