this whole journey, my family and friends have been a huge help to me when I
needed it. My parents were with me for every MRI and every surgery. They were
able to take weeks and months off from work to be by my side; they never left
for even a day until I was able to go home. My dad spent many long nights
sleeping on the cold, hard linoleum floor beside my hospital bed when there was
nowhere else to sleep; I am truly blessed to have them as parents. But who I am
most grateful towards is God and the miracle He has given to me. Sometimes I
wonder what it would be like to be “normal,” but it quickly escapes my mind
because I know that He has chosen me to be this way.
1998, I have had two other surgeries to remove the tumor and in the summer of
2005, one surgery to fuse titanium rods to my spine for scoliosis. I have
bi-yearly MRIs to check the status of the tumor and since my last surgery for
it in 2002, the pesky thing hasn’t changed!
about a week, I was transported to Legacy Emanuel Children’s Hospital, about
three miles away for rehabilitation and physical therapy for five weeks. It was
intense and grueling with a strict schedule, but overall it is what I needed to
do in order to get out of there! At the time of discharge, I was not fully
walking on my own, but within a few weeks I was able to show off to my family
and friends the progress I had made in walking without help.
my parents and extended family anxiously waited, praying and keeping in touch
with those who couldn’t make it. Finally after nine long hours, the surgery was
complete and I was in recovery. The doctor greeted my worrying family and told
them that everything went well but he would not know the extent of the damage
until I was more awake. He ordered that I lay flat on my stomach for four days
which was hard to believe I could do because for almost two months I had been
unable; it was a wonderful feeling. I was no longer in pain, except for some
soreness and discomfort from just having major surgery. A biopsy was done later
on the tumor confirming if it was cancerous or not. I can still picture the
room I was in, my parents and paternal grandparents with me, waiting for them
to relay the good news in the midst of healing and recovery. That night was
pretty rough with nurses coming in every half hour or so to do vitals and such.
My parents later told me that with all of the hustle and bustle on the PICU floor,
it was next to impossible to sleep.
May 21st 1998, we arrived at 6 a.m. at the OHSU Children’s Hospital
surgery waiting room. Soon we were led into a very dated 1970’s yellow room
with rows after rows of beds. I was hooked up to all sorts of monitors and
machines, looking like something out of a Sci-Fi movie. I was given a root
beer-flavored syrup that made me relaxed and giggly. A few nurses wheeled me
into a giant cold room filled with shiny bright lights where they helped me
onto a very narrow, skinny table. The anesthesiologist introduced himself and
placed a yummy smelling mask over my mouth and nose. He told me to start
counting backward from ten. “10…9…8…7…..”
that morning, we met with my neurosurgeon, Dr. Joseph Piatt. He explained that
he looked over the MRI scans and confirmed that I had a large tumor that he
would operate on, but was not sure how much he would be able to take out
because it was very risky. He provided us a mental picture of what exactly this
tumor wrapped in the spinal cord looked like: “Imagine Jell-O, green and
yellow. The green is the good tissue and the yellow is the bad tissue (tumor).
When you mix the two together, it would be very difficult to take out all the
little pieces of yellow ‘Jell-O.'” He also warned that there was a possibility after
the surgery that I might have partial or full paralysis. I don’t remember
hearing this, and it was probably for my own good, because I’m sure it made my
parent’s hearts stop. He advised us to go home, pack a couple weeks’ worth of
stuff and come back in three days. The hospital was now our home.
arrived at the emergency room to see the neurosurgeon the next day, waiting for
close to five hours while he was performing another surgery. Still at 6 p.m.,
we hadn’t moved. A nurse escorted us to the ninth floor and I was admitted for
the night. It was a very small room with two beds and a little T.V. to share in
the corner. A young boy and his family occupied one bed and my parents were
staying with me, so they asked a nurse if there was another room we could stay in
for the night. She explained that a patient would be checking out in a few
hours with two beds, but if someone one was admitted, they would have to give
up the extra bed. After a long day, full of exhaustion and frustration, we
finally settled into a room with two beds….but not for long. Around 2 a.m., a
patient came in and my dad had to go sleep in the playroom on the hard
uncomfortable floor while my mom slept at the foot of my bed.
diagnosed with a benign, juvenile Pylocytic Astrocytoma, spinal cord tumor.
