When Wonders Cease
by L. Stewart Marsden
when wonders cease
and gone the poignant pause of puzzlement;
when all unknowns
are solved and simply stated;
when awe is under-rated,
and deft minds fall on deaf times
and old rhymes beat dull and slow;
it is time to go
gentle,
into that good night.
While reading and editing what I wrote a little over 30 years ago, some memories come back quickly, while others are somewhat vague and removed. Knowing I can pick up my phone, or tap out an email, and be in contact with Graham is something I believe I have taken a bit for granted. I will try not to do that in the future. To remember this painful time is important.
— L. Stewart Marsden
Greensboro News & Record, vol.75 no.349, December 15, 1982
Skip and Maggie Marsden discovered a year ago that their 3-year-old son, Graham, has leukemia. The Marsdens were crushed by the news. Although they always hope for Graham’s improvement, the Marsdens have coped with his illness and learned to face a new way of life. Skip wrote Graham’s Story hoping others might also benefit from his family’s experience.
Part 4:By Skip Marsden, Special to the News & Record
Graham sat in his hospital bed at Duke, chattering endlessly, his bed strewn with puzzles, books and a dozen other toys.
“Oh, the sun’ll come out tomorrow…,” he sang in a shrill voice, not at all the same sick little boy we had admitted four days earlier. His temperature and blood pressure were normal; his spleen, once twice its normal size, had returned to normal; and, most importantly, he was his old cheery self again.
Maggie and I expected a much longer stay at Duke, but nurses and interns alike were alluding to the possibility of checking out soon.
We were somewhat ambivalent at the prospects of returning home. Should anything happen, we no longer would be able to press a button, or step into the hallway and flag down someone medically trained to deal with the situation. At Duke we had learned much about leukemia and chemotherapy, and the staff had worked hard to allay our fears; but the confidence within hearing distance, was something that would have to grow from day to day.
From the response of friends and family, we knew there would be plenty of support at home. We were literally heaped with cards and flowers and gifts for Graham, not to mention the phone inquiries as more of our friends heard of our situation.
The decision to discharge Graham lay in the hands of the hematology/oncology team. Its director, Dr. John Falletta, came in for a visit with Graham, followed by an entourage of interns and students.
Dr. Falletta has a British air about him: supremely confident, gentle-mannered and quiet-voiced. He is balding, with a precision-trimmed mustache, and dresses very properly in white physician’s jacket, dark slacks, shoes and socks. He exudes professional integrity, and his trail of would-be doctors obviously are in awe of him.
“Hello, Graham.” Falletta spoke to our 2-year-old son as though talking to an adult, without cutesy inflections or infant babble.
“I’m Dr. Falletta, and I’ve heard a lot about you. It’s a great pleasure to meet you.”
Silence from Graham, who busied himself attaching a ratchet piece to a toy drill he had received as a gift.
Falletta approached the bedside and leaned toward Graham, their faces inches apart.
“I’m going to examine you, and I’d like you to tell me if it hurts when I touch you. Will you do that?”
Armed with the drill, Graham smiled slyly and positioned the ratchet end squarely on Falletta’s dignified nose, then squeezed the trigger of the drill.
BRRRRRRRRRRRR!!
The ratchet whizzed around Falletta’s nose. Maggie and I howled with laughter, Falletta’s idolators tried to contain their shock, and Graham giggled hysterically. The unmussable physician took the drill from Graham and began his examination. From that point, Graham and Dr. Falletta were fast friends.
Next morning, to everyone’s delight, Graham’s IV was removed. Going to the bathroom, changing clothes, completing almost any normal function had been a major chore while the IV tubes were still attached.
We busied ourselves packing and saying our goodbyes to the many nurses whom we had come to love over the past few days: Wendy, Karmen, Kathy Fish (she wasn’t really a fish), Elizabeth, and others. Dr. Clayton, the intern assigned to Graham, who also had performed a number of sticks and pricks, dropped by to give us final instructions and to say goodbye. As he turned to leave, he hesitated, and Maggie caught his eye.
“I just wanted to say…” he said uneasily, “that you have a great family. Graham’s going to be just fine.” A tear formed in his eye, and he hurried down the hallway.
The ride home was joyous. Graham continued to rattle on, talking about Duke Hospital, the nurses, and “no more sticks!” every few minutes.
Maggie and I discussed what was going to happen at home, the changes everyone would have to make so life could continue without unnecessary strain.
Graham would have to be isolated, at least for a while, until his white cell count increased.
We would set up a chart for the administration of drugs, keep a record of his bowel movements and urination, and track his liquid intake. Jessica, Graham’s older sister, would have to be educated about leukemia. She could tell her friends and the neighborhood children why it was necessary for them to stay away from our house if they had colds, or why Graham was going bald, or had to wear a surgical mask from time to time. Luckily, the hospital had provided us one book especially prepared for children, with illustrations and text explaining leukemia and its treatment.
Arrangements had to be made with Montessori School teachers, and with Sunday school teachers – a thousand new details to concern ourselves with.
