The following is reprinted by permission, and was originally released 30 years ago. It is an anniversary that, at the time, I never knew we would celebrate. Please celebrate with us.
– L. Stewart Marsden
Greensboro News & Record, vol.75 no.348, December 14, 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.
Getting To Know Leukemia:
Finally, However Faintly, A Ray of Hope Is Shining
By Skip Marsden, Special to the News & Record
Early Saturday morning at Duke, the Blood Lady awoke us, pressing Graham’s arm to take two or three vials of blood.
“I want you!” he called out to us, trying to jerk his arm from her grasp. She held tightly and pushed the needle into his skin, drawing red blood into the capsules. I couldn’t do what she does in a million years.
Dr. Joanne Kurtzburg is a small, attractive woman with large, expressive eyes and a countenance etched with sympathy and compassion.
We repeated our story to her, and she examined Graham carefully. He looked much better than the night before. Color had returned to his face and lips, and his temperature and blood pressure were nearly normal.
Kurtzburg explained that the pediatric hematology/oncology group at Duke handled all malignancies and blood disorders in child patients. Graham’s symptoms and initial blood work pointed to leukemia but a bone marrow test would have to be done for a definitive diagnosis.
“Leukemia is cancer of the blood,” she explained. “Blood cells are made in the bone marrow, and sometimes something happens to alter the normal production process.
“In leukemia, white cells reproduce unchecked. They eventually crowd out red cells and platelets and other white cells. Over a time they spill into the bloodstream.
“With few red cells to carry oxygen or food, the body becomes anemic, and tires easily. Without platelets, a patient bruises easily, bleeds readily at the gums and cuticles. There is an increased probability of infection because of the imbalance in white cells. Complications are numerous.”
Then she spoke very slowly, emphasizing each word:
“Nothing you did or didn’t do caused this to happen to Graham. He didn’t catch it from a friend or family member; it wasn’t passed on to him genetically. It would not have made any difference in his treatment whether you had detected the disease symptoms a month ago or a month from now. There is no reason to carry any feelings of guilt or responsibility.”
We already knew these things intellectually, but emotionally Maggie and I had ripped ourselves open with the unanswerable whys and what-ifs. The absolution that came from hearing someone else tell us, almost order us to disregard the inner conflict, was a great relief.
“This is going to make a tremendous change in your lives and affect everyone around you,” she said. “You’re going to have to provide strength. All other serious problems from here out are not allowed.” She smiled.
What are the chances?
“Very good. We believe the bone marrow will show he has the type of leukemia that, if you have to have it, is being treated most successfully today. Nearly 90 percent of children who have this type will go into remission.”
How long will it take to get a remission?
“About three weeks. Sometimes less, sometimes longer. Today we’ll be starting Graham on a steroid called prednisone that will kill cancer cells in his blood and bone marrow very quickly.”
What are his chances of living once he’s in remission?
“That depends on the specific type of leukemia again. I can’t say for sure, but Graham probably has the most common variety of leukemia. More research has been done in this area in terms of chemotherapy, and consequently, we’ve had greater success. About 75 percent and more of patients currently being treated for this variety of leukemia are surviving five years and longer. Beyond that, we have very little reliable data, because there are few patients from the 1975 time period and before who have survived till now. The five-year survivors are the first wave of successful patients, and they may live 10, 20, 50 years without recurring problems.”
We wanted her to tell us Graham had a 99 percent chance of living forever, I suppose. We wanted pie-in-the-sky, over-the-rainbow hope.
“We will always tell you the truth. Graham’s chances are good. Your main objective is to take this one step at a time. You will receive all the help you need, all the information you want. But for the next 90 days or so, until we have had him in remission for a considerable time and have had a chance to fire the big artillery, all bets are off.
“Things will be tough, but I want you both to provide as normal a home atmosphere as possible. Go out, and leave him with sitters. Plan vacations and visits. Resume normal activities.”
“He was scheduled to start Montessori school in the fall,” Maggie offered.
“Good! Don’t change a thing. In fact, it is mandatory that Graham go to school this fall.”
Graham and his best friend, Tyka, take a breather. Photo by Joe Rodriguez.
As we talked, our spirits lifted. We began to see a little daylight at the end of the tunnel.
The interim between Kurtzberg’s pep talk and the bone marrow test was filled with phone calls. I called my sister, mother-in-law and minister, filling them in on the “good news” we had just received.
