Graham’s Story, Part Four

27 Jul

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.

Graham's StoryPart 4:

Home From the Hospital:

The Relief is Short-Lived; A Week Later He’s Admitted Again

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?

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One Response to “Graham’s Story, Part Four”

  1. Catherine Dexter July 27, 2012 at 10:43 am #

    Aah..little shoes. x

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