The unpleasant “routine”

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Chapters
1. Just an ordinary life………………………………………………
2. The Beginning………………………………………………………
3. The Home Stretch………………………………………………..
4. Movin’ on…slowly……………………………………………….
5. Off to the races…again………………………………………..
6. The Biggest One Yet……………………………………………
7. Starting Over 2.0…………………………………………………
8. A Different Life……………………………………………………
9. No Other Choice…………………………………………………
10. Their Words……………………………………………….

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Chatting, chatting, chatting that was all that I heard. Other people’s voices talking
about what was going on with me.

Ch 1: Just an ordinary life

My life was like any other kids my age, movies, sports and video games. I could
tell you that I liked school but, that would be a lie. I envisioned that my life would
stay normal because I had no reason to think otherwise. I never expected my life’s
path to change. At the age of eleven, what else was I to think? Things all did
though on the day of my cousin’s funeral. I felt like I wasn’t a kid anymore, it was
as though I lost my innocence. I knew that people died as well as had medical
problems, I was just naïve in thinking that it would never happen in my
family….but it did. We spent an entire year watching my cousin from his bedside,
fight leukemia. It was a battle we thought he was winning. However everything
that he did to fight the disease was for naught. Even though to us it seemed like
he was in the clear. This was a false reality, he ended up passing away.

My family was emotionally exhausted when we returned from Matthew’s

funeral. We each sat speechless around our dining room table, staring blankly at
each other trying to find comforting words that would ease our sadness that day. I
had to leave to escape the heaviness that was all around me, I laid in my bed and
just shut my eyes hoping I would wake up from this nightmare that I was having.
What I didn’t know was that my nightmare was only beginning.

I woke up the next morning thinking that the mood of the house would still be sad
and I couldn’t focus on anything but this strange pressure that was emanating
from my head. It wasn’t anxiety, it wasn’t sadness, it wasn’t a regular headache, it
was different. Despite not feeling well I still tried to go about the day like it was
any other. I wanted to do something fun like hang out with my friends or, hang
out by my pool and enjoy the Summer weather. I needed to take my mind off of
the sadness that was all around. However, it was futile because an overwhelming
feeling of lethargy came over me. It was though all of my energy was sucked out
of my body. This was a foreign feeling to me, as I was an active kid who usually

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had a lot of energy. I didn’t know why my body was acting this way. I tried my
hardest to pretend that I was feeling okay because I didn’t want to worry my
mom and add to her already immense emotional stress. But she soon caught on
that something wasn’t right. I lulled around the house acting as if everything was
okay but, after a while I couldn’t pretend any more. I tried to fool the rest of my
family too but mostly myself that I was okay though, I wasn’t fooling anyone. Like
any concerned parent, my mom sensed that I wasn’t well and insisted on taking
my temperature however according to that reading I was fine. In spite of my
normal temperature and my insistence that I was okay, my mom still felt that
something was the matter. She spoke with my aunt, who lived upstairs and they
thought they should take me to our local hospital to get looked at by a doctor.
Other than my short stay in the hospital when I was born I had never been there
for anything else.

My grandpa or as I call him papa who was over with my nana tried to think less
drastically and didn’t see the need to take me there. Instead he assumed that I
was simply feeling sad and blue from my cousin’s recent passing, he suggested
taking me to the mall to try and get my mind off of things and everybody was in
agreement. I vaguely remember driving there with him but what I do remember is
not being able to hold my head up and having to lean against the car window for
support. When we arrived he was unable to get me more than two steps inside
before my legs stopped working. Leaving me immobile, I became physically
incapable of moving, it was frightening. We walked out of the mall, got back into
the van and drove straight home.

Upon arriving back I was met by my family’s worried faces. They discussed and
tried to determine what they could do to try and help me. Soon after, they came
to the consensus that I needed to go to the hospital. My mom had to basically
drag me into her car because I didn’t have the energy to walk myself. Only my
mom and I went to that hospital as we didn’t want to make a big scene in case it
was nothing. I wanted to believe that the source of my fatigue was only emotional
exhaustion. I didn’t want to entertain the idea that it could be something more
serious. The doctor on shift in the E.R. (Emergency room) asked basic questions
and took my vitals, afterwards he concluded that I had Norwalk. I didn’t have any
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idea what Norwalk was but, based on my moms facial expression I knew that she
did not agree with his findings.

We didn’t stay too long after hearing that doctor’s diagnosis of my symptoms. My
mom thanked him for seeing us and we were on our way back home. When we
returned I can remember my aunt saying, “That wasn’t too long that we were
there.” But, upon telling her of the diagnosis my aunt shook her head in
agreement with my moms decision for us to leave. A short while after that, after
telling my mom that I was feeling a bit better, she still took me back to her car
and we were off to the next hospital’s emergency room. This time, we were going
to one that only dealt with sick kids and women though, I was not a pregnant
woman so I was pretty sure that we were going to the Children’s hospital. She
wanted to see if my next diagnosis would be different from a disease that I
could’ve picked up from a booze cruise to the Caribbean.

After we arrived my height and weight were taken like at the other hospital and
we were told to wait to be seen by doctor that was on call that night in the E.R.
Following her resident seeing us he told her that everything looked fine with me
then I was given the once over by the doc. where she told us that her diagnosis
was migraines caused by stress. Stress, I knew the word but I didn’t know what
she was talking about. I can only assume that after my mom talked with the
doctor and let her know about my cousins recent passing that she (that doctor)
thought I was depressed. She was the head of neurology so, who was I to
question her findings? She assumed that all I was feeling was “in my head” and
my mom jumped the gun by taking me there. My mom looked at me with eyes of
confusion but, I knew that what I was feeling wasn’t depression and thought the
doctor was talking nonsense. I am not a doctor, or even close to being one but
knew that I wasn’t depressed. Just because I was so exhausted from the day I kind
of nodded along with what we were told pretending like she knew best. A little
while later all of the fluids that doc. had put me on were done, I was checked over
a final time and we were told to go back home. When that time was over I can
remember hoping that it would only be a one night thing and that everything
would be okay. We got home and I went straight to bed. Upon waking up in the
morning I felt fine and thought the previous night was just a freak event. But, my
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mom took the doctors “findings” of depression pretty seriously and told me that
maybe I should go to my dad’s house just to take my mind off of everything. I
didn’t think anything of it, I knew that I wasn’t those emotions but went just to
appease her.

A little while later my dad arrived and asked what I would like to do well, because
on the previous night I was at the hospital I wanted to just take it easy that day.
When we got to his house my stepmom prepared one of her weird concoctions of
food for breakfast but I said that I wasn’t hungry just to spare her feelings. I went
about the following hours as if nothing happened on that previous night. As the
day went on, later as a suggestion my stepmom said that I should go and see an
acupuncturist. I don’t know if you know anything about what they do but, I
quickly found out when we got there. After my dad drove me to this “healer’s”
office we waited in a little jasmine scented lobby for the woman who would be
doing this, it wasn’t too long before my name was called and my dad was told by
this little old lady to come back in one hour. I sprawled out on her little table and
all at once I felt these little needles being poked into me. I imagine that a lot of
people swear by that method of treatment but, I am not one of them. After laying
there for about an hour as a human pin cushion the acupuncture lady came back
into the room, removed the needles and then we left. My dad asked with a smile,
“How’d it go?” I wanted to tell him that I thought it was a crock but when I saw
his face I think that he already knew. We arrived back home and had something
to eat but, slowly as time went by I noticed that odd feeling come back in as well
as around my head. My dad gave me a paracetemol for the pain and it went away
for a while but, when the pill’s effects wore off I noticed that now I had a new
symptom – nausea. Within that half an hour I ran to the bathroom to upchuck my
lunch. The rest of the day went on and by the time I went to bed I was even more
curious as to what exactly was happening.

Upon waking up the next day it was much the same as the one before, I felt fine
at first but, shortly after everything turned bad. I seemed to be perpetually
standing over the toilet, not always getting sick but forever worried that I would.
After seeing me standing there my dad loaded me into his car and called my mom
to tell her that we were on our way back to the hospital. It seemed like a short
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amount of time to get there or maybe I just wasn’t paying attention. Nevertheless
upon our arrival everyone else was there too……we were going through the same
routine again. I told the nurse of my symptoms and after we all waited for me to
be seen by the doctor who was on-call as well as her resident. I told them the
same thing that I had the time before, they hummed and hawed for a while and
told us that those fluids would “Fix me up”. Soon after, I remember my mom
talking with the nurse asking if anything else could be done. That nurse assured
her that like the doctor told us, it was only migraines caused by the stress I was
feeling. By that point now I could see the look of doubt in my mom’s eyes. When I
became less sick or looked less sick at least after those fluids I was given were
done but became worried that maybe all of this wasn’t over. I never told my
family but, I was as scared as I had ever been not knowing what was going on.
Later after most of that fear left me I made a promise to myself, whatever was
happening I would not be taken down.

Again I was hooked up to those fluids and when they were almost done that
doctor came in and asked me how I was doing. I told her that I was getting
confused about what was going on because there I was again in the E.R. and we
still didn’t know the diagnosis. She looked at me as though she knew that the only
thing that was happening was that I was depressed and confused. I wanted to say
something as she told us that diagnosis yet again but, I was too tired to bother.
Yet again I was connected to an inter-venus (I.V.) with some fluids and was told
that we could go back home when it was done. I was just so unsure about what
was goin’ on and that was the most confusing part of everything. When
everything was through I was detached from the I.V. pole and we all headed back
to my mom’s house. After arriving there the feeling that I had inside me was that
everything wasn’t over…it was sickening. I continued to feel out of sorts for a
while but, didn’t get sick anymore so I assumed that things may not have been as
bad as we originally thought I was just so damn tired.

