A precious gift from my dying son

The young boy's valor in his life-death struggle continues to influence his father.

By Daniel D. Buff, MD
Internist-Geriatrician/Far Rockaway, NY

"Good night, my son. Rest well, as you will need your strength in the days ahead."

I am standing there, bathed in the harsh light of the pediatric ICU, studying his features as the respirator gently breathes air into his body. I touch his hand, stroke his face, and whisper his favorite good-night song in his ear. The song, an ancient Jewish tune that asks a protective angel to watch over the children while they sleep, has been part of good-night prayers for centuries.

After a short while watching him sleep, my wife Nechama and I drive through the hills of Judea in Israel to our home and other children. We are silent, but I know what my wife is thinking. Our 7-year-old son, our sweet, gentle bright Moshe (Hebrew for Moses), may die. How did this happen? Why did it happen? And what do we do now?

Moshe was always the quiet one, the second of three consecutive boys and one of six children altogether. Because he always listened and was less demanding than his rambunctious siblings, he tended to be overshadowed. Yet he rarely complained. He seemed satisfied with whatever attention we gave him. Moshe was always the first one to fall asleep, eyes closed and arms clutching his security blanket even before I finished his good-night song.

That's why we were so surprised, some 18 months earlier, when Moshe started to complain about pain in his neck, and act out. The pain came and went for no apparent reason. At first, we thought he had muscle spasms and gave him painkillers and massage. When the pain persisted, we brought him for blood tests and an X-ray. Everything seemed normal, and his doctor was at a loss to explain the problem. On some days, the pain was bad enough to keep Moshe home from school.

Since Moshe was a sensitive child—and since we had just told the children my wife was expecting our fifth child—we found it reasonable when a psychologist who assessed Moshe suggested the pain might be a plea for attention. Since none of the doctors had found a physical cause, we decided to try the counseling and behavioral modification program he recommended.

In retrospect, however, there were clues that something was really wrong with Moshe's neck. For one thing, the pain woke him from sleep. When a pediatrician friend heard this, he recommended a neurological evaluation. Psychological pain doesn't often wake children, he said. But the orthopedist he'd been to before had found nothing wrong with Moshe's neck. Since the pain seemed to respond to the behavioral therapy, we didn't pursue the neurological exam.

How difficult it is for me to think about all the times I scolded Moshe for his behavior, and made him do things that may have increased his discomfort. I don't think I will ever forgive myself for this. Moshe kept telling us that he was not making this up, and that he needed more tests so we could find the problem. We did bring him in for another examination and more blood tests. But the results proved inconclusive again.

It wasn't until one summer Sunday, when Moshe woke up with right arm weakness, that I realized something had to be done immediately. His arm was flaccid, and his left hand showed a slight tremor. That day I took him to the local university hospital, where a CT scan revealed a mass, possibly an abscess extending from his retropharynx to his spine. The spinal cord was compressed, as was his trachea. Moshe needed emergency treatment, perhaps neurosurgery.

The chiefs of neurosurgery, radiology, and ENT conferred at 2 am and decided to attempt a needle biopsy. I am still amazed at how brave my young son was as the ENT stuck a 10-inch needle repeatedly into his pharynx. This was done under local anesthesia, as the doctors felt that sedation could jeopardize Moshe's already tenuous airway. Since no signs of infection were found on the biopsy, the doctors decided to put Moshe on a respirator and perform an open biopsy. I walked with his stretcher into the OR, kissed him good-night, and left as they started the anesthesia.

Two hours later, at about 6 am, Moshe was brought to the pediatric ICU, attached to a bundle of wires and tubes. It brought terrible fears to my mind, as I remembered treating so many adult patients in such surroundings. Some of them never woke up.

At 7 am, a team of doctors entered the room. I noticed a new face among them, and was introduced to the attending pediatric oncologist. That's how I learned the result of the biopsy. The oncologist told me that Moshe was suffering from a soft tissue tumor called a rhabdomyosarcoma. The tears welled in my eyes as the words sank in. My son had cancer.

I cried through the questions I posed to the doctors. What is the cure rate? What treatment will he receive? Will he regain function of his arm? Will he need extensive neck surgery? I can't believe how logical and doctor-like my thought processes were.

After we finished our conversation, I realized I had to tell my wife, but was afraid the news might cause harm to her and the new baby inside. It was Aug. 5, which happened to be her due date. (She would deliver a healthy boy a few weeks later.)

Once we returned to our home on the West Bank (we've since moved back to New York), we called family in America and arranged for local friends to watch our children. Prayer sessions were started in Israel, the US, England, and Russia.

It wasn't until we drove back to the hospital the next morning that my wife and I were able to talk about how guilty we felt about not believing Moshe when he insisted his pain was real. We also felt terrible about not being more attentive to him.

But we were united in our confidence that Moshe would be okay with God's help and the effort of his doctors, and that we could make it up to him. The oncologist had told us that this kind of tumor was common in children, and usually responds well to chemotherapy and radiation therapy. He had reassured us that even in the advanced stage of Moshe's cancer, there was a 60 percent chance for a complete cure.

