This concluding article in the series in no way ended our journey to recovery. More setbacks were ahead, but our eyes were on the moment. You can concern yourself so much with what might happen, that you lose sight of the present and what is happening. Finally, we were focused on the now.
– L. Stewart Marsden
Greensboro News & Record, vol.75 no.351 December 16, 1982
Last July, 3-year-old Graham Marsden was diagnosed as having leukemia. Skip Marsden, his father, has written this series to tell his family’s story.
Part 6:
Surviving The Ordeal of Illness:
It’s Not Only The Victim Who Suffers; Family Members Pay In Anguish
By Skip Marsden, Special to the News & Record
It’s not easy doing battle day in and day out. You get weary. You get cranky. You react to the most insignificant things and blow them into mountains. You crawl into holes later, ashamed at your weakness. You become painfully human at times when the demand is for superhuman efforts. It is at these times, when you feel most frustrated and most abandoned, that the slightest bit of help is joyfully appreciated.
Jessica had come down with a bug that had her coughing and complaining of a sore throat. Her temperature zoomed up to 104 degrees before we could get her to a doctor. Aside from concern for her, there was the added worry that Graham might catch the germ. It was shaping up to be one of those times.
Maggie had taken Graham to Duke on Monday, Dec. 6, for his fourth week of methotrexate, administered into his spinal fluid. Tuesday he was to receive a second dose intravenously in Greensboro, then again on Wednesday and Thursday. To avoid being stuck each day, a special device called a heparin lock, a small capped tube attached to a catheter that is inserted into a vein, would be the administration point for the methotrexate for the three days.
The first attempts at establishing the heparin lock were unsuccessful after nearly two hours. The toll of more than three months of chemotherapy had made it more difficult to penetrate successfully his hard-to-find veins. It was frustrating for all involved, and extremely painful for Graham.
We were able finally to establish the heparin lock later that day, much to everyone’s relief. His treatment could proceed.
Chemotherapy lowers the blood count, and consequently makes the patient less able to combat infections. The week progressed, and our anxiety increased as Graham developed symptoms that pointed to either the same virus his sister had, a reaction to methotrexate, or both.
Six weeks before, Graham had reacted severely to the methotrexate, his lips developing nasty blisters. Because his mouth was so sensitive, he was unable to eat or drink much. His temperature went up, and we spent Halloween night trying to decide whether to go to Duke.
By the following morning, Graham had dehydrated so much that his condition was serious, and Maggie rushed him to Durham. They stayed in the hospital for a week. It was the third stay in the hospital in three months, the first being his diagnosis, and the second caused by a bacterial infection. His reaction over Halloween weekend was the result of toxicity of chemotherapy, so his doses of methotrexate had been lowered to avoid a fourth visit.
But this last week it appeared we were going to repeat the scenario when Graham began to refuse food and fluids. Our fears of severe mouth sores and dehydration prompted us to contact Duke that Thursday. After consultation with Dr. Harry Friedman, part of the hematology/oncology team, we decided we would check Graham into the emergency ward at Cone Hospital if necessary. There he could be administered leucovorin, a “rescue” drug that neutralizes methotrexate and prevents it from doing further damage.
That night, Graham perked up and ate a full plate of spaghetti and drank juice. He didn’t need the rescue drug after all. We thought.
Friday, Graham was listless. His temperature had begun to fluctuate between 99 and 101 degrees. He had also begun a dry, hacking cough. By this time the leucovorin would be of little use.
Maggie and I were on edge. Every few hours we phoned Duke for instructions. We had bloodwork done to check his counts, which turned out to be OK, but there was no way to determine how much lower his counts were going to fall because of the combined effect of the virus and chemotherapy.
Tension mounted. We snapped at each other, aware inwardly of what was happening, yet almost helpless to control our razor reactions.
Saturday, we were to have dinner with Pam and Randy Zentmire, our closest friends, but we were afraid to leave Graham in such an untenable situation. I called and suggested they come to our house instead, so we could be near if things went awry. They declined. We sulked.
Fair-weather friends, we mumbled to each other – half joking, half serious. Good friends were getting harder to find.
Thirty minutes later came a knock on the back door. It was Pam, laden with a bottle of wine in one hand, a bag of oranges in the other, and a big, warm smile on her face.
“I thought you guys might like these,” she said.
In the end, our fears were unfounded. Graham neither had the chemotherapy reaction nor did he pick up the virus from Jessica.
Community Theatre of Greensboro has just completed a run of Michael Cristofer’s “The Shadow Box,” a drama concerning the final days in the lives of cancer patients. Integral to the theme is the reaction of loved ones to the impending deaths of the three patients.
Feelings run the gamut from dogged denial to hate and outrage. Yet, as different as the reactions are, each is a valid expression of fear and uncertainty about morality.
The basis of our frustrations over Graham lies not so much in the amount of physical suffering he might go through as a part of his treatment, but as to whether he is going to die from leukemia. That’s the root. And faith doesn’t always immediately diffuse the gnawing anxiety that periodically builds up.
What does help, more than anything else, is the kind of support that says, “Hey, I know you’re hurting, and if I can lessen the hurt by listening, or holding your hand, or by just being near, then you can count on me.”
By the end of January, Graham will have completed the second phase of his protocol and will enter the Maintenance phase, a period of approximately 2 ½ years of relatively simple treatment when compared to the Consolidation phase he is in. At the end of that time, he will be taken off all chemotherapy and will have periodic bone marrow tests to confirm that he is still in remission.
After two years without chemotherapy, Graham might well be forever cured, and we see and pray for that day. Success statistics for acute lymphocytic leukemia, as with other cancers, are changing rapidly as researchers continue to make great strides forward in treatment.
We believe Graham will be among a group of leukemia patients who will usher in a cure rate for acute lymphocytic patients that is more than the current long-term survival rate of 75 percent.
I want to assure you that not every patient reacts as strongly to chemotherapy as our son has. Many chemotherapy patients never get sick, never lose hair, never develop mouth sores. It is, in fact, unusual for a patient to be hospitalized as many times as Graham was during his first 90 days of treatment.
What Maggie and I have found so far in this experience is that there is every reason to hope and believe that each new leukemia patient has an increased chance for long-term survival. The process of achieving a cure, no matter how difficult it might seem to be, is also affecting the spirit of the patient. It can be a very positive life-changing time for all.
To all of the many people who are supporting us in this time, to our family and to the many readers who have phoned to offer encouragement: God bless each and every one of you, and have a very Merry Christmas.
This is the conclusion of the daily series of Graham’s story. Periodically, Skip Marsden and Staff Photographer Joe Rodriguez will update Graham’s progress.
