This is, by far, the most difficult page we have ever tried to write. We
could go on for pages, and could probably even write a book. Again, a couple of
pages here doesn't do it justice, but, we wanted to share some of our
experiences here.
Most parents think their kids are perfect and beautiful in every way. We knew
it!
Nishan was cute, smart and just starting to blossom as a little toddler. We
never had any reason to even think something may have been wrong. Hardly ever
sick, never with a fever, he had a great appetite, loved to play and loved
music. He was a guitarist and drummer. In early October 2003, he started
complaining of headaches by saying the words "boo-boo" and would cry
unstoppably for a period of 10 to 15 minutes, then want to go to sleep. As soon
as he would wake up, whether it was 20 minutes or an hour, he was back to his
usual self. At first, we thought that it might have been the flu.
A week passed, and THREE (3) visits later, we were still being told that
"He's Fine" and "Kids Get Headaches Too, It Is Completely
Normal". On the fourth (4th) persistent visit to the clinic by my wife
Leticia, a Doctor finally saw the amount of pain Nishan was experiencing when
these headaches hit. His first thought was viral meningitis, and he immediately
scheduled a CT Scan at Kaiser Hospital in Los Angeles. Without Leticia's
persistence and natural instinct as a mother who knows how long we may have had
to wait.
On Monday, October 13, 2003 we checked into Kaiser Sunset, over night, so
that Nishan could be monitored if the pain returned, followed by a CT Scan on
the morning of the 14th. We will never forget, each Nurse and Doctor that saw
him that night all said "What Is He Doing Here??" ..
That's what we thought too, what are we doing here? There is nothing wrong with
our child!
At approximately 8:00 am on the 14th, the three of us went to have Nishan's
CT Scan done. About an hour later, we were back in our room, and we started
packing, figuring that we would be sent home later that day. At around 11:00 AM,
Dr. Leslie Cahan entered our room and told Leticia and I to "have a
seat". The next ten minutes were a complete haze and before we knew it, we
were told that our son "has a mass" and that "we fear it may be
cancerous because it looks like cells have spread, but, we won't know for
certain until after surgery when a biopsy is performed". An
immediate whole body MRI was performed to see if and where cancerous cells or
signals were present anywhere else in his body. The initial diagnosis (which
turned out to be correct) was Midline Cerebellar Tumor with dissemination,
consistent with a PNET Tumor with mitoses. We were told that Surgery is a must,
and that there was a slot available in the operating room on Wednesday morning,
the 15th.
Phone calls were made, and, within a few minutes, our entire family and
friends were notified. As Father and Mother, Leticia and I made the decision to
allow the emergency surgery to proceed. We believed that we had to give our
son every chance possible.
We were warned about the possible risks and complications that may result
with Brain Surgery. Many children are never the same. Some stop speaking, others
stop walking, others just don't wake up from the anesthesia.
During surgery, Dr. Cahan noted that "Upon dividing the vermis of the
cerebellum, we encountered a tumor.. which was felt to be consistent with a PNET
tumor with mitoses. The tumor was extraordinarily vascular... Most of the tumor
was removed with a combination of suction, bipolar forceps and an ultrasonic
dissector". (By the way, you are entitled to a copy of your child's
complete medical records with Doctor's notes! Our advice - ask for a copy!)
5 days later, we were home. Nishan did great during surgery and recovery. He
was still walking, talking and even eating! The first thing he did when we came
home was go to his drum set.
We knew we were going to war with cancer. We didn't have a plan, yet. Within
a week we would meet with our Oncologist and try to make an informed
decision as to what type of treatment method we would follow.
Dr. Leslie D. Cahan, although not much on personality and not the greatest
communicator, is a great surgeon.. That is not only the opinion of the Poladian
family, but also that of every single Kaiser Sunset Doctor and Nurse we came
into contact with.
