You are about to embark on a journey that will be the challenge of your life as a parent. But you have chosen a hospital and a brain tumor treatment team that is one of the best in the country.
Mason was three years old, almost four when he was diagnosed with medulloblastoma which had already spread to his spine. We had been living overseas, working for the Peace Corps and living our life as we had dreamed. But life changed in an instant that July morning, when we saw that tumor sitting in his brain on the scan. We went to New York to be with family and Mason had his initial surgery there. As we researched his diagnosis and possible treatment, the brain tumor team at Children's National kept coming up in the articles and literature. We wanted Mason to be treated at a children's hospital, where they practiced children's medicine everyday- from the person who drew his blood, to the doctors who read his scans, to the nurses who administered his chemotherapy.
Mason was a force of nature, strong-willed and very determined to be a regular little boy. The team at Children's National encouraged that spirit. He played baseball and soccer, went to school when he could, and was allowed to try to live his life as normally as possible in abnormal circumstances.
One thing my father taught me when Mason was diagnosed was to treat Mason the same as before. He still got in trouble if he hit his brother. The rules still applied. That structure is so important. It let him know that his cancer did not change who he was or what was expected of him. Sure we cut him some slack sometimes and we had to changes plans because of his illness, but we still treated him the same. Mason was "Mason"- not "Mason- the poor kid who has cancer."
Mason was facing a tough diagnosis, but the one thing we appreciated was that the doctors' said, "every child is their own statistic." They saw him as his own person with his own disease that acted in the way his cancer would act.
It is a testament to Children's National that Mason was not afraid to go there. Of course there were times he was upset to go. He knew they were trying to keep him alive. When he felt really awful he would tell me to call the doctor to help him. They cared for him and even played soccer with him in the hallways.
One thing I can say is use the support and the systems that exist in the hospital. Talk to your social worker, talk to Child Life, talk to your physician. Ask about Volunteer Services and Concierge Services. There are so many great services and support available for you and your child, and his siblings that can make the treatment process easier.
Mason taught us a tremendous amount during his illness. He taught us to take each day as it comes, to get up and keep going even if you may feel terrible, be honest and truthful about what is happening to you, and to treasure every moment you may have.
I was Mason's advocate and his voice. Make sure those who are treating your child know what he likes and ways to connect with him or her. It can make all the difference in how your child relates to his treatment team.
It is also important to take care of yourself as a parent. You cannot take care of your child if you are not taking care of yourself. Find an outlet to relieve your stress- through praying, exercising, crying etc. You need to find ways to recharge to get back in there and give 100 percent to your child. I was not always so great at that.
Mason would hold my face and give me "Eskimo kisses" - rubbing noses as we laid down in his bed and he would ask how I was doing. Imagine a little boy going through chemotherapy asking about me. We shared a special bond and talked a lot about what was happening to him. I was always honest if something would hurt and find ways to get through it with him. We would count to 20 many times to get through things. Because he knew I would tell the truth, he would always take a deep breath and try his best to get through it. It was not always easy to be honest, but that trust between us was crucial. He knew his mom would always tell him the truth.
You will find within yourself and within your child an amazing amount of strength. Children are a force and they are amazing. You will rise to the challenge of this diagnosis because you love your child and will fight for his or her life.
It is because of Mason's strength and example that I keep going every day. All you can do as you enter into this cancer journey with your child is love them, ask questions, advocate, ask for help from your family and community, and do the best you can.
We send our prayers, positive thoughts, and energy to you and your child.
Mason's mom, Danielle