Five years ago, my 12-year-old daughter and I waited in a long queue similar to that of a popular ride at a theme park. But we were not at Disneyland, instead we were at the saddest place on earth: the lobby of a children's hospital in Los Angeles.
We spent Thanksgiving weekend in the oncology ward trying to diagnose the mysterious golf-ball-size lump that had recently surfaced on the right side of Maddie's neck.
The walls were decorated with cartoon turkeys and pilgrims, clowns roamed the halls creating balloon animals. Maddie's eyes sparkled as she excitedly chose a purple woolen hat crocheted and donated by the blue-haired church ladies. I glanced at my baby's long cinnamon hair. Hair that I had washed, brushed and braided since she was an infant. I prayed that she would never need to wear that kind of a hat.
Three weeks later, Maddie was diagnosed with stage 3 Hodgkin's lymphoma.
After two rounds of chemotherapy, a PET scan revealed that Maddie was not responding as well as hoped; the cancer cells were still active. Her protocol was changed, her medication amplified. She endured six more rounds that napalmed her petite body and lit her internal organs up like a pinball machine. Eight months later another PET scan showed that the lymphoma was gone.
“Remission” I whispered, what a beautiful sound. But I recently learned this word is bittersweet.
Last year, Maddie was transitioned to the hospital's “LIFE Survivorship Programme.” I was excited to meet the doctors, thinking that it would be a celebration, naively ignoring the acronym: Long-term Information, Follow-up and Evaluation. I pictured happy clinicians high-fiving us as we entered the clinic. Instead, I was greeted with a thick dark blue packet which explained this new phase of treatment was about monitoring the long-term side effects of my daughter's chemotherapy. There was an insert that listed the medications that Maddie received and the corresponding potential ailments.
Maddie was cancer-free, but she was now vulnerable to cataracts, osteoporosis, congestive heart failure, pulmonary fibrosis, infertility, and, far worse, secondary cancers such as leukemia. Some of these “side effects” could possibly surface 30 years later.
My baby could be sick without me, I thought. Who would take care of her?
A vague guilt took form in my mind.
Throughout Maddie's illness, well-meaning friends suggested holistic remedies and alternative solutions. One family member went as far to recommend a doctor who claimed his non-FDA approved intervention could cure cancer with minimal side effects. As I leafed through the blue Bible of survival I remembered Maddie during treatment, her face bloated from the medication, her eyebrows and eyelashes gone, her scalp covered with a synthetic wig; a caricature of her once healthy self. Should I have listened?
I met with David Tishler, assistant professor of pediatrics and attending physician at the LIFE clinic, who reassured me that I had no other choice. Based on Maddie's type of lymphoma, her chemotherapy protocol was the only scientifically proven, approved treatment option. Alternative treatments may have relieved her symptoms but they would have been a compliment to her evidence-based standard of care, he said, not a replacement.
“Pediatric oncologists are aware of the long term side effects of treatment,” Tishler said. “We are tasked with balancing the toxicity of the drugs, the stage of the cancer, the overall patient survival rates and the possible recurrence.”
Currently, radiation therapy is used with caution when treating young girls because research has shown that it can cause an increase in breast cancer later in life, he added.
Each year, about 15,780 children under the age of 19 are diagnosed with cancer, according to the American Childhood Cancer Organisation. Medical advancements enable more than 80 percent to survive 5 years or more. As encouraging as this is, survival comes with a cost. Two-thirds of those who survive suffer from at least one chronic health condition as a result of their treatment. I, as well as many other parents of cancer survivors, must deal with the collateral damage of our children's lifesaving treatment, something I had never imagined.
Before Maddie's diagnosis she was an All-Star soccer player and never had breathing problems. She now uses two inhalers and regularly sees a pulmonologist. At a recent visit to Children's Hospital for a follow-up test, a receptionist asked if we knew the way to the pulmonology department. Maddie rolled her eyes. We not only know how to get to pulmonology, but also radiology, hematology and oncology or any other “ology” for that matter.