A few days went by without having to be at the E.R. again so, I was glad about
that but it was like there was some sort of hex over me and those odd feelings
started to come back. I was lying in bed ready to fall asleep and all of the sudden I
woke up and had to run to the bathroom, I had no control – I had to throw up. My
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mom had been sitting on the couch having a glass of wine, I guess trying to “de-
stress’ after all that had been going on. Upon her checking up on me she ran up
the stairs to wake up my aunt to get us a ride to the hospital. They came
downstairs and proceeded to take me there, hoping that this time we would get a
different diagnosis. As it happened the previous times we told the nurse my
symptoms or, my mom did I was basically just a puddle sitting next to my aunt as
my mom talked to the nurse. When she was done she came and sat with my aunt
to await the doctor. It was the same doctor that was on the other nights. From
what I could hear from their conversation it seemed as though my mom was
talking but wasn’t being heard. I guess when that doctor smelt wine on my mom’s
breathe she thought my mom was just an overconcerned parent who had drank a
bit too much. She was then sent outside and told to take a minute to calm
down….Luckily my aunt was with me because if not I would’ve been alone. A little
while after that my grandparents came down to the hospital to check in on us and
told my aunt when they arrived they saw my mom outside and asked why. They
told us that it looked like she was a raging bull, she was steaming with anger. My
aunt told them why she was out there and I could see my nana’s face immediately
turn red, she then asked my aunt to come outside with her to have a cigarette.
Soon after, they made their ways back into the hospital with my mom and told my
papa and I that my mom had calmed down.

Later that same on-call doctor came in to where we were in the E.R. and by this
point I had my own “room” in there, it was just a bed that was surrounded by
curtains but, it was better than nothin’. The doctor who was there the last time
told us with the same self-assurance that she had before said again, it was just
stress as well as those bad emotions I felt because my cousin just died. I tried to
tell her once more that wasn’t how I was feeling but, she assured us that she was
right. She and her resident doctor who by that point we called him, “Noddy”
because whatever the doc. would say he would just nod along with her. They
gave me a look over, asked how I was and again told us that it was depression.
They repeated like a broken record, I imagine that my family was feeling a little
deflated by that fact. Eventually my dad came down and while the rest of my
family went outside to have a cigarette and my papa went to the café we had a

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moment alone. I asked him if what was going on with me would ever be fixed and
he didn’t respond. The only thought I had in my head was the one where I would
forever be a patient not knowing just what exactly was happening. I can
remember when my mom asked the doctor to give me a head scan, the doctor
told her that they didn’t want to expose me to any radiation. Then with kind of a
pompous additional comment that doctor asked my mom if she thought that
what I had was a brain tumor. My mom replied and very plainly said, “Yes.” We
were assured that it wasn’t and once those fluids were done that third time I was
asked by my nurse how I was doing, I don’t know if it was out of being a smart ass
but, I said to her, “You tell me.” Before we left the doctor came and pulled me off
to the side privately and said that lots of people were depressed after losing a
family member. As she tried to shove that topic further into my mind I simply
rolled my eyes. We went home still not knowing what was taking place. I think
that my family’s protective demeanor kept me level-headed during those time
because I just wanted the question of, “What was the matter with Steven?” to be
answered. When we all arrived back to my moms house we were terrified about
what was taking place, I looked into each of my family member’s faces and I just
saw terrified looks.

When I was at home the next day standing over the toilet I was just in the
bathroom permanently standing over the toilet. We were so confused, my mom
did the only thing that she could do to combat this and handed me an anti-nausea
pill. I remember hearing from her that she thought everything was going to be
okay, she said that despite us both not knowing what was going on but, those
words comforted me a bit at least. This way which I was feeling was so odd
because it just wasn’t what I was used to.

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You know, I think by that point we all didn’t want to think that what I was feeling
could be worse then what the doctors at both hospital told us. It seems odd to
talk about it now because I wanted it to be the end of what was going on but
really it was the beginning. Not knowing is scary, don’t let anyone tell you
otherwise.

A day or so later it took me a couple of seconds to realize but when I woke up I

noticed that everything was double and freaked out a little. When I got myself
together I rushed over to my moms door and told her of my new view. She then
rushed upstairs to tell my aunt as well as my grandparents that we all needed to
make another run to the hospital. I don’t know about anyone else (because I am
not them) but, I hoped that there might be a definitive answer to what exactly
was going on. As we all rushed into my grandparents van to go to the hospital I
blacked out and don’t remember waking up until we arrived back at Children’s
Hospital. When we got there my mom immediately went to the front desk to tell
them about this new symptom and when she did immediately after, a nurse came
with a wheelchair to take me down to get a C.A.T. scan. I imagine that my family
all gasped sighs of relief when that happened.

By the time the results were back I was back to “normal” and wondered what the
surgeon found. When we got the results back the same doctor who was on call
each of the other nights told us in the little room we were in that what I had was a
brain tumor. I guess as kind of a ‘positive’ side effect of being told for so long that
what I was experiencing was “In my head” by the doctor my family wasn’t sad as
they heard that but, finally justified. She also said it had most likely been what
was causing all of my recent symptoms. I didn’t have the energy or the wits at the
time to ask the doctor if she still thought I was depressed but, I could tell that my
nana wanted to…….she looked like enraged. It was a funny moment too because
she is just this little five foot woman, she later told me that she didn’t make a
scene because we were all in a state of shock. We were apologized to and then
after we got told that within the next day or so I would have another appointment
with a surgeon who would tell us of the plan for me. Well, there wasn’t much
jumping for joy when we finally found out what was going on. We all wanted to
think that things like this didn’t happen to people like me because I was just your
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average kid who played soccer every fall. We were acting like zombies after
hearing the news, we just sat there lifeless while being told that on the following
day I would have an appointment with the surgeon who would be crackin’ into
me.

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Ch 2 : The Beginning
It was just my mom and I who returned to meet with the surgeon the following
afternoon to find out just exactly he would be doing in the coming hours. At first I
was a bit frightened but, his cheery attitude calmed me down. He told us that this
operation was going to be a simple one and it was just to have something to eat
first then he would operate on me. When he said that my mom and I looked at
each other with little smiles then I got ready. We were then directed to the “Day-
care” surgery wing of the hospital to await them calling my name. As we were
waiting there I was met by the rest of my family who came down to wish me luck,
my mom told them what the surgeon said to us and they laughed a bit too. We
had a few more chuckles too but eventually when the nurse came to pick me up
to go to the O.R. (Operating Room) I was smothered by my family as they all gave
me a hug and a kiss while telling me that I would do just fine. I was taken down
there by the nurse as well as my mom who wanted to come as far as she could to
comfort me. She gave me a kiss goodbye and all of the sudden everything was
about to begin. One of the surgeons nurse’s came in front of me and told me to
breath into the mask she was holding then count down from ten. Before I made it
down to six, I was out like a light. About forty five minutes later I woke back up
with gauze on my head and a nurse asking how I felt. I let her know that I was fine
but, was curious as to how the surgery went. I told her that I was so happy that
the pressure I was feeling around my head was gone. Then before I heard her
answer to the question that was just asked I closed my eyes and upon opening
them back up I was in the regular recovery unit with my aunt and one of her
friends at my side. I only vaguely remember talking to them as well as the Scottish
nurse I had because I was on some pretty strong pain meds. That Scottish
comment part of the story is important to this next little bit because after I talked
with my aunt, her friend and my mom who came in later I spoke to that nurse
with a thick accent asking her about Braveheart. Like I said, I was on some pretty
strong drugs but, later they wore off and I wanted to know how soon I could get
out of there to grab a steak. That was a little delayed though because I was told

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that right after I woke up I noticed that I had a catheter in my area……and flashed
my aunt as well as her friend. My mom then came in and when my aunt told her
about the little peep show I put on she asked the nurse if we could stay one more
day to let the meds. I was on wear off a little bit more. It bummed me out a little
but, there was nothing I could do so I just closed my eyes.

A couple of days later I returned to the hospital with my family and we went to a
whole different area this time: Oncology. When we arrived I was too tired to
bother about anything and just laid on my papa’s lap. Then a doctor there called
the rest of my family into an office to discuss the results. We both fell asleep but
soon were woken up and told to come there with everybody. I can remember the
rest of my family being all teary-eyed and wondered what had made them that
way. When we came into the office it was like everything was happening in slow-
motion when the doctor spoke. That feeling of wonderment didn’t last too long
because shortly after we came in the doctor told my papa and I of the results
from the scan. It was a brain tumor…..a brain tumor that was causing all of those
symptoms I had. Everyone’s eyes just focused in on me when the doctor said that,
I guess they were wondering what I would do or say. I’m not sure if it was because
of the shock value of what I just hear but, I didn’t weep and fall on the floor, I just
asked that doctor what the next step was going to be. I suppose he was expecting
a different reaction and/or question then took a step back. He then proceeded to
tell us roughly what would be happening over the following months and said I
would be receiving some treatments but we would get the entire plan from a
doctor who was going to be specifically looking after my case. We thanked him for
telling us the results and got started to make our way back out of the office. All of
us headed out of there in an utter state of shock, I guess that was why my mom
said that just her and I would come back the next day.

That next day we went to Children’s to meet my doctor as well as her resident.
She told us what the plan was going to be over the next ten months or so and it
was a duzie. We were let know that although half or so of my tumor was benign
(Non-cancerous) the other side was malignant (Cancerous) and I would have to
receive six treatments of chemotherapy, a brain operation to remove the
remaining bit of tumor (After those treatments) and then radiation to kill any
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possibly remaining cancer cells. I looked back at her when she told us of that plan
and asked sarcastically, “Is that all?” She didn’t really get that I was joking around
and proceeded to tell us that I would be having to get another surgery before
everything began to insert what I now know to be called a Venus Access Device
(V.A.D.) into my chest. The reason for that being was that it would allow all of the
medicine to run throughout my body easier than if I was just to get a needle in
the arm every time I was there. I looked at her with a blank stare and wondered
to myself if there would be any up side to all of this. After a couple of silent
moments of us all there it was our turn to talk, just to try and get a better hold of
what was going on. We asked a lot of questions but the one I remember the most
was, “Is he (me) going to be feeling bad during all of this?” We were told that I
would more than likely lose a bunch of weight and feel terrible during the days of
treatment……Both of us didn’t hear too much after that and as we left her office
with tears in our eyes but, my doctors nurse quickly came to tell us that my
doctor was simply speaking generally, it wasn’t necessarily going to be that bad. It
comforted us a little though, I was still as scared as ever. I suppose when she saw
my face as we were getting back to her car my mom said we should go to a
restaurant to grab some food. I just sat there eating with a blank stare on my face,
my mom grabbed my hand to try and comfort me but, we were both so deflated
after what we just heard. Before those treatments were going to start I had to get
a piece of equipment put into my chest that would be attached to veins which
would carry all of the medicine around my body. So, we went to the “Day-care
Surgery” unit again, it was placed there and then everything got real, real fast.

