Today, the best friend of a deceased cancer patient shares an
experience: witnessing a loved one fight a losing battle against a
rare variation of cancer, for nearly 4 years. Being in sixth grade
at the time when her late best friend was diagnosed with Ewing's
Sarcoma, the middle schoolers' friendship drastically changed, along
with the lives of all those surrounding the patient. Pelvic cancer
was overlooked due to its sheer rarity, unfortunately making it far
more difficult to properly diagnose, treat, and fight.
Beginning primarily in the pelvis' legs, arms, or bones, Ewing's
Sarcoma (ES) is an extremely rare cancer that typically occurs in
children and young adults. ES is known to affect the femur, tibia,
or humerus, but can additionally spread to the lungs, bone marrow,
and soft tissue. Most ES diagnoses show results pointing to a
chromosome rearrangement between chromosomes 11 and 22. Said
rearrangement changes the position and function of the genes,
ultimately resulting in a fusion transcript. Although up to 70% of
cases are known to be curable, once the disease has spread, the
likelihood of survival drops to lower than 30%.
"Well, they never actually told me it was cancer, ‘cuz they thought
I'd be too scared back when it happened when I was a sixth grader,
right? They just told me she had a [non] malignant tumor, that
wasn't cancerous… And then I didn't get to know what cancer it was
until like 2 months ago."
According to her best friend, the patient "lost a lot of weight; she
had a lot of pain in her pelvis bone, ‘cause that's where the tumor
started. She had to stop going to school, especially during COVID
because of her immune system…". After undergoing chemotherapy to
increase her chances of survival, she started losing tufts of hair
and ultimately chose to shave her head. With chemotherapy came
countless health risks as side-effects, such as the death of organs.
The patient's ovaries were moved upward so the chemotherapy could
not damage them. "When we played she couldn't run as fast… She was
already thin, but she got really thin…"
Not only did cancer affect her physical state, but it had a drastic
impact on her mental health. "She had to stop going to school,
especially during COVID because [of] her immune system, right? She
couldn't go out. So all she did was watch dramas all day and play
games…She was really bored at home…" Due to the lasting effects of
COVID-19 on the patient's immune system, she was not permitted to go
outside so as to avoid the risk of being exposed to the virus. With
an already weakened immune system, contracting COVID-19 would lower
any chance of recovery. A study by The Lancet found that nearly half
of COVID-19 patients developed health complications, with a
prevalence of symptoms ranging from 0-27% in children. Along with
adding to the risks of her cancer, COVID-19 severed the patient's
interaction with many of her loved ones, and placed extreme pressure
upon her shoulders.
"And I visited her like the weekend before she passed, it was like
Halloween that weekend, so then, she was like really really weak,
like her whole face was swollen, and it was like really bad." After
three to four years of fighting, the patient sadly passed away,
leaving her friends, family, and loved ones highly affected by her
early death. "She [the patient's mom] used to hug me saying that if
her daughter was still alive, then she'd be as tall as me…"
"I hope that everyone realizes like it's actually a lot more common
than it looks, it doesn't only happen in adults. Kids can get sick
too and since they're younger, they're more susceptible to being
weaker and I feel like it's harder to lose like a child than an
adult."
As of today, cancer remains the number one cause of death by disease
among children, yet only 4% of cancer research funds are directed
toward pediatric cancer. According to the American Childhood Cancer
Organization, only six new drugs have been developed for childhood
cancer as of 2020, showing minimal support provided towards
pediatric cancer research. While predominant cancer is widely
addressed, 44% of childhood cancer cases go misdiagnosed. Because a
large portion of childhood cancer cases is overlooked, children have
a significantly lower chance of survival when ultimately diagnosed
too late to receive proper treatment. It is crucial that we do not
overlook this precedent issue in modern day society, that we
actively take measures to support those affected by childhood
cancer, and that we steamline research in innovations to make
diagnosis and treatment more accessible and efficient.
Donate today to help pave the way for childhood cancer research:
https://gofund.me/2ce103c5
Transcript
Q: Who was involved, who did this situation affect?
A: My best friend was diagnosed with Ewing's Sarcoma right?
And she has a little sister, and her mom, and her dad, which is away
on business a lot, but he's been home more lately because of her.
Her mom and her sister were obviously hit the hardest because her
dad wasn't home that much, and she was fighting for maybe 3 or 4
years, I think. But her mom took it really hard.
Q: What was your reaction to the original diagnosis?
