Requiem
I
He was born on Valentine’s Day and is convinced that is why everybody loves him so much.
He must memorize a scripture verse for Sunday school and chooses the 100th psalm as his favorite: “Make a joyful noise unto the Lord, all ye lands.” His favorite Christmas song is “Hamsters Roasting on an Open Fire.”
Before he goes to bed at night, he lays his clothes out in the exact position he is going to wear them the next day, hat to shoes, so that it looks like a deflated little boy is lying on the floor in his room.
He wants to be a teacher when he grows up so that he can farm in the summertime.
When we come to a stoplight he says, “Red means stop, green means go, yellow means go a little faster!”
When a classmate of his cries because she breaks a crayon, he says, “Hey!Now you have two!”
He has an infectious giggle and he fills a room when he enters it.
He has white blonde hair, big brown eyes and shiny black eyelashes that go on forever.
He is my Alex.
II
Heattends an April Fool’s Day party at Skateland, the local roller rink, and later in the evening he complains about sore ribs and a stomach ache. He says he’s fallen down a few times while skating and I know he’s eaten a bunch of junk food at the party. I look at his abdomen but I don’t see any bruises. I give him some Tylenol, read him a story, say his prayers with him, give him a kissand a hug, and tuck him in with the evening’s song, “Good night and God bless you. I’ll see you in the morning.” He awakens in the night with bad dreams about wolves circling his bed, snarling and growling.
When he still complains the next day, I take him to the doctor, who suggests I give him some Milk of Magnesia for his stomach ache. The following day I call the doctor and laugh when I say that the Milk of Magnesia seems to have done the trick, and that I don’t know what he’s eaten, but hehad a bowel movement that looks like a corkscrew. The doctor doesn’t laugh. He gets very quiet and says to bring Alex in. When we get to the office, things quickly become surreal and scary. The doctor takes out a tape measure and stretches it across Alex’s belly. The next thing I know, we are in the Radiology Department at the local hospital.
When we find the tumor, it is the size of a grapefruit. Because it has grown outward from the spine, it isn’t visible in its early stages. So now we have a mission. Our pediatrician sends us to Duke University Hospital to be seen by the oncology staff. Alex is examined by a team of surgeons and interns who tell us that before anything else can be done, the tumor must go. His operation is scheduled right away.
The tumor is removed, but because itis so large and not encapsulated, it “spills” during surgery, leaving remnants that must be cleaned up with chemotherapy and radiation. In addition, further tests show that the tumor has metastasized into the marrow. The head surgeon cannot look me in the eye when he says the picture is bleak.
The tumor is identified as Stage IV Neuroblastoma. Alex and I look up the word together. We learn that NEURO means NERVE, BLAST means IMMATURE, and OMA means MALIGNANT. Alex thinks that Stage IV means “I – Vee”, as in intravenous. I know that Stage IV is bad news. Neuroblastoma is characteristically a tumor of infancy. Alex has just turned six years old. More than anything, Duke’s pediatric medical community is surprised that he is still alive. He is given a 5% chance to live if he undergoes treatment.
He wants to live. He drinks the obligatory toxic cocktails, endures being tethered to IV poles, feels sick, feels tired, feels scared. He is on a three-pronged rotation of drugs. For one of the treatments, he goes to the outpatient clinic, where he lounges in a Lazy Boy recliner. The other two drugs are caustic and have the potential to burn his bladder, so he must be hydrated during their administration. He receives these drugs in the hospital for three days at a time two weeks of the month. He is a cheerful presence on the pediatric floor when he is “in-house” at Duke. He forces himself to get up and walk the halls, using his IV pole for balance. He goes from room to room visiting his new buddies. He goes to the playroom and works on the Lego table to pass the time. He wants to be home, though. He misses his brother. His father never visits, and he asks me why. I know his father cannot cope. I am unable to explain what I do not understand. I tell him that I am the lucky one because I can be with him all of the time.
He puts his own stamp on cancer, taking ownership of his disease. He loves school, so he climbs onto the bus every daybetween chemotherapy treatments when his counts are up and he is less susceptible to infection. When he begins to lose his hair, he checks under the pillow in the morning to see if the Hair Fairy has come in the middle of the night. As he gets skinnier and balder, he takes particular delight in his radical appearance, making weird faces, enjoying the shocking effects that he creates. He especially likes casually removing his engineer’s hat and acting horrified to see it full of hair, his mouth a perfect “O.” Then when his audience reacts, he shrieks, “Psyche!” I teach him to write in cursive because he insists on signing every consent form that the doctors and hospitals produce. Mostly, he wants to be in control of his life.