Homecoming reminded me of bringing a new infant home: gifts of food, visitors, phone calls. We were kept busy explaining our stay at Duke and Graham’s prognosis. Most people we talked to were surprised by our positive attitude, I think. They knew very little about leukemia and were amazed at the relatively unknown advances made against the disease over the past few years.
Also, Maggie and I were experiencing a sort of high, an exhilaration produced by a combination of the intensely emotional week we had experienced and the joy of returning home with with our son and with new hope.
It was ironic that we spent much of our time consoling others and trying to educate them, so that they could cope with our situation.
Graham’s first few days at home were good ones. He was in good spirits, and relatively active. We still hovered about him nervously, watching for signs that might tell of deteriorating health.
Graham bumped his eye with a toy car – we debated calling Duke.
He complained of stomach aches – we debated calling Duke.
The following Monday was our first outpatient visit to Duke for chemotherapy. The day before, Graham had been constipated, and Sunday night he had tossed and turned with stomach cramps. We were sure he would be admitted again.
The constipation was a normal reaction to his chemotherapy, we were assured, and the stomach cramps were probably a result of the constipation. We were given a prescription for a stool softener. He should begin regular bowel movements within a day.
Doing what most do at inpatient clinic: wait.
Photo by Joe Rodriguez
You cannot walk into any outpatient clinic for cancer patients without noticing the sobering side effects of chemotherapy. Thinning hair on both males and females makes it difficult to tell young boys from young girls. Here and there the more drastic signs: amputees, struggling to survive cancer.
We met a 15-year-old boy from Goldsboro who had been diagnosed with acute lymphocytic leukemia the same week as Graham. Lamar told us how he felt physically – something Graham could not yet do. He tired easily. His bones and joints often ached. Other than that, he felt normal, and he was anxious to return to school, to play basketball, to be with his friends.
The visit affected me deeply. Seeing the other patients, hearing the stories from weary-eyed parents, the reality of day-to-day life with a heinous disease pulled me out of my crystal palace. It was going to be a long and tough haul.
Tuesday, Graham seemed normal again. No complaints of stomach aches – nothing to give us concern. He played outside, riding his miniwheel on the front porch and singing loudly.
Wednesday he developed a fever. That was not uncommon with chemotherapy, and I went on to work. Nine o’clock that night Maggie called me at work. The fever had not abated but had reached 101 degrees, the warning level, and she had called Duke for instructions. They would call back.
At 10 o’clock she called again. “We’re going to Duke. Call home.”
It had been only one week since we had checked out of Duke Hospital. Graham lay in his bed, the IV once again fastened to his arm, his mother in bed beside him stroking his forehead with a damp cloth. I took a deep breath and sighed heavily. Where will the strength come from?
Graham at Montessori school, finds an opportunity to help a classmate. Photos by Joe Rodriguez.
Graham’s Story, Part Two
by L. Stewart Marsden
(Reprinted by permission)
This is Part Two of a six-part series of articles I wrote about my eldest son, Graham. That was thirty years ago. Today Graham lives with his wife, Sarah, and their two dogs in Reston, Virginia. Today is a thousand million miles away from that experience.
— L. Stewart Marsden
Greensboro News & Record, vol.75 no.347, December 13, 1982
Skip and Maggie Marsden discovered a year ago that their 3-year-old son, Graham, has leukemia. The Marsdens were crushed by the news. Although they always hope for Graham’s improvement, the Marsdens have coped with his illness and learned to face a new way of life. Skip wrote Graham’s Story hoping others might also benefit from his family’s experience.
Part 2:By Skip Marsden, Special to the News & Record
People ask Maggie and me how we managed to cope during those first few days of Graham’s hospitalization and testing. It’s a difficult question to answer. One thing for sure — had not the staff and facility at Durham been so open and warm to us, I don’t think I would be writing about the experience.
From the doctors and nurses to the very design of the building, everything seems to work for one common goal: the physical and emotional healing of those who come for help. And Maggie and I were in very great need of emotional treatment.
We arrived at the pediatrics ward sometime after 9 Friday night. The ward was sparsely populated with patients, and we were greeted by nearly every nurse on duty. Karmen, one of the nurses, showed us to our room. It was surprisingly spacious, with a crib, a wall bed, sink and private bathroom.
Maggie requested the steel-barred crib be exchanged for a regular hospital bed; Graham, 2 was accustomed to sleeping in a twin bed. The switch was made with no resistance. As time went on, we found that rules were bent, and sometimes ignored, when it came to providing comfort for Graham.
While we settled, a troop of variously ranked interns filed in to talk with us. They besieged us with a multitude of questions, glancing at Graham and nodding or grunting as we answered. We recounted everything we could remember about the events of the past week, and prior to that.
No, we never suspected anything but a common cold, or a bout with summer flu.
Heart problems on her side. Gall bladder complications on mine. Allergies on both sides.
No X-rays during Maggie’s pregnancy. No childhood X-rays. No problem with him either medically or emotionally before now.
The bowel movement.
