Tuesday, April 01, 2008

Something to share

This something we wrote for a blog and website about childhood brain tumors.

Our Mason was a fighter, a superhero, an artist, a soccer player, a baseball player and a cancer survivor. He was diagnosed with disseminated large cell anaplastic medulloblastoma in July 2006. His only original symptoms were four days of vomiting. Our lives changed that July day dramatically and we worked together to provide him with a life as normal as possible.

Cancer did not define Mason. Mason defined his cancer. Being only 3, almost four at diagnosis, we were not sure how to handle all this. Would he go to school? Could he play sports? How in the heck do you discipline him when he was suffering so much? But my dad gave us good advice and said Mason was not cancer. Cancer was only something he had- not who he was now. That philosophy guided us through our cancer journey.

Mason, despite his age, wanted to know what was happening with his body. Even when we were talking with the doctors and he seemed not to be paying attention, he would come back and ask questions later. Respect that children are listening and deserve to know what is happening to them in age appropriate terms. These kids are smart and grow up so fast. Any control and power we give to them through knowledge and choice helps them. Even at age 4, he demanded to be heard. He was a quiet patient, maybe not the friendliest, but he knew that the hospital was trying to save his life. When he felt awful he would ask to call the doctors to see what they could do to help. They were not the enemy.

Mason, throughout his life, was a force of nature. He was sweet and loved to give hugs and kisses but he was also stubborn as an ox and very vocal about what he wanted. That served him well when he began his battle. We truly believe it was that stubbornness and his determination that helped him regain back his speech and mobility after his surgery. It was that determination that got him out of bed to play with his brother when Mateo came home from school everyday. It was that strength that kept him going in his last weeks when he must have felt atrocious but still fought to stay with us with all his might.

There were some days that we didn’t have patience and we were tired. We all were. We still had to put him in time out for biting his brother or throwing the remote control at him. We had to make him go to school some days. He only wanted to go when there was PE and art- his favorite specials. He learned he could try to get out of things when he said “he was sick.” All four year olds do that.
We encouraged him to play soccer and baseball and go to school. He got knocked down and his skinny legs looked so frail in his soccer shorts. But he was having a great time just being a kid and some of our best memories of him are of him scoring a goal and celebrating. All our little boy wanted to do was to play with his brother, wear his soccer jerseys and be with his family.

He continued to live his life despite what was happening to his body. He taught us that despite all the horrible things, the hospitalizations, the medicines, the shots, etc, that life was meant to be lived. Keep going. Many nurses and hospital staff will remember this little boy kicking a soccer ball all over the hospital and throwing himself on the floor as a goalie, or on the green ATV at the hospital with his parents running behind him with his IV pole down the hall.

We have had to remind ourselves of his fortitude and his example as we mourn his loss. He died on October 13, 2007. We know that he used all his will to overcome his disease, but he did not get the miracle. Everyday we struggle with his loss, but we just imagine this little boy yelling at us to keep going, to love his brother and each other. He demands that of us. That is what keeps us going.

What can we say to others about this experience and our son? Keep fighting. Every child is their OWN statistic. Ask for help. Let them be kids. Cancer is not who they are. Love them as much as you can every day. Treat them the same way as before the disease. Do the best you can. Remember they love you. No matter what happens-they will always be a part of your life.