Over Easy, Please

Over Easy, Please
by L. Stewart Marsden

When my wife and I lived out in Portland, Oregon while she attended OHSU School of Midwifery (if-ery, not ife-ery), I visited her at school one day for lunch. The school cafeteria had a breakfast bar set up where a short-order cook would respond to special requests, such as soufflés and scrambled eggs, etc.

I slid my tray up to the cook and asked for “Two eggs over easy.” The cook looked at me, his head tilted askance, a quizzical expression on his face. He was from India, and so I took the hint and told him what that meant and how to cook them.

So, nervously, for the very first time in his life, this man attempted the order. Now I do most of the cooking in my house, and two eggs over easy takes, maybe, four minutes to complete. This guy was so nervous, and so intent on doing it right, that he went through six eggs before successfully completing the order.

Last year — November 11 to be exact — Armistice Day — I launched my WordPress blog and my very first post: “In Support of Public Education.” Just like that short order cook at the OHSU cafeteria, I was both nervous and intent on doing it right. I had never written a blog before, and hardly knew what a blog was.

And, just like that inexperienced short order cook, I stumbled along.

As I wrote my posts, in my imagination America held its breath for each new upload! I could hear the throngs cheering in my head — “Hurrah!” It was like Ralphie imagining his teacher’s response to his essay on “What I Want for Christmas.”

And, like that selfsame scene, the reality was far different.

So I wrote and I wrote and I wrote. My real intent was that writers who are out there in internet land would give me real comments, like, “I thought you were a little heavy-handed with the hero in that part of the book,” or, “I can say I knew you when!”

But I soon learned that the “Like” button in WordPress is sorta like the “Like” button on Facebook. It’s a sort of noncommittal committal, if you know what I mean.

And, I learned that a lot of people who “like” my writing, want me to “like” their writing. I learned to go on people’s blogs and actually make a comment about either their “About” page, or one of their posts. That way, people visiting those blogs would see my comment and, perhaps, come for a visit. Kind of a snowball effect.

I know you don’t do this, but I would toggle back and forth between my email and the stats page for my blog, watching to see how many people were viewing my blogs. That was a killer!

Is anybody out there? I would think to myself. Not think. Cry to myself.

Then, I got an email that someone wanted to link to a children’s story I had written and posted, “Stinky and the Night Mare!” Not just someone, but a real honest-to-god agent! I said yes, and over the next few days I got more than 30 views! (Now you know why I was crying to myself.)

I was on the cusp! The verge! The precipice!

Then, boom. That’s the sound of the door slamming shut. While the agent raved about the story, she then said I was an author without a voice. That I needed to focus and perfect one genre. That I was not a good risk.

Pooh.

That was around January/February of this year. I went back to the research and early drafts of my historic novel (I call it hysterical) “The Huguenots.” As a result, I took a trip to Delaware — Wilmington, to be exact — to visit and volunteer to help ready the Kalmar Nyckel, a reproduction of a 17th century tall ship. During the drive up, I decided to scrap most of what I had written so far on the novel, and take a slightly different angle. I had more than fifteen chapters written.

Also, more importantly, I threw my hat into the ring to try the National Poetry Month’s challenge: a poem a day.

I’m not a poet.

But that experience of writing every day and posting resulted in two very important things: a dedication and discipline to write something, anything, every day. The second was I began to make blog friends, with whom I was able to get that much-needed feedback.

So things gradually continue on my blog. I have a boat-load of poems — some of which are ok. I have a surprising number of short stories, which have a kind of dark and macabre tone.

As a result, I’ve decided to publish my short stories in a collection I call “The Shadow Pool.”

I met a really terrific artist, Ray Ferrer, who is illustrating both my short stories and the cover for the book. His blog is urbanwallart. He’s listed under my favorite blogs and you can link to his web page there.

I have recently completed uploading a series of six articles that were written thirty years ago. I wrote them when my then two year old son, Graham, was diagnosed with Acute Lymphocytic Leukemia. The response to those articles has been gratifying and overwhelming. Graham and I are planning to write a followup in the next few months. I’ll post it, of course.