Those went by and we returned to the hospital so I could get the first treatment.
Before the treatment could begin I was weighed and measured then handed a
wristband with a number on it which I think I’ll never forget: P1087109.

I was then attached to the medicine I was to get via that new device I had in my
chest and it was all placed on this I.V. (Inter-venus) pole. At first it was terrifying
because I remembered the horror stories that I heard about this medicine. I was
under the impression that these meds. would make me feel terrible. As time went
by though I felt fine and was wondering what the big deal was. I just took the I.V.
pole and headed into the teen room which was there to watch some T.V. with my
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family. From in there, I could see into the other part of the clinic where all of
these kids that were younger than me getting their treatments as well. It was a
real eye-opener to see the grip that disease has on which I now know to be all of
humanity. I told my family before that I wouldn’t give up but, when seeing those
kids it renewed my determination. I don’t think that if I ever had the opportunity
that I would erase such a memory from my mind because it help to open my eyes
of the enormous impact of this disease has on peoples lives. I was soon brought
to the land of the present by this little queasy feeling that I was having from the
medicine. I told my nurse and to combat it, I was given gravel and this other anti-
nausea drug the hospital had.

Within a couple of hours milling around the hospitals teen room, my first day of
treatment was over. I was detached from the lines that carried the medicine, and
was sent home to await the next days treatment. Upon leaving I almost forgot
that I would have to go back there for the next three days. When we returned
home I noticed the medicine that I received that day didn’t affect my like the
doctors said it would. I wasn’t feeling sick and I kind of felt normal but, my mom
wasn’t taking any chances, she was going to make sure I kept my health up. She
sat me down in my bed, put a tray in front of me and fed me three times a day.
That first week of my treatments seemed to fly by and what felt like not too long
after having started it, it was done and I felt pretty good.

When I was recuperating at home, my friends would sometime come over to ask
how I was feeling. I kept assuring them that I was doing fine regardless of what
they may have heard about the strength of the treatments I was receiving. It
meant a lot to me having the breaks from the hospital, I got to be a normal kid…to
some degree. It was summer break from school and I had the opportunity to
have some of my friends over whenever I wanted, you know, as long as I wasn’t
feeling too bad from the treatments and my mom approved. I can remember
feeling like an alien though; like I was an object of everyone’s curiosity.

15
 I suppose the feeling that I wasn’t had a lot to do with this new lump I had under
my skin; the VAD. It was like one of those plastic objects from the game
“operation.” It was a piece of plastic that shouldn’t have been there, at least that
is what it felt like. When it was first put in everyone asked why it was there and
after telling them, they didn’t really ask about it anymore. I was glad they stopped
because I didn’t want to feel different or, like an object of everyone’s curiosity.
But when they left though again I was planted in my bed and was fed, forever
being told I needed to build up my strength for the next round of treatment.

I can recall when my mom was told by one of her friends at work that juicing
vegetables and fruits would be good to keep up my strength. Well, if you think
solid beets taste bad, they taste a hell of a lot worse as a liquid! My mom tried to
cut the beet juice with fruits and other vegetables, but the juice still tasted like
dirt. The beet shake was the worst shakes I had to drink but regardless of how
they tasted, I would still chug them down.

Life kind of went on like that for those first three weeks. I would get up in the
morning, have a shake and lull around the house; that was my routine. The days
seemed to just slip by and soon enough, it was time for the second round of
chemo. We were worried about how it would go because this round of chemo
medication would be stronger, which meant I would be in the hospital for a week
during this round of treatment. My mom took it all in stride though, she packed
our bags and off to the hospital we went. I was a little surprised at first when she
told me she would be staying with me while I was receiving treatment but, I was
overwhelmed with comfort too knowing that too. She told me that she would not
leave my side for any reason…especially during this time.

I can remember getting my hospital ID wrist band and being taken upstairs by a
friendly nurse. She propped me up in bed, attached the medicines and hung
them up on my “dancing partner.” Later I was given a call button so that I could
let her know if I needed anything. This time, not only was my treatment different,
but I was sharing my room with a little five year old boy, that was getting
treatment as well. We found out from his parents that he had a different type of
cancer, but just a serious. How a little five year old gets cancer, I don’t know, but I

16
was glad there was a place like this for him. I know that this sounds a bit selfish
but I tried not to pay much attention to what was happening to him. I simply
wanted to focus on the problems I was facing.

I suppose it was a good thing I was in the hospital this time because the medicine
I was given was definitely stronger. I simply tried to shut my eyes and rest
throughout it all. The treatments started taking a toll on my energy but not my
appetite, thankfully. In order to keep herself busy, or to distract herself from the
boredom, my mom would pick up groceries and cook me meals in the kitchen in
the ward. In that little kitchen my mom was able to make me food I enjoyed,
compared to the, I’m trying to find a better word than “gross,” to describe the
hospital’s food but can’t. Those first days were the toughest for me, I barely ate
or slept, and each time I looked down at my pillow, I would see my long hair
falling out. It was more than just a few strands; the hair covered my whole pillow
case. That is when I made the decision to have it all shaved off by the nurse, the
wards barber. I wasn’t too worried about it at the time because she seemed to
know what she was doing; scissors in one hand and electric shaver in the other.
But I became less impressed real fast. My hair was long at the time so, I will give
her a bit of a break but I ended up crying during the shaving. Not because I was
getting it cut off, because with every pass of the razor she was tugging on my hair
as if she was ripping it out; it hurt. When she was done all I could do was laugh,
not because I was happy, but because she was the worst barber I had ever
encountered. I looked in the mirror and let out a big “whoa,” I looked so different
now, but I had a good shaped head….I was glad of that at least.

I had taken both of the anti-nausea pills, like before but they were not working
any longer. I began to think that the super bald kid in the mirror wasn’t as strong
as he had originally thought. By that time I had bottomed out on the anti-nausea
pills, and was curious as to what additional medication I could be given. Me, my
mom and my dad were sitting in my hospital room when my nurse came by and
asked me if I would like to try a new medicine. I was all gung-ho for it until I heard
17
what it was derived from….marijuana, pot, the cheeba. I was afraid how people
would look at me if I took this pot drug. After a few minutes of me hymning and
hawing, my dad just said to me, “Take the damn pill already.” I grabbed the pill,
filled up a glass of water and took the pill just to shut him up.

It was funny too because what seemed like a minute or two later, both my
parents looked at me and asked, “how do you feel?” I looked right back at them
and said, “you know its only been one or two minutes, right?” We all chuckled,
but when the pills effects kicked in it was surprising. Instead of curling up in my
bed grasping my stomach in pain, I didn’t feel sick any longer and I was hungry!
Within the next 20 minutes I ate a whole loaf of toasted bread. Finally I felt
comfortable with the chemo I was getting and that was fine with me. I had never
been around the plant marijuana, or known it full affects, but found out soon
enough. Within a couple of minutes instead of upchucking my lunch, I asked my
mom for some more food. For the first time I asked for food instead of being told
by one of my parents to EAT! I tried the hospital food again, but it was just so
bad, I couldn’t do it. I gave it to my dad and even he wouldn’t eat it. That said a
lot because I had only known him as a garberator; he ate everything. After the
visiting hours were over, he gave me a hug and told me everything would be okay.
They were just words but they comforted me none the less.

I don’t want to seem cocky but I think you have to be in these situations. I
wanted to feel as though nothing could touch me and if the chemo couldn’t take
me out, then nothing could. However as time went on, I began to feel a little
guilty because that cute little five year old boy in the bed next to me was not. I
don’t know if his parents didn’t want him to take the pill, or if he was just too
young. But I felt bad because he was feeling bad. I took comfort though that we
were both in the best place that could take away such pain.

18
For the next few days while taking that anti-nausea pill, the days just seemed to
get shorter or, at least that’s what it felt like because I was mainly just sleeping. I
didn’t have a sense of time, I was merely on autopilot. My mom wanted me to try
and flush out of my system as much chemo as I could. She was giving me water
and juices which caused me to run to the bathroom every 10 minutes. At the
time I figured there might be some magic elixir that could rid me of all of these
symptoms. But I imagine if there was, the parents of sick kids would have given
their left arm to see their sick kids get better. As I sat there, I had to get rid of the
negative feelings I was experiencing because they were not helping me or anyone
else. I figured they would only hurt me. The last day inside came and I
remembered the fluids I was getting then were only to cleanse my system. It
sounded a bit odd when they first told us that but, I just tried to forget about
where we were and went to sleep.

When that first in patient round was over, I can remember getting out and not
feeling too bad. I was kind of surprised how my body was tolerating all the
chemo. Though my body was feeling fine, my mental state was a mess. In the
back of my mind I always had doubts if I would make it. When we were at home
during those weeks, I would be looking into nothing at times, when my mom saw
that look she could tell that I was frightened. She told me something that gave
me a great sense of comfort, she said she would never leave my side during all of
this. I expected her to say something like that but, what I didn’t expect was how I
would react; I broke down and sobbed like a baby. I took comfort in the fact that
if she wasn’t going to give up on me, I was damned sure that I wouldn’t.

When we were at home people would ask me, “How you could do it.” How could
I keep going after such a diagnosis? I would just say, “What else could I do, give
up?” Then I would tell em’ that I always had my ‘Emotional pit crew’ by my side
keepin’ a smile on my face. They would look back at me with looks on theirs,
unable to relate to how I was dealing with everything. But I was glad because in
order for them to be able to they would’ve had to have been in the same
position. My mom this time away from the hospital my mom gave me a bit more
freedom because of how I was feeling, or maybe because of how I wasn’t feeling;
sickly. I could hang around with my friends a bit more but as a compromise ‘The
19
warden’ said that we should just hang around our house. I suppose it was a way
to keep an eye on me without keeping an eye on me, if that makes any sense?

During my third round of treatment an unusual feeling came over me, I felt as
though I wouldn’t let anything touch me. Regardless of what I was going through,
I would not let anything change that. I felt like I needed to let my family know I
was winning. It was a give and take kind of thing with us, I tried to be tough in all
aspects of my treatment and in turn they would be tough for me with their
support. In the three week breaks we had away from the hospital, I saw the gift
certificates my mom got from her friends at work for my favorite restaurant.
Honestly just the thought of being there made the fight a little easier. It’s funny
that in the most serious of circumstances that something as little as a gift card to
your favorite restaurant can make such a difference.

