Elephants And Tea - March 2021 - 21

I woke up dazed and confused a couple days
later. Why was I in a different room? What was
all this stuff attached to me? I soon realized I
was in the PICU, but I didn't know why. What
happened? I knew something serious happened
because that's the only way you end up in the
PICU. Soon I was told by my mom what had
happened. Because of all the different medicines they were using to control my symptoms
I went into ventricular fibrillation. My heart
was out of whack because all the medicines
prolonged my QT-Interval. I had coded. The
doctors performed CPR for two minutes before
they had to shock my heart back into rhythm. I
was lucky and am so grateful for all the healthcare heroes who were able to save me. Now
though, I would have to begin a slow recovery.
Recovering from what was deemed " The
Event " was hard. I could barely do normal
everyday tasks. Simple things like walking or
even just getting to the side of my bed felt almost impossible. I felt like a baby. Everything
had to be done for me. Thankfully throughout
recovery I had a great support system. I had
my mom, dad, and stepdad there for me the
whole time. Every day, I had someone there
for me. Even some of my friends and a teacher
from elementary school came to see me. It was
amazing to see them and have their support
even after not seeing some of them for a while.
It helped give me strength and motivation to
do the therapy to get out of the PICU. Soon, I
was taking baby steps like sitting on the edge
of my bed. Then, sitting on the edge of my bed
went to sitting in a wheelchair to eat my favorite hospital meal, a chicken quesadilla. Slowly
but surely, I began to regain my strength. One
thing I vividly remember, was doing occupational therapy with a knitting loom. I was
trying to make a hat, but I could not get the
string to stay on the loom. I remember being
frustrated because I couldn't finish a project
I started, and I do not get discouraged easily.
Each time I wrapped the yarn around a peg it
would slip off. Struggling with a simple project
for kids was one of the big things I remember
for some reason. It seems silly now, but it was
frustrating to not be able to do something
deemed " simple. " After a while though with
the help of physical therapy and occupational
therapy I was on my feet and walking again. I
was one step closer to going home.

I woke up dazed and
confused a couple
days later. Why
was I in a different
room? What was all
this stuff attached to
me? I soon realized
I was in the PICU...
something serious
happened... I had
coded. The doctors
performed CPR for
two minutes before
they had to shock
my heart back into
rhythm. I was lucky
and am so grateful
for all the healthcare
heroes who were
able to save me.

I had soon graduated to the Cardiac ICU,
which was not much better than the normal
PICU, but I was closer to going home. However,
I would have to adapt to life with a new snazzy
device called the Life Vest. The Life Vest is basically a bra that can defibrillate you back to life.
It also has a monitor attached to it that weighs
about as much as a brick. I had to wear this all
day every day. This life saving device was one
of my biggest enemies recovering from my first
chemo regime. I already didn't feel good and on
top of that I had to wear this torture trap for 11
months. Normally when you have a Life Vest
you only wear it for about three months until
you get a permanent defibrillator implanted,
however with a compromised immune system
doctors didn't want to increase infection risk
with surgery.
By the time I was able to get a permanent
defibrillator installed in my side I knew I was
relapsing. The night sweats, swelling and pain
were coming back. No one at my home hospital
in St. Louis knew what to do. I was stuck in
another rut. I had to make a decision and fast.
I knew if I kept waiting around, I would run
out of time. I am fortunate that my dad lives
near Philadelphia and that Children's Hospital
in Philadelphia (CHOP) has one of the best
pediatric oncology programs in the country.
I made the decision to leave all familiarity to
go find lifesaving treatment on the East Coast.
I met with the oncologist at CHOP and they
looked at all the pathology and determined
I had indeed relapsed, and my best and only
options were clinical trials. I was soon referred to two different oncologists who were
specialists in my specific type of lymphoma.
One was at The Hospital of the University of
Pennsylvania (HUP) and one was at Memorial
Sloan Kettering (MSK) in New York City. Soon
began the process of trying different clinical
trials to reach remission with the goal to reach
an allogenic stem cell transplant.
Trials began and soon I was back on the
road to recovery. Going through trials was
interesting. It wasn't without its setbacks, but
nothing worth it in life is ever easy to achieve.
Each trial had an amount of success, but I just
kept relapsing. When I felt good though, I was
able to accomplish and see a lot. I was able to
explore so much of the East Coast while going through the various treatments. Without
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Elephants And Tea - March 2021

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Contents
Elephants And Tea - March 2021 - Cover1
Elephants And Tea - March 2021 - Cover2
Elephants And Tea - March 2021 - 1
Elephants And Tea - March 2021 - Contents
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