Joan Lindsay Kerr is a teacher, writer, and traveler. She currently serves as the president of the California Association for the Gifted and several of her articles on parenting gifted children have been published in the journal, Gifted Education Communicator. Joan’s other passion is travel and travel writing. Some of her travel stories can be found on the website Globejotting: A Home for Global Storytelling. A personal journal of her travel adventures can be found on her blog at www.travelswithrobby.com. Joan is a member of Writers of Kern, a branch of the California Writers Club.
Libby’s Story By Joan Lindsay Kerr
The heart monitor beat softly in the darkened ICU room. My beautiful, vivacious daughter, her skin porcelain against her chestnut hair, lay sleeping off the anesthetic from a four-hour surgery to remove a blood clot running from her ankle into her hip. Her exposed abdomen was black and blue from the 10-pound sand bag the nurse had used to stop the flow of blood from an incision that refused to clot, hindered by the blood thinner she would probably use for the rest of her life.
With Libby asleep, I could finally let down the brave and cheerful face that we put on for our children when they need us and let some quiet tears flow. I didn’t feel frightened. The quiet room, the IV bag hanging from the metal pole, the beeping monitors and soft lights, the cold silver trays all felt very familiar – almost comfortable. After all, she and I had lived in this environment for almost two years – 27 years before.
It started mildly enough. For about two weeks, two-year-old Libby had a “flu bug” that came and went. She threw up a few times and spent several days lying quietly on the couch – quite a change from our usual little dynamo who chattered non-stop from morning ‘til night. For awhile, she would bounce back and seem fine, then the mysterious illness would return. It wasn’t bad enough to take her to the doctor…that is, until the day that the pee in her brand-new potty chair came out bright red.
“Don’t worry,” said Dr. Penn. “It’s probably a bladder infection. We’ll start her on antibiotics and it should clear up very quickly.”
Three days later, she was still peeing blood and had become more lethargic. Dr. Penn looked more serious now and asked us to bring her to the clinic for a few tests. Libby was cooperative as the technicians took x-rays and did an ultrasound.
“Mr. and Mrs. Letlow, would you step in here, please?” I suddenly felt as if I had stepped into St. Elsewhere’s story-of-the-week.. The doctor escorted us into a small, dark room. He put an X-ray photo up on the lighted board. The fuzzy grey and white image of my daughter’s insides was meaningless to me until the doctor showed us how her left kidney was pushed to the side by a virtually invisible mass that was detected on the ultrasound. The most likely diagnosis was Wilms Tumor, a childhood kidney tumor - and malignant.
“Do you have any questions?” he asked. Questions? Yes, a million…and yes, only one. Is she going to die? Please, God, don’t let her die. We had no control so we sat silently, shell-shocked, trying to absorb the sudden change in our lives, while the doctors outlined the next steps. These included a trip to Stanford Children’s Hospital where Libby would have a few more tests and, most likely, immediate surgery to remove her kidney and the tumor.
That afternoon was a blur, packing for the hospital, arranging for my parents to come and take our 7-year-old son, Brian, home with them, calling work to arrange time off, and phoning friends to ask for prayers.
The next morning, we made the two-hour drive to Stanford Medical Center where Libby’s surgery was already scheduled. First, a new round of tests and blood work. Libby was beginning to realize that something very unusual and unpleasant was happening. She clung to me as the lab technician did her blood work, crying, “Mommy, dat lady don’t poke me!” Then she was wrapped in the tiny hospital gown, her mass of dark curls tucked into a little cap, and was wheeled away from us into surgery.
The wait was interminable. We didn’t talk much. We were both wrapped up in our fears and hid our feelings in a protective cocoon of silence. Yet I was vividly aware of the people around me and that each had a story. They were waiting for a daughter to come out of surgery, or for the good news that a test had come back negative, or for a beloved grandparent to die. Somehow, I felt intensely connected to everyone there.
Finally, the doctor came out and told us that Libby had come through the surgery well and that we could join her shortly in the ICU. She looked so tiny there in the big hospital bed. A huge bandage covered her abdomen. Her chest was dotted with plastic circles connecting her by a maze of tubes and wires to a sea of monitors. An IV tube trailed from her arm to the bag hanging on the tall silver pole by her bed. What really broke my heart was the reproachful look she gave us when she woke up. I don’t remember Libby crying much throughout the next week, but she remained silent and solemn.
I don’t remember many details about the next few days. It was an odd mix of stress – nerves stretched tight as we dealt with the frightening wait to get the results of the biopsy – and long periods of complete calm and inactivity. We took turns sitting by her bed, pretending to read, dozing, and watching mindless TV.
A few friends made the trip to visit and to bring gifts for Libby and for us. Friends from our church family stopped by with a check for $700 to help with expenses while we were off work. Dan and I both cried at their support and generosity. Dear Lana, who to this day remembers every one of her friends’ birthdays and anniversaries, came in with a teddy bear bigger than Libby herself. Libby patted the bear and wanted it to sit in the chair by her bed, but even the bear would not make her smile.
We got more bad news during the next few days. For nearly a week, the lab could not find evidence of cancer cells in the removed kidney. The doctor finally felt confident enough to say that perhaps we had gotten lucky and that it had been benign. I spread the good news to family and friends. The very next day, we were again summoned into a conference room for the news that she did have cancer after all. I finally stopped pretending to be strong and brave and sobbed helplessly while they began to explain what this would mean.
The doctors were encouraging and positive. Her prognosis was good. Wilms tumor, one of the childhood cancers, had an 80% survival rate and only required six weeks of chemotherapy.