Graham is responding well to stabilization efforts. His color is returning to normal. The stomach pain is from spleen enlargement, and fluids and drugs are helping it return to normal. Looks like he has the best type of leukemia for chances of remission and recovery.
I called my mother and father in Georgia, where they were visiting my brother and his family. It was a tough call.
I knew what they wanted to hear – that Graham was doing well and responding to treatment, that it looked like everything would turn out alright. That’s what my father always told me, no matter what the situation. He wasn’t religious, just a die-hard optimist. So I told them everything was going to be all right. And I began to believe it.
I could tell that giving bone marrows to small children who are incapable of understanding the necessity of so much pain was something interns and nurses do not like to do. Graham picked up on the feelings even before we entered the treatment room, and began pleading, “I want you!”
He lay on his stomach. One of the nurses held his legs, another his back. I sat inches from his head, holding his hands and trying to console him.
Dr. Michael Clayton, a young intern on duty, swabbed the small of Graham’s back with a brown-colored antiseptic, then pricked the skin several times with a syringe of local anesthetic. Graham whimpered, biting down hard on his bottom lip.
Clayton then carefully positioned a large, hollow needle apparatus over Graham’s back hip bone and pushed the needle deep into the bone.
Graham screamed, “I want you! I want you! I want you!,” his face turning vivid red with pain and rage.
The bone marrow did not pull into the syringe easily. I could see the immense resistance of the marrow as Clayton strained to draw it out.
“It’s become very thick because of the blast cells,” he explained.
Finally it came – brownish-red flecked with tiny, off-white bits. The syringe was pulled out and the hole covered with a Band-Aid. I picked Graham off the table. He wrapped himself in my arms, tears and sobbing gradually subsiding.
We met again with Dr. Kurtzberg later Saturday in the conference room. Opening the door, I experienced a sinking feeling very similar to the dread I felt as a small boy being called to the principal’s office.
Kurtzberg sat at the middle of the conference table, flanked on either side by interns. On the table before her were several books. The title of the top book said it all. “The Leukemic Child.”
We sat down.
She smiled sympathetically.
“Graham has acute lymphocytic leukemia, or ALL for short. The bone marrow results are conclusive. That’s the bad news. The good news, as I mentioned before, is that the prognosis for Graham is very good. He’s the right age, with the right type of leukemia. What we’re waiting for now is to find out which variation of ALL Graham has. There are three: Type T, Type B, and Common.
“We strongly suspect, because of his blood count, that Graham has Common ALL. That means that his chances for long-term remission are the very best. To determine which variation he has, a sample of his bone marrow has been sent to a special lab, and we’ll know within a couple of days. In the meantime, all information we have on Graham is being sent to the POG center in Florida, where his chemotherapy protocol will be determined.”
What is POG?
“POG stands for Pediatric Oncology Group, and is made up of several hospitals and research centers around the nation. Information on patients and treatment results is pooled and constantly shared among member institutes.
“Basically, that means that Graham will receive the same care at Duke as he would at any other of the POG institutions.”
What’s going to happen now?
“We’re in what’s called the Induction Phase, where drugs like prednisone and vincristine will be given Graham in large doses. These drugs will kill blast cells and inhibit cancer-cell division. They will help us get him into remission.
What about the side effects?
“Constipation, soreness in the jaws.The prednisone is a steroid, and will make Graham hungry; vincristine will lessen his appetite.”
How long will be on chemotherapy?
“The program is currently mapped out over a three-year period. Protocols generally have three major parts: Induction, or going into remission; Consolidation, where we try to kill every last blast cell in the body; and Maintenance, during which things become a little less hectic.
“You both are going to learn more about leukemia over the next few months than you ever thought you’d know. In fact, you’ll probably know as much as we do by the time we’re through! But first things first. Let’s get a remission, and then go on from there.”
Maggie and I took the books and returned to the room. Graham was sound asleep, his splinted arm resting on a pillow, his face relaxed in sleep for the first time in many hours. Maggie sighed deeply as she watched him, and I moved to her side and wrapped my arm around her.
“Hey,” I whispered. “Happy anniversary!”
She turned and buried her face in my shoulder, tears tracking slowly down her cheeks.
Dr. Graham and Patient Jessica. Photo by Joe Rodriguez.