Sunday, December 2, 2012

It Started With a Bear (Final)


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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