Graham had been constipated for nearly two days. When we arrived in the room he had to make a bowel movement. Karmen had told us not to flush it.
“Bowel movement!” they all seemed to state in unison. Then five interns squeezed into our bathroom, closing the door behind them.
Maggie and I looked at each other quizzically in disbelief, then broke out in laughter! We composed ourselves by the time they exited the bathroom, each writing as energetically as before.
Each physician, or physician-to-be (it was difficult figuring out), gave Graham a cursory examination, noting bruises, glandular swelling and the abdominal discomfort.
“Here’s the situation,” one of the interns finally announced. “Our job tonight is to stabilize Graham’s condition. He’s running a temperature and his blood pressure and heart rate are extremely high. The temp could be caused by an infection somewhere. The blood pressure and heart rate are related to the low number of red blood cells in his system. Red blood cells carry oxygen and food throughout the body, and when the number is reduced, the heart has to pump harder to compensate.
“We’re going to put him on an IV with fluids, and then give him blood, but the transfusion must be given slowly. Too much blood too fast could strain his heart badly.”
The long day was going to stretch into a long, long night.
Graham’s abdominal pains were coming in waves of 20 minutes or so, doubling him up with the intensity.
“We’ll have to X-ray him to see what’s going on. It’s probably his spleen. We can give him some Tylenol for the pain.”
The insertion of the IV was difficult because of Graham’s small veins, and not accomplished without a great deal of pain. Once in position, with solution flowing, the doctors carefully taped Graham’s arm to a gauze-covered board.
Tears drying on his cheeks, Graham eyed the contraption with great curiosity before finally exclaiming in a tiny voice:
“It looks like a bird! I got a wing on my arm!”
Initially, Graham feared each new medical procedure he faced. It’s understandable. Except for his childhood shots, the only pain he had ever experienced at the hands of doctors or nurses was stitches once. Now, for no reason apparent to him, he was being stuck or pricked or prodded every other minute. He responded by stretching out his arms and pleading in a pathetic voice, “I want you! I want you! I want you!” to either Maggie or me. If one of us was with him during treatment, he invariably called out for the other.
After his X-rays, Graham finally was allowed to sleep. It was well past midnight, and we were all exhausted. Graham coaxed his mother into bed with him, and she held him close as he fell into a fitful sleep. I sat silently in the recliner and watched them, mother and child, cuddling each other while the minutes ticked us into a new future.
Every 15 minutes a nurse came into the room to check his vital signs. Every 40 minutes Graham would twist in pain and call, “I want you!” Maggie cooed to him gently, “It’s all right,” until he slipped back to sleep.
The outside world was so very far away from our hospital room universe; yesterday eons in the past.
Exactly thirty years tomorrow, on July 24, my then two-plus year old son, Graham Ross Marsden, was diagnosed with suspected cancer: acute lymphocytic leukemia, ALL, to be exact.
Today, Graham lives with his wife, Sarah, and their two dogs in Reston, Virginia. She is part of the Reston homeowners association team, and he is at a director level with Northern Virginia Family Service.
That focused period of the battle for Graham’s life, about five years, is long past. But, rereading the words I wrote for this series that appeared in The Greensboro News & Record, in Greensboro, North Carolina, brings it all back home very quickly.
I wrote the story because I had to. It was a cathartic exercise that enabled me to walk through that arduous event. I also had the satisfaction of knowing that many other parents in similar situations, whose stories never got told, would benefit as well.
Duke Pediatric Oncology Department reprinted the stories and made them available to the parents of cancer patients.
Parts of it appeared in a remedial reader in its first edition, “The Proficient Reader,” edited by Ira Epstein and Ernest Niertatka and published in 1984 by Houghton-Mifflin. I don’t think you can get a copy of that edition anymore.
News & Record staff photographer Joe Rodriguez shot the photos for the series. His wife, Mary, presented them to me in a special book for that Christmas. I still have them. They are the shots I present with the articles.
I invite you to follow the next six blogs beginning tomorrow. One blog per Part. Each of the stories appeared on the front page of the paper over six consecutive days beginning December 12, 1982.
The response was overwhelming.
L. Stewart Marsden, July 23, 2012
The Donuts
by L. Stewart Marsden
I’ve gathered you to remonstrate
about the mystery of this plate
of donuts I provided for this morning.
There were enough — I counted them
to satisfy this group of ten
and all were to have eaten only one.
So I, as host, held my hand back
so all of you could well attack
the tasty morsels which I did provide.
And when I came to pluck my one
I was sincerely hurt, undone
For none was left, save little tiny crumbs!
So now I must accuse, eschew
and point my finger straight at YOU —
WHO I do know:
YOU Et TWO, Brutus!
All that work for one lousy pun!
Getting Ganglia Going
by L. Stewart Marsden
Getting ganglia going —
Snapping synapses
Tensing tendons
Moving muscles
Coaxing cognizance
Revving recall
Fighting flight
Back to the nighthall
Harbor from horrors.
Time to awaken.
Writing Odds n Ends 