01.06.96 - The Diagnosis

*Over the coming months I will attempt to share my personal experience with cancer.  As always, questions, comments, personal stories, and support are more than welcome.*

Exactly 18 years ago at this time, I sat in a patient room at the Children's Hospital of Buffalo.  No, I was not in one of those huge open areas where you are granted privacy in the form of a curtain. I was in a full-blown private patient room complete with multiple chairs to accommodate my family and any visiting physicians.  The special room was actually the fourth red flag of the day, that clued me in to the fact that something was very, very wrong.

Earning a spot in the ER patient room...
Earlier in the morning, I found myself at my regular figure skating lessons with my coach, Paddy (one of the most caring and observant people I know).  We were working on two particular jumps without much progress.  I remember continuing to fall and with each progressive fall, it became increasingly harder to pull myself back up.  Consequently, we ended the lesson early and proceeded to chat with my family that was looking on.  "Maybe it's jet-lag?" someone said.  This was somewhat plausible since we just flew back from seeing my grandmother and cousins.  Paddy recommended trying out Alka-Selzter's new (at the time) cold medicine.  Whether it was denial or shock, no one really wanted to acknowledge that cold medicine may not be enough this time.

A nerdy shot at my grandmother's, less than one
week before receiving the diagnosis.

Red Flag #1
We left my lesson and traveled to my pediatrician's office. Despite the fact that we had been there just a month prior, the visit went down much differently this time.  We explained to Dr. Lee, whom we had just met, that I was diagnosed with laryngitis in December but the symptoms had not improved; in fact, everything was much worse. My shoulder now hurt and I was having difficulties breathing.  Dr. Lee did a quick physical exam and obtained my medical history before leaving the room to get my primary pediatrician. "We're not sure what you have but we need you to get some blood tests so that we can find out."  "What could this be?" my parents naturally inquired.  A virus, Mono, Cancer, and AIDS were the options given.    

Red Flag #2
Although it was only a couple of hours of waiting after the blood tests, it felt like weeks had passed before my parents' received a call from my pediatrician. This was long before everyone had cell phones so the house phone seemed to echo throughout the house as the call came in. "Go to the Children's ER. I'll let them know you're coming," said my pediatrician. My parents emerged from the study where they had been scavenging for information on my potential ailment since we left the pediatrician's office.  "Hil, Dr. Vaughan called. He wants us to go to the hospital." 

Red Flag #3
My father drove my mother and me to Children's while my uncle watched my brother, who was only 9 at the time.  As we walked up to the desk in the ER, I remember looking around at the other kids waiting.  Some looked like they had been there for hours.  I had already spent the majority of the day sitting around, waiting.  "Sheesh," I thought, "no more waiting!"  Anyone who has visited the ER knows that the problem with emergency rooms is that it is a giant catch 22; the longer your wait-time, the less sick you are, and vise versa.  You don't want to be sick enough to be pumped to the front of the line without a wait.  In this case, we didn't wait.  The woman at the check-in desk kindly said, "we're expecting you."  I was triaged before all of the kids that had been waiting for hours, before the kids with bloody wounds, and even before the kid that came in on a stretcher.  That's when I said to myself, "I'm really sick." 

In the ER...
Once in my private room, we did a fair amount of waiting.  I had more blood drawn and a chest X-ray.  Multiple physicians visited me and scribbled down my history. I showed off the petechiae that covered my calves (small red dots that demonstrated my low platelet count), had at least ten people feel my enlarged spleen and the swollen lymph nodes that were now visible across the room. One of the nurses put an IV in, "just in case."  "In case of what?" I thought.  Most of the physicians would pull my parents out of the room and have a quiet conversation in the hallway.  I could hear the whispering but something internal prevented me from getting up and trying to overhear my prognosis.  I just knew the longer I waited to hear the bad news, the longer I could live in my blissful, happy place.