This meant that the tumor was non-cancerous (praise The Lord!)-although we
didn’t know that right away- and that there were two cysts filled with fluid:
one on top and one below the tumor. I was not in the room, but I’m sure my
parents cried, me being their only child, unsure of what would happen to their
little girl. The orthopedic doctor I had seen in my town of Hood River saw the
scans and explained to my parents that I needed to be seen at OSHU Doernbecher
Children’s Hospital the next day. We packed our bags with a few changes of
clothes and some toiletry items, unsure of how long we would be gone.
15th I went to my first MRI at OHSU (Oregon Health and Science
University) in Portland, Oregon. I was unsure of what to expect, but both of my
parents were there by my side to encourage and support me. What should have
taken about 20-30 minutes turned into almost two hours before the scans were
complete. It was a Friday afternoon and the doctor had gone home for the
weekend. Normally we would have had to wait until Monday to be seen, but
luckily there was a doctor on call in the imaging department who was able to
look at the scans. The news was not good, and our lives were about to change. I
remember some nurses taking me into a staff break room to do some coloring
while the doctor told my parents the news. They were being very friendly to me
and I thought I was so special getting to go behind closed doors where all the
doctors and nurses hung out and read their emails.
it was time for my follow-up appointment, my mom had a feeling that the same
thing was going to happen and that nothing had changed. The doctor would do the
same tests and have the same answer. Sure enough, that is what happened and my
mom, out of frustration said, “Can we order and MRI? She is still in pain and
it is not getting any better.” “I guess we could try,” the doctor uttered in
the next week, I slept at an angle which slowly increased adding more and more
pillows over time because the more horizontal I laid, the worse it hurt. The
day of my appointment came and we were hopeful for some answers and good news
because the pain was not getting any better. The doctor ordered more x-rays and
again, looked at them in closer detail. “Indeed, she has a minimal curvature of
the spine, but not to the point that should be painful. I’d say keep
administering the Tylenol and we will do a follow up in a week or so.”
morning, my back wasn’t feeling any better, so my mom made an appointment for
me with my regular doctor that afternoon. He took a look at my back, asking me
the same questions that my mom had. She mentioned to him that I did play on the
“monkey” bars at school a lot. He decided to order an x-ray and reviewed them
shortly after. “She does have a slight degree of scoliosis, but nothing that
should be causing any pain,” he reported. Explaining this, he referred me to an
orthopedic doctor which we would see in a week. My mom was told to keep up on
the Tylenol for my pain every four hours.
a cold crisp morning in March 1998. I went to school that day, sang in music
class, ate my lunch, and played with my friends at recess. When my mom picked
me up that afternoon, I told her my back was hurting, as I pointed in the
general area. She questioned me if I had done anything at recess or in P.E.
that might have caused it, and I responded with a “No.” That night I was having
trouble sleeping because every time I laid flat on my pillow, my back would
hurt worse. My mom kept an eye on me, giving me Tylenol and a few extra pillows
to sleep on so I was at an angle. It got me through the night.
start from the beginning.
up with my face on a sterile white sheet, tubes and wires coming off of me,
unable to move my legs. I could hear my parents’ voices and the beeping of
machines that I was hooked up to. My mouth felt like the Sahara Desert; I was famished
and I felt like I had been beaten up by a giant. I was in the hospital at OHSU
in PICU (Pediatric Intensive Care Unit). “Can you wiggle your toes for me
Madison?” came from a deep voice. My brain fired the signal to tell my left
toes to move. “Good. Now can you wiggle your right ones for me?” My brain fired
the signal, but this time, no movement. “Let’s get an MRI,” came from the deep