Childhood Brain Tumors

Brain tumors are growths inside your skull. They are among the most common types of childhood cancers. Some are benign tumors, which aren’t cancer. They can still be serious. Malignant tumors are cancerous.

Symptoms of a brain tumor might include:

·       Headache

·       Vomiting and nausea

·       Personality changes

·       Depression

·       Trouble controlling muscles

·       Seizures

·       Vision or speech problems

Treatment for children is sometimes different than for an adult. Long-term side effects are an important issue. The options also depend on the type of tumor and where it is. Removal of the tumor is often possible. If not, radiation, chemotherapy or both may be used.

HOW ARE BRAIN AND SPINAL CORD TUMORS IN CHILDREN DIAGNOSED?

If your child’s symptoms suggest that a brain or spinal cord tumor may be present, several types of exams and tests will be done.

Brain or spinal cord tumors are initially suspected because of the symptoms they cause. Symptoms usually occur gradually and become worse over time. However, some symptoms happen suddenly. In many children, epileptic seizures are the first symptom of a brain tumor. But it is important to remember that most epileptic seizures in children are not cause by brain tumors. Still, your pediatrician may want to consult a neurologist to make sure a brain tumor didn’t cause the seizure.

Headache is a major symptom of brain tumors. In very young children who can’t complain of headache, a parent may notice an increase in head size. This happens because the several bones that make up the skull haven’t grown together. The increased pressure from the tumor can force them apart.

There are other symptoms. Brain and spinal cord tumors often interfere with the specific functions of the region they develop in. For example, spinal cord tumors often cause numbness and/or weakness of both legs. Tumors in parts of the brain that control movement or sensation may cause weakness or numbness of part of the body. Tumors in an area of the brain called the basal ganglia typically cause abnormal movements and an abnormal positioning of the body. Tumors within any part of the brain may cause pressure to rise within the skull (intracranial pressure). Increased pressure within the skull may cause headache, nausea, vomiting, or blurred vision. Another symptom might be drowsiness. In children, the increased pressure causes crossed eyes and double vision. In others, it may cause trouble seeing. A doctor can often identify the presence of increased intracranial pressure by looking in the child’s eyes for swelling of the optic nerve (papilledema). This increased pressure is due to the growing tumor and slowing or blockage of cerebrospinal fluid circulation.

In the school-aged child, poor school performance, fatigue, personality changes, and complaints of vague, intermittent headaches are common. In the first few years of life, irritability, loss of appetite, developmental delay, and a drop in intellectual and motor abilities are frequent signs of increased pressure in the brain. In the very young infant, increasing head size with or without bulging soft spots of the skull (fontanelles), persistent vomiting, and failure to thrive are often typical symptoms.

*American Cancer Society

WHAT IS AN ANAPLASTIC ASTROCYTOMA?

An anaplastic astrocytoma is a high-grade, or malignant, glioma, a tumor of the glial (supportive) tissue of the brain. Anaplastic astrocytoma and glioblastoma multiforme, account for approximately 10 percent of pediatric central nervous system tumors.

These tumors arise primarily in the cerebral hemispheres (65 percent). Approximately 20 percent can occur in the area of the thalamus and hypothalamus or the diencephalons (responsible for identification of sensation, such as temperature, pain and touch, regulation of appetite/weight and body temperature, as well as connecting the brainstem to the cortex). Another 15 percent can occur in the region of the cerebellum and brain stem known as the posterior fossa. The medium age at diagnosis is 9 to 10 years old and these tumors occur with equal frequency in boys and girls.

WHAT CAUSES AN ANAPLASTIC ASTROCYTOMA?

Most high-grade gliomas occur sporadically or without identifiable cause. They do however, occur with increased frequency in families with neurofibromatosis type I, Li-Fraumeni syndrome, hereditary nonpolyposis colon cancer and tuberous sclerosis. They have also been associated with exposure to vinyl chloride and to high doses of radiation therapy to the brain.

WHAT ARE THE SYMPTOMS OF AN ANAPLASTIC ASTROCYTOMA?

Anaplastic astrcytomas of the cerebral hemispheres and the diencephalons, called supratentorial anaplastic astrocytomas, produce a variety of symptoms as a result of increased pressure within the head, as well as more localizing symptoms as a function of their specific location, rate of growth and associated inflammation.

WHAT IS THE EXPECTED OUTCOME AFTER TREATMENT FOR ANAPLASTIC ASTROCYTOMA?

The best reported survival rates for radically removed tumors treated with adjuvant radiation therapy approaches 40 percent at five years. This is a minority of patients, however, and in most cases; the tumor cannot be completely removed. The five-year survival rates for children whose tumors are incompletely removed remains less than 20 percent. More complete removal of hemispheric tumors may be associated with greater survival.

*Children’s Hospital of Boston

Diagnosing Stanley

Stan was 12 years old when he was diagnosed on March 21st, 2000. This diagnosis seemed to have come out of the blue. Although my husband and I had noticed a few behavioral changes in Stan at the start of his 7th grade year in September 2000, we attributed those changes to adolescence. His school performance also began to decline, which was quite unusual for at that time; he was in the gifted program at school and had always excelled academically.