A couple of days later, there was a new blow. Additional lab work indicated that she had “the bad Wilms tumor,” – a more rare and deadly form with only a 50% survival rate. Her treatment would involve immediate radiation to the affected side of her abdomen and a year and a half of chemotherapy. This time, we received the news more calmly. By now, the shocks and blows were bouncing off of us as we began to learn how to live an unexpected new way of life. But I still worried about how Libby was being affected. She had retreated into a somber shell, accepting the pokes, prods, and dressing changes silently.. Her outgoing and curious nature seemed destroyed.
The night before she was to be released from intensive care and transferred to the children’s ward, my parents - her beloved Nonnie and Boompa - arrived to see her. The minute her dear grandparents walked into the room, Libby’s eyes lit up and she smiled. With that smile, the stars in my heavens tumbled back into happy alignment. It was only the beginning of our long journey, but it was also the beginning of hope that everything would be all right.
The next two years were a roller coaster. There were many deep valleys, the saddest being when her “best friend” in the hospital, Alicia, a darling pink and white 2-year-old died of a brain tumor, and her big pal, Trevor, a spunky 13-year old, succumbed to leukemia. The worst moment for us came during the week Libby reacted badly to her first round of chemotherapy. Chemotherapy kills the cancer cells, but has the miserable side-effect of also killing healthy blood cells. Without these, Libby could not fight off normal, usually harmless, infections. Her temperature went soaring, she had to have a transfusion, and she once again withdrew into a motionless shell. I thought we would lose her. Even now, it is impossible to remember that time without a lump forming in my throat and tear pricking my eyes.
Her initial reaction to the chemotherapy improved over the next months, although we could count on a high fever and a trip to the hospital to be put on an IV drip of antibiotics ten days after each treatment. I learned, matter-of-factly, to clear my calendar ahead of time.
Libby became quite the medical expert. Her fears of the needle diminished. First, she didn’t want any kind of poke. Then she learned to ask, “Is it a finger poke, (acceptable) or an arm stick?” (a cause for tears). And by the end of the two years, she would march gallantly in and just stick her arm out on the tray, discussing her treatment in proper medical terminology (humorous coming from the lips of a four-year-old).
So there were peaks, as well, and even laughter. When her hair began to fall out, it started on the sides of her head, leaving her with a cute Mohawk hairdo. We took photos of Libby scowling ferociously like the A-Team’s Mr. T. The chemotherapy affected her muscle development, and her latent “lazy eye” went swooping inward, so she was now both bald and cross-eyed. She watched Dorothy skip down the Yellow Brick Road so many times that she and I both had every word, every song, every gesture of the movie memorized.
Visits to the hospital were made tolerable, and even fun, by the wonderful staff at Children’s Hospital. From Marsha, the receptionist who always greeted Libby by name, to Pat, who administered the chemotherapy, to the radiation staff, who sang to her, “When you have Libby, Libby, Libby on the label, label, label, you will like her, like her, like her on your radiation table!”
After the fears of the first few weeks, our frequent stays at Ronald McDonald House were even enjoyable. The staff was caring and provided lively activities for the children who were up to them and quiet rooms for artwork, television and movies for those who were not. Ronald McDonald himself came for a visit and photos one day, and the Doobie Brothers held an annual fundraising concert. Living with cancer became a “normal” way of life until the wonderful day when her oncologist, Dr. Michael Link, said that she was finished with all treatment and only needed to return for periodic check-ups. She returned to Stanford for annual visits until she was 18 years old, but by the end of her elementary school years, these had become primarily occasions to say hello to the staff and celebrate her victory.
We had always wondered if there would be any long term effects from her childhood cancer. We finally had our answer. Her doctors had discovered scarring in the arteries in her left side, caused by the radiation treatments 27 years before. Once again, we found ourselves together in the ICU.
Libby stirred and I rushed to her bedside. She opened her eyes, took my hand, and smiled. “I love you, Mom.”
“I love you, too, my precious daughter.”
And just as it had so many years ago, her smile reassured me that everything would be fine.
Libby is doing well. She was released from the hospital after a week and immediately returned to her college classes and her beloved theater. She continues on blood thinners and visits her doctor for regular check-ups.
She will always carry some battle scars from her experiences – a long, white slash across her belly from the first surgery, and a few new nicks and scars from the more recent one. She has a pronounced concavity on her left side where the radiation affected her soft tissue development, and the abnormal curvature of her spine from the same source causes her frequent back pain. But her doctors consider her to be a medical success story. We rarely think about her childhood illness any more, but I will never again take good health for granted.
Friends have asked if I was angry about Libby’s illness. I’ve always answered no. I was terrified. I was immensely sad. But I don’t ever remember feeling angry. I never once asked “Why me?” or “Why her?” We were surrounded by other families facing the same challenge and I asked instead, “Why NOT me?” Life is not fair. Life hands out undeserved joy and undeserved sorrow – and there seems to be little rhyme or reason to it all.
So what have I learned? I could say I have learned how precious our children are. But I already knew this. My son has had near perfect health but he is as dear to me as my daughter.
I have learned that, in spite of our lectures, rules, curfews, and antiseptic hand-wipes, we can’t protect our children from all of “the slings and arrows of outrageous fortune.” We can perhaps show them through our actions how to cope with whatever life throws at us. Libby is a survivor. She has survived not only her physical challenges, but the emotional traumas of a difficult adolescence and some choices made in her youth that had long-lasting consequences for her. But she has grown in grace and wisdom and I am immensely proud of my beautiful girl.