Elephants and Tea - March 2021 - 20

Thank You

CANCER CHANGED ME

t was the Summer of 2015 when
I began feeling sick. I would
be super nauseous all day and
couldn't eat much. I had lost a
ton of weight, and I began to
look like a skeleton. Eventually,
I went to my pediatrician to get
checked out. Bloodwork was
the first step to solving my very complicated
puzzle. The tests revealed my calcium levels
were extremely high. Quickly, I was sent to St.
Louis Children's Hospital to see an endocrinologist. Hopes were I just had an issue with
my parathyroid, but that was not the issue.
A couple other things were thought about
from endocrine standpoint until I was then
sent to rheumatology. After more testing and
scans, still nothing could explain my high
calcium levels. Soon I ended up staying in
the hospital for more extensive testing. I saw
specialist after specialist until eventually my
rheumatologist found a hard spot on my left
calf. That was the only abnormality there was.
With an MRI they found pockets of inflamed
granulomas. After a biopsy, I was diagnosed
with sarcoidosis, an autoimmune disease. I
started treatment for that, but nothing truly
seemed to control things. Something was always off for two years while being treated for
sarcoidosis. Nothing ever kept the symptoms
at bay. I went through steroids and medicine
after medicine until things hit a tipping point.
I was itching my skin raw, I couldn't sleep, and
I was so fatigued. No one could figure me out.
I was considered a mystery. At the time I was
a senior in high school and was just trying to
make it to graduation. I missed a lot of school
that year. I was depressed and felt out of place.
I did not know what was wrong with me. I felt
like I may never get a straight answer. It was
beyond frustrating.
Towards the end of my senior year I ended
up back in the hospital once again. I could not
take the itching and fatigue anymore. I earned
another week full of testing, poking, and prodding. At the time I had a little bit of nagging
pain in my back, but I didn't think much of
it. After a CT scan a mass showed up in my
back. The mass was compressing my spinal
cord. I was told I would need to get emergency
neurosurgery right away to take the pressure
off my spinal cord. Without surgery I could

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MARCH 2021

become paralyzed if the mass got any worse.
It was such a scary thing to hear. Luckily, I
had some of the best surgeons for the risky
five-hour procedure. Recovering from that
surgery was the hardest thing I had ever been
through. It was extremely painful. The worst
part was being told that I could possibly have
lymphoma. I was mortified by the thought of
having cancer. Eventually, the biopsy results
came back as juvenile xanthrogranuloma, a
histiocytosis disease. This disease is sort of
like cancer, but not. I got a port and started
chemo. I began having weekly infusions of
vinblastine and felt better immediately. Scans
got better, but that was just another piece of
this complicated puzzle.
It was now July 11th, 2017. I was excited to
see a concert that night. For my high school
graduation present I was going to meet my
favorite band, Shinedown. I felt awful that
day, but I was not going to miss that concert.
I could barely stay standing for the meetup. I was weak and fragile. The concert was

amazing, but two days later I was in the hospital shivering uncontrollably with a fever of
105. Instead of rocking out, I was stuck in a
hospital bed hooked to tubes trying to figure
out what was going on this time. I was being
pumped with all kinds of medicine to manage
all the symptoms of the prevailing lymphoma.
Soon, an enlarged lymph node was found and
biopsied. This time the lymph node was sent
to the National Institute of Health (NIH). The
results came back, and I was diagnosed with
Anaplastic Large Cell Lymphoma ALK-Negative. Treatment started immediately as I was
borderline between Stage III and IV. I had my
port, but I needed more vascular access. They
decided to place a PICC line at the bedside. I
remember the nurses pushing the relaxation
medicine into my port and the soothing
sounds of the relaxation channel on in the
background. There were pictures of animals
passing on the TV as my eyes closed. What I
thought was just falling asleep though, was
something much worse.

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Elephants and Tea - March 2021

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