Despite the incessant vomiting and weakness Moshe felt after treatments, the episodes of sepsis that nearly took his life four times, and the endless tests, he remained optimistic and courageous. By year's end, his grueling treatment regimen had done what it was supposed to do: Moshe was in remission. We were elated, and celebrated by taking a trip back to the States so we could share our good fortune with family and friends. I was certain our prayers had been answered.

But the reprieve lasted only three months. The day we got the news that the cancer had spread to Moshe's lung and spine, we all cried. I remember how Moshe stared at me in disbelief when we told him. As a physician, I knew that his prospects for cure were now remote.

But how we hoped. When Moshe didn't respond to a new round of chemotherapy, we were sure the next one would do the trick. When we heard about an experimental therapy that had shown promising results in children with brain cancer, we went forward—despite the fact that insurance didn't cover the expensive therapy and we were nearly bankrupt. Friends and family put out an appeal over the Internet, and the outpouring of support from around the world—from people who had never met Moshe—heartened us.

That September, Moshe was hospitalized for the last time. His left lung had collapsed. The pulmonologist who had done the bronchoscopy showed me a video he had made during the procedure. Seeing the black, menacing globular tumor sitting in Moshe's left main bronchus, it seemed obvious to me why all the treatments hadn't worked. The tumor looked evil. It sent chills down my spine.

My son was alert until about three hours before his death. On Oct. 8, 1999, Moshe said he was tired and wanted to rest. He had never spoken to me about dying, and I prayed for a miracle, even then. He died after sundown on a Friday, the start of the Jewish Sabbath. My son had always enjoyed—more so than my other children—praying with me in the synagogue. I thought it no coincidence that he chose the Sabbath to make his passage.

I sit here with tears in my eyes, reliving the events of the past few years, and I know that Moshe's short life wasn't wasted. I have learned from my son to cherish every day and to face whatever life brings with courage and faith. I needed every ounce of both when I first returned to work. As an internist/geriatrician, I care for many patients with terminal cancer. The first few weeks after Moshe's death, I kept flashing back to incidents that had occurred during my son's treatments. As time passes, that happens less and less. But I still think I made the right choice in continuing to care for these patients. I have come to know, in the deepest way, how important it is for physicians to continue to provide comfort during the last days of the patient's life. That is Moshe's gift to them, and to me.

How to make it through the nightmare

Internist/geriatrician Daniel D. Buff, author of the accompanying article detailing his son Moshe's battle with cancer, has learned hard lessons about how to cope when a child is struck by a serious illness. Here's his advice to others who may face a similar situation:

"I strongly recommend counseling with a psychologist who has experience helping families with seriously ill children. This had a very positive effect on my wife, my children, and me. Although most oncology wards have staff psychologists, their involvement is usually superficial, and their focus is on the sick child. You need someone who can work with the whole family.

"Counseling can help overcome the relationship strains—between husband and wife, and between parents and the healthy children—that are inevitable when the family focuses most of its energy and efforts on the sick child. Otherwise, lingering issues between the spouses can fester, amplified by feelings of guilt and inadequacy. The healthy children may feel starved for attention. The stresses are so intense, many marriages don't survive a child's illness, and many surviving siblings are scarred for life.

"You and your spouse should set aside private time, even if just a few minutes a day, to talk about your feelings and fears. When the child is out of the hospital, aim for more quiet time with each other. You will also have to make a conscious effort to give your other children attention and assure each of them that he or she is just as important to you as the sick child.

"Look for ways to lift some of the immediate financial pressure as the bills mount and you're faced with the terrible choice of working more or spending that precious time with your sick child. For instance, some mortgage companies will temporarily suspend payments for families experiencing a medical emergency. The same is true for many credit card companies. Call your bank and other creditors to explain the situation and ask for help. In retrospect, I wish that I had spent more time with my son and less time trying to make enough to meet my financial obligations.

"Don't hesitate to participate in your child's care. Just be careful to avoid conflicts with the child's physicians. Recognize that you can't be objective. Like me, you may also have to fight a tendency to micromanage.

"That said, although the staff that cared for Moshe was quite skilled and motivated, I still knew my son and his condition better than they did. More than once, my intimate knowledge of the relevant details—such as his allergies—helped prevent serious complications. One time, for example, Moshe was due to receive a blood transfusion. The resident wasn't aware that my son had developed antibodies to transfused blood. If I hadn't been there, Moshe could have had a serious transfusion reaction.

"I also recommend using your status as a physician to fight for the insurance benefits you're entitled to. I successfully argued with my insurance company to pay for chemotherapy that was considered experimental. I was able to speak directly to the oncologist who consulted for the insurance carrier and counter the arguments made against reimbursement."

 

Daniel Buff. A precious gift from my dying son. Medical Economics 2000;24:71.