Within the next couple of months every day just seemed to meld together. I
didn’t want to think about whether I was going for an inpatient or outpatient
treatment. I suppose I had my mind set on getting past everything and wasn’t too
worried about the details. It was like that until about one or two weeks before
the final inpatient chemo infusion. I was going in for a test, which one I didn’t
know but when we got to that part of the hospital; I was feeling good and getting
all psyched up. But all of a sudden, things went black. The next thing I knew, I
was on the third floor. The third ventriculostomy (That surgery to get rid of the
excess fluid in my brain) grew over causing fluid and pressure to be there again. I
would have to have another surgery. One of my doctors told me that my body
was too “healthy.” I just grinned then shook my head, looking at her and said,
“Well at least I’m in good shape!” She looked back at me with a grin and told me
that that the final treatment would be delayed by three weeks. I didn’t think too
much about the break in treatment, in fact I was kind of glad for the delay.

Back at home I spent my time lying in my bed “recovering,” as I said to anyone

who would check up on me. Most of that time was simply spent wondering when
this would be over. My mom would tell me that I would have the extra time to
get healthier and again I was planted in front of the TV and force to drink my
20
mom’s vegetable and fruit juices. My mom was trying to bulk me up for the final
days of treatment, but at a certain point, I felt like I would explode from all the
food she was feeding me.

Well time passed as it does and the days approaching my final treatment were
being realized. I was both glad and hesitant of that fact but I was a little
disappointed that I would the end of treatment had been delayed a month.
Those final days went by slowly and it pissed me off, waiting for an end to all of
this. My family told me it was a little blessing that I had some extra time prior to
the final treatment but I thought, a blessing for whom? So what, I had those few
extra weeks away from the hospital, for me that extra time simply increased the
sentence I was serving.

Though I didn’t do too much with my time away from the hospital, I came to
appreciate it because I wasn’t fighting for my life. Soon after though, that time
came to an end and I was staring that six final days of treatment right in the face.
For some reason or another, I was a more scared than I had been with the other
rounds. The chemo would be stronger and I was trying not to let that fear take a
hold of me because it would be the end of the chemo treatment. And just knew I
was as sure as anything, I wouldn’t let this disease take a hold of me now.

I don’t know why but it seemed as though that round took longer than the rest of
them. I would simply look at the clock in my room and be completely unaware of
what was being said by my mom or anyone else. I was simply waiting for this
nightmare I was living to be over. A few days later, when the treatment was
done, I only had two steps to go, a brain surgery and radiation therapy that would
begin in January. By that point I had already been through so much, so when I
was reminded of those facts, I said, “bring it on!”

21
CHAPTER 3– THE HOME STRETCH (PART ONE)

The chemo treatment was over. Next up: brain surgery and full head/spine
radiation. It made me somewhat anxious, but honestly, I kept those feelings to
myself. We met with the surgeon who would be doing what seemed like an
impossible job of removing the tumor. When I asked him about the possibility of
being in a wheelchair or worse, my parents both looked at me with terror in their
eyes. He plainly told me that, “Yes there was one,” but he would do the best job
he could do to prevent that from happening. To hear that took some of the
anxiety away I was feeling prior to the surgery. After the meeting with the
surgeon, my parents told the oncologist what I had asked. She just grinned and
said, “Well I guess that’s Steven for you,” and we all had a little chuckle.

The day of my surgery arrived and my whole family was with me. I was handed a
gown to change into in preparation for the surgery. We were talking about stuff,
anything really, that had nothing to do with the operation that I would be taking
place. Eventually my name was called by one of the nurses, it was time for me to
go into the operating room (OR). I gave all my family an embrace as though it
might be the last one and I almost didn’t want to go but knew I didn’t really have
a choice. I was carted down the hall in the bed I was in. I asked the nurse that
was taking me down if my mom was allowed to come with me. She said it would
be alright. My mom held my hand all the way to there, which didn’t surprise me.

When we got down there everyone was wearing hospital gowns and masks on
their faces. I felt like an alien about to get operated on to reveal all of my secrets
and I wanted to give them up but just didn’t know what they wanted to know. It
was amusing to pretend but that feeling quickly. I was holding my mom’s had
tight when the nurse started to put the IV into my hand. My mom almost fainted
when it was put in because when the nurse went under my skin a big stream of
blood shot out. She was then given a seat to keep from fainting right before I
was handed a mask and then, all at once it was placed over my head while being
told to count down from ten. I can remember barely making it down to seven,
and then I was out for the count. My mom told me that she kissed me on the
head then left in tears as she departed the O.R.

22
I woke up what seemed to be at the time the worst hangover ever. I say,
“Seemed to be” because I had never had a hangover ever in my life…but I sure felt
awful. I was in the ICU (intensive care unit) and it seemed to me like it was only a
couple of minutes that I had seen my mom almost faint when she saw the blood; I
had a little chuckle. But apparently I had been in surgery for almost nine hours.
Following those initial feeling of pain when I woke up, I started to notice I was
feeling hungry. I asked the nurse if she could get me a steak, I was so used to
having those gift cards that my mom got from all her friends at work, and was
wondering when I could get out of there to get a bite to eat. My nurse looked at
me with a big smile and said I could have a steak once I was out of there. I
grinned and closed my eyes, not thinking about what had just happened, and a
couple of hours later I woke up in the regular recovery unit.

Then my mom reminded me that we were all going to meet with another doctor
within the next couple of days to discuss those radiation treatments. I recovered
a bit more for a day or so in the hospital then we got to go home.

It was almost New Years and my whole family went to my favorite restaurant to
grab a bite to eat to celebrate what I had been able to get through so far. We sat
around the table as though everything was normal; it was nice not thinking about
all the struggles and fight I had just been through, or the ones that were on the
horizon. I was a bit cocky when thinking about everything because I hadn’t felt
too bad from what had been going on. My family smiled at me when I said that;
we all knew I just had a bit more to get through. I wanted to stay in that moment
forever but like all moments though, it passed. My papa picked up the cheque
and we left the restaurant. Then Christmas came as well as New Years but there
wasn’t much celebrating on my part at least because there was still a huge hurdle
to jump over.

Then January of 2008 came and I was just about to get the radiation. I didn’t
think too much of it, I mean by that point I already had so much medicine running
through my body, I could have opened up a walk in clinic. My family and I were
about to meet with the radiologist again to discuss the treatment plan. I wasn’t
too worried but was a bit anxious about starting something new. When the

23
doctor came into the room she was this little unassuming English lady that you
would never have thought to see her in the radiation unit. Although, considering I
had never met anyone who was in this field of work, I really didn’t know what
that type of person would like; one should never assume. It was pretty intense
meeting her, finding out what her plan was for my brain. We were told that I
would be receiving 3500 gama-rays to my brain, as well as to my entire head and
spine. Her hope was that the radiation would kill all cells that may remain in my
body. It was a lot to take in at the time; I just sat there without giving her a
response for a minute or two.

After thinking about the amount of radiation that she recommended, I looked at
her a said, “that’s too much.” I mean, I didn’t know and still don’t know, what
that amount of radiation would do to my body. But I knew that I wasn’t
comfortable with the amount she was recommending. I told the doctor my
concerns with the amounts and before she could respond with her thoughts, I got
up then told my family we were leaving. They looked back at me with shock and
asked me if I were sure. I didn’t say anything to them and told the doctor that I
would come back when I was comfortable with a smaller amount of treatment.
As we were leaving she reminded me that I was on a study and my doctors
wanted me to stay on the scheduled that had been planned for me. I replied,
“well, I guess I’m getting off of it.” We walked out of her office and when I looked
at my family, I saw their eyes filled with both pride and confusion. Thinking about
it now, I was just concerned about what that amount of radiation she wanted to
give would do to me. The whole situation just freaked me out.

A few days later the radiologist’s office called us back to schedule another
meeting. We were informed that I would be outside of the study, to be honest
though I didn’t really care. I was just too uncomfortable with the amount of
radiation the study had planned out for me. We were informed that although I
was off the study at Children’s Hospital, they still wanted to use my information
as it may be helpful for another patient in the future. I thought about it, if my
information could help another patient, would let them use it for sure!…I was a
bit unhappy that they wouldn’t be using my name because I wanted people to
know who I was and how strong my family is.
24
Well, not too long after we arrived and were told about the new amount I was
going to get it all began. This new dose that I would be receiving wasn’t too much
different than what had been originally planned but, I felt a little more
comfortable with it than the last amount…..and I was fine with that.

We walked in and all had smiles on our faces, as we sat there in the waiting room
I can remember hearing my name called, when it was I hopped up then said, “Yea,
that’s me!” I was told by one of the technicians that before everything could
begin I would have to get a mask fitted to keep me in place during all of the
treatments. This was so I would be able to be in the same spot every time they
‘zapped’ me. A strange feeling of comfort came over me when they told me that
just because it felt like everything was going right…..amidst all of that wrong. But
when I was laying there and the mask was shaping over my head it dawned on me
that this was yet another battle that was going to happen. When the mask was
done they let it cool for a couple of minutes and then I got inked. It wasn’t much
of a tattoo, just a small dot on the back of my neck as an extra little fail-safe to
keep me in line with where I needed to be treated. I felt like I was now apart of
this little club, like I would forever be marked by that little membership tattoo.

I think it had a little to do with the anti-nausea pill that I took the hour before but,
I was kind of giddy. At that moment the memories of what I got through were
with me and really I felt unstoppable. The technicians and I then went into a
room where the treatment would begin. All at once I was confronted by this scary
piece of machinery which would be doing all of the treatments. It felt as though
once I was hooked in underneath it that I was in a sci-fi movie….I first expected
aliens to come in and ask me questions about the human race. As I stood there
looking at it one of the nurses calmly grabbed my hand while saying that there
was nothing to be worried about. A comment like that may not seem like much
but slowly my hands began to unclench as I hopped up on the bed……table……
treatment area. As I laid there she as well as another nurse hooked the mask into
the table and it had a little mouth-guard in it so when everything was ready to
begin they asked if I was ready and I gave em’ the thumbs up.