... And the bubble is popped.
The truth is, most adolescents live in a bubble.  They don't realize it at the time (just ask them)- that's the beauty of it.  It is only after the bubble is popped, that you realize how awesome the world is when you're blind to most harsh realities of adult life.  For example, say... CANCER.  That's all it took, the physician explaining that I had CANCER- and like that, the bubble was broken.  In hindsight, I really had NO idea how hard the road ahead would prove to be for me and my family.  But, I did know that there was a reason people were scared of the word "CANCER."  Dr. Srinivas Thandla, the amazing fellow who was on-call that night and continued to care for me in conjunction with my primary oncologist over the next couple of years, had the unfortunate job of breaking the bad news.  Only 500 children in the US are diagnosed with AML each year and I was one of them.

My own bed...
Although hospitals are open on weekends, physicians generally don't like to schedule major procedures for Saturdays and Sundays. Naturally, getting surgery and starting an incredibly intense chemotherapy regimen on a Sunday was not going to happen.  I would have to get surgery and start chemo on Monday.  "I'm missing school next week!" I thought, half excited.  The excitement would definitely fade come Monday, but at that moment it was my happy place.

Although it is not standard practice now, I was sent home to spend two more nights "in my own bed."  I kept thinking, "what's the big deal with my own bed? it's not a California king."  What I quickly learned is that this idea of spending the night 'in my own bed' had little to do with my actual bed.  It was the ability to sleep through the night without waking up every couple of hours for vital signs.  It was the luxury of being able to roll over without having to yank my IV or central catheter lines to move with me.  And most importantly, it was the comfort of just being able to go to the bathroom without having to wake up a parent, unplug my IV pole from the wall, and pee into a "hat" so that my "ins and outs" could be recorded 24/7.  I appreciated 'my bed' those two nights, but would grow to appreciate it so much more over the coming year.


A long and scary car-ride.
So it is January 6th in Buffalo, NY.  It was usually a cold time of the year, but it happened to be extra cold on that memorable day.  In fact, it was the coldest day in Buffalo since 1963, reaching a low of -11 C.  My father was given the terrifying task of driving his sick daughter home at 10pm.  Getting in a car accident is something that happens rather infrequently in most people's lives; however, when a car accident is something that simply cannot happen, it is all you think about... and a car accident just could not happen.

AML is a disorder of the bone marrow that affects your ability to produce blood.  In my case, my platelets (aka clotters) were at an unacceptably low level (normal range: 150-400, my value: ~30).  To oversimplify,  car crash = Hil possibly dies.  In the event that we got into an accident and I didn't bleed to death, I would need a functional immune system to clean out any scrapes and lacerations that I may have incurred.  Unfortunately, leukemia strips its victims of a functional immune system.  This sucks because you're filled to the brim with white blood cells (aka defense system) but they're all undeveloped and won't do any good.  It's kind of like having a drawer full of knives when you're trying to eat yogurt- the drawer is full of utensils, just not the right ones (normal white blood cell levels: 4.3-10.8, my value: >80).

It was usually a 30 minute drive from Children's Hospital to our house in the suburbs, but the drive seemed to last forever.  It was eerily quiet and no one seemed to be on the roads.  I guess it was due to the extreme cold (maybe no one could get their car to start), but I almost felt like this was the beginning to a movie and the film crew closed down the road.  

Is this a Special Occasion?
As we got closer to the house my parents asked, "Do you want to stop and get Burger King?"  My Mom and Dad tried to sound excited. Burger King was a treat; something for special occasions.  Was a cancer diagnosis a special occasion?  As a twelve-year old, I wasn't going to let a night of scary cancer talk stand in the way of me getting a Whopper and fries; this could be the last one I ever have. "Yes, please!"  

We got home and I was still in one piece - nice job, Dad!  I eventually went to bed.  I am glad I didn't know what was about to happen because I enjoyed one of my last nights of decent sleep for a very, very long time.

 

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