A: Well, they never actually told me it was cancer, like ‘cuz
they thought I'd be too scared back when it happened when I was a
sixth grader, right? They just told her she had like- a [non]
malignant tumor, that wasn't cancerous. But, as it went on and she
was like getting chemo I like kinda was like- "Oh, it's kinda
not-not malignant?" So then we like- she was like "Oh obviously it's
cancer I know we didn't tell you specifically but…" And then I
didn't get to know what cancer it was until like 2 months ago.
Q: What were some of the things your friend went through,
gradually?
A: Well, she was diagnosed when it wasn't COVID times, so her
immune system, cuz of cancer, right? She lost a lot of weight, she
had a lot of pain in her pelvis bone, cuz that's where the tumor
started. Um, she had to like stop going to school, especially during
COVID because her immune system, right? She couldn't go out. So all
she did was watch dramas all day and play games, she used to tell me
what she did… She was really bored at home, she was going to go back
to online school learning, in eighth grade, because we thought she
was getting better. But that never happened. And, she was just
really bored all the time, and she was like kinda depressed about it
too, but like she was really positive overall.
Q: Did the diagnosis change your relationship with your
friend?
A: Like, when we played she couldn't run as fast, but like
later into COVID years I couldn't visit because of COVID and stuff,
we used to Facetime all the time and text, but especially when COVID
was more- relaxed, I still couldn't go over without a mask on,
because of her like health and stuff.
Q: What factors showed the effect of the disease on your friend
the most?
A: She was already thin, but she got really thin, and about
sixth grade, seventh grade, somewhere in between, she started
getting chemotherapy, and she started losing tufts of her hair,
right? So then she decided to shave it off, and we'd like give her
hats and stuff like that, and she was always cold all the time. And
then she was admitted to the hospital, we did more chemotherapy,
like we had to have surgeries to remove like- make her ovaries go up
so the chemo wouldn't kill them, trying to save them. After that we
thought it was okay, so she started growing her hair back, but in
the end, she kinda…
Q: When did you most feel affected by the situation, were there
any specific moments?
A: I'm like a terrible friend to her, I was actually a
terrible friend to her. But like, I used to visit her and she used
to give me friendship bracelets, and like seeing her without her
hair was kinda crazy, cuz she like loves her hair so much. And I
visited her like the weekend before she passed, it was like
Halloween that weekend, so then, she was like really really weak,
like her whole face was swollen, and it was like really bad.
Q: How did you view the situation then, versus how you view it
now?
A: When I found out, her sister was texting my sister because
they're the same age, so then she was like can you call me right
now, show me the text. And she showed me what she said, so then I
had swim practice in like 5 minutes, so I went to swim practice
sobbing, and I told my coach I can't swim today while crying. That
was when it actually hit, and then like for that whole like 2, 3
months, I was like- I couldn't do a lot, I was crying every night,
and like kinda emo. But now, I'm like more happy a bit, I feel like
she would've been in more pain if she was still here. She was crying
all the time cuz she said it hurt.
Q: How do you want people to view childhood cancer and to
understand it?
A: I hope that everyone realizes like it's actually a lot more
common than it looks, it doesn't only happen in adults, kids can get
sick too and since they are younger, they are more susceptible to
being like weaker and I feel like it's harder to lose like a child
than an adult. I'm not saying loss isn't hard, but. Because children
didn't get to like live out to their adulthood, it haves you wonder
what would they have been like when they were older, or what job
would they have had, but like things like that.
Q: How do you think this situation has shaped you as a
person?
A: I actually had never been to a real funeral before hers,
so, I learned how to cope with loss a lot better, because in the
beginning I used to like not say anything and just like whenever
someone mentioned her name I just turned away and started crying.
But like now I can like- I have my coping mechanisms for it. Once in
a while, I write letters to her, and keep them in a box, because we
used to write letters to each other, instead of texting, because we
were like "texting is like too millennial!" so we used to write
letters and stick cute stickers. Stuff like that.
Q: Are there any memorable stories or moments?
A: Like just one time it actually really hit, like I went over
to her house. My friend's mom, has two kids, right? She had two
daughters which matched the ages of me and my younger sister, so we
like hanged out together. The first time I went over when she was
gone, her mom used to like come crying to me and say "I'm sorry,
because now there's only three", and I'm the one whos lonely,
because my sister and my friend's sister have each other, and I dont
have anyone anymore. She used to hug me saying that if her daughter
was still alive, then she'd be as tall as me, and that's so
heartbreaking.
Sources
https://www1.racgp.org.au/newsgp/clinical/even-mild-covid-cases-can-have-lasting-effects-on
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)00799-6/fulltext
https://www.cancer.gov/types/bone/patient/ewing-treatment-pdq
https://nationalpcf.org/