Well, this seems to be a whole lot about me. But really, I’m wondering if you have experienced any of the above? I visit blogs where the authors say “I don’t know how to ______________ (fill in the blank)” and I think, like Nike, “Just Do It!”

Probably a mantra by which many could benefit.

And, Over Easy, Please.

Graham’s Story, Part Six

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.

Can you guess?

Guess!

Found in my yard.
Two of the same.
One is dead, the other, not.
Seventeen year lifespan.
Subject of a short story I’m working on.

Can you guess?

Graham’s Story, Part Five

Graham’s Story has drawn the most number of views from the most numbers of countries than anything else I have posted before. I am not surprised. My hope is that many are informed, and that many are encouraged as a result.

– L. Stewart Marsden

Greensboro News & Record, vol.75 no.350 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 5:

The Treatment:

Alphabet Soup Of Medication

By Skip Marsden, Special to the News & Record

During the first 90 days of Graham’s treatment for leukemia, he has been in hospital on an inpatient basis for 21 days, has been given over 20 different kinds of drugs, has undergone five bone marrow tests and three spinal taps, has had at least 30 blood tests and 10 urinalyses, and has seen about 20 different physicians and countless nurses, physician’s assistants and various practitioners. The total cost for treatment for that time is between $15,000 and $16,000.

Chemotherapy is warfare. Concentrated, highly complex and often frustrating, a full battle is waged against cancer cells with one objective: total annihilation of the enemy. One microscopic blast cell anywhere in the body is enough to rekindle the devastating process of unbridled cell division.

The drugs are complicated. Prednisone, vincristine, L-Asparaginase, cyclophosphamide, methotrexate, hydrocortisone, arabinosyl cytosine, mercaptopurine –  each administered in particular amounts, in particular sequences, with specific objectives.

Simply put, chemotherapy poisons the body – kills certain cells, or inhibits cell division, or denies cells certain proteins and vitamins. It is a delicate balance of weakening the body to the point that cancer cells become vulnerable, yet not so much so that the body cannot fend off disease and infection.

Graham’s chemotherapy is divided into three parts: Induction, Consolidation and Maintenance. The first two parts are the most rigorous, and occur during the first 20 weeks or so of the therapy. The third phase, Maintenance, is less difficult, and will cover a period of roughly 2.5 years. At the end of this time, if Graham has remained in remission, he will be taken off chemotherapy for a period of about two years, during which time regular bone marrows will be administered to ensure that he is OK. If he remains in remission without chemotherapy, he could be pronounced cured.

The purpose of the first part of chemotherapy, Induction, is to induce a remission. Remission is when no cancer cells can be found in either the blood or bone marrow. Graham was given two very strong drugs to induce remission: prednisone and vincristine. Prednisone kills lymphocytic cells, while vincristine prevents cell division in quickly dividing cells. Graham experienced a range of side effects, from moodiness and constipation to slight hair-thinning.

By August 9, Graham officially was declared in remission as a result of his bone marrow test. Maggie called me at work from the hospital with the news. That night I celebrated the victory royally!

Consolidation, the next phase, is a period in which high concentrations of drugs are administered over a span of about 16 to 18 weeks. The effort is made to destroy and/or deny the growth of any cancer cell that has managed to find a niche in the body to hide until after the chemical fireworks are over.

In comparison with the medications one is readily familiar with, these drugs are exotic and not without risk.

***

The fifth week of his treatment, Graham was given two very potent drugs plus a bone marrow. One drug, Cytoxan, attacks the nuclei of rapidly growing cells and injures them. The problem with the drug is that it attacks all fast growing cells, including normal cells – the lining of the mouth and stomach, hair cells. Graham was quite ill that night, throwing up well into the early morning.

L-Asparaginase, the other drug, was even more frightening. A series of 14 consecutive injections, one each day, were to be given. Our pediatrician in Greensboro had agreed to administer the drug. At Duke, Maggie was given several boxes of L-Asparaginase to deliver to him.

