Tammy’s exhaustion, however, was extreme. She would fall asleep any time she wasn’t physically moving. Palm to cheek, sitting up, Tammy dozed while helping Matthew with homework, at the movies, reading the newspaper. Even stress and noise couldn’t keep her awake; she drifted off sitting in a straight-backed metal chair next to the MRI scanner in which Carly (screaming, of course) was having a head scan.
Then Tammy began to cough. It invaded her body with such force that she would vomit. Her physician put her on rounds of antibiotics to no effect. Nor could the respirologist find anything out of the ordinary. It dragged on for months. We probably should have been more mindful at the time, but when lost in the woods, even Little Red Riding Hood didn’t notice she was chatting with a wolf.
During a quick visit to a friend in New Jersey, Tammy felt a lump in her groin and her throat closed in fear. Her mother had passed away suddenly from cancer less than six months after we had moved back to Toronto from New York in 1989. Her grandmother similarly died in her mid-fifties. Tammy wondered if this was the family legacy.
She went to see her physician first thing Monday morning upon returning home from her visit with her friend. After the exam, Tammy was sent down the hall for an ultrasound of her pelvis. Technicians aren’t supposed to comment on their findings—good or bad news is to be dispensed by the physician. Tammy shivered from the look of concern on the woman’s face. The moment the ultrasound sensor rolled over her groin, Tammy felt it hit speed bumps and knew it wasn’t good.
Rushing back to her doctor, she pleaded with the secretary to get the test results immediately rather than be put in the queue and forced to wait an agonizing week. Feeling sick and tired is bad enough without adding terror of the unknown. Not liking what the ultrasound showed, the physician sent Tammy immediately to a surgeon for a consult and biopsy. More waiting. New agonizing.
Even before excising the tissue sample, the surgeon calmly told Tammy he expected to find cancer based on the size and shape of the lymph node. Preemptively, he booked an appointment for her with an oncologist at one of Canada’s top cancer hospitals.
The test results confirmed the surgeon’s suspicion and after several meetings with an oncologist, Tammy was diagnosed with lymphoma. She would need chemotherapy. Immediately. Our lives, already one long doctor’s appointment, were about to get worse. I wondered if calm and happiness could ever worm its way back in.
I was beginning to feel like Haiti. Or Sri Lanka. A place where natural disasters just start coming and don’t have the good sense to stop. The minutes and hours that followed the diagnosis are gone to me now. How we got through the next few days is a complete blank. In fact, the next year would be a hazy maze of appointments and treatment and emotional exhaustion.
With all of our energy going into Tammy’s treatment and daily life, there was little left for scouring websites and following up on leads to find suitable programs for Carly. We knew enough from the reading Tammy had done that “early intervention”—therapy and programming—was the key to long-term success with kids with autism. But there was no manual, no organization or expert who could put together a comprehensive plan of action. It all fell on Tammy to coordinate.
We were fortunate enough to have been referred to a physiotherapist named Esther Gold when Carly was one year old. The woman both had a private practice and worked part-time for Northland, a school for children with special needs.
“You should see if they have a spot for Carly,” Esther told us. “She could receive her physio and all of the other therapy she needs—and you wouldn’t have to run all over the city to get it.”
Just as Tammy was beginning chemo, we begged our way into the already overcrowded school, finding that one of the positive side effects of having cancer is the kindness it can evoke from others.
As Tammy focused her efforts on her treatment, maintaining a positive state of mind through yoga and relaxation classes, and caring for three kids, Carly began a daily regimen of physiotherapy, speech-language therapy, music and art therapy, and social skills development at Northland. Not a typical childhood experience, but one that allowed us to feel some relief that we were doing the best we could for our daughter. She would be taught everything that just comes naturally to most kids. We rejoiced at small wins such as her learning how to hold a sippy cup, sit still on a chair for ten minutes during music time, and sort blocks by color.
