Keith's Story: Parent's Letter ProjectEpendymoma- Keith’s mom

Keith at cruise cabin

If I could take it all away, I surely would! Your life is upside down and won't ever be quite the same. The confidence you had in each day, the normalness of it, is gone. But in its place will be other days that you will still treasure. You will develop new memories of good moments, silly times, a new appreciation for the small things. While the everyday routines may seem to be stolen from you, there will grow another kind of routine in its place and new people to see you through.

My son Keith started having headaches when he was 10 and a half. They seemed like migraines, something his father's family has a history of having, except that they weren't migraines. Fast forward over three months of headaches of increasing frequency, searching for a cause, and finally one day came and we had the diagnosis from our local Emergency Department (ED). A long medical transport ride in rush-hour traffic in the DC metro area later, and we were at the best place possible-- Children's National. Surgery followed in a few days after the brain swelling from the irritation caused by the tumor went down, and Keith was home in less than a week, back to school to finish his final year in elementary school not long after that. Unusual for most tumors, but it was in an unusual location on the surface of his brain and easily reached. A long summer passed for chemotherapy and then a fall that was lost to daily radiation appointments in the first year of middle school. Bald head, wearing bandanas that required special permission of the school because of the association with gang attire, and trying to regain some sense of normalness, Keith handled it all with grace.

Time changes after the diagnosis. No matter what the prognosis, no matter what type of tumor, no matter what the treatment ordered, time changes. From the moment the words "it's malignant" are spoken, your sense of time may be altered forever. You stop thinking things like "next year when…" or "I wonder what sport, what courses, what major, and what career, he'll/she'll choose…" and instead focus on the daily routine or at times, the next appointment. That's ok. It forces us to focus on what is most important, our child and the joy he or she brings into our life and the unique person that he or she is.

You will find new strength you didn't know you had. You will find that what seemed to be the daily grind of work or home life will take on new meaning and will sustain you by the sheer normalness of it. You will find ways to keep it together for the other children in the family so that their life is as normal as possible amidst the chaos. And you will not be alone. The staff of Children's National, from the hospital to the clinics to the labs or the radiology department, will be there too. One of Keith's favorite employees was the man who ran the coffee bar downstairs. He learned that Keith liked cappuccino and would always ask him how things were going. Everyone at Children's National is there to support you and your child.

I wish you good days ahead. I wish you peace. Take care of yourself so that you have the energy to give to your child and family. You will get through this. You are in my thoughts.

With good wishes and hope,

Carol, Keith’s mom

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