Nishan's official diagnosis was Medullablastoma/Primitive
Neuroectodermal Tumor (PNET) with dissemination, meaning that the disease had
spread. We met with our Kaiser Oncologist, Dr. Robert Cooper, who sat us down
and gave us a list of several treatment options we could choose from. When
dealing with Pediatric Cancer, your options are limited to Surgery, Radiation
Therapy and Chemotherapy. Our Doctors also told us that many parents choose not
to do anything! That was not going to happen.
In the United States, Radiation Therapy is not considered an
option for children under the age of 3, because of the horrendous side effects
that surface as the child develops. Severe Mental Retardation is the common
result. We were told that "most" children who undergo Radiation
therapy under the age of 3 are not able to live self sufficient lives.
That is not to say that once a child turns 3, these side effects won't surface.
There is no "magic line" that is crossed once a child turns that age.
In fact, we learned that most kids who receive Radiation therapy, even up to the
age of 10, end up with severe developmental issues later on in their
lives.
In our case, radiation was not an option (at least not yet). We
were told about several studies conducted by Cancer groups such as the POG
(Pediatric Oncology Group) and the NCI (National Cancer Institute). These
studies suggested that Chemotherapy would be an option for us. Our Kaiser
Oncologist, Dr. Robert Cooper, introduced us to a clinical trial that was
originally introduced in New York by Dr. Jonathan Finlay called the "Head
Start" program. This program had evolved into a newer "Head Start
Two" program and was producing rather remarkable results in children
(according to Dr. Finlay's published paperwork) with progressive pediatric brain
cancer. The program was experimental and highly controversial. As fate
would have it, Dr. Finlay had since moved to Los Angeles and taken over the Los
Angeles Children's Hospital Hematology/Oncology department.
The Head Start Two program called for (5) cycles of intensive
chemotherapy (a five drug combination), followed by high dose chemotherapy with
stem cell rescue. In a nutshell, for those of us who are not medical
professionals, this program calls for high doses of chemo to attack the cancer
in the body and hopefully, cross the blood/brain barrier to enable to drugs to
work. Each cycle last approximately 21 to 28 days. Our experience was a week in
the hospital which consisted of 4 to 5 days of continuous chemotherapy for
approximately 6 hours a day, followed by blood tests and waiting for the levels
of the drugs in the blood to get low enough so that we could go home. It would
take about three weeks for the body and blood counts to recover, and then we
would do it all over again on the next cycle.
If, after the (5) cycles, there are little or no signs of
cancerous cells, the patient then undergoes almost toxic/lethal levels of
high-dose chemotherapy. During this time, the patients immune system is
completely wiped out, and the patient has a very high risk of life threatening
infection. However, once the high-dose chemotherapy is completed, the
patient is then re-infused by his own stem cells (which were drawn and separated
prior to the high dose phase). The goal is for the patient to be cancer free,
however, if there are still minor signs of cancerous cells, low dose radiation
therapy would be used to threat those specific areas.
We decided that following the Head Start Two protocol would be
our best chance. Our Kaiser Oncologist, Dr. Cooper, arranged a meeting between
our family and Dr. Finlay over at CHLA so that we could have our questions
answered. After spending countless hours on the internet researching about Dr.
Finlay, we found out that he was considered one of the best in the
world.
Meeting with Dr. Finlay brought us hope. He was certainly a
breath of fresh air. The first words he uttered to us was .... "What Your
Son has is CURABLE". That was the type of news we needed to hear. We
needed someone to tell us that our son had a chance...
Kids undergoing chemo have the following universal traits -
Blood and Platelet transfusions, endless blood tests, weekly visits to the
clinic for monitoring, constant checking of temperature for fever, Central Line
placement, VP Shunt implants (in about half the kids), daily oral medications to
prevent infection, Zofran (to help reduce nausea), GCSF shots - Neupogen -(to
help stimulate white blood cells after being depleted by chemo), loss of hair,
loss of weight, loss of eyebrows, change in taste buds, etc..
It sounds horrible, and it was rough for us, but, any parent
would do it for their child.
First, the need for blood and platelet transfusions.
Chemotherapy ravages your immune system. It is not uncommon for these kids to
receive transfusions weekly.
