It Started with a Bear
Some
would say we live in a world of mysteries, yet others may just not know. Several people fail to realize the
struggles people go through dealing with the unknowns, the unsolvable,
unidentified illnesses that people live with. Imagine yourself or a loved one
with some sickness that is burdened upon yours or theirs shoulders stopping the routine of
everyday life. Now imagine yourself or that person seeing countless doctors for
months on end, without a single one being able to provide an answer. These are the medical mysteries that
hover in the clouds, following us every single day. Whether it is an unknown disease, cure, or illness, there is
a team of trained doctors, researchers, and scientists out there searching
everyday for an answer. I would call them my heroes. My family was extremely blessed for an answer to our prayers, for whom I think of when these mysteries
come to mind, is my brother, and this was our answer.
Darren
was born on December 26th, 1995 to my parents David and Pamela Roe,
making him just about 21 months younger then myself. Even though I was an only
child until then, I can only remember as far back to the exact day my brother
was born. He was the life of me and that’s just how it was. Darren and I have
always been very close, but right after me, without question came his teddy
bear, Fuzzy. “Amanda you are my bestest friend ever, but Fuzzy is my bestest
friend too!” Darren would make sure I knew that his bear was very important to
him. He treated Fuzzy as if he were a living baby bear and
carried him with him everywhere. This bear provided him a sense of extreme
comfort that we would later realize why. Fuzzy was a gift given to my brother
from our grandma, my Dad’s mom, the day he was born. It was slightly bigger
then Darren himself, and he was a big baby, nine pounds, eight ounces.
About a year later, a few months
before my brothers first birthday, unexpectedly and for reasons my family
chooses not to talk about, my grandmother passed away and that is why this bear
was so special to him and my family. This was all Darren really ever got to
know her by since he was so young.
My parents would always tell him, “Now, through Fuzzy, grandma will
watch over you and keep you safe.” Darren’s first birthday was Pooh Bear themed, for his obvious
obsession with bears; Pooh Bear was his favorite show! I think he was just the
cutest little thing, and he had the chubbiest cheeks, just absolutely
adorable. But, it was a hard year
to get through, even at a young age, with the unexpected loss of my grandma.
I will always remember how sweet
and loving my little brother was when he was younger; he was also very curious
about the world in general. He would always be glancing around all over the
place and listening in on older children’s conversations on the bus. My mom
recalls a day when Darren was nearly five and came home and said “Mommy, can
you believe that these people were talking about hormones on the bus! What are
hormones?” 1
Darren was also a very experimental
child, he would do the craziest things that would, without doubt, make peoples
days. His smile was known for cheering people up, and his actions were
absolutely priceless. One day Darren decided to do a “handstand” but since he was
physically unable to do one, he decided to get creative! He put all his clothes on
the opposite parts of his body; socks on hands, underwear on head, shirt on
legs, then ran through the house saying, “Look everyone, look! I’m doing a
handstand!”
He always loved his trucks and his
Hot Wheels and all those things that boys enjoy playing with just like any
other kid would, but Darren had this distinct characteristic about him; he
would never fail to join me while I played with my Barbie dolls. There would be
days were he would beg me to play Barbie and put the shoes on all of them. The
Barbie doll’s shoes were his favorite part; he would line them all up in a row
by color and pick out a pair for each outfit that I would create. And Heaven
forbid I would put shoes on them, “No! Amanda! That’s my job!”2
When Darren was about four years
old he started to have random occurrences of extreme, doubling-over in pain,
stomach aches. The Christmas
right before he turned five we were out seeing Santa Clause and I remember being
so angry because he wouldn’t stop crying. No one understood how much pain he
was really in and everyone in my family just thought he was being over dramatic
like kids do, I mean who was to know!
Darren continued having these episodes of an upset stomach and about a
year later after Darren turned six, something frightening, for him and my
family, happened. My brother and I were at daycare and Darren’s eyes turned a
bright yellow color and he started throwing up everywhere. It was very scary
and I held him and told him that everything was going to be okay and that we
were going to get help right away. My daycare provider called my parents and
right away they both left work. This
is when my parents finally realized something was seriously wrong. They
immediately took him into the doctor’s office to get checked out.
The doctors originally thought that Darren might have had hepatitis but
they ruled that out after doing precise blood work. So, upon demand by the
doctors, Darren was transported straight to the hospital for MRI testing and
ultra sound testing as well. Keep in mind, Darren was only a little boy, five
years old, and they had not one clue what could be wrong with him. They had to
find out fast, they knew it was most likely something bad, in his case a matter
of life or death, since it was uncommon and to some unheard of. Darren was a walking medical mystery
that needed to be solved and fast. The jaundice, his yellow eyes, triggered
this urgent seek for help. They found lots of things wrong in both tests.