25
They left and as the door closed I heard three distinct rings I guess to signify that
the door was closed then it all began. All of the sudden right above me a laser got
me lined up, then the zaps started happening. As they buzzed over me I felt
nothing really other than tired, when that ‘buzzing’ was done those technicians
came back in aligned me with the lasers again and took off. One more time that
day I was treated and after I was handed a little pink sheet that had the rest of my
appointment times on it and we were off.

After the first day it was odd, I wasn’t really there….I mean, my body was but I
didn’t want to think about what was going on so, my mind was somewhere else
entirely. As the week went on luckily at least I didn’t have too much else on it
because I was on that anti-nausea pill I like so much and that treatment didn’t
leave me feeling nauseous like we had heard it might. What I did do the next day
was something and be a way that might seem a little strange, I was giddy. I
wanted to keep that same way of thinking throughout the rest of those days. As
the week went on I was doing pretty good and at the end of it after giving me a
hug following the treatment my mom said something to me which really stuck in
my mind. That I was invincible! They’re just words but, they helped me perk up
when the only thing I wanted to do was lie down. When we got home, I marked
off that day in the calendar which was hanging on the fridge and let out a big sigh
of relief. The first week of those treatments was the toughest for me I think, I
know it seems odd that the first one was the toughest but, I wasn’t right with
what was happening.

Moving forwards I didn’t want to do anything to jynx my good luck so over the
following weeks I sort of put my body on auto-pilot and tried to feel as I did in the
first one. Everything for me was kind of strange but, it was working and I didn’t
want to change that so I kept at it. The rest of those treatments in the month
were just kind of a blur, I would wake up go and get zapped then return home and
sleep. Some people say they find strength upon looking in some spiritual books
well, who is anyone really to say you should find it within something else but that
wasn’t how I did it. I found ‘it’ by looking into my family’s faces, their hopes as
well as their belief in me never changed. Upon thinking about it there was no way
I could change my determination either.
26
I woke up from the daze I was in when the final week of my treatment began and
the feelings of happiness came over me because it would only be a four day week
of getting those awful ‘zaps’. Unlike before I wasn’t just smiles….I roared with
laughter, I wanted to let everybody know that I hadn’t been effected by those
scans the ways my doctor told us. Later when the nurse called my name though
that roar toned down a little and I made my way in to get one of the final
treatments. After that day it felt as though time was going by so slowly and it was
taking so long for those last three to be over, we didn’t know exactly how the
treatment was going but, sure as anything we refused to change our attitude. I
got the next two on the following days and then all at once it was the final
treatment inside that frightening place. Though, if I am being a little pompous I
knew I would make it to then and although some of our thoughts on the subject
may have been a bit dicey at first at that time everyone who was around felt as I
did.

I got those last treatments then after, thanked the technicians and then they
handed me the mask I had been wearing throughout all of those treatments. At
first I was a bit hesitant about taking it because of any possible remnant radiation
that might be on it, when I said that they just grinned and told me there was
nothing to worry about and I could have it if I wanted. Then I just didn’t want to
take it because of the bad memories it would bring about when looking at it but,
my mom told me they would only be bad if I thought of them that way. I strolled
out of there with my family all at my side and walked like I was hot shit. All that
was to happen now was I would be getting a scan of my head to see if any of the
tumor remained. It was scheduled for three weeks from that day to let any of the
swelling of my brain go down so they could get a clearer picture. We didn’t think
to much of it and proceeded to go to the van.

When we all got home each of us came up with ideas on how to get rid of the
mask. After discussing all of them for a while we came up with the idea to run it
over with my mom’s car. She and I hopped into her car, my mom revved the
engine a bit and then we ran it over smashing it into a million pieces. We got out,
picked up the pieces on the driveway and I felt as though I was finally done.

27
My thoughts were racing in those three weeks of wait until we received the call to
come back down to the hospital and get the news. We all squeezed into the tiny
office my doctor was in and then she told us. It wasn’t necessarily bad news
though, it wasn’t all that good either. The tumor in my head ---which I called
“Clyde” for some reason, it wasn’t gone. I walked in there with my chest puffed
up and all at once I felt all of the air in me just escape.

My doctor told us all that it wasn’t exactly bad news even though we didn’t think
that at the time. She explained that there was a good possibility all of those
chemo treatments as well as those radiation ‘zaps’ killed all of the cancer cells
and what remained was just a benign mass. I tried to see the good side of the
whole situation, I really did but I couldn’t help but break down in tears. Then I was
let know that I would have a check-up scan every three months, then every six
and so on for the rest of my life to check in on what remained. I didn’t really know
how to feel, I didn’t want to cry but a celebration was really out of the question. It
wasn’t growing but it wasn’t gone, everything was all up to chance now.

Chapter 4: Moving on……slowly

28
As kind of restart to my life a few days went by and I was picked up by my dad. He
told me that we would be going out to eat as well as celebrate at my favorite
restaurant but, first he wanted to go and see a guy who was selling a phone he
wanted to buy. I didn’t think too much of it I was primarily focused on the big
steak I would have later that night. When we arrived at the community centre he
said the guy was at my dad asked me to come in and have a look at it.

When we walked into the community centre and walked into the rec-room I
heard a big, “Surprise!” then jumped up in the air. The rest of my family was there
as well as my friends from school along with some coaches and players from the
soccer teams I was on before everything. I was told that everyone was there for
me, they wanted to give congratulations on makin’ it past everything. All of those
emotions I had stored away came up all at once and I was just trying to keep the
tears of joy in. I wasn’t glad that I went through everything in those past months
to let this night be possible but, was glad that we were having that night to finally
put an end to everything.

As the night went on I was talking with one of my cousin’s and he asked what was
going to be next for me. At first I didn’t have any words to reply with, I was just so
used to being a patient that the idea of what the future might hold in store wasn’t
one I really thought about. After those first moments of hesitation passed I
replied and said, “I am finally going to be a normal kid again and go to school”
with a proud look on my face. We both kind of chuckled at the idea of being
“normal” and hugged him while telling him that everything was finally over. We
didn’t have too much more time to talk because all around there were people
coming over to congratulate me. When I was talking with one of my friends dads
all at once everyone was clinking their glasses like at a wedding wanting me to get
up on stage and speak about everything. I didn’t get it at first but, then I heard,
“Speech, speech, speech” called out in unison.

When I got up there I didn’t really know what to say but in all honesty though,
that didn’t really matter because within getting five words out I broke down in
tears. I mumbled a few to one of my mom’s friend’s who was up on stage with me
to tell everyone and then my dad came up, grabbed me and gave me a hug that

29
made me feel as though everything was alright now. Then, after what seemed to
be an eternity I let go of him and wiped away the tears from my eyes then went
back to talking with my friends. They all teased me a little for being all weepy up
on stage and we just went about discussing regular things. The night wound
down and I had talked to about everyone I didn’t want it to end because all of
that positivity, love and all of those other gooey emotions were in the air. But, it
did and when we arrived back home I grabbed my mom and just hugged her. She
embraced me and said that she loved me but, not to forget about one person. I
didn’t know who she was going to say but, jokingly she reminded me that the
home-bound teacher was going to come in the following week to get me all
caught up with the schooling I missed. At that point I forgot about the teacher
which would be coming to help me get on with my life or, school life at least. The
teacher came to the hospital before when I was getting those treatments but I
wasn’t in any shape to be taught as my mom would tell her and upon looking at
me I suppose I was sprawled out on the bed so the lessons were put off until now.

I was a few months behind and my teacher wanted to get me started as soon as
possible so over the next few months she was over at my house every day. When
she was teaching me I can remember asking her in kind of a desperate attempt to
have less work if she could slow down but, she never did. It was kind of nice when
I was caught up by Spring break because after I would be going to school without
having any of those lessons. Because it was my grade eight year things weren’t
too hectic and thankfully I had a spare block to get my work done as well. It was
odd at first but, as time went on I started to feel like an ordinary kid.

There were a few friends who I knew from elementary school but, I was able to
make some new ones as well and that made me happy. I finally got to be a normal
kid…….just with a few extra scars then everyone else had. Finding a girlfriend
wasn’t really on the top of my priorities list because I didn’t want to have any
extra stress or, that is what I would tell everyone at least. Things kind of went on
for me like that in the first year back. I have heard that a lot of people “find
themselves” in the first year of high school but I was just looking to find my
bearings.

30
When the school year ended I mostly spent the Summer hanging out with my
friends and sitting by the pool. A blur kind of came into my memory when
thinking about everything I went through in the previous year. I can’t say that I
rebelled but won’t say that I was a saint. Like a lot of kid’s my age I had my first
taste of marihuana……outside of the hospital. Some say that it is some sort of
gateway drug to worse things, in response I simply say, “Ha!”. It is something that
I smoked and simply had a good time with friends……as well as something that
helped me fight against the side-effects from those treatments I got in the past.

That Summer I found out a lot of information about who I was and who I wanted
to be. Some people have told me that some unproven deity helped me to do that
more than anyone or anything else but I just replied and said, “No.” Then, went
on with my life. I am a firm believer in myself as well as reality and no more was
that belief strengthened as I fought that disease not some ‘god’. I have heard that
belief is based on having ‘faith’ in whatever but we all have proof of one person
who is living our lives: ourselves. Over the Summer my friends and I got into a lot
of arguments about that topic but I didn’t want any extra grief in my life so when
it came up again I told them I understood their beliefs though, I didn’t share them
and the days went on.

Moving forwards most of the time I forgot what I went through in that last year, I
say, “most of the time” because although my thoughts were on something else
every so often I would be reminded of those limitations. Whenever people would
play full contact sports I was side-lined because I couldn’t’ damage my brain you
know, any more than it had already been. The Summer came and went then
before I knew it I was back at school. The first day of my grade nine year was a
whole lot different than the one before, I was actually able to start it at the same
time as everybody else. I began to think I was just an ordinary kid…just with a few
little quirks. I still had to get those check up scans every three months but, for the
most part they were the only things that weren’t the same as every other kid my
age. When I came back to school the next day my friends would ask me how it
went and I would reply saying that they found something we had known all
along…..that I was crazy. Everyone would laugh but, I guess it was my way to
make light of the situation I was in.
31
I managed to get a girlfriend that year or as I said, “A girl that was my friend” just
not to get any grief from everyone around me but, it felt good simply to have that
simple life. For the most part everything felt back to normal but when I had P.E.
(Physical Education) I would always notice that I wasn’t as athletic as I was before.
All of that time being fed three times a day by my mom must’ve done something
to my cardio but, in all honesty that was one of the things that least worried me
when considering everything. I didn’t really let it bother me too much if people
looked down their noses at me for whatever reason because so much happened
in the past and I simply didn’t care. Whenever I would struggle in school I would
always remain as positive as possible because it worked before so, I just thought it
would work then. Sometimes it feels hard to find because of the negativity in the
past but when you do it’s as though, ‘it’ was hiding waiting for you to find ‘it’.