During this time at Northland, we were introduced to Barb Nash-Fenton, the speech-language pathologist who would become Carly’s teacher, advocate, and confidante. Fourteen years later, as I look back on Carly’s early years, I realize how life comes down to happenstance. If we had not met Esther, would we have heard about Northland? If not for Tammy’s cancer, would the school’s director have had the empathy to find a spot for Carly? And if not for Northland, most certainly we would not have met Barb, who would become a pillar in our life in the coming years.
In fact, through the year, we would learn that Tammy’s cancer had as great an effect on others as it did on her. We came to realize that we all reflect our own fears and faith in how we treat friends and relatives experiencing life-threatening illness, but in the weeks that would come, Tammy learned to quickly put aside those who couldn’t handle her illness.
Along with those in our life who couldn’t cope with our complex saga came others of amazing kindness and selflessness. Often, these were people of whom we had few expectations—sometimes complete strangers. At first it felt awkward when a neighbor of a friend would offer to drive carpool or cook dinner for us. “Oh, we’re fine, thanks,” I’d say. Quickly I learned that these people were not offering out of obligation but rather out of a real desire to help, a need to make a difference. Turning them down was as selfish as it was foolish. At the time, my father-in-law was dating a woman who did some part-time catering. Throughout the summer and fall of 1997, Arna would arrive with boxes of food she had prepared, wrapped, and frozen. When we tried to reimburse her for the cost of the groceries, she quickly changed the subject or dramatically understated the amount we knew she must have spent. And on hot days, she encouraged us to bring all three kids to her house to swim and relax. As Matthew and Taryn slid down the slide into the pool, I bounced Carly up and down in the shallow end, the water seeming to wash away her anxiety, bringing a smile to her face. Tammy could relax and watch the family; a seemingly normal summer afternoon.
Though she pushed through the year of treatment with incredible grace, Tammy would constantly test the boundaries of her mortality with her oncologist. Our children were young: the girls two and Matthew seven. “Will I survive to see Matthew bar mitzvahed at age twelve?” she once asked.
“Yes, likely,” her oncologist, Dr. Reitman, answered matter-of-factly.
“How about their weddings?” Tammy pressed on.
“I’m not so sure,” again delivered with a cool evenness.
“How do most lymphoma patients die?” Tammy asked, her voice rasping. I looked down at my lap. Some questions, I think, should not be asked.
“Pneumonia,” the doctor replied, and uncrossed her legs to stand. The appointment was clearly over, as we had reached a subject she was not prepared to embrace.
Although I compartmentalized Tammy’s cancer like I do everything else, there were times it could not be pushed to the corner. One night she was reading in bed and had dozed off. The bandana she wore at night to keep her head warm had slipped off and lay on the pillow next to her. Tammy’s skin was slightly gray from the previous day’s round of chemo. I had to face the fact that my wife was very sick. I slipped into our bathroom and shut the door, feeling a wave of panic creeping over me.
“What the hell are we going to do?” I murmured to myself. “What if I’m alone?”
My hands shook as I splashed my face with water. At thirty-five, this was not a question I ever dreamt I would ask myself. Although I seldom allowed myself time to ponder a life without Tammy, I was paralyzed momentarily at the prospect. Our focus as a te
am was always on solving problems and fixing what was wrong. Cancer was merely a thing to be fixed and moved beyond. A stumbling block, but not a final destination. But the image of Tammy looking like a shadow of herself jolted me off track. I stole one of her Ativans and crept back into bed.
Excerpt from Northland Educational Centre, June 1997:
Sandra Welsman, Registered Physiotherapist
Carly is a sweet 2½ year old girl with global developmental delay, possibly P.D.D. and ASD on the severe end of the spectrum. She started at Northland in March 1997 in the Junior room and has made steady progress in all areas . . . she has recently acquired the skill of walking a few steps with one hand held. Our goal for Carly is independent standing and walking. She is following the MEDEK program of exercises. Carly is resistant to being handled and will try to fight out of exercises . . . It is recommended that Cary continue physiotherapy over the summer . . .