L-Asparaginase, acts specifically in starving leukemic cells of a protein necessary for cell division. Normal cells have the ability to synthesize the protein and are affected by the drug for a short time.

She was told at Duke that there possibly could be a very rare allergic reaction to the drug, but it was only moments before she left for the doctor’s office that she realized just how serious the reaction could be. Taking out one of the boxes of L-Asparaginase, Maggie read, WARNING: MAY CAUSE SUDDEN DEATH.

She tore open the box and read the accompanying medical report. The report was repeated: Allergic reactions to asparaginase are frequent and may occur during the primary course of therapy. They are not completely predictable on the basis of intradermal skin test. Anaphylaxis and death have occurred even in a hospital setting with experienced observers.

It was the kind of information one would rather not know. Driving Graham to the doctor’s office that day for treatment seemed nearly the same as playing Russian roulette.

A syringe of adrenaline was prepared prior to the shot of L-Asparaginase, to be plunged into Graham’s heart in case he reacted to the drug. The drug was given. Dr. Rubin stayed in the room with Graham, monitoring his heart rate rate and blood pressure. Thirty tense minutes of observation passed. Nothing happened.

The same scenario was repeated daily for two weeks. An allergic reaction was just as likely on the last day as on the first, but we all gradually relaxed after the first week of shots produced no negative response.

The shots were given on a rotating basis – first Graham’s right arm, then his left; then his right leg, and then his left. He complained about having to have so many shots, but he never indicated any resentment toward the doctor or us. He seemed to accept as fact that we loved him, and that the shots, painful as they were, were for his health.

Hair loss is one of the effects of chemotherapy. It is the most benign effect.
Photo by Joe Rodriguez

Hair loss came rapidly. We took Graham to look for hats to cover his balding head, and he picked out a Boston baseball cap (it was the last one on the rack, or we would have New York). Initially he didn’t want to wear the cap. Now, he would sleep with it if we didn’t insist he take it off during the night.

Our schedule for Consolidation should have ended between Christmas and the New Year. But Graham, like other leukemia patients, sometimes has to delay his chemotherapy because of problems encountered as a result of his treatment.

We began a 12-week period using a drug called methotrexate just before Halloween. The drug is given in his spinal tap on Monday, then repeated through an IV on Tuesday, Wednesday and Thursday in the attempt to root out foreign matter.

For some unknown reason, cancer cells can fool the protective barrier and enter the CNS, growing in the brain and nerve cells and causing serious problems. Unfortunately, the barrier effectively screens out the chemicals that fight cancer cells, so other means of administration of chemotherapy cannot be counted upon to keep the CNS protected from leukemic cells.

Graham reacted to the methotrexate, developing severe mouth sores. The sores caused a temperature, and he was unable to eat or drink. He soon became dangerously dehydrated. His lips cracked and bled. This occurred within a period of 36 hours, with constant contact by phone to Duke. The end result was a five-day stay at the hospital, with IVs pumping fluids back into his body and gentle treatment of the mouth sores.

***

During his latest stay in the hospital, Graham asked Maggie, “Why do I get shots all the time that make me sick?” She explained that he had leukemia, and that the shorts were necessary to make him better.

“I don’t want my leukemia to go away,” he said sadly.

“Why?” Maggie asked softly.

“Because I will get lots of shots and will get sick.” What he meant was that the cure for the disease made him feel a lot worse than the disease ever had.

This is an experience for my whole family, but more for Graham than any of us. Some say he’ll forget about the rough treatment when he is older, but I doubt it. I think he’ll remember this for the rest of his life. It’s too difficult a process for anyone to forget.

One of the products of this process is Graham himself. He is one of the most courageous people I’ve ever had the privilege of knowing. He has rejected none of the doctors or nurses who have treated him. He hasn’t withdrawn at all, except when he is feeling sick. He doesn’t scream when we tell him we’re going to Duke, or to Cone Hospital (although he knows those visits will mean at least a shot, and sometimes more pain).

What is happening, I think, is that a tremendously strong character is being revealed through this very tough experience, a character that will prevail long after all the shots and bone marrows and spinals are over. And that, after all, is the real hope.

Remember when?