That grade nine year at school was pretty uneventful and the Summer it was
pretty routine as well then, right before I was to start my grade ten year in school
I got another M.R.I. scan just to check in on everything. We were all glad too
because this one was the very first six month appointment and it made us feel like
we were over the hump. That was until we got the results back from the scan. It
was July 10th of 2010 the date of the scan was scheduled for so, when that day
came we all piled into the family van and went back down to Children’s Hospital.
When we arrived we all sat and waited then, when my name was called my papa
and I went in to get the scan then after it was done we all waited in the little café
for the appointment where we would be told the results. It seemed like only a
short while we were there and before we all knew it this new unit of the hospital
stared us in the face. We weren’t in oncology like every time prior, we weren’t in
the little office either it was this big room where all of the doctors I had seen
before were in.

My brain surgeon, radiologist and oncologist were all in there along with my
doctor’s resident and nurse. We all sat down and once we were planted in the
seats they proceeded to tell us that a new mass was inside my head, which meant
I would have to undergo yet another form of treatment……Everyone’s jaws

32
dropped that was on our side and all at once they turned back to look at me. My
reaction wasn’t like the one I had the first time, it was amplified by like one
thousand percent, I was irate. Before the doc. could get out any words I stood up
and threw my chair in a fit of rage, I wanted to get out of there for a minute or
two to have a moment alone. Both of my parent then came out after me to try
and calm me down but, I wasn’t listening to either of them. When I became
less…..I don’t even know the word, we all went back into the room to hear the
new treatment plan.

We got told that because this new tumor grew out of the old one they were
certain it was a sarcoma and because it was different they could use relatively the
same kinds of treatment they had the last time only like twice as strong though. If
hearing the treatment plan wasn’t scary enough in addition I would get another
line placed outside of my chest that had two access point so later down the road
they could remove my stem cells then give em’ back. We left again after hearing a
frightening diagnosis acting as zombies.

Then, a few days later we all returned to go through this awful routine again. I got
carted down to the O.R. to receive yet another surgery to have that line placed in
and on my chest then I was off to the races. When it was done I awoke, a nurse
came to the room my mom and I were in then proceeded to tell us how to take
care of that new line. Honestly I wasn’t listening because I was so pissed off about
the situation but thankfully my mom was and when the nurse was done telling
her, she left us alone to get ready for everything. We went home and upon
waking up the next day we all hopped back into the van to go down to the
hospital.

Ch. 5: Off to the races…again.

33
It was hard to think about it, that I would have to start this all over again I mean,
this disease was hard to fight off the first time and now that I knew it was back I
was kind of worried. One of the hardest aspects of the reoccurrence was that
everything was getting back to normal for me and now this disease was taking me
from my world again. The only good part about it was the fact that I would not be
at school for my entire grade eleven year so I was glad of that at least.

When I looked down at the new line stickin’ out of my chest I felt even more like a
weirdo but, got over that feeling pretty fast because I knew it would be there for
the next year and couldn’t do anything about it. Like the first time, I got to play
the whole ‘whoa is me’ card for a short while but my family didn’t let me feel too
depressed about the whole situation for the simple reason that they knew I had
to get focused.

I remember in one of the appointments previous to that day my new doctor told
us if these treatments didn’t work there was basically nothing else they could do.
I remember pretending not to hear those words because I wanted to stay focused
on getting past that medicine. Having tunnel vision in times like these is good
because it helps to keep you focused on one thing, I only heard and saw things
that I wanted to. I never forgot that the only thing I had to do was fight, fight as
hard as I possibly could to get rid of this damn disease…again.

The first day of that second go around was much like the first day of the
treatments in 07’, with some exceptions of course. As well as that I immediately
asked for the “voodoo” anti-nausea drug with cannabis to keep my appetite up
and I was glad, because I was older I got a stronger dose of it. I wasn’t as giddy as I
was the last time though I guess, because I knew it was yet another serious
situation we were all in. Though, I wanted to be as positive as I had been the last
time, some may have thought that I was acting like a cock-eyed optimist but I’d
rather be that then a lifeless chicken.

This time around my mom (My permanent roommate) didn’t treat me like a
broken toy and wanted me to make more of an effort to be more active in
recovery. She encouraged me to go for some more walks around the ward we
were in to not get “rusty”. We had little arguments about it but, eventually I
34
would give in because I knew that she only wanted to help. Don’t you hate it
when you’re on the losing side of an argument? When she was there, even my
nana got into them she would tell me that I might as well go for them because my
mom would just keep hounding me to do so. Whenever we would get back after
our little jaunt’s or to be honest before them too my mom again would be
hounding me to drink so water to, “Flush out what I didn’t need from my body”. I
was back to being a peeing machine because every five minutes I would have to
run with my dancing partner to the washroom.

Luckily, like the last time I didn’t experience too many of those side-effects from
the medicine and I was feeling pretty good considering the situation I was in.
Because of all of the drugs I was on my body just went into sleep mode like it had
the last time and before I knew it the first round was over. Unlike before where I
would just be unhooked from the I.V. pole and go this time, I got unhooked then
my line was flushed and “locked” in order to keep any germs away from it with
Heparin. That was a metallic tasting liquid which would be placed into my line
every night I had away from the hospital by my “rock” (my mom). As a nice little
bonus too whenever I wanted to have a shower we would have to fashion this
little “McGyver” like shield over it to make sure no water and/or germs would
touch.

I did as much as I could in the time I had away from the hospital, I wasn’t angry
that I couldn’t do certain things but, was a little ticked off that I had to be a little
more carful this time away from the hospital because of the new line. However I
was able to shove the disappointment to the side because again my mom got gift
cards from her friends. I was pretty happy but, my mom wasn’t feeling the same
way because whenever I didn’t feel sick the pestering would begin. Like before
eventually she would give in to all of the requests I and we were off with the rest
of my family. Upon arriving there we sat down at the table and it was nice to be
on those breaks because we got to talk about really any other topic we could
come up with. It was that way for a while but eventually the subject would always
change to what was happening. Really it wasn’t too bad because well, I wasn’t
doing that bad but, I would still move the conversation away to a happier piece of
news.
35
As odd as it seems, I was almost glad when the time the next round came because
I knew I did so well in those times. I kept hearing in my head, “You can do it, you
can do it” the day when that second round came. I wasn’t overly optimistic, just
positive and when considering the other way I could’ve been I knew it was the
right choice. The second round came and much like the other one we were feeling
good. Sometimes my thoughts would run all over the place thinking about
everything, although I always had my mom beside me keepin’ my spirits up.
When my family and I were in the hospital whenever my doctor would come by,
we all were on the edge of our seats waiting to hear some bad news but, it never
came. As the round ended I was still there and started to feel better about my
chances to make it through everything.

When it was over, I did mostly the same things as before but eventually the next
round would come and I had to regain my focus.

I first thought that as more time passed by my body would become weaker
because of the beating it was taking but, when thinking about that chance I
couldn’t let it happen….I wouldn’t let it happen. The third round was much the
same as the first one, we packed our bags, headed to the hospital for the day and
I got the treatments then we went home where I would recover for a bit. As odd
as it may read those out-patient treatments were almost little vacations
compared with the other ones. Well, the third one it ended, we all got to take a
break from everything and what seemed like only days the fourth round was
about to begin and I was starting to grow weary of everything. Although I was
tired thankfully the nurses all round always kept our minds off of what was going
on by doing things that would amuse us. For this round it was kind of a special
time in the fact that it was near Halloween, a lot of them were dressed in
different costumes to keep all of the patients as well as our parents amused, if
just for a while. They’d come into all of our rooms dressed in costumes and make
us laugh with their antics scaring one another and dancing around the ward. They
almost helped me forget why I was there in the first place…..almost.

Any time my roommates would talk with their doctors, whether it would be good
news or bad I would grab my dancing partner and head out of the room with my

36
mom to give them some privacy. All of the times we were there I didn’t really talk
with them, not about bad or good news but anything really because I didn’t want
to hear any of the bad news on their side and they probably didn’t want to hear
any of my news as well.

I became the patient and was good at playing my role, I would always give it my
all while being told by everyone around I was doing good. It sort of became my
identity: the forever fighter. People who thought that of me at the time weren’t
wrong but, I knew that I would be so much more when this all was over. It was
almost like another reason to not only fight but to make it past this disease.

I always wanted to keep that attitude up but there were a few times where
throwing in the towel seemed like the best option. But, when thinking about the
treatments that happened and the few that were left I was determined as ever
not to give up. Though, I hadn’t started celebrating yet because there was still
two rounds of treatment to go, two brain surgeries to receive and a month of
even more intensive chemo to get through. Before that could happen though
right as I was to start the final round of treatment as sort of a kick in the crotch
the line which was in my chest was mis-aligned and I began to think the worst
but, we were told that if it wasn’t off too much one of my nurses could just move
it around a bit with her hands over my chest. When I was told that I’m not going
to lie, I was a bit frightened nevertheless one of my nurses placed her hands on
my chest for a second, told me to take a deep breath and moved it a bit. In all
honesty I was a bit disappointed it wasn’t more dis-aligned because it would’ve
meant that my final round of treatment would be delayed. Nevertheless it got put
back into place and I went into that time with my head held high. When those
days inside ended my line was flushed then locked and we were to await the day
where we would meet with the surgeon.