After all these test and after
lots of research from experts around the world on such unusual cases, the
doctors concluded that my brother had a Choledochal cyst. According to the
University of California’s Department of surgery, “This a congenital
abnormality of the bile duct that causes abnormal enlargement of the bile
duct.” 3 According to Michael AJ Sawyer, a medical doctor,
“Choledochal cysts are relatively rare in Western countries. Reported frequency
rates range from 1 case per 100,000-150,000 to 1 case per 2 million live
births. Choledochal cysts are more prevalent in females than males, with a
female-to-male ratio in the range of 3:1 to 4:1.” 4 This is why it
took the doctors a little while to figure out what was wrong. The doctors told my family that it
could be genetic, although it has never been present in our family’s history,
or it can be a developmental problem in the womb. It’s very strange though that my brother would get this
considering it is mostly found in Asia and in females. This was a life threatening condition so Darren was in need of surgery as soon as possible.
My family and I were all very
scared. We really had to trust that the doctors would do the right thing. Anything can go wrong during a surgery,
but we knew this had to be done for Darren to get better. It was at this moment
that my family realized how anything could happen to anyone and how important
it is to have faith in our medical fields that they will do what’s best to help
our loved ones and ourselves get better. We have to trust that they have been properly trained not
only in knowing what needs to be done but how to do it. Ever so thankful were
we for the researchers and surgeons who diagnosed my brother and figured out what
was required to be done to get our sweet, loving Darren back.
My
brother was operated on at John Hopkins hospital and they brought in one of the
best surgeons in the world because his condition was so rare. 5 He
was one of the first children in the United States to be operated on with this
condition.
My
brother’s bear became a very important figure in his life at that time; he was
just a little boy and was scared; he needed our grandma to watch over him. My
family was scared too but we all tried not to show it because we wanted him to
have faith in us as his family to help him and assure him that everything was
going to be okay. He was a very strong little boy for having such an intense
surgery so young; he was hospitalized for two weeks following the surgery for a well-assisted recovery. I will
never know how he did it; I am just honestly so thankful that my baby brother
is alive because I have no clue what I would do without him. He gives me so
much strength when I need it and helped me push through a surgery of my own
later on in my life. To this day Darren is still a very funny guy, I couldn’t
tell you how many times I have cried laughing so hard, he also still has a shoe
fetish of his own and constantly wants to buy shoes for all of his own outfits.
By looking at someone you could
never know the stories that lie within us, but we will always have our scars.
Darren really looked up to me when
he was younger for my support and encouragement. I told him everything was
going to be okay but you best bet that I cried my eyes out the second he left
home to go to the hospital to be operated on and I wont every forget it. Darren really was the life of me. I’ve
never met someone with so much courage, happiness and appreciation in my whole
life.
Everyone needs a fuzzy friend from
a loved one to watch over him or her. So upon his recovery that is exactly what
I got him. I made him a bear at Build-a-Bear Workshop, and I named it Shamrock,
because I am so lucky to have a brother like mine. This medical mystery started with a bear, and this medical
miracle was celebrated with a bear. Today those two bears sit in his bed and
watch over him every single night.
We are so blessed to live in a
world where people have dreams to become doctors and have the determination and
strive to solve such mysteries. Every single day they are hard at work looking
for cures, discovering new illnesses, conducting new tests, creating more tools
to do more precise surgeries, and most of all saving lives. I surely would say
I first handedly witnessed a miracle.
If you or a loved one is suffering from these unsolved mysteries, don’t
lose faith. The doctors aren’t giving up on us, so we shouldn’t give up on
them.
Footnotes:
1. Pamela Roe, e-mail message to
author, September 25, 2012.
2. Ibid.
3. University of Southern California,
Department of Surgery. "Choleodochal Cyst." Center for Pancreatic and
Biliary Diseases. www.surgery.usc.edu/divisions/tumor/pancreasdiseases/web%20pages/BILIARY%20SYSTEM/choledochal%20cyst.html (accessed
September 30, 2012).
4. Sawyer, Michael AJ. "Choledochal
Cysts ." Medscape: Medscape Access. http://emedicine.medscape.com/article/172099-overview#a0199 (accessed
September 30, 2012).
5. Pamela Roe, e-mail message to
author, September 25, 2012.
Pictures:
David Roe, personal family
photographs. (dates not recorded).
Documents:
Pamela Roe, provided through e-mail
message to author, September 26, 2012.
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