Making Informed Decisions
When Your Child is Diagnosed
With a Brain Tumor

ere are some approaches that we wished somebody had suggested to us when our son, Alexander was diagnosed with medulloblastoma:

Surgery: Get the Best Pediatric Neurosurgeon

After your child is diagnosed with a brain tumor, there's usually a mad rush to get your son or daughter admitted to the hospital immediately. Ask your doctor if you can have a day or two. Unless your child requires an emergent procedure (emergency surgery that very day), this should not be a problem. Use those couple of days to find the best pediatric neurosurgeon around.

The problem is that your doctor (your pediatrician or neurologist - whoever has taken over the case now that your child is diagnosed), will schedule your child's surgery in the hospital where he has admitting rights (e.g. where he works and sees patients), NOT where the best pediatric neurosurgeon may practice. This is because your goals are different. His goal is to keep your child as a patient (assuming you have insurance). Your goal is have the best pediatric neurosurgeon do the operation. So it's up to you to find the best pediatric neurosurgeon regardless of where that surgeon practices. Nobody will do this for you.

Our Example:
Alexander's neurologist scheduled Alexander to have a surgery at UCLA Medical Center. However, the pediatric neurosurgeon was on vacation so another surgeon, one who operates primarily on adults, was scheduled to do the operation instead. According to the surgical report, the operation did not go as well as possible. In addition, Alexander came out of the surgery with a number of deficits. Later we found out that arguably, the most experienced pediatric neurosurgeon on the entire West Coast, Dr. Gordon McComb, practiced less than 20 miles away at another hospital (Children's Hospital Los Angeles). Dr. McComb did Alexander's second surgery (a beautiful job). In retrospect, we would have liked Dr. McComb and his team to do the initial surgery. However, because Alexander's neurologist had admitting rights to UCLA and not Children's Hospital Los Angeles, the surgery was done at UCLA.

Save the Tumor Tissue

As macabre as it may sound, saving pieces of the tumor tissue can actually help you save your child's life and may also make a significant contribution to helping other children. The tumor tissue can tell researchers what is genetically taking place in the cancer cell, what agents may kill the cell, and what viruses may or may not be present. Such tests are NOT considered the standard of care. In other words, you will have to ask your surgeon and he may or may not be willing to save the tissue for you. In addition, if your neurosurgeon is willing to work with you, you may have to find researchers on your own who are willing to do the tests. If possible, it's best to cryogenically preserve the cells.

Our Example:
We tested the tissue for a number of genetic markers. Although still debated among scientists, one of the most important was the gene p53. It was over-expressed in our son's tumor. This is indicative of poor prognosis and resistance to orthodox therapy in many other cancers.

Never Leave Your Child Alone

We suggest that you never leave your child alone in the hospital. You are your child's best advocate and no one will take better care of your child than you. You may want to consider always having a friend or relative at the bedside when you need a break.

Our Example:
After the first operation was completed at UCLA, Alexander was returned sleeping to the pediatric intensive care unit (PICU). We were exhausted and made the mistake of going to a local hotel to get a few hours of sleep. We were gone about seven hours. When we returned, we found his bed sheets discolored. We turned him gently to find out what was wrong and discovered that the skin on his back had dissolved and was sticking to the sheets. We turned on the lights and saw huge blood-red blisters bubbling up amongst the burned skin that covered 1/3rd of his back and all the skin under one arm. We called for his nurse and she was surprised. Another more experienced nurse arrived and said it was probably a chemical used during surgery and that she "sees this all the time." They had neglected to wash off these chemicals after the surgery and Alexander's nurse had never done a back to front, head to toe assessment as required. Our son, had been lying in the equivalent of battery acid while the skin melted from his body and stuck to his sheets. This took place while Alexander was under the care of UCLA medical center and happened during the night.

Beware of Medical Students

This applies primarily if your child is being treated at a teaching hospital, one that is affiliated with a major university or medical school. Medical students have to learn on live human subjects and they are trained to use patients to facilitate their educational experience. They may come and visit your child in small groups and it may appear as if they are providing some kind of care. But their use of your child may have absolutely nothing to do with delivering care. If they are visiting tour child you may want to ask them what care they are delivering. If they are using your child for educational purposes you have a choice. If you want them to use your child as classroom illustration then that's fine. However, if you don't want them to use your child, be prepared to put your foot down.

Our Example:
After Alexander's operation at UCLA there was a steady stream of medical students who would line up at Alexander's bedside. Our two-year old son had six tubes leaving and entering his body at different places including his brain. He was in tremendous pain and attempting to sleep and regain his strength despite the noise, conversations, shouting, laughter, and ringing of machines that went on 24 hours a day inside UCLA's PICU. Yet, one by one medical students would take turns, bend over our sleeping son, grasp his eyelids, pull them up, and shine their penlights into his eyes. Five, six, seven or more students would each have their turn with our son. Sometimes this would take place several times a day. Alexander would wake-up confused, upset, scared and we would spend time to comfort and calm him. Finally in our utter stupidity we asked one of the students how this continuous shining of lights into our son's eyes was supposed to help him.

"Help him?" the student said confused.