Remember when?
by L. Stewart Marsden

There’s a Facebook fad (FF) that I’ve noticed of late. It’s the “Do you know what this is? Do you remember this? Do you remember when?” fad. You know what I’m talking about, right?

I’m not sure what’s causing it. Maybe it’s a throw-back to when we were kids and we came out of a movie and everyone started talking, “Yeah, and remember when that guy . . . ?”

Remember doing that?

Saturday Night Live’s Chris Farley (remember him?) developed a character who interviewed people, like Paul McCartney, and would ask, “Remember when you were in ‘Yellow Submarine?’” Etc.

So, there are pictures of things we no longer use, along with the question “Do you know what this is?” as if to say, “If you don’t know what this is, well — YOU”RE AN IDIOT!”

Things like:

• old vacuum tubes for radios or TVs;
• the foot button that controlled your high beams on your car;
• a hand-crank ice cream freezer;
• an old rotary dial telephone;
• an ice box;
• glass milk bottles;
• a dairy home-delivery truck;
• an engineless push mower;
• a hand-crank drill;
• and much, much more.

Why do I need to remember these things?

And then there are pictures with the question, “Do you remember . . . ?” again, as if to say, “If you don’t remember this, well — YOU’RE AN IDIOT!”

• Buffalo Bob and Howdy Doody;
• Captain Kangaroo and Mr. Green Jeans;
• Beaver Cleaver;
• Rod Serling;
• The Cartwright family;
• Ozzie and Harriet;
• Perry Mason;
• Andy Griffith and Don Knotts;
• and, again, much, much more.

Again, how do I benefit remembering this stuff?

Not that these memories don’t conjure up days when life was really very different from today. You know, the “good ol’ days.”

But times change. Technology changes.

My dad was born in 1919. He lived through the advent of technology that included radio; television; nuclear energy; satellites; space exploration; computers going from multi-room configurations to the laptop; rotary dial telephones to cell phones; film cameras to digital; Model T cars to the Chevrolet Corvette. And a whole lot more! You know someone like that, chances are.

And guess what? I never remember him asking his contemporaries, “Do you know what this is?” or “Do you remember?” He simply enjoyed it all.

It’s not like any of us has much to do with all of these memories. They are part of our past. They are milestones and markers of the passage of time. None of us is any wiser, or any less of a person because of our remembering these things.

Save it for your kids. Amaze them with the hardships of your life having to live without HDTV, or texting, or microwave ovens, or tablets, or Beano.

Yes, I do remember most of the stuff. I want to shout back, “Don’t YOU?”

Okay. I feel much better. Got that off my chest.

So, whatever you do, don’t forget this post!

No offense meant

I have no idea who came up with the following joke. I’ve kind of made it my own over the years. It has resulted in a few yuks. Again, for the religiously sensitive, I mean no offense!

Photo from Wikipedia

So Peter is at the Golden Gates sending people through to Heaven, or to the other place. He’s had a particularly rough day, and sees Jesus walking down the Golden Highway.

“Hey, Jesus!”

“Yeah, Pete?”

“Think you could spell me for awhile? It’s been a crusher day and I could stand a cigarette and a cup of Holy Java.”

“No problem!”

So the Lord takes over and an old, old man struggles up to the desk.

Jesus asks the old man, “Tell me about yourself.”

“Well, in life I was a carpenter.”

Jesus takes notes.

“And, I had a most unusual son, who had nails in his hands, and nails in his feet.”

The Lord looks up and scrutinizes the old man carefully, then asks,

“Father?”

The man looks back hopefully,

“Pinocchio?”

Budda-bum!

Graham’s Story, Part Four

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:

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?

Graham’s Story, Part Three

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.

Part 3:

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.

Your Order, Sir?

Your Order, Sir?
by L. Stewart Marsden

I’d like a dull moment, if you please,
served over ice,
with a nice sprig of mint,
and a prolonged period of peace.

Says the next guy  over,
“I’ll have the same — but make mine a double.”

Graham’s Story, Part Two

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:

At the Hospital, A Search For Answers Begins

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.