Excerpt from Northland Educational Centre, June 1997:
B. Nash-Fenton, B.Sc., D.S.P., C.C.C., reg. CASLPO Speech-Language Pathologist
Carly is beginning to understand language at the single word level when the content is very concrete . . . parents should attempt to model simple labels for objects, actions, prepositions, etc. Keep utterances short.
Carly demonstrated ability to make a choice between two actual foods, she was introduced to pictures . . . establishing eye contact during the exchange is ongoing goal. Carly’s feeding skills are also being monitored by myself and an Occupational Therapist. She currently is attempting to drink from a cup, although requires assistance to remember to close her lips after drinking to keep liquid in her mouth . . .
Excerpt from Northland Educational Centre, June 1997:
T. Ruben, Occupational Therapist
Carly continues to make progress as presently reassessed on the Insite Development Profile . . . She removes her Velcroed shoes, socks, pants and shirt independently as long as they are loose. She pulls off sleeves herself, a skill we struggled with, and pulls shirt over her head. Carly is able to assist in putting on her clothes. Carly is able to jump with two feet off the ground . . . now mounts riding toys unassisted and can push herself forward. We have started teaching steering with the bike on the Miller Boards so that her fear of falling off will provoke her to solve the problem and “turn” her wheel . . . Carly is an affectionate and fun child. Her self-stim behaviors of rocking and eyes to the ceiling are still prevalent, however, when she is engaged these diminish. This is why a one-to-one shadow staff is crucial in Carly’s early years . . .
During her treatment, Tammy was encouraged to practice yoga and take a course in visualization. One day I came home to find her with a small Ziploc bag, filling it with dried lentils and pinning it to the bulletin board that hung over her computer. Tammy spent many hours online researching both lymphoma and autism, the two forces that controlled our life. Every time she looked up, she would see the bag of lentils. “They represent teeny tiny lymph nodes—the size they should be if I were healthy,” she said. Tammy put an identical Ziploc under her pillow. Occasionally, under her breath, Tammy would sing a song she had made up, invoking her lymph glands to shrink and the cancer to leave her body. All this from a woman who claimed cancer was not a battle.
The months of Tammy’s treatment went well. As summer gave way to fall, the cancer retreated, leaving us in a new permanent state of limbo. Tammy’s is a wait-and-see form of cancer.
Throughout the year, our house had been oddly peaceful. Matthew, who had never been a particularly calm boy, adopted a mature and helpful nature. He took on the role of big brother with enthusiasm. He would sit on the floor with both girls next to him reading from one of his picture books. Taryn would look up at him hanging on his every word; Carly stared off at images only she could see. Although he probably was deprived of the type of attention a seven-year-old wants, Matthew never acted out.
“It’s just one more way we’re messing up our kids,” I joked to Tammy. “They’ll get over it.”
We had spoken to him about Tammy’s cancer in the way we were advised. Mom is sick. The medicine she’s taking will make her lose her hair and may make her tired. But the doctors are making her well. That was the mantra we repeated, perhaps as much to calm our fears as to calm his.
Our son was growing out of his short-temperedness and tantrums and turning into a sweet boy. Tammy called him her Bo-Bo Head; his still-small body a life support system to his robust cranium. Matthew’s childish chubby cheeks were beginning to thin, but when he smiled they still rose into pinchable wedges at either side of his mouth. Somehow this horrible disease brought out a kindness that would become a permanent characteristic in our son.
The girls, just months past their second birthday, were too young to feel the shifting sands beneath them. Could Carly even grasp the situation? Her medical reports continued to describe her as cognitively and developmentally delayed. Though we tried to maintain similar schedules and activities for the girls, their differences were marked. Taryn walked and chattered with a permanent smile on her face. Her short dark hair clung to her head like a swimming cap. Carly, on the other hand, seldom laughed—unless being tickled, bounced, or bathed.