After nine months of treatment, blood workand bone marrow samples show no cancer cells, but an MRIshows a spot on his spine. I have to tell him that if what we see in the scanis tumor and has to be removed, the chances are good that he will never walk again. He thinks for a moment, puts his bony hand on his chin and says, “Well, Mom, I don’t mind being in a wheelchair, but I do mind dying.” He beats back death with a sword of hope, such a faithful, happy warrior.
The spot turns out to be a shadow on the X-ray film, and not tumor, so he has a chance to fight. His doctors tell us that Neuroblastoma is an aggressive cancer and is certain to return. The only possibility for survival is to have a bone marrow transplant while he is in remission. Time is of the essence. If we can find a donor, he will be eligible for the protocol that the University of Florida at Gainesville is piloting at its teaching hospital. There is an available bed in the unit. It is our choice. Choice? What choice is there? His father, his brother, and I are tested for donor eligibility. His brother is a perfect match, a statistical rarity. I bring my boys together and tell them that one has the chance to save the life of the other. The donor procedure isn’t risky, but it is painful. Matthew doesn’t hesitate to volunteer. He says, with the certainty only a nine year old can feel, “Gosh, Mom. Why wouldn’t I?” Thus, as they say, begins our longest journey together. We decide to take the train.
III
Amtrak’s Carolinian pulls out of the station in Raleigh on a chilly dusk in early January. We move into our sleeper car, unpacking books, stuffed animals, toys, and snacks. As the train makes its way southward, we feel the excitement of an adventure tinged with fear. This is our only hope. We have done everything that the protocol prescribes: surgery, chemotherapy, radiation, climbing on to a roller coaster that you don’t have to be “this tall” to ride. Dusk turns into purple twilight. I can see into the windows of the houses we pass in the small sleepy towns – families having dinner, watching TV, doing chores – and I feel homesick and alone. We go to the dining car, and the absurd vision of Lucy Ricardopulling the emergency stop cable on another long-ago train in an I Love Lucy episode pops into my head. Fred Mertz is covered in mashed potatoes. I long to find something, anything, funny. I cannot remember the last time I have laughed.
After dinner, we return to our sleeper car to settle in for the night. The boys go to the bathroom to pee, wash faces and brush teeth. They put on their pajamas and call dibs on the upper berth. I sleep on the lower bunk.
I am privy to the quiet confidences between brothers.
“Hey, Al?” Matthew asks. “Are you scared?”
“Yeah, I guess. Are you?”
“Nah. I mean, they’re going to put me to sleep, and when I wake up, I can eat everything I want and watch TV in bed. I can never do that at home, man!”
“Yeah,” Alex replies. “Matt?” he says after a moment. “Thanks for being my brother.”
“What else would I be, dork-face?” Matthew answers.
Alex takes his teddy bear by the arm and smacks Matthew in the face with it. “Psyche!” he screams. “Monkey-butt!”
They wrestle and tickle each other until I tell them to settle down. Tomorrow is going to be a big day.
I listen to the rustling sounds of sheets and blankets, see the impression of an elbow here, a knee there, in the mattress above my head as they shift into positions for sleep. I am so in love with my sons. Their candor moves me. I am humbled by their fear, exalted by their courage. We drift into sleep.
Some time later I am awakened by the awareness of their presence. The boys have climbed down into my bunk, Alex snuggling under my right arm, Matthew under my left. I kiss one on the temple, the other on the forehead. I surrender to the rhythmic rocking of the train as it speeds inexorably toward our destination.
IV
The train arrives at the station in Gainesville, Florida at dawn the next day. We head straight for Shands Hospital to admit Alex and Matthew to their respective rooms: Alex to the Bone Marrow Unit, Matthew to pediatric surgery. They are on different floors, in different wings. Where am I to go? Who needs me more? We are to discover that this final phase will be unlike any other we have experienced so far. On Alex’s chart a medical student haswritten the acronymic code,FLKWNBSIV - T, which I learn is teaching hospital short-hand for “Funny Looking Kid With Neuroblastoma Stage IV - Terminal.” His wall chart lists him as A+. I think that is because his teacherfrom Elon Elementary hastransferred a grade of excellence from his progress back home to his hospital tutor. A+ is his blood type.
V
Before Alex can accept his brother’s harvested marrow, his own immune system must be destroyed. He receivesmassive doses of radiation and is placed in his hepa-filtered environment. He garglesantiseptic as a preventive measure against saliva borne infections and his mouth fillswith painful sores. All of his books, toys, and stuffed animals must go through the autoclave for disinfection. There is the disturbing possibility that his eyes have been insufficiently shielded from the radiation and that he might become blind. An optical team is scheduled to visit him later for evaluation. I begin to feel the anger rise. Do dead children need to see?
His brother’s marrow is irradiated and transfused into him. We wait. We know the odds, but this is the chance we have been waiting for. He hasspent thepast year in and out of hospitals and clinics, a year of indescribable suffering, a year of hope-filled experiments, a year of isolation, of lab reports, more scans, new drugs, a year of last resorts.
