It is fitting that the weather is very hot as I write this, because our whole ordeal started on a record-breaking hot summer day. Neither my husband nor I had a picture book childhood, but we thought we could raise good kids and all would be well.
We were right, for about ten months. Unremarkable pregnancy, birth no worse than most, and the result was a healthy, cheerful (well, most of the time) baby. I had left work to be Mother Earth, growing our vegetables, making some of our clothes, preserving the harvest in rows of colorful jars in the dim cellar.
Approaching her first birthday, our daughter developed an odd bleeding that came and went. The pediatrician sent us to a gynecologist, who suggested we "wait and see."
"Wait and see?" No. We went back to the pediatrician, who referred us to one of the Big Cancer Centers in Boston, which has an embarrassing richness of hospitals of impressive repute.
The diagnosis of a rare form of cancer stunned us. With a pace that teetered between lightning fast and snail crawl slow, our daughter had a series of tests pointing the way toward treatment with chemotherapy. That was in 1977, in the relatively early days of multi-drug regimens that had begun to reward researchers with increased survival times for many children with cancer, approaching what a few dared to call a "cure.
Our medical team ruled out radiation, because our daughter's tumor was not likely to be destroyed by that form of therapy, a good thing, because even finely targeted radioactive rays would probably wreak havoc with her growing little body.
The cancer trifecta adds surgery to the chemotherapy/radiation bag of tricks, and our daughter
spent more than her share of time in the operating rooms. Surgery to remove the tumor, surgery to deal with side effects of the first surgery, until I lost count of the number of times we held her as she relaxed limply into anesthesia unconsciousness.
We walked out into a beautiful June day two years later, our daughter's "chemo" finished, and we threw a party to celebrate, inviting dozens of hospital staff from secretaries to department heads, as well as relatives and neighbors. We weren't even daunted when a surprise summer storm dumped a couple of inches of rain on our celebration. We were out of the woods.
Well, not really. For the next 15 years or more, she had more surgery to deal with various side effects and reconstructions. Her secondary teeth didn't form on schedule due to the drugs, so she endured several years of orthodontia misery. School issues hounded us from kindergarten on (including bullying) until, in desperation, we moved her into a school in a neighboring town under school choice. She graduated right on time despite missing dozens of school days.
Her single year of college ended when her kidneys began to fail, a result both of the various surgeries and the chemo drugs. Days and weeks, months of infections followed until she had to start dialysis. Because of her prior surgeries, she was treated at a hospital center twice a week rather than having the less disruptive overnight home treatments. Since she was diagnosed in the multiple-needle-sticks-per-day era before indwelling catheters spared the kids that torment, her veins are delicate, so providing access for the dialysis machines was difficult to impossible. More trips to the operating room for fistulas and the like.
It was no life for a young woman, but her almost-successful suicide attempt took all of us by surprise. Finding her unconscious in a bloody bathroom is an image I will never be able to forget.
Miraculously (there is no other word for it, although our local emergency services deserve a lot of credit) she recovered. After five and a half years of by-then thrice-weekly dialysis treatments, she received a lovely Valentine's gift: a new kidney, donated by a bereaved family we can never meet. Our joy at her swift recovery was tempered by our sadness for the donor's friends and relatives.
That more than five years ago. We seem to have finally reached a point where the aftereffects of childhood cancer won't haunt us on a daily basis.Our daughter is a lively, lovely independent woman, beloved of friends and coworkers alike.
Will we ever forget?
Of course not. Our daughter will bear the scars, literally, forever. We will bear some scars, too, if invisible.
But looking back over more than three decades of dealing with childhood cancer, it is heartening to see the progress, the increased survival rates, the expanded services for families and the kids.
It's a series of tough battles, but winning the war feels really, really good.
September is Childhood Cancer Awareness Month-to celebrate the winners, mourn the lost children, and dedicate ourselves to the fight. Children with Cancer: a Comprehensive Reference Guide for Parents (Oxford University Press, July 2010) received a "highly recommended" review from Library Journal (vol. 135 #13), August 2010, p. 103 (2). This is the silver lining.
