Some of the hardest times in life are the teen years. We hit puberty like a brick wall. It’s a hard, but its "normal" and part of life. From the first day I found out I was diagnosed with cancer in 04, my priorities changed and my "normal" life was taken. I was looking forward to being a teen, but life had different plans. I had years of treatment including radiation. I had to have tattoos to align me precisely as to not harm me. I walked into UW hospital, checked in and sat down in the quite waiting room, giving me time to think. The word "tattoo" made me think of a biker man with a leather vest and tattoos. My name was called and after winding through long hallways we entered a room to find, not a burly biker man with lots of tattoos, but a short dorky man with a lab coat and glasses too big for his face. As they worked, they asked about me and I told them my story. As I did, I realized I would never have a "normal" life. I had to learn to deal with a lot and had to grow up fast. Most teen girls worry about pimples and here I was worrying about procedures and side effects. I realized I wanted to be a normal teen that had acne, had to worry about shaving, and had to spend hours on hair. Before I knew it, I had tattoos, which my mom gladly paid for. For the rest of my life I will have them and they are a universal symbol that I was treated with radiation. They show me what I have learned from my life. I didn't think my cancer would relapse making it so I would once again have to use them, but it did and I am once again dealing with cancer world and its many struggles. My process of learning has been a hard one, but it’s one I enjoy every day. I know what’s important, what to appreciate, and what to notice in life. I have become more determined and don’t take life for granted. Having cancer has made me want to go back to school that much more and make something of myself. I have also accepted I wouldn't be the strong persevering women I am now if I was “normal”.
Approaching decision-making after bone marrow transplant relapse in acute leukamia
Palliative care is not often found at a place like Seattle Children's hospital. It is sort of like the food. Lots of lip service an no real commitment. Palliative care is best understood in Hospice realm.
I have seen and I understand wanting to do one more thing, the magic thing that will make it go away. The magic deeply colored chemo just sitting on a shelf that will most certainly turn it around. I think as parents we just don't want to give up. We brought these children into the world, we are not going to let anyone or anything take them out without a fight.