Second, installation of a "Central Line" or Catheter
in the arm or chest. Everyone who undergoes chemo is constantly either getting
blood, or having blood taken out to monitor counts. We saw how uncomfortable it
was for Nishan to have an "IV" in his hand for a few minutes, there
was no way he was going to be able to last the few hours needed for a blood
transfusion. Surgery was necessary to install the line in his chest (here's a
general idea of what it looks like).
Third, surgery was required to implant a VP Shunt in Nishan's
head. This procedure is used to relieve intra cranial pressure caused by
hydrocephalus. In this procedure the "cerebrospinal fluid is shunted from
the ventricles of the brain into the peritoneal cavity via a surgically
implanted tube", in other words, sometimes a shunt is necessary to relieve
pressure on the brain from the excess fluid. Without treatment the brain will be
damaged as pressure inside the skull enlarges the ventricles, causing
compression and, ultimately, death of sensitive brain tissues.
This
is what a VP Shunt looks like on the inside.
After a few weeks, everything fell into place. We were always
packed just incase Nishan had a fever (by the way, in his five months of
treatment, he only had 1 incident of fever). Weekly and sometimes twice weekly
visits to the clinic for monitoring of blood counts , blood and platelet
transfusions, and weekly flushing of his central line were all common
occurrences. Hair loss was really just a superficial thing, we knew it would
grow back in no time and it did! It was hard seeing our child not want to eat
(he had a great appetite before he started treatment), but still, he did his
best to make Mommy and Daddy happy. The hardest thing was having to give him his
GCSF shots. GCSF stimulates the white blood cells and increases production. For
a period 7 to 10 days, once we got home from the hospital, after each round of
chemo, we would have to inject a needle into his thigh. He knew it was coming
and he hated it. We hated doing it to him.
When we originally found out about Nishan's diagnosis, we feared
the worst. However, after the initial shock wore off, between prayer, family,
friends, and positive emotions, we slowly started developing the inner strength
to deal with this monster. Once we started intensive chemotherapy, we never
thought we would lose our child to this disease.
Starting in November 2003, Nishan underwent the first of (5)
courses (or "rounds") of chemotherapy. By December, after the second
round, we ran another MRI to find out if the chemo was working or not. Finally -
we had some good news - the chemo was working! There were no signs of tumor
growth and the primary tumor had completely disappeared. There was a reduction
of enhancement in Leptomeningeal area (certain area of the brain). Doctor Finlay
was very pleased with the results and it really seemed like we were on our way
to beating cancer.
The 3rd, 4th and 5th courses were very smooth. Nishan was a
trooper. He hated the hospital, but, he dealt with it bravely. We would go in
for about 5 days, then go home for a few weeks and do it all over again. In the
mean time, we were at the clinic one to two times a week, so our Doctors and
Nurses could check his blood counts, transfuse blood and/or platelets.
After the 5th and final course of this first phase of
chemotherapy, we ran another MRI to check on Nishan's status. In early March we
found out that the disease had spread, even during treatment. We were devastated
- again.
How could this happen? Well, in order to beat cancer using
chemotherapy, you need to remove EVERY SINGLE cancerous cell, otherwise, it
multiplies so quickly that, in the end, your body is simply overcome by the
disease.
After another meeting with our Kaiser oncologist (Dr. Cooper),
we were presented with some more options:
1. Stop medical treatment all together
2. Place Nishan on "palliative" treatment - relieving
symptoms, rather than cure.
We chose to place him on palliative treatment and so we
continued as best as we could, and still believed that we were going to beat
this cancer. There was no other alternative. Unfortunately, we were wrong.
It is extremely difficult to write about our last few days with
Nishan, so we apologize for the quick summary. Truth be told, we never saw it
coming. We were still pursuing other "alternative" medicines and
therapies - anything that gave us a chance - anything that someone else had
success with. From Bio Energy Healing, Frequency Therapy (Rife Technology) to
faxing Nishan's medical records to the Burzynski Clinic in Texas (just a day
before he passed).
