Elephants And Tea - December 2020 - 34

Caregivers

B-PRESENT.ORG

Being Present
HOW MY DAUGHTER'S EXPERIENCE INSPIRED US TO
IMPROVE SUPPORT FOR YOUNG ADULTS WITH CANCER

A

BY A BBY W E S T E R M A N

s I sat in my daughter Kirsten's hospital room one afternoon in
August of 2015, I looked across at her to see the sun shining on her
face through the window. Headphones on, she seemed so relaxed, as
if transported to a faraway and hopeful place. It gave me comfort to
see her so at peace in that moment. When she lifted the headphones,
I asked her what she was listening to. " My favorite song from my relaxation playlist. "
She restarted the song so I could have a listen, and when it ended, she preemptively
said, " You probably think it's weird it's my favorite song, but I love the lyrics. " The
song was " Like I'm Gonna Lose You " by Meghan Trainor, a beautiful and poignant
song that speaks to the importance of loving the special people in our lives because
we are not guaranteed tomorrow. That song was her anthem. Feeling loved, connected
and remembered was what she longed for most because she herself had become
unsure of tomorrow.
Kirsten was an intelligent, hilarious, spirited young woman that cherished her
independence, lived to make people laugh and deeply valued being around her
friends - laughter and people were her sources of positive energy. When she was
diagnosed with Acute Myeloid Leukemia at the age of 19, her carefree life was
upended. Confined to the hospital for treatment, she was suddenly dependent
on everything and everyone coming to her. And privacy and independence were
shattered in her small hospital room with frequent medical team visits and her
parents by her side 24/7.
I was not prepared for the sights, sounds and emotions I would experience in
the hospital, especially during the first month. I immediately felt the weight of
Kirsten's diagnosis and could barely keep up with all the medical terminology.
And because of the urgency of Kirsten's diagnosis, her life depended on making
swift decisions with blind faith. I found the nights were the most unsettling.
Alone with only my thoughts, the eerie glow of the IV machine and its sleep-depriving beeping. Kirsten often woke up frightened by drug-induced nightmares.
I welcomed the opportunity to get off the tiny uncomfortable couch to comfort
her and let her know she was not alone.
One of my most cherished memories was when she would take my hand and
place it on her belly, making soothing little circles. It warmed my heart to know
that a simple belly rub would bring calmness and help her back to sleep. I was
grateful for every opportunity to bring her peace, even if it meant interrupted
sleep. We both eagerly welcomed daylight and the promise of a new day of vis-

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DECEMBER 2020

its from friends and family and our favorite
hospital staff. Kirsten especially loved to take
her sense of humor to new heights as she kept
the staff in stitches, talked about every subject
imaginable and asked questions that kept them
on their toes. Even feeling her worst, she could
make them smile.
After a month in the hospital, the doctors
thought that a few days away could give her
the emotional boost she needed. Kirsten was
elated to be out of the hospital, grateful for a
chance to experience the things we take for
granted every day: going for a drive, seeing
friends, eating fresh food and sleeping in a real
bed in a quiet room. The added responsibility
of staying hydrated, administering her own
IVs, taking her pills and monitoring her vitals
for signs of a fever was totally worth the risk
to her. All was going well until she developed
a fever on the second day. Rather than wait it
out, I had her call the doctor, worried it could
be life-threatening. Within an hour, she and
her dad were at the emergency room (the only
hospital entry point after hours). They spent
the night there, sleepless from the sights and
sounds of medical chaos-not a good place
to be when you are immunocompromised.
To make matters worse, by the time she arrived, her fever had subsided. Unfortunately, it
was too late, she was readmitted. Regrettably,
I let my fear get in the way of trusting her as
an adult and letting her take control of the
situation on her terms. My intervention cost
her the freedom she so desperately needed,
and she would not get to leave the confines of
the hospital for another four months.
Her first time outside the hospital had another unintended consequence: the misunderstanding by friends that leaving the hospital
meant she was " cured " and no longer needed
support. This misperception and the start of a
new school year marked the beginning of the
steady decline of visitors. Life was returning to
normal outside the four walls of the hospital,
and she felt like she was no longer part of it.
As days turned into weeks, the isolation took
a toll on her mental and emotional health.
The long quiet days and limited distractions
as an adult in a children's hospital meant she
had plenty of time to watch life pass her by
on social media. Kirsten had a small group
of friends who stayed connected despite
their busy schedules, but I know it was hard
for them to balance school, work and being a
supportive friend. With outside visits declining, Kirsten searched for other young adults


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Elephants And Tea - December 2020

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Contents
Elephants And Tea - December 2020 - Cover1
Elephants And Tea - December 2020 - Cover2
Elephants And Tea - December 2020 - 1
Elephants And Tea - December 2020 - Contents
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