Through it all, Alex hasfound the strength and humor he needs to survive, but the transplant kicks his ass. He is down to 40 lbs., anti-inflammatory steroids bloating his frail body, skin stretched tightly across his bones, his sweet face pulled into a death-grimace across teeth that are too large for his sore, shrunken mouth. The drugs, procedures, tests, and pain are taking their toll and forthe first time I see Alex lose his optimism. At the end of January, his classmates make a video and send it to him at Shands. It is a broadcast of WALX TV, giving him all the news of Elon Elementary School, complete with 6 year old news anchors, a weather girl, and a sports report. He turns his head away, refusing to watch it, telling me to turn it off. It is the only time I see him cry since he has been diagnosed. He says he feels like a liar because he told his friends he’d be back in school in the fall and he doesn’t think he is going to make it. It is thenthat I understandwhat Gilda Radner means when she says that dying makes her feel like a fraud.
I tell him how sorry I am. He says, “This could happen to anyone, Mom. It just happened to happen to me. It’s not your fault.” I tell him that isn’t what I mean. I mean that I am sorry because he will never drive a car, or kiss a girl, or teach, or have a garden, or be a dad. He says that is OK because he has me.
On Valentine’s Day, we quietly celebrate Alex’s 7th birthday with lots of hearts and strawberry ice cream, his favorite treat. Tests show that his new bone marrow has begun to grow healthy cells. We watch and we wait.
At the middle of March we are released from Shands to return home to North Carolina for follow-up treatment at Duke. Alex has packed some “going home” clothes to wear after the transplant. I dress him in his Hawaiian shirt, matching shorts, and new sneakers that never touch the ground.
We return home and prepare the house for his care. His room must be stripped of everything that can harbor irritants and germs. We remove his carpeting, curtains, plants, and gerbils. He is on the hospital’s schedule of meds every four hours around the clock. We settle into our routine of homebound school, reading books, watching TV, and reporting to Duke on a weekly basis for post-transplant checkups. He is quiet and calm. He is home.
On a cool morning in April, I enter his room to start the day’s regime. He has one eye open, one eye closed. He is lying in excrement. I cannot process what I see. I call his doctor who tells me it sounds as if he has had a stroke, most likely brought on by a very low blood count. Get him to the ER, she tells me. Right away. I clean him up,change his pajamas, wrap him in his quilt, grab his pillow, bundle him into my arms and take him downstairs. I gently lay him behind the front seat in the hatchback of the car. We arrive at the emergency room and his doctor is paged. She runs down the hallway to meet us, stethoscope flying. Alex is admitted and taken to a private room. Tests show what his doctor suspects. Alex has had a stroke. She also discovers that an opportunistic infection has taken hold.
VI
Ironically, it is the cure that kills him. In spite of new cell growth from Matthew’s marrow, the transplant procedure leaves him immuno-suppressed and vulnerable to normally harmless things in the environment. He picks up a fungus in his lungs. He is defenseless against it. Aspergillus is a fungus that lives naturally in the soil, apparently stirred up by new construction at the hospital in Florida.
The stroke slurs his speech. The fungus spreads like dry wildfire, covering organs at an alarming rate. The last thing he sayswhen he is still able to speak is, “I love you, Mom.”
I think, “How can you love me? After all I expect you to go through, all I ask of you just to keep you one more day and one more day and one more day. How can you love me?” I appeal to God. “Look, Lord. What’s it to you? You don’t have to worry about him. I’ll take care of him. Let me keep him. Just let him live.” The psalm says the Lord is good; his mercy is everlasting. Is that a fact?
The fungus covers his brain, putting him into a coma-like state. He lives for several days, slowly shutting down, his breathing becoming shallower and shallower until it stops.
He dies on April 15th. Eliot is right. April is the cruellest month.
VII
His doctor approaches me about donating Alex’s body for instruction and research. I have reservations about her request. I tell the doctor that my brother-in-law is a physician and he has told horror stories of the indignities suffered by cadavers at the hands of medical students. She assures me that Alex will be treated with the utmost respect. I make her promise that she will be in attendance at the autopsy.
I am mailed the report which shows that the cancer has indeed returned after the bone marrow transplant. I call his doctor and thank her for everything she has done. She tells me that recurring Neuroblastoma is hideous and that his death from the fungal infection is merciful. So. The psalm is right after all. She then tells me something that confounds me in its seeming irrelevance. She says, “Did you know that the Neuroblastoma cancer cell looks like a rose under the microscope?” All I can visualize is a bouquet.
VIII
They start his memorial service without us. His father and his brother and I arrive as the minister is finishing his reading of the 100th Psalm. When we are not in place at the beginning of the service, everyone thinks we are overwrought and unable to attend.