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:
1. Get the Best
2. Save the Tumor Tissue
3. Never Leave Your Child Alone
4. Beware of Medical Students
5. Do Your Homework Regarding Chemotherapy
a) tape record
c) show me the children
Surgery: Get the Best Pediatric
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.
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.
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.
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.
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
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.
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.
the student said confused.
why you're doing it, right?" we asked.
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
is someone who "fraudulently misrepresents his ability and experience
in the diagnosis and treatment of disease or the effects to be achieved
by the treatment offered."
(From the 25th edition of Dorland's Illustrated Medical Dictionary).
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.
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.
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.
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/.
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.
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.
Raphaele and Michael Horwin, 1999 - 2002