01.11.96 - A Brutal Introduction to Cancer Treatment

*WARNING: Starting today, my story becomes a bit more graphic. I wish I could report that things were less awful but they weren't. This is what my cancer treatment looked like in its purest form.*

Thursday

As the Ara-C (7-day chemo) continued to drip, its effects started kicking in... rapidly!

Background and a little Ara-C Science
Ara-C, also known as Cytarabine, is primarily used to treat acute leukemias and non-Hodgkin lymphomas.  It was first created in 1959 at the UC Berkley, and approved by the FDA ten years later.  Since that point it has been used in induction therapy of white blood cell cancers (like AML). As you may recall from biology class, cells have to duplicate their DNA in order to duplicate themselves and make more cells (does mitosis sound familiar?).  

Ara-C works by interfering with this process, specifically by halting the creation of new DNA. Because my cancer cells were dividing rapidly and were going through this process of DNA creation much more than other cells in my body, Ara-C could have a large impact on the cancer cells while not destroying the rest of my body. HOWEVER, Ara-C still affected the other cells in my body. 


Due to the mechanism that Ara-C used to fight my cancer cells, it had the largest effect on the other rapidly dividing cells in my body - most notably, my GI tract. Once the Ara-C started affecting my GI tract, I immediately felt the effects in the form of unimaginable nausea and vomiting.


The Morning
The morning was tough; I was really nauseous. My dad spent the entire morning next to my bed as I did nothing but dry heave bloody mucous. As you may remember, I was still taking Allopurinol to prevent Tumor Lysis Syndrome and kidney damage, or rather, I was still supposed to be taking Allopurinol. Unfortunately, Allopurinol is administered as a pill. I did try to take it- honestly; however, my failed attempt only resulted in severe gagging and more dry heaving.

Shortly thereafter, my nurse infused Benadryl through my Broviac. Although I felt absolutely awful, there was a 30 second period between when the Benadryl kicked-in and before I fell asleep that I felt borderline euphoric! Intravenous Benadryl was my new favorite thing. In the moment before I fell asleep I thought, "finally, some relief."

What too many cancer kids look like. Borrowed from Super Skyler.

The Afternoon
Unfortunately, the Benadryl wore off and when I awoke I was overcome with nausea followed by more dry heaving. I couldn't move without dry heaving. My goal became to lay as still as possible. It was the beginning of a stretch of days when the lights would only be turned on for physician exams. The TV in my room had to remain at an almost inaudible volume or else it triggered more retching. 

Trips to the bathroom were a nightmare. I tried to have as little extraneous movement as possible while trying to pee and return to my bed as quickly as possible; a feat that is challenging to accomplish when you're still getting used to the tubes coming out of your chest that are hooked up to a machine- a machine that has to be unplugged and follow you to the bathroom. My poor parents had the responsibility of rapidly unplugging my pump while helping me out of bed, ensuring that I didn't step on/roll over/pull out my tubes, and grabbing 'barf bucket' in the event that something went awry. They couldn't act as if they were trying to move quickly because that would inexplicably make me feel nauseous but they definitely couldn't move slowly or else the wrath of a sick, 12 year old Hilary was unleashed.

Speaking of unleashing the wrath of Hilary, the nurses came in every two hours, around the clock, to get my vital signs. It goes without saying, that the only thing keeping me from losing it was the steady stream of anti-nausea meds.  
 

To give you an idea of what a pump looks like for a cancer patient. Borrowed from Team Matthew.org. 

More Antiemetics - score!
My nurses came to the rescue again, as they hooked up a bag of Zofran. Zofran is an antiemetic (anti-nausea med) used to help CINV or Chemo Induced Nausea and Vomiting. What I didn't fully comprehend at the time, was that I was getting Zofran because I was about to get another type of chemotherapy with the known side effect of nausea. After the Zofran was done infusing, I was given Daunorubicin.