Well eventually it came and we met with him again, he gave us an overview of
what was going to be happening then told us to go home to prepare for the
triumph. His attitude hadn’t changed from the first time we met back in 07’ and I
was so glad about that. The days before the first of those surgeries were much
like the days before everything else, I was planted in my bed and fed three times

37
a day but, these times it was more comforting than annoying because I was a bit
more frightened. What comforted me was what my surgeon told us, he was going
to do the best job he possibly could to rid me of these damn tumors once and for
all, I started to feel pumped up thinking everything would be over soon.

It may seem odd but, I was comforted by the idea if one surgery went well then it
stands to reason the other would be the same also. We didn’t even let the
thoughts of the other possibility come into our minds. Then all at once, the day
came when I would have the first of those two surgeries and we all went back to
the hospital together. When I say, “we” I mean my whole family came down, my
dads side of the family as well as my mom’s….again they told me they would wait
in the room where family’s sat praying for a good outcome. They felt like they
needed to do that more than ever because these surgeries would be to remove
everything and not leave a little bit in like the last time so, they would be a bit
more dangerous.

I spoke with all of them before it was to begin and they told me that they were all
proud of me for making it this far but they knew I would make it even further.
Then, one of my surgeon’s nurses came in to take me down and almost in unison I
heard everyone take a deep breath. She asked me if they were going to be okay
and kind of as a joke I replied with the words, “it was undetermined right now”.
Her and I both chuckled a little and we were off.

Ch. 6/ The biggest ones yet

When we arrived in the operating room I had a word with my surgeon for a
moment before he was going to be cutting into me. I just wanted to find out what
he thought about the whole situation we were in. It may not have been the most

38
appropriate time to ask but it was a question I needed to know the answer to. He
told me very plainly that he thought it was an unfortunate situation but he would
do everything in his power to make the story I was in have a happy ending. We
gave each other a thumbs up then, I was handed a mask with the knock out gas in
it and took a few breaths in.

I woke up ten hours later in the I.C.U. again and when the nurse that was there
saw my eyes open she asked how I was doing. I didn’t reply at first but, didn’t
want her to think anything was the matter and lifted my hands to give her the
thumbs up! After doing that she checked me out and I closed my eyes. Upon
opening them back up I was in a different part of the hospital, the regular
recovery unit. I looked around with the double-vision I usually had after these
surgeries and heard my family all talking around me about their thoughts
regarding how the surgery went. There was a pause in all of talking when I said to
them all, “Hey, how are you guys doin’?” They all looked back at me with smile on
their faces proud of what I had just been through. I was happy too but, didn’t
forget that I still had a few hurdles to jump over and stayed “grounded”. They all
congratulated me and a couple of days later I was out of there again to await the
next one.

It still seemed odd that I was going to have another one so close to that last one I
mean, my double-vision hadn’t corrected itself yet. But the next operation was to
remove the new part of the tumor, the sarcoma. We were told they would do
that because they wanted no more of either of the masses just so there was no
possibility of any more cancer popping up.

I didn’t really have a choice one way or the other by that point because I already
had one ten hour surgery so, what harm in there with having another? When my
mom talked about the next one I just kind of nodded my head and went back to
recovering as much as I could (in that little two week break I had before the next
surgery.) I knew my thoughts about everything but, I had no idea what my family
was thinkin’ about the plan. In the time before the following one it felt shorter
than any other and sure enough eventually it ended then, we were all back to get
the following one…..well, that’s what I was there for my family came to support

39
me which was good for me at least because I was a little worried that this vision
problem hadn’t gone away yet. Regardless of that or any doubts we had, they
didn’t really matter because this surgery was going to happen for sure.

Soon after we arrived back to the hospital and all went to wait until one of my
surgeon’s nurses took me down. When they were ready to take me my mom
came and walked down to the O.R. with me like she always did and told me that
everything would go great, just like all of the times before. We arrived my mom
gave me a kiss, left and then I greeted my surgeon. When I saw him, I jokingly said
that I was tired of seeing him and he said the same thing in reply.

As it had been in the previous surgeries the mask with the knock out gas was
placed over my face and I was told to count down from ten. A couple of seconds
after breathin’ in the good stuff, I was out like a light. I woke back up in the
intensive care unit of the hospital where I had been before and lifted my hands in
the air as kind of a signal to the nurse who was there that I made it. But, upon
seeing me she thought something completely different and asked me if anything
was wrong, I jokingly said everything was fine then asked her for a steak. Like all
of the times before that I closed my eyes and woke up in another part of the
hospital completely. Upon opening them back up I saw my mom as well as the
rest of my family all in the little room I was in and when my eyes opened almost in
unison they asked, “How do you feel?” I was happy for the most part but when
my doctor came in I got less happy real fast. He went on to tell us that everything
went well but after I recovered from this I would have to go in for the month of
chemotherapy. He went on to tell us the good side to it where I would probably
only be aware of everything which was going on for the first couple of days and
the last few because the medicine was so strong. It wasn’t that good but, I saw it
that way because I wanted to find some positivity somewhere.

Well, like every other time after surgery I recovered for a couple days at the
hospital and was sent home to await the next step. This one was going to be that
big round of treatment, when we returned just my parents and I went down to
meet with the doctor who said that for the most part he didn’t want anyone to
come in and visit because of any potential germs they might spread. So, I gave my

40
dad a hug then my mom and I walked into a room that was sealed off from any
germs. She placed the clothes she packed down and before everything was to
start asked me how I felt about everything. I honestly didn’t know what words I
would reply with because everything was so daunting and new. Though, right
before the nurse came in with the first bag of treatment I knew how I felt:
exhausted.

We had some idea of the fact that this medicine would be stronger but, had no
clue it would be this strong. I spent the next week getting the treatments both in
and out of consciousness and after it was done I would be hooked up to those
stem cells they took from me all of those months ago. I say that because it was
what I remember being told about what was going to happen because those next
three weeks I don’t even remember a day. Luckily I knew that my body could
tolerate those kinds of medicine because the only time I got sick before was when
my grandparents brought us a big bag of tacos and I ate them all. Really there are
only around five days I can remember from all of that treatment, the first three
and the last two but, it was probably a good thing. When I woke up from the
trance I was in, those final two days went by as slow as molasses.

Nevertheless, they ended and we got out. I didn’t really know what to think of
everything that went on because it all happened so quick but, was told when we
met with my doctor later that he won some sort of bet they had regarding my
time inside. At first I was kind of mad that the nursing staff and some of the
doctors did that but when he told me, they made it because they all ‘knew’ I
would make it through I felt very proud.

As we left, I wiped the tears away from my face and lifted my hands feeling so
proud everything was done. At first I couldn’t really believe it because the battle
that we were in for the past four years was done. Well not entirely, I still had an
appointment or two to have a scan done of my head and to meet with my doctor
41
to discuss it but I was just so relieved. When we got home my mom and I were
met by the rest of my family’s wondering eyes. They asked a bunch of questions
but I didn’t hear them or have to answer them so, I just went to bed, it was my
mom’s job….to tell them what we didn’t know.

Within the next few days we all went back to Children’s for me to get a scan of my
brain as well as talk about the results with my doctor, when it was done we all
piled into his office to hear the good news. Well yet again it wasn’t great news
although, it wasn’t terrible either. We were told that there was still a little bit of
the mass inside my head but from what my doc. as well as the others could tell it
was just scar tissue…….again. After he told us that I thanked him for everything,
shook his hand and walked out of the office with the rest of my family.

I hope that shake meant as much to him as it did to me because I felt so damn
proud of everything I was able to overcome and I wanted him to feel that as well.

Ch: 7: Starting over 2.0

I didn’t have the same kind of celebration as I did the first time for the simple
reason that then, I don’t think any of my family wanted to remember all of those
days. I was lucky that I didn’t miss anything too important in my grade ten year at

42
school because I had a lot of credits to work to get. In my grade eleven year I took
regular classes during the day at high school and then went to a night school to
work towards getting the credits for the lessons I missed. It made me a bit angry
but, there was nothing that could be done so, I just went ahead with them.

The feelings of happiness came over me when I just got to do regular things that
someone my age would do like go to school and hang out with friends rather than
see the inside of a hospital room.

It was an overwhelming sense of pride that came over me when thinking about
everything that happened in the years previous and I was going to make sure to
make the best of this opportunity. Although I tried to not have things this way
throughout the year whenever I would have an appointment at the hospital and
within the next day, everyone would ask me how it went. It is understandable
that they would ask because I had a bald head and wore glasses with one eye
blacked-out like a patch because those surgeries left me with double-visionbut.
That wasn’t really too big of an issue for me because if people didn’t accept who
they saw I didn’t care but, if they asked I would never shy away from telling them
the reasons.

I won’t say that life wasn’t tough for me because it was but I wasn’t going to let
what happened define me. I understand that what I said was kind of an overused
statement from the people who have gone through something in their lives but
that is probably because it is so important to remember. Even though it wasn’t
like this all of the sometimes it felt as though everyone else’s lives were running
so smoothly and mine was all over the place. As the school year went on you’d
think I would be happy to get those days off to get check-up’s but I felt completely
different about them. My family would all try to calm me down before them but
there was nothing they could do about it, that anxiety never went away. As each
appointment I went to went fine I would let out a big sigh of relief and await over
the next four months to have another scan. It was four months in between check-
up’s because I always remembered that on the very first six month appointment I
was told I had another tumor and I didn’t want to live in that jynx. Call it a
superstition, call it whatever you want but it brought me some comfort, that was

43
the little bubble I was in. I didn’t know if it would or could pop but, sure as
anything I wasn’t going to make it happen.

I always tried to remember to look on the bright side when moving forwards. For
the most part I just wanted to try and forget about all that went on then because
those memories were unpleasant, to say the least. It worked for the most part
but, school was a bit of a chore because of my memory or, I should say my lack of
it. There isn’t too much else to say about that grade eleven year because like
before in grade eight, this year was a rebuilding year for me.

Going into the final year at high school I was very content with what I had
accomplished so far but, knew more could be done. That year I did regular
schooling on day one’s but on day two’s I took a foods program because I wanted
to have a trade to work in after high school. It was sort of a dream too because as
much as I would try not to let all of those surgeries effect me they did, specifically
with my memory. Not all of the testing at both schools but most of them I would
always struggle with remembering what the teachers said in the lessons they
would give. It really frustrated me though, I managed to pass at both schools and
my future was ahead of me, the world was my oyster…..whatever saying that
seems appropriate I wanted to believe.

