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, May 11, 2010

Tuesday, May 11

The neurosurgeon stopped in this morning and said the CT scan done last night showed no major changes; he said there was a little more fluid on the outside of the brain, but as the ventricles shrink a little, the fluid is redistributed. He wasn't concerned, and is ready to release Collin to oncology as his primary care group effective tomorrow.

The occupational therapist worked with Collin a little more today. At the end of her session she worked on trying to calm him. She used her hands to apply gentle pressure to help calm him; he is unable to make sense of different stimuli, so noise, sound, touch, etc. are stressful and/or painful to him. This afternoon I ordered a lightly weighted blanket to see if it helps him.

The physical therapist had him sitting in a special kind of chair for five minutes today. He tolerated it pretty well, and did a good job holding his head up. He even used both hands to push a ball away. He seemed to be moving his head and eyes a bit more to see what was going on around him; when he was sitting up in the chair, he looked down and saw the Broviac catheter coming out of his chest, and ran his hand over it to feel it.

He was started on TPN today, which is IV nutrition that is given through the Broviac. One bag is vitamins, and the other is fats and lipids. The oncologist wants him to gain some weight, because he's going to lose more during chemo. The tube feeding continues around the clock as well, but will be turned off when the chemo starts.

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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.