Daunorubicin
Daunorubicin, like Ara-C, was first created in the 1950's. It was one of the first anticancer compounds created by isolating soil microbes, in this case the microbe was Streptomyces peucetius. Daunomycin fun fact (if that's possible): the "Dauno" comes from the name of a pre-Roman tribe that once occupied the region of Italy where the compound was created and the "rubicin" comes from the red pigment produced by the new strain of Streptomyces peucetius. 

Yep. The stuff is actually bright red.

More importantly, Daunorubicin works to stop cancer in much of the same way as Ara-C; although it uses a different method of altering the process, Daunorubicin also stops DNA replication, which halts the rapidly dividing cancer cells. 
      

The Night
The night offered a small relief (only one episode of dry heaving in four hours), which was largely attributable to the wonders of antiemetics. 





My goal for this blog is to raise awareness, support, and donations for ongoing cancer research. Please  make a donation  today to support this cause.

DONATE HERE

 

01.10.96 - CHEMO TIME!

Preface

Caution Chemotherapy
Chemo is a scary word and rightfully so.  It is short for chemotherapy or "chemical therapy."  Yep- therapy with chemicals.  It just sounds barbaric and that may be due to its primitive roots.  In the 1940s the US military was starting to dabble in chemical warfare when a German air raid bombed a town in Italy, accidentally causing the release of massive amounts of mustard gas that was being transported on a US ship.  The US sent a smart doctor over to do a little research, and after performing some autopsies, it was determined that only certain types of cells were killed, which happen to be the types of cells that many blood cancers affect (myeloid and lymphoid cells).  This information was reported back to the chemical warfare division and consequently almost directly led to the discovery of the first chemotherapy agent: Nitrogen Mustard.

  

Nitrogen Mustard and its derivatives went on to fight certain types of cancers such as lymphomas and many are still commonly used today.  Unfortunately, treating with chemo is analogous to chemical warfare.  No one is impervious to the Mustard gas and although enough of it will kill all of the "bad guys", there's also no way to protect all of the "good guys."  With that being said, chemo evolved from the 1940's to 1996, slightly...

01.10.96 - Wednesday

Waging the War Against Cancer (and the night staff)
Today was the big day - day 1 of chemo!  However, before I waged war on my cancer, I accidentally waged war on the night nurses.  You should know that my parents did not like loathed having to wake me up when I fell asleep on the couch (I swear they would play rock, paper, scissors to free themselves from the awful task). So, you can only imagine how well I hit it off with the night nurses when they stuck a thermometer in my armpit and squeezed my arm with a blood pressure cuff.  "Grrr! They must be kidding!?! Vitals at what time in the morning? Is 2 am even considered the morning?" Before cancer, 2 am was the middle of the night, but now, no time was sacred. At any moment the door could swing open and someone would want to poke me.  As I quickly learned from my first two nights in the hospital, my world as I knew it was changing rapidly and there was no stopping it. Unfortunately, that doesn't mean that my nighttime alter-ego was accepting of that fact.


The Call
Before today, my parents did not have to report my diagnosis to anyone. It was our secret. Then my mom called my middle school.  She spoke to my guidance counselor, who previously had been very supportive of all of my academic and extracurricular pursuits, and for the first time my mom said, "Hilary has cancer."  Needless to say it was accompanied by tears but also an action plan was developed. My teachers would be notified and tutoring would be a possibility, if we deemed it appropriate. I was eager to keep up with my classmates, in fact, I was not going to accept any other options. Being in the accelerated math class, I was eager to stay on track so that I could take ninth grade math and science the following year, in eighth grade. Among my friends and classmates, this was the way to boost your entrance into college as it created room to take extra Advanced Placement classes for college credit (I was letting my true overachiever side shine through). There were no ifs, ands, or buts, I was not going to let cancer change my goals. Fortunately, my parents and my guidance counselor were on board.