Before I was to start at anything as kind of a graduation present slash getting past
cancer present my grandparents took me on a trip all around Europe. It was
awesome, we went to Scotland, Italy and Belgium for three months……it felt even
more that all that went on in the past was behind me. Like all vacations though,
after those months travelling abroad I had to snap back into reality and find
myself a job. A thought may come into your minds that when someone deals with
trauma that afterwards they are scarred from it (Mentally) and that someone in
my position might just want to or only be able to get one just to have one to
check that off my list. Like I was some pity case well, if you had one as such you
would be wrong.

Thankfully the foods program I took in my senior year at high school came in
handy so, I got to it finding a job. The skytrain took me down to Vancouver and I
started going to interviews for one. Some of the places said they would like
44
another employee but because I didn’t have the proper schooling they said they
couldn’t hire me. You might think that put a hold on what I wanted to do but
actually it was the complete opposite. Eventually after going to many different
restaurants a fine Italian one took me on as an employee. I was so proud of
myself because I started to realize what happened in the past were just those
(past events) and I had the power to move on from them. When I walked in the
first day the feelings of pride I was experiencing were unlike any others, they
weren’t the same as when I got past the diseases and I didn’t have to be helped
out by any other person to get the job.

Ch: 8 A different life

When I went to the restaurant for that first day I didn’t know how any of my
coworkers would react upon seeing me. Well, if they didn’t like or understand
who they saw I wasn’t opposed to telling them if they asked…eventually they did

45
and I did as well. I think because of that I was able to be just a regular employee
to them and damn, I was happy about that.

I finally felt like I was able to move on from everything that went on in the past
and could get started living life. An epiphany sort of came my way when I thought
about it too and I realized that I was the only one would do something in my life.
Life went on pretty good then, I went to work and felt as though everything was
getting back to normal, it was nice. Then one day, everything changed when I was
preparing a dish that I always did. This time though it had a few little changes in
the recipe and for some reason or another I simply couldn’t get the hang of it.
Over the next week or so, I would continue to screw it up and eventually the task
of preparing that casserole was given to someone else. It felt like somebody just
punched me in the stomach when I saw another person preparing that dish and
because I was being petty and/or stubborn I handed in my resignation quitting
that week. As sort of a bit of comfort to me I would think about what went on in
my past and say, “It was harder”. When I got home I felt awful at first but, after
that little pity party I had I thought about the options that were left to choose
from.

I was sitting at home quietly one day after and was asked by my mom what had
been the matter with the job. Simply to make myself feel a little better as well as
have her views on me not change I just said, “I felt like I didn’t fit there anymore.”
I gave that same one as sort of a reason why I didn’t do too much over the next
little bit as well. I thought the hardest battle I would have to go through was with
those diseases but, it seemed as though it was finding out who I was.

Some time went by of being in a lull and not doing anything in life those who were
at my side were becoming a little worried. In spite of the efforts I gave not for
them to happen, my mom set up some appointments for me to go and see a
psychologist. I didn’t want to but, thought nothing of it because I figured we
would have nothing to talk about. At first we didn’t though, over some time I
began to realize that I wasn’t quite over all that had gone on in those previous
years. It was hard to accept at first but the therapist helped me to realize those

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emotions I stored away was like me pouring water into an empty bowl. The bowl
was big and had been built well but eventually ‘it’ overflowed with emotions.

The only thing that I asked myself was, ‘How could I be feeling this way?’ She
acted as kind of a tape recorder for me and would play everything I would say
back when talking about her thoughts on the matter. When hearing it I would
become I got angry at myself for feeling that way. I wasn’t angry at her for
pointing it out, I was angry with me for having those little holes in my psyche.
After those little sessions with the doctor I got to put the rest of the puzzle pieces
of life together. But, upon putting everything back in the right places I said to
myself that I would never feel that way again and instead of advocating for
psychology for those experiencing those feelings I want to yell out the words,
“Believe in yourself!”

When I got rid of those thoughts, I had a few one day gigs or: stage’s (As chefs
would say) in a couple of restaurants around Vancouver but nothing permanent
or stable as my family would tell me. They would always say, “Find your passion”
but to be honest, because of everything that went on it was nice just to have a
little break from everything. Although, not everyone in my family felt the same
about it all and they wanted me to look towards the future.

They began pushing me (gently) to get on with my life and find myself another
job. My mom suggested that I go over to my aunts on the island to take some
time and relax after everything as well as find a job. I agreed and talked to my
aunt who lived in a tiny town a couple hours away from there and hopped over
on a ferry to head out that way. When the ferry arrived to the island her and I
took a drive to her house and I was amazed by the sights, it was almost like
looking at another world. After that, we got to the town she lived in and I finally
felt like I was able to take my mind off of everything. Things just seemed to move
a little slower there. For the first week or so being there I mainly just looked at all
of the sights that were around but after some time she told me that I had to get
on with finding a job. She knew that I wanted to be a chef and suggested working
in a couple of little restaurants around the town but, I wanted more than that.
After getting a position in a hotel’s kitchen in Ucluelet I sent a message to the chef

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who worked over in Tofino at a really fine one. The reason for that being probably
had something to do with all of those chefs who were on television, I didn’t want
to work in some small restaurant, I wanted it all.

Whenever the weekend would come my aunt and I would go to check out some
place near where she lived just to look at nature…she as well as one of her friends
that came with us always were baffled by what was around but in all honesty I
just saw a tree or a river I wasn’t as taken aback as they were. Though, sometimes
being away from what you already know gives you more of an idea of what you
want to…if that makes any sense. Life kind of went on like that for a while though,
I was always waiting for the call to come down to Tofino. Then finally after what
felt like an eternity I got word from that restaurant and packed my bags. I
grabbed them and hopped in my aunts car to go down. It was her car because and
I don’t think I have mentioned this but, I never did end up getting my license by
that point because at the time when it should’ve happened there were more
important things to do. After an hour or so drive down there listenin’ to that
classic rock all the way we made it. It was a bit daunting for me looking at the
hotel at first but my aunt told me something that was almost like a slap in the
face and said, “It won’t be nearly as difficult as getting through all of those
treatments and such you went through in the past.” It really made me feel as
though I could do it, even more and I went to walk in. Before I could though she
told me that for the ride I would have to take her out for a nice meal once I got
settled. We gave each other a hug and then she was off. I kind of had to believe
the in the illusion I was telling myself that nothing was going to be difficult for me
now because so much already went on. It worked for a while too but if ever I
screwed up at the job I would always revert back to those hard thoughts by telling
myself that something else bad would happen. I managed to keep my head down
and work for about a year or so but eventually those thoughts all came back.
When I told my aunt about them, she didn’t even want me to give my two week
notice and insisted on taking me back to her town where I could arrange a time to
go see a shrink right away. It was a crushing moment because I realized that I had
let all of those bad thoughts effect me again. Without some action taken though, I
knew that they would continue to plague me. We set up an appointment for me

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to see yet another shrink but, the same thing happened again, after talking about
my problems I got angrier and angrier because they were the same ones I had
before. Upon realizing that I had an epiphany, I was the only one who could get
rid of em’ and sure as anything I would…….Those ones would’ve been nicer to
have before I handed in my resignation but, nevertheless it was a defining
moment when they came because it was as though any fears just drifted away.
There was only one option to take when that happened and that was to keep
moving ahead. It really helped when thinking about it too because once I arrived
back home I had yet another appointment to get my head scanned.

By that point in life I was twenty years old and rather than getting the M.R.I. at
Children’s I had it done at the B.C. Cancer Agency (B.C.C.A.). It didn’t mean much
to me, I thought it would just be yet another scan and we would get the same
kind of results from the doctor. When the scan was done though, instead of
getting the results of it back the day of I had to wait a week until we heard the
news. It was just my mom and I who went down to get it because well, we
thought nothing would be of any interest. At the start of the day the thoughts
running through my head were positive, when the doctor read out the results
they were anything but. They found a completely new, or not completely new but
another tumor which grew out of the same spot as the old ones were in. Upon
hearing those results I wasn’t either sad or angry like I was the last times just
exhausted.

When I asked what would be done next the doctor said, “Radiation” but, said it
with a kind of unsure look on her face. Then as a way to let me know that this was
the way to go she set up an appointment for us to meet with another surgeon
who would potentially be taking a biopsy of the mass. We met with that surgeon
the following day and he told us what my doctor had and let me know, that he
could take a biopsy of this mass but because more than likely it was cancerous as
well as being in a very delicate place more harm than good would happen
because of it.

Having been let know about everything in the days before the rest of my family
had an idea of what was going on but, when my mom and I got home from after

49
being told of this new plan almost in unison when we told them of it they all let
out a big breathe of exhaustion. I just sighed and went to bed, I didn’t even want
to deal with all that was about to happen.

Ch. 9/ No other choice

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We were given two weeks before I had to make a decision and those days just
went by as quick as anything. When thinking about the two options of what to do
next it wasn’t really that hard of a choice to make, I was just tired of having of
being in this fight. I thought it was done once then, it all happened again and now
it was taking place for the third time. At first I didn’t know the decision to receive
more radiation should be taken because one like that was made before and
nothing good came from it I mean, I got a couple of years between the next
tumor but nevertheless a new one formed so, what if that would happen again?

Giving up though, there wasn’t even an idea in my head about making that kind of
decision because then what would’ve been the point of everything so far?

In the following weeks we came back to the hospital to meet with the head
radiologist again and she was the same one I had back in two thousand and eight.
Like my other doctors she just told us the same thing upon seeing me for
treatment again, she was tired of seeing us. This new plan was a bit different
from the one we had in store for us the last time. When hearing of it my face
went pale because although it was less radiation I would have three zaps or
treatments in the mornings and three more in the afternoons over the next
month or so. Two words popped into my head when thinking about everything
though they were, “I will” over and over they were played back in my head. It
really seemed like a bad dream we were all in for the past decade but I was going
to make sure more than anything that we were going to wake up from it.

My “Emotional pit crew” all went down to the B.C.C.A. to come and support me
during those treatments the first day and of course I was on whatever anti-nausea
medicine I could take because these treatments were awful. I guess it had a little
to do with the fact that I would have a lot more but I didn’t want to be negative
just based on principle, if we all smiled as well as stayed positive then like
