Diagnosis

"We have the results of the scan back; I'm afraid it's bad news. Your child has a tumor." For every parent who has heard those words, it is a moment frozen in time. In one shattering instant, life forever changes. Families are forced into a strange new world that feels like an emotional roller coaster ride in the dark. Every member of the family will feel strong emotions. However, with time and the knowledge that many children survive cancer, hope will grow.

Signs and symptoms

Cancer begins with the transformation of a single cell. The malignant changes that occur in these renegade cells can cause several signs and symptoms, many of which mimic common childhood illnesses.

Parents are usually the first to notice that something is wrong with their child, and they seek medical attention. Occasionally, a diagnosis of cancer is based on chance findings during a routine examination by a pediatrician, eye doctor, or dentist. Rarely, it is discovered on an x-ray done for other reasons.

Following are some of the signs and symptoms that may indicate the presence of a solid tumor:

• Swelling or persistent pain in bones, joints, the back, or legs

• A lump, especially in the abdomen, neck, chest, pelvis, armpits, or legs

• A whitish color behind the pupil

• Continued, unexplained weight loss

• Frequent infections

• Nausea that persists

• Fatigue

• Paleness

• Eye or vision changes that occur suddenly and persist

• Recurrent or persistent fevers

Most parents react to their concerns by taking their child to a doctor. Usually, the doctor performs a physical exam and may order blood work or x-rays.

Ten days after a well-baby check, I was changing 3-month-old Estele's diaper and noticed that the right side of her belly felt hard. I felt around and found a lump. It was a Sunday, so I called the nurse line at the 0pediatrician's office and was told it was probably constipation. Estele had gone several times that day, and I just knew it wasn't that. My husband and I took her to the emergency room where an ultrasound was done. They didn't tell us what was wrong but said we had to go to the children's hospital right away and not to stop anywhere.

Sometimes the diagnosis is not as easy and fast as Estele's:

When Hailee was a baby, we noticed that sometimes her eye appeared white and sometimes it looked reddish. We were worried, but the pediatrician said that she was healthy. He eventually gave us a referral to see an ophthalmologist when we insisted. Since he didn't feel it was an emergency, we had to wait 3 months to see the eye specialist, who diagnosed her unilateral retinoblastoma. By that time, Hailee's retina was detached, and her eye had to be enucleated. I remember feeling completely shocked when the specialist said that she had a disease that would kill her if left untreated.

Where should your child receive treatment?

After a tentative diagnosis of cancer, most physicians refer the family to the closest major children's hospital for further tests and treatment. It is very important that the child with cancer be treated at a facility that uses a team approach, including pediatric oncologists, oncology nurses, specialized surgeons and pathologists, pediatric nurse practitioners, pediatric radiologists, psychologists, child life specialists, rehabilitation specialists, education specialists, and social workers. State-of-the-art treatment is provided at these institutions, offering your child the best chance for remission (disappearance of the disease in response to treatment) and ultimately, cure.

The day that I took Cassandra (age 5) to the pediatrician, I had assumed she would be sent home on antibiotics for some type of infection. She had been complaining of pain in her left knee and had developed a large lump on her left buttock. Instead, we left with instructions for her to eat nothing, since she was going to be sedated the following morning for some scans at the children's hospital. From that point on, things happened very fast. I remember only bits and pieces of those first few days at the hospital. I was told that Cassandra had rhabdomyosarcoma, that the following day they would do a biopsy and implant a central catheter, and that chemotherapy would be started as soon as possible.

Physical responses

Many parents become physically ill in the weeks following their child's diagnosis. This is not surprising, given that most parents stop eating or grab only fast food, have trouble sleeping, and are exposed to all sorts of illnesses while staying in the hospital. Every waking moment is filled with excruciating emotional stress, which makes the physical stress much more potent and weakens the body's immune response.

The second week in the hospital I developed a ferocious sore throat, runny nose, and bad cough. Her counts were on the way down, and they ordered me out of the hospital until I was well. It was agony.

* * *

That first week, every time my son threw up, so did I. I also had almost uncontrollable diarrhea. Every new stressful event in the hospital just dissolved my gut; I could feel it happening. Thank God this faded away after a few weeks.

To help prevent illness, try to eat nutritious meals, get a break from your child's bedside to take a walk outdoors, and find time to sleep. Care needs to be taken not to overuse drugs or alcohol in an attempt to control anxiety or cope with grief. Although physical illnesses usually end or improve after a period of adjustment, emotional stress often continues throughout treatment.

Emotional responses

The shock of diagnosis results in an overwhelming number of intense emotions. Cultural background, individual coping styles, basic temperament, and family dynamics all affect an individual's emotional response to stress. There are no set stages of response, and parents frequently find themselves vacillating from one emotional extreme to another. Many of these emotions reappear at different times during the child's treatment. All of the emotions described below are normal responses to a diagnosis of cancer in a child.

The emotional responses of children and...