ON DIAGNOSIS …
My sister Ali
was diagnosed with either Stage 3 or 4 Alveolar Rhabdomyosarcoma when she was
13. She had been having pains for some time, but I don’t think we had a correct
diagnosis for months. I think doctors assumed they were dealing with a benign
cyst, and they performed a surgery to remove the “cyst” before performing a
biopsy. The post-surgery biopsy came back with the cancer diagnosis - this is
exactly the sort of “oops” surgery that Sarcoma Alliance tries to prevent
through education.
I’d never heard of sarcoma before her diagnosis and cancer was one of those things that definitely happened to other families. It wasn’t until after word of her diagnosis spread through our school and friends that I started to hear from other people whose lives had been impacted by cancer.
I’m pretty sure we were all home when we got the official diagnosis. When you’re that young, you don’t have the understanding of what, “your sister has cancer,” really means. My reaction was along the lines of, “This isn’t a big deal, right? She’ll be fine, right?”
Ali's diagnosis came just before my 16th birthday. Not having a birthday celebration was the first way that I really felt like the disease impacted me. Obviously, that was incredibly naive, and I never could have guessed how much cancer would impact our entire family.
ME, SCHOOL, AND SUPPORT …
At one point,
I remember hearing that Ali had a 25% chance of survival. That was the first
time it really sunk in that my sister could die. That I could actually lose my
sister. I never heard this 25% number again, but that was the day it became
real for me.
School definitely suffered. My dad was working in another city, and my mom and sister traveled far from home for treatment. There were long stretches of time where I was by myself. This was the first time in my life that I realized no one was watching. I didn’t have to go to school if I didn’t feel like it. My grades slipped for one semester and I probably missed 3-4 weeks of class while my parents were both out of town.
I mostly didn’t get support and didn’t know how to ask for what I needed, especially when Ali needed so much just to stay alive. I always tended to “go with the flow,” and at the time, I saw that as a positive trait, but I took that too far.
My friends definitely helped - they would come by the house when they hadn’t heard from me, and I had a holiday meal or two with their families.
LONG-TERM
IMPACT …
Problems with
school were definitely the most glaring example. I’d always been a good student,
but somewhat lazy about school. The lack of parental oversight (no matter how
necessary) enabled me to take that laziness to its full extent. After high
school, I went to college and simply stopped attending classes. Did skipping
classes in high school set me up to do the same in college?
I later learned that it’s very common for siblings of cancer patients to have similar academic problems.
ADVICE FOR
OTHERS …
I would tell
other siblings that they deserve attention too. Most kids just aren’t capable
of asking for attention directly and it’s natural (necessary) to focus entirely
on the child with the disease. It’s literally a matter of life and death to
make sure the child with cancer gets the best treatment possible.
The other siblings will survive, and so they may fall through the gaps. I don’t know if there’s a good answer - I don’t think our family found one, we just did what was necessary. Maybe it would have been different had there been extended family in the area - I could see a large family being able to share the weight of childhood cancer.
Sarcoma is a terrible thing, of course, but have there been any hidden blessings?
Ali and I were
always pretty close as siblings, but I think there will always be a deeper bond
from our family overcoming this life-threatening disease. After many
years of living in different states, we moved to within a mile of each
other. I don’t think there could have
been a better close to this story than meeting my nephew the day of his birth.
Oh, and I’m still a fairly obsessive hand-washer more than 15 years later, so perhaps I’ve been spared some flu and cold seasons!
Depends on who is cooking! If it’s on me to cook,
my repertoire extends to spaghetti, lasagna, and grilling. Grilling was
definitely a hidden talent - it’s all about getting the timing right. Put the
food on, close the lid for a certain number of minutes, flip once, and then lid
down until it’s done. I’d definitely grill if you were coming to dinner.