Later that Fall, we began receiving notices from Stan’s teachers stating that he had been yelling out in class, asking inappropriate questions that had nothing to do with the subject being discussed. Suddenly, his grades began to suffer and he repeatedly failed exams. My husband and I worked with him in doing his homework and made flash cards, quizzing him the night before tests to ensure he knew the material, all to no avail. This was puzzling to us. The night before each exam, he recited each answer correctly, only to end up failing the exam the next day. His handwriting also seemed to regress, in that what was once clear and neat, suddenly became sloppy and hard to decipher.

I was in constant touch with his teachers and counselors to attempt to determine what the problem could be. They believed as well that it could be simply adolescence and the need for attention. The counselor stated that many boys this age were greatly affected by peer pressure, often acting out in class. The counselor then suggested that we may need to get him evaluated for ADD and if that proved to be the case, perhaps Ritalin would help. I was appalled at this suggestion and stated that Stan had never exhibited these behaviors previously, and I seriously doubted that a young man of 12 could suddenly develop ADD. I stated emphatically that my husband and I would never consent to Ritalin, but would take him to our family doctor to discuss. Upon taking Stan to the doctor, he gave Stan a brief examination and found nothing medically wrong at that time.

Stan’s schoolwork continued to suffer even with constant support. On one occasion, I decided to go to school with him and trail along with him to all of his classes. I wanted to see for myself how he behaved in class. He was quite upset about this, as any 12 year old would be, but he took it in stride when he saw that I wasn’t about to change my mind. As would be expected, he didn’t misbehave that day. However, I noticed that he seemed quite indifferent, not focused, and appeared to be tired, actually laying his head on the desk on several occasions. I told him that wasn’t appropriate and he would be going to bed even earlier from now on because he obviously wasn’t getting enough sleep. Due to his school performance not improving, and his lackadaisical attitude, my husband and I placed him on punishment, not allowing him to get together with his friends until his grades improved.

However, we did allow Stan to continue playing basketball for a community league because we thought it unfair to his teammates to pull him off the team. When observing him practice, I noticed more aggressive behavior than usual, as well as displaying poor sportsmanship and not being a team player. I addressed my concerns with my husband, and we threatened to pull him off the team if his attitude didn’t change. His after school punishment continued however. We ensured him that we would not reward him in any way for poor behavior and declining grades.

We also suddenly noticed that Stan appeared to be smirking all of the time. His smile seemed to be crooked, and upon asking why he was smiling that way, he replied, “I can’t help it”. We believed it was due to him newly wearing braces and the fact that he wasn’t used to them yet. His handwriting also became nearly illegible at this time. I noticed he was holding his pencil in an awkward manner, and attempted to show him the correct way to hold the pencil. I also began receiving calls from the school nurse on 3 different occasions stating that Stan had thrown up in school. Usually this occurred in the early morning hours upon his arrival. The nurse said he had told her that he wasn’t sick, and she stated that he also didn’t have a fever. I told her that I suspected he had eaten too fast and probably hadn’t properly digested his food. We both felt there was no reason for me to come get him. I also stated I preferred him to stay so that he wouldn’t miss classes. I believed that his grades had suffered enough, and unless he was actually sick, he needed to be in school.

When things didn’t appear to be getting better in early March of 2000, I decided to again take Stan to our family doctor. I decided to take along examples of Stan’s handwriting to show the doctor. Papers from his sixth grade school year were neat and legible, but papers from this 7th grade school year looked as if a 1st grader had written them. The doctor again examined Stan, questioning him to determine what may be troubling him, and then suggested taking him to a child psychologist to determine any underlining stresses.

At that first appointment with the child psychologist on Wednesday, March 15th, the doctor explained that he would like to meet with me first to determine my concerns, and later meet with Stan alone. After filling him in, I again took Stan’s handwriting samples from 6th grade and his current 7th grade papers. He appeared puzzled after reviewing the papers, stating that he would then meet with Stan alone to discuss them. After Stan finished his session with the doctor, I asked him how things had gone. The doctor said that he would like to meet with Stan again the following week, on Thursday March 23rd. He told me that there was definitely something going on, but he would need more time to get to the bottom of what it might be. Upon leaving the doctor’s office, for the first time, a chill came over me and I suddenly developed a sense of fear. It was as if everything suddenly began to come together, my aha moment if you will. Suddenly, I began to suspect that perhaps Stan had been sexually abused. Maybe that was the reason for the change in behavior, poor school performance, and indifference. I shuddered at the thought, and couldn’t wait to return home to discuss my concerns with my husband. Little did I know that in less than 1 week, my fears would prove ungrounded, and the real answer would prove far more ominous.

My husband thought I was being paranoid. However, the thought wouldn’t leave my mind, and I couldn’t bear the thought of my child having possibly gone through anything so sordid. That Friday, March 17th, Stan returned from school stating that his right arm hurt. After going to the bathroom, he came out and asked my nephew to zip his pants for him. I asked why couldn’t he zip his own pants, and he said that it was hard for him to use his arm. My first thought was that he might have a sports injury from playing basketball. He had played that prior weekend, and I asked him if anyone had pulled his arm in anyway. He told me that he couldn’t remember, and that it didn’t hurt, he just couldn’t use it. I immediately called our family doctor to see if I could bring Stan right in. I was told that the earliest available appointment would be on Monday afternoon, March 20th.

