It is important for you to know that you are not alone. Many have traveled this path before you. Although it is sad to know that others are forced into this terrifying journey, you can take some small solace from knowing that you are not the only parents to experience these feelings. You can call upon other parents as resources and fountains of support.
The next several chapters will provide information to help you deal with immediate decisions that must be made in the first week of treatment: how to get the best doctors and treatment plan, what leukemia is, how (and when) to tell your child, what type of catheter to choose, whether your child should be enrolled in a clinical study, and what types of treatments are possible for leukemia. Parents will explain what choices they made and how they adjusted, learned, and became active participants in their children's treatment. Sharing experiences with parents and survivors of childhood leukemia may help your family develop its own unique strategy for coping with the challenges ahead.
A Mother's View
Memory is a funny thing. I'd be hard pressed to remember what I had for dinner last night, but like many people, the day of the Challenger explosion and, even further back, the day of John Kennedy's death, are etched in my mind to the smallest detail.
And like a smaller group of people, the day of my child's cancer diagnosis is a strong and vivid memory, even seven years later. Most of the time, I don't dwell on that series of images. It was, after all, a chapter in our lives, and one that is now blessedly behind us. But early each autumn, when I get a whiff of the crisp smell of leaves in the air, it brings back that dark day when our lives changed forever.
Many of the memories are painful and, like my daughter's scars, they fade a little more each year but will never completely disappear. While dealing with the medical and physical aspects of the disease, my husband and I also made many emotional discoveries. We sometimes encountered ignorance and narrow-mindedness, which made me more sad than angry. Mistakes were made, tempers were short, and family relations were strained. But we saw the other side, too. Somehow, our sense of humor held on throughout the ordeal, and when that kicked in, we had some of the best laughs of our lives. There was compassion and understanding when we needed it most. And people were there for us like never before.
I remember two young fathers on our street, torn by the news, who wanted to help but felt helpless. My husband came home from the hospital late one night to find that our lawn had been mowed and our leaves had been raked by them. They had found a way to make a small difference that day.
Another time, a neighbor came to our house bearing a bakery box full of pastries and the message that his family was praying for our daughter nightly around their supper table. The image of this man, his wife, and his eight children joining in prayer for us will never leave me.
A close friend entered the hospital during that first terrible week we were there to give birth to her son. I held her baby, she held me, and we laughed and cried together.
Sometimes, when I look back at that time, I feel as though everything that is wrong with the world and everything that is right is somehow distilled in one small child's battle to live. We learned so very much about people and about life.
Surely people who haven't experienced a crisis of this magnitude would believe that we would want to put that time behind us and forget as much of it as possible. But the fact is, we grew a little through our pain, like it or not. We see through new eyes. Not all of it is good or happy, but it is profound.
I treasure good friends like never before. I view life as much more fragile and precious than I used to. I think of myself as a tougher person than I was, but I cry more easily now And sure, I still yell at my kids and eagerly await each September when they will be out of my hair for a few hours each day. But I hold them with more tenderness when they hop off the school bus into my arms. And I like to think that some of the people around us, who saw how suddenly and drastically a family's life can change, hold their children a little dearer as well.
Do I want to forget those terrible days and nights seven years ago? Not on your life. And I hope the smell of autumn leaves will still bring the memories back when I'm a grandmother, even if I can't remember what I had for dinner last night.
CURE Childhood Cancer Newsletter Rochester, NY
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