"That's why you're doing it, right?" we asked.

"No, I've never seen a medulloblastoma," he said. "We don't get a lot of them. It's pretty neat, " he said.

After we realized what was going on we told the director of the PICU that this would stop. We explained that we didn't want medical students using our son as a guinea pig. He was not happy with our decision but he followed our wishes.

Cancer Therapy: Be Careful of the Quacks

Some oncologists may mislead parents about the effectiveness of chemotherapy in malignant pediatric brain tumors by not sharing the history of the use of the drugs. If that is the situation, here are some ways of getting to the truth so that you have the opportunity to make intelligent medical decisions for your child based on accurate information.

Tape Record

You may want to consider openly tape recording conversations with oncologists. Tape recorders help to keep their comments candid. You can say that you want to share their input with your uncle, cousin, brother whose a doctor, pharmacist, whatever and that's why you want to tape the conversation. They may think that there's the possibility that some day an attorney could be listening to the tape. As a result you tend to get both sides (the good and bad) of the therapy they are offering. If they resist your request to record then you might wonder why.

Our Example:
The oncologists had Children's Hospital Los Angeles (CHLA) wanted to enlist Alexander in a highly experimental and often lethal therapy called Autologous Bone Marrow Transplant (ABMT) in which the child is given such a high dose of chemotherapy that he may quickly die of the drugs. (In fact, studies show that about 10% die after the drugs are administered.) During one of these meetings I produced a tape recorder and asked if I could record the conversation for the benefit of my wife who could not make the meeting because she was at home taking care of Alexander. The oncologists agreed and suddenly their descriptions of ABMT changed. Whereas before, the therapy was described in enthusiastic terms, now they were very cautious and explained the risks and possibility of death. It was an incredible change of content and tone.

Research

Oncologists may tell you that the chemo or radiation that they want to use on your child is superior to the old stuff and that now they have better drugs or techniques or whatever. They may use a lot of "whiz bang" terminology that is designed to impress you and speak of "state-of-the-art" this or that. While they may be motivated as caring professionals beware because there could be other agendas at work, such as:

1. Reason for Being —Without children, the pediatric oncologist would not have a practice. Giving chemo to children is what they do for a living.
2. Career Advancement —Each child they place on an experimental protocol may get them closer to writing and publishing another paper. And writing medical papers is critical for career advancement.
3. Money —Children with brain cancers represent substantial income to the oncologists and the hospital. By administering these drugs, oncologists and their hospitals bill insurance companies extraordinary sums of money (i.e. over $4,000 for a single day of treatment). In addition, there are suggestive financial links between drug companies, cancer hospitals and oncologists (e.g. it has been reported that drug companies pay oncologists a premium for every patient an oncologist can enlist onto an experimental protocol that utilizes the drug company's chemo.)

For these reasons and others, the objectivity of oncologists in respect to chemotherapy may be questionable. What this means is that to find the truth about the therapy they are offering you it is best to do your own homework.

With the internet, it's not difficult. Anyone with a computer has a medical library at their fingertips. Use Medline to read abstracts (summaries) of articles written about the chemotherapy drugs or radiation they want to administer your child. Most of the full-length articles are usually available in the hospital's medical library. These articles are written by pediatric oncologists for pediatric oncologists. It's as close to the truth as one can get and it's the kind of information they seldom give parents. The address for Medline is http://www.ncbi.nlm.nih.gov/PubMed/.

Our Example:
The oncologist at CHLA told us that the chemotherapy he was going to administer to Alexander was the best of the best. He called it the "state-of-the-art." Later, after Alexander passed away while on chemotherapy, we researched these drugs. The medical literature pointed out that these drugs had been used in pediatric brain cancer for over twenty years, that they were ineffective and highly toxic. In fact, there were articles written about the exact same drugs in the exact same combination that they gave Alexander. These drugs had been given to children the same age and with the exact same brain tumor as our son. According to the medical articles the chemo worked so poorly that in one study they had to terminate the therapy because the tumors were returning rapidly and the children were dying. That was in 1994. Unbeknown to us, four years later they would give the exact same drugs to Alexander and tell us that they were "state-of-the-art." Alexander's cancer returned within 5 months just like the children in 1994. (See our article "Chemotherapy in Pediatric Brain Tumors"). We did a great deal of research but we did it when it was too late to benefit our son.

Show Me the Children
Some oncologists are quick to throw around statistics. This percentage cured. That percentage alive. But anyone who has ever worked with statistics knows that numbers can be easily manipulated. But live, healthy children are a different story. So you may want to ask your oncologist to give you the names of several children who had the same cancer as your child, received the treatment he's recommending, and are alive five or more years later. Speak to the parents of these children. Visit with the children if you can to see how they're doing.

Our Example:
When we asked for names of children we got two. One was out of treatment less than 24 months and the other one was dead.

If You Say "No" to the Oncologists

What if after all this you decide that you don't want to have your child treated with chemotherapy and/or radiation? What do you do if you decide you want to use another therapy? You should be aware that if you say 'no' to an oncologist they may try to use the legal system to take your child from you.

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© Raphaele and Michael Horwin, 1999 - 2002