That Monday, after the doctor examined Stan, he told me that he’d like Stan to get a Cat Scan the next day. He then stated that he had already made the appointment for me, which I found unusual, but didn’t give it too much thought. I never once considered anything else being wrong other than a pulled or sprained muscle. Also, the doctor’s demeanor was typical. We’d known this doctor for sometime, and had established a wonderful rapport with him. Although there were two other doctors in the practice, we always preferred using this one because of his easygoing personality, ability to communicate with his patients, enabling them to dialogue with him at length about any medical concerns. Little did I know that the next day would prove to be the beginning of the end of life, as we had once known it.

That next day, Tuesday, March 21st, 2000 is a day that I will never forget. It is the day that my beloved son Stan was diagnosed with a massive brain tumor on the left frontal lobe. At the radiologist’s office, never once did I suspect anything to be wrong, for I believed the CAT scan had been ordered for Stan’s arm. While in the waiting area, I never grew suspicious when the radiologist kept Stan for such a long time in the test area. When Stan was finally finished, I still didn’t suspect anything ominous when the radiologist came out with Stan holding a large envelope in his hand stating, “Mrs. Edwards, I need you to take these films over to your doctor’s office, he’s expecting you”. The radiologist’s office was in a medical complex and our doctor’s office was only a brief walk away. Upon arriving, the nurse was in the reception area waiting for us. She told Stan to have a seat and asked me to come back with her to the doctor’s office. Still, no suspicions on my part. Upon entering the doctor’s office, he approached me with a look in his eyes that I’ll never forget, grabbed my hand and held it tightly while saying, “Mrs. Edwards, did the radiologist tell you why I asked you to bring over Stanley’s x-ray film”. Still oblivious, without fear, I replied that they had not. His eyes displayed great concern and compassion and while still holding my hand, he said, “Mrs. Edwards, Stanley has a massive brain tumor on the left frontal lobe and you need to immediately take him to the hospital”. My initial response was surprisingly calm, without fear, and I replied continually repeating, “Now I know, now I know, I finally know what is wrong with my baby, it now all makes sense”.

My response was uncharacteristic of what those who know me well would expect. I’d always been a type A personality, and would have previously become hysterical upon hearing such devastating news. However, as a Christian with a strong faith and belief in God, I believe that God was keeping me as still as possible for as long as possible. I believe He was preparing me for the long, arduous battle that was in my son’s future, our entire families future, the 22-month battle that would result in Stan’s death on January 9th, 2002.

Stan’s death resulted in my husband and I creating Stanley’s Dream Foundation to continue the legacy of our brave and courageous son. Money raised through our foundation is used to provide grants to hospitals for childhood brain cancer research as well as providing college scholarships each year. It is our hope that through research a cure may one day be discovered for brain cancer, or the ability to extend the quality of life for a child diagnosed. We also hope through the awarding of scholarships, students will be given the opportunity to achieve Stanley’s unfulfilled dream of obtaining a college education.

What I have just described is a condensed version of what transpired in the months leading up to Stan’s diagnosis. I am currently writing a book about this experience. The book is based upon what it has been like to lose a child to such a devastating disease as brain cancer, and how faith sustained our entire family and me. I’ll update the website on the books progress as it nears completion.

– Donna D. Edwards –

Stanley’s Symptoms

Below I have listed some of the symptoms that Stanley experienced prior to his diagnosis. However, many of these symptoms could be indicative of a host of other illnesses or diseases. It is always best to take your child to their doctor if they exhibit any physical or behavioral changes. Stan’s symptoms were quite subtle, and could be attributed to many other factors. Headaches or seizures often allow for an earlier diagnosis, however, Stan experienced neither of these.

·       PERSONALITY & BEHAVORIAL CHANGES

·       COGNITIVE PROBLEMS

·       GRADUAL LOSS OF MOVEMENT OR SENSATION IN ARM

·       WEAKNESS ON RIGHT SIDE (causing his mouth to twist)

·       VOMITING

There are many additional symptoms that I’ve listed below that many people experience prior to being diagnosed with a brain tumor. Stan developed many of these symptoms after diagnosis; however, he may have experienced some of these earlier but never revealed them to us. 

·       NEW ONSET OR CHANGE OF PATTERN IN HEADACHES

·       HEADACHES THAT BECOME MORE FREQUENT OR MORE SEVERE

·       VISION PROBLEMS, SUCH AS BLURRED VISION, DOUBLE VISION OR LOSS OF PERIPHERAL VISION

·       DIFFICULTY WITH BALANCE

·       SPEECH DIFFICULTIES

·       CONFUSION IN EVERYDAY MATTERS

·       SEIZURES, ESPECIALLY IN SOMEONE WHO DOESN’T HAVE A HISTORY OF SEIZURES – AS WITH EPILEPSY FOR EXAMPLE

·       HEARING PROBLEMS

·       HORMONAL (endocrine) DISORDERS