I have a black-and-white photo I took of the three kids that summer. Taryn is standing, grasping the side of a chaise lounge on our patio. She looks directly at the camera with a grin so wide her eyes nearly squeeze shut. Carly sits on the ground beside her, her legs splayed out for balance. Both of them wearing summer dresses of crinkly cotton. Carly’s dress poufs out about her like a dollop of whipped cream. She looks toward the sky, her mouth turned down in a pensive frown, but her eyes wide as if contemplating the firmament. Matthew, the big brother, stands arm crossed, leaning on the chair looking protectively down at his little sisters. This picture aptly summed them up. A son feeling the need to guard. One daughter growing into a fun-loving, playful ham, and another drifting skyward, away from us.
As the months passed after Tammy’s last treatment in August of 1997, we didn’t see her remission as the closing of a book. In the years to come, the constant monitoring would remind us that every day free of cancer meant no more than that. One more day that it hadn’t resurfaced. Now every night-sweat, unusual bruise, persistent cough, or swollen gland sent Tammy into a fearful spin, only calming slightly with the reassurance of her doctor that she was still in remission. Milestone dates were looked at not as accomplishments, but as sand trickling through the hourglass. The form of lymphoma Tammy had, we were reminded, was treatable, not curable.
Nevertheless, with chemo behind her, Tammy began clearing out the artifacts of that surreal year. The wigs and books on cancer survival were donated. Supplements and pill bottles were thrown away. She kept the card with a quote from Zora Neale Hurston, “There are years that ask questions and years that answer.” I’m not sure which this one was, but as long as the two sides cancel out in the end, we’re doing fine. Lastly, Tammy unpinned the little bag of lentils hanging on her bulletin board. But rather than throwing them away, she placed them in her desk drawer.
3
Climbing the Well-Greased Ladder
When Carly was three and a half, we were waiting in a clinical ward at the Hospital for Sick Children. Carly was a part of a drug trial for secretin, a hormone that researchers briefly thought might be beneficial to children afflicted by autism. Tammy struck up a conversation with a mother whose six-year-old son was sitting on the edge of the hospital bed, playing with his Game Boy. There was a fairly typical cadence to conversations among parents with children living with autism.
“Is your son . . . ?” Tammy started.
“Yeah. Autism. Your daughter?” the woman responded with a tired smile.
“Same.”
“Who’s your doctor?”
“Stephensen. Yours?” asked Tammy.
“Constantarios.”
“What are you doing for him?”
“Gluten- and casein-free diet. Occupational therapy. Behavior
al therapy. Communication therapy. How about you?”
“Same. Diet thing doesn’t seem to do much, though. We’re starting to explore medications like risperidone. How do you pay for everything?” There is an unspoken code among autism families that makes all topics of conversation fair game.
“Debt. My husband’s family kicks in somewhat. How do you guys cope?”
“Bourbon,” joked Tammy. And then, “Kidding,” just in case.
Carly was to have a sleep-deprived MRI as part of the secretin study. The boy was in for an appointment with the doctor running the study. But Tammy and I were startled.
“Your son really has autism?” Tammy asked, now focusing on the child. The boy sat quietly playing with his Game Boy while his mother chatted with us. He made no odd noises, did not spontaneously get up and jump around flapping his hands. On occasion he’d look up at his mother and then go back to his game. If there is such a thing as normal, this boy portrayed it.
Diagnosed with autism at the age of two, the woman told us, her son had been undergoing a form of behavior therapy called applied behavior analysis, or ABA. He had made such incredible progress that his behaviors were largely under control. So much so, in fact, that she kept his diagnosis from family members and even her son’s second-grade teacher so that he wouldn’t be labeled. I was struck by the fact that this family had the option of keeping their son’s autism to themselves. I was not embarrassed by my daughter’s diagnosis, but there was no hiding her unusual characteristics. Tammy had once filmed a video to show the doctors how Carly behaved at home. The small cassette was euphemistically labeled “Kooky Carly.” It shows Carly tearing around the house like an overwound toy, unable to stop. Chaos swirled around her like dust around Pig-Pen from the Peanuts cartoons as she darted from room to room, jumping up and down, flinging herself on furniture and the floor while bleating and whining. Discretion was not an option for us.
Carly’s Voice Page 4