On the way there we passed a mural decorated with Winnie the Pooh clasping a bunch of balloons floating in the sky, a Dr. Seuss aquarium with exotic fish and huge ABC building blocks for kids to play with. Yet we were surrounded by children in wheelchairs who dream of walking again. Others on oxygen who can only fantasize about swimming. And some who do not have the muscle tone to pick up their hands, let alone a block. We were on another planet, one where we knew the language but refuse to speak it. We walked in silence.
In Pulmonology, Maddie entered a thick plexiglas booth which resembled the Popemobile with the addition of breathing apparatuses. I watched as she performed her exercises more exhausted than I had ever seen before. I looked at my daughter, pleadingly, willing her to do better. As Maddie's lungs tried to inflate, mine slowly deflate. Her doctor reviewed the results. Maddie's pulmonary functions had plummeted since her last visit. My throat constricted.
“She hasn't exercised most of the summer and she didn't eat before the test, could that lower the score?” I asked, almost begged.
I mentally blazed through Kübler-Ross's “Five Stages of Grief” and jumped from denial to anger and was fixated on bargaining, refusing to go to depression and acceptance.
“No,” the doctor said. This may be a side effect of one of the drugs she received. We needed to rule out bronchiolitis obliterans, also referred to as popcorn lung, a condition that is serious and irreversible that could cause Maddie's tiny air sacs to narrow by fibrosis and in severe cases, require a lung transplant.
We were instructed to schedule a chest X-ray, a CT scan with contrast dye and, if necessary, a biopsy of Maddie's lungs. Should this be the diagnosis, Maddie would have to take additional medication. Medication that would halt the progression. Medication she may need to take the rest of her life. Medication that would be monitored closely. Medication that could cause liver damage.
I thought back five years. I was numb hearing the diagnosis and treatment plan. So when the oncologist reeled off the possible side effects, I listened, but did not hear. The words “long-term survival” muted “long-term side effects.”
I looked at Maddie, staring straight ahead, tears streaming down her cheeks. Since being in remission Maddie has wanted to move on, refusing to speak about her illness, refusing to let cancer define her, even refusing to let me in.
“Sweetheart, this may not be. . .”
“Don't talk to me. I hate this. It's not fair.”
I looked at the five-inch gash from the biopsy on the fold of her neck, the same fold where milk and dirt used to gather when she was a baby. The lump that was taken from her neck was now in my throat.
Had I known that there was a possibility that my daughter could have lung disease, would I have chosen an alternative treatment? I had no choice, but was that true? Should I have investigated holistic cures, invested in a juicer to make kale shakes? Aromatherapy? Hypnosis? Music therapy? I know I did what I needed to do, but knowing that I cannot protect my child from the side effects of chemotherapy consumes me with guilt.
I reminded myself that I made the right choice, a choice to save my daughter's life. A choice, however, that will result in a lifetime of repercussions. I reflected on those billboards with the adorable bald child and the slogan: “Find a Cure,” but I wondered if the tag line should state: “But in the meantime find a treatment with no long term side effects.”
I thought of the months spent on the oncology ward. I remembered the children we shared rooms with, aware that some of them, unlike us, may have fallen into the unlucky 20 per cent. Their parents' lives destroyed forever, their lives far worse than mine. My anger morphed into gratitude. I reached for Maddie's hand and to my relief she did not let go.
“Sweetheart, I'm so sorry to have to put you through all this.” I choked.
“It's okay, Mom,” Maddie said, wiping her eyes. “You didn't make me sick. Life happens. It's not your fault.”
For the past five years I had locked myself in a prison of remorse. My child's words were the key to forgiveness that I could not give myself.
My vision blurred as Maddie leaned her head on my shoulder. I pulled her a little closer and ran my fingers threw her hard won hair.
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