Hi, I am Damian's mom (Kristi) I will be writing about Damian's journey as he is not able to due to the side effects of the treatments that saved his life. Damian will be 11 in June and will be 8 years cancer free this year! Damian loves to watch educational shows, and drawing pictures. He enjoys all kinds of music and dancing, he participates in cheer through a local organization, Community Connections. He is very social and wants to be the life of the party, he’s rarely in a bad mood and just makes people smile with his friendliness. He’s a really awesome kid!Damian was diagnosed with a 3cm Pinealblastoma that had spread to his spine at 22 months old, it took over 6hrs of surgery for doctors to remove 80% of it. The surgery left him unable to look up using his eyes (this is permanent) as well as several weeks for him to be able to sit up and walk on his own. He had so many surgeries over the next year, tumor resection, EVD placements, shunt, port placement and a lung biopsy when he developed a fungus. There are so many minor ones that involved putting tubes in that I lost count. Six rounds of chemo, two rounds of stem cell transplants and 8 weeks of radiation all by the time he was three. He was a fighter through it all and overall remained happy and loved the attention that his nurses and techs gave him, even now at 10 he still likes to go to doctors appointments! As grateful as we are that Damian survived it is not without side effects, this is a very rare tumor and even more rare at his age. The radiation has done the most damage, his growth is stunted and he has been on growth hormones for over a year now. Since starting those he is being watched for skin cancer as he has broken out in freckles and moles and a few have been suspicious. He has been diagnosed as moderately retarded, has had lots of speech, OT and PT and is starting to reach milestones that he has been working on for years, like jumping, walking up the stairs alternating feet. We really have no idea how bad his vision is as he can’t describe it to us and by this point it probably seems normal to him. He doesn’t usually sleep more than six hours at night so he is often up very early in the morning. Knowing all of this, we would have still made the same decisions but it would be great if there could be better outcomes for children. It excites me that St Baldricks wants to do more to make that happen, during the fight for life you can often only handle one crisis at a time so you don’t think about things like will he be able to ever write his name. Once that fight is won you start to see all of the other battles that your child faces and its just as heartbreaking to realize the things they may never have, independent living, a spouse, children.