Perks
Cancer sucks but small perks existed. This is something I figured out on the third day of my stay. The first, and more insignificant perk that I was rewarded with was a visit from the Wendy's mascot and coupons for frosties! Why they showed up with coupons and not actual frosties is beyond me; however, I was pumped. I remember salivating at the thought of a frosty. Unfortunately, the coupons would expire long before I was getting my hands on a Frosty. <sigh>

The much more important perk that my mother and I both received was getting to meet new and awesome people. A woman and her daughter, who was about the same age as me, came to my room to visit and introduce themselves. I was first struck by the fact that she didn't have any hair but then by how unfazed she appeared to be. She was at Children's receiving treatment for ALL (acute lymphoblastic leukemia). Although it sounded pretty darn close to what I had, it was not treated the same way because it was a completely different disease. She was in the middle of her treatment, which would last over 2 years!  "Wow! I have it easy," I thought.  However, the flip side, as she and her mother explained, was that she was able to mostly carry on like a normal kid during her treatment, just without hair. Over the coming week as my condition deteriorated, my mom was able to talk with someone who completely and totally understood, and for that, we were both thankful.

Checking my Heart
After consenting to protocol #94-21 that was run by the Pediatric Oncology Group, I received an echocardiogram and an EKG. Since the a great deal of my treatment was known for being cardiotoxic (causing damage to the heart), my physicians wanted to get a baseline reading and more importantly, make sure my heart was cut out for what was about to happen. The echo was pretty cool, in a nerdy science kind of way. Using an ultrasound wand, a video of my heart, complete with squishing noises, appeared on the monitor. 

The EKG was a quick test that involved strategically placing a bunch of stickers on me, attaching wires to each sticker, laying still for a minute, and then removing all of the wires and stickers.  The read out looked something like this...

Fortunately, my heart was in 'excellent' shape per the cardiologist and we could continue as planned without any additional concerns.  


No one wants AML in the Brain
It's true, no one wants AML. Period. But you especially don't want it attacking your brain. This is one of the reasons why I found myself getting a lumbar puncture around 3pm. Unlike a bone marrow aspiration/biopsy, where I mostly worried about the pain, this procedure seemed a little more dangerous. In all honesty, pediatric oncologists do these all the time and any risk of injury was minimal. However, when you're curled in a ball on your side and firmly instructed not to move as a needle is placed right next to your spinal cord, you can't help but sense the severity of the procedure. My physician explained that they were taking out some of my cerebral spinal fluid (the stuff that cushions your brain and spinal cord) to see if there were any cancer cells swimming around. Once they were able to extract CSF, they infused some chemo, specifically ara-C. The idea was that if I had cancer in my CSF, the ara-C would immediately start treating it. If I was fortunate enough to not have cancer in my CSF, then the chemo was going to work to prevent it. Although the chemo would start going to work immediately, I had to spend the rest of the day lying fairly still to prevent a headache (a common side effect of lumbar punctures due to the removal of CSF).

My Life Blood
About 4 hours after my lumbar puncture, in the early evening, I was connected to my first bag of chemo. I was still getting used to the idea that I had tubes hanging out of my chest and the associated pain from the surgery, but I quickly started to realize, treatment for AML was a 'hit the ground running' kind of thing. I then recognized the butterflies in my stomach not as nausea but as excitement. Excitement? Yep. The same excitement I felt before I got on stage for a ballet performance, was there and it was unmistakable. I was in fact excited to kick the crap out of cancer and at that moment, as the drug was being hooked up, I did not feel fear... only strength.

"This drug is Ara-C and you will be getting it continuously for the next 7 days," said my nurse as she hung another bag on my pole, ran the tubes through the machine (aka pump), and connected a long tube to my broviac. "I'm going to be in the hospital for at least another 7 days!"  The thought hit me like a brick. With the exception of my birth, I had never slept in the hospital and certainly not for over a week. My physicians had previously explained to my parents and I, that I would be receiving three different chemo agents in conjunction with one another for this first round of treatment. The main goal was to completely obliterate the leukemia and that meant it could get ugly.

As if chemo wasn't already cool enough, most chemo treatments have a nickname.  My chemo treatment was called '7+3'; 7 for the number of days of ara-C and 3 for the daunorubicin, a red chemo which I would be getting for 3 days. In addition to the ara-C and daunorubicin, my doctors threw in yet another chemo known as 6-TG.  Although the ara-C dripped the entire day, I still had a second line on my broviac which allowed for the infusion of daunorubicin.  6-TG was much less intense looking than daunorubicin and only required me to pop 3 pills each day for the week.  All of these drugs were given because they each fought the cancer in a slightly different way; however, they also came with a very, very long list of side effects.

Side Effects

Hair
The list of side effects was nothing short of overwhelming.  "The chemo is going to target rapidly dividing cells, like your cancer.  But, other cells in your body will be affected, too," my physicians explained.  As a 12 year old girl who wasn't laying lifeless in bed due to naseau yet, I asked what most girls in this situation ask, "Will I lose my hair?"  I particularly liked my brown, straight hair.  My hairdresser always flooded me with compliments and, with the exception of one incident in 1st grade when I cut my bangs in math class, I never had a problem with it.  So, the thought of losing it terrified me.  "What would my friends think?  What would the other kids at school say?  Would any boys like me?"  To my relief, my physician replied, "there is a chance you will lose your hair."  "Oh phew,"  I thought, "I'm going to beat the odds and I'll keep my hair!"  Now, I don't want to ruin the ending to the hair story but how many people have you seen with leukemia that don't lose their hair?  Eventually, I came to realize that the interesting thing about cancer treatment is that nothing is a definite- whether it is losing your hair, being cured, or not having children.  Nothing is a definite.

The Other (much scarier) Side Effects       
Chemo is scary, but losing your hair, is in reality one of the least scary side effects.  Unfortunately, when you're faced with a diagnosis of AML which is progressing rapidly, the deleterious side effects do not outweigh the possible benefit of treatment.  Some diseases provide multiple options but for me it was limited- 7 + 3 was the MD approved treatment or standard of care.  Still, the list was daunting: life-threatening heart problems at any time during treatment or months to years after treatment (thus echo and EKG), nausea, vomiting, mouth and throat sores, diarrhea, stomach pain, red urine, rash, hives, altered blood counts, seizures, meningitis, difficulty breathing, low blood counts, poor appetite, decreased liver function, tumor lysis syndrome, increased levels of uric acid, eye pain/tearing/sensitivity to light, dizziness, headache, excessive sleepiness, confusion, loss of balance, flu-like symptoms, swelling of extremities, incontinence ...  To manage and minimize the side effects, I was started on over 10 other drugs most of which I took each day. 

My goal for this blog is to raise awareness, support, and donations for ongoing cancer research. Please  make a donation  today to support this cause.

DONATE HERE

01.09.96 - Getting an Upgrade

Tuesday
 
Trading In My IV 
Despite how much I endured to get an IV, it was only temporary because it wasn't long before I received an upgrade! It's kind of like going from that beat up car your parents gave you in high-school to your first, new, drive off the lot car- not only can you drive somewhere in fashion now but you won't have to plead with it to start in the morning. I was going to be the proud owner of one brand-new double-lumen, Broviac catheter! No more annoying attempts to get blood out or for that matter, needing warm packs to ease the pain of blood and platelet transfusions.  

A little cancer patient showing off her Broviac.

There's a reason you always see tubes and IV poles in photos of cancer patients- it's because they're always hooked up to something. In my case, it was going to be A LOT of things. When you are scheduled to have multiple concoctions pumped into your body around the clock for the next few months, a Broviac is a great option. It allows nurses to pull blood easily without having to use a needle and makes the administration of fluids, drugs, and blood products as easy as possible- all of which I required.  


Surgery
I was a little nervous as I was prepped for surgery. The doctors "expected that I would do great" but there's no guarantee when you're getting general anesthesia. I was transfused again overnight with my second bag of PRBCs to make sure my counts were adequate and I could afford to lose a little blood.  

As I got ready to head to the OR at 11:15 am, the overwhelming feeling of nervousness suppressed any feelings of hunger. My parents smiled and tried to assure me that everything was going to be fine, but I could sense that they were more nervous than me. How could they not be? I convinced myself that I had some control over my outcome but they knew better, as parents usually do.  My parents knew that they had little control and that my outcome was largely in the hands of my physicians. As I left the room, my nurses hooked me up to another pack of platelets that transfused as I was en route to the operating room.

I remember the OR being cold and everyone being way too nice. The next thing I remember is waking up with tubes hanging out of the left side of my chest. Although I was in the OR for less than an hour, it was a big procedure. "It's official," I thought as I woke up with a pain in my left arm, "I am definitely sick."

In hindsight, I had no idea how bad it was going to get but that naiveness permitted me to mount a pretty good mental attack on the disease.  After the thought of death startled me earlier in the day, I managed to safely pack it away somewhere so that I could regroup and prepare for battle.  After all, tomorrow was going to be a big day...

01.08.96 - A Day of Preparation

Monday

The Morning

It was early Monday.  My teachers, friends, and even my little brother were boarding buses and getting into cars to head into school.  Our neighbors warmed up their cars before embarking on their chilly Monday-morning commute.  The big news story from the weekend was a huge blizzard that paralyzed the East Coast from Washington to Boston.  My big news story- cancer.  

Sledding at the Capital building.

The Secret
Nothing seemed to have changed as everyone went about their normal routines. "I shouldn't expect a change though- we haven't told anyone."  Aside from my doctors, the AML diagnosis was a secret that only my Dad, my Mom, and I shared.  My little brother knew that "Hil is sick," but that was the extent of it.  At some point, my parents would have to make The Call to school but for right now, it was a secret.  To be honest, I'm not 100% sure why it was a secret but I didn't challenge my parents.  Eventually, I would learn that a cancer diagnosis is in some ways like winning the lottery.  It's so rare that no one ever expects their friends or family to 'get picked.'  This ends up providing a certain window for the affected party to square away any logistics before letting the word spread (i.e. insurance policy, leave time, finances, etc).  

The Drive
As we drove from my house to Children's Hospital, I wondered how my friends would respond to my absence.  "Oh, she must be sick today," I figured they would say.  Being sick though, was something I never did.  In fact, I was 'Miss Perfect Attendance' every year (with the exception of the Jewish High Holidays).  Not one sick-day and then... Leukemia.  

"Will I still be able to play softball this summer?  Will they let me take accelerated classes next year?  Am I going to lose my hair?"  Somehow it was the hair thing that hit me the hardest at first. Maybe it's because I was 12 or maybe because a bald head is all too often a sign that someone is dying... "Dying? Am I dying? I feel sick but not dying sick."    

Luckily for me and unluckily for my Dad, it was a normal Monday in Buffalo and people were driving into the city to go to work.  The other cars gave me an opportunity to suppress the scary thoughts and do a little daydreaming. Unfortunately, they did not make the drive any less stressful for my Dad. He had to prove his driving skills worthy yet again, but this time with the added challenge of dealing with angry Monday morning commuters. Fortunately, my Dad is an all-star and we arrived at the hospital ready to start a challenging 10-day battle in what would prove to be a much longer war.   
  

The Beginning

I was officially admitted to the 8th floor at 10:15am. Everything started off somewhat slowly. I had more blood drawn to assess my disease status, determine if I needed blood and/or platelet transfusions, and evaluate my titers for various viruses. Of course, I had yet another physical exam. After the ER visit, I was already becoming accustomed to the routine... Several deep breaths then breathing normally.  A somewhat painful massage of the huge lymph nodes in my neck and under my arms. I would show off the petechiae on my legs, then I would lay down and my enlarged spleen would be poked...  I didn't mind, because I knew at some point the assessments were going to be the easiest thing on my agenda.  Cue the first year Resident...

As you may know, once a med student graduates from med school (and passes the boards), they become a doctor and in most cases, a Resident. There is a first for everything and in this case, I was the first person receiving an IV from this resident. I'm certain that learning to start an IV isn't an easy task and I'm even more certain that starting your first IV on a 90 pound 12-year-old girl who was diagnosed with cancer 2 days prior is just a bad idea. But there I was, in need of an IV. I'll save you the painful details but to summarize, I was poked 4 separate times on the back of my hands. By the second poke, my parents were pretty annoyed. By the fourth poke, they were demanding someone else. I wish I could say I was a champion, but I think I lost that title as I sat on the edge of the bed grinding my teeth and shedding a few tears while the doc continued to twist the IV. In the end, I had a new IV to show for all of the pain and could start getting some much needed meds and blood products.


Protection from Chemo
"I need protection from Chemo? Wait, I thought chemo was saving my life?" My physicians explained that I would be taking allopurinol 3 times a day to protect me from some of the side effects of this first round of intense chemo. 

As I would learn over the next couple of weeks, treating leukemia was a bit of a game. The goal of first line cancer treatment is to kill lots and lots of cancer cells; however, killing this many cells in a short amount of time can be very dangerous. When the dead cells break open in the blood stream their contents get released into the blood causing the uric acid levels to rise. This can cause crystals to form in the kidneys and potentially cause massive kidney damage. My newest medicine, Allopurinol, worked to prevent the conversion of 'the cell guts' into uric acid and would help keep my kidneys working as much as possible. 

Looking Inside My Bones
When your bone marrow is sick, it needs to be examined.  Unfortunately, there's no easy way to examine bone marrow.  Blood counts give you an idea of what's going on with your bone marrow but oncologists don't like to give kids chemo based on an idea- they like to have something more concrete.  Thus, I had the privilege of experiencing my first bone marrow aspirate and biopsy.  I say 'privilege' because it truly was.  I was given so many drugs, I barely felt a thing (except maybe a little euphoric).  

With that being said, long before the drugs set-in I was putting on my game face. Doctors described the process to my parents and me- "A bone marrow aspirate involves sticking a long needle into the hip and extracting some bone marrow. Following the aspirate, a biopsy will be performed, where a cylindrical piece of the bone is removed." I was told that both of these assessments were necessary. The aspirate would help give more information about my leukemia including any unique cytogenetics, either good or bad (think chromosomes). The biopsy would help provide some insight into the "landscape" of my bones and bone marrow, and of course the leukemia.

The whole 'needle into the bone' thing seemed a little scary but my fear grew as I was told that it is 100% normal to hear "a crunching sound" as the small drill travels through your bone- ugh!  Like I said though, there was a very happy ending to this particular procedure mostly due to the power of sedatives and pain meds.  Although the procedure did not take that long, we would have to anxiously await the results for much longer.



The Calm Before the Storm 
Once the drugs wore off, the evening proved to be less eventful than the morning. Since my hemoglobin/hematocrit was low and because I would be heading into surgery in the morning to trade-in my IV, I was transfused with a bag of packed red blood cells (PRBC). Unfortunately, I was still stuck with my IV until the following day. IVs are smaller than central catheters/broviacs; therefore, the transfusion bordered on painful. On the plus side, my nurses were the bomb. They immediately placed a warm pack over my IV and the remainder of the transfusion was much better.


Since my platelets had dropped since Saturday and because I was about to have a surgical procedure, I was also transfused with my first pack of platelets, which lasted for another 2 hours.

It had been a long day and I had been made NPO (nil per os= nothing by mouth), so going to sleep that night wasn't too hard. My nurses had a steady stream of fluids hooked up to my IV though, so I had to tolerate the long tubes hooked up to my hand and the board keeping my wrist from bending due to the IV. I'm certain that first night wasn't easy for either one of my parents, especially since my mom would be sleeping in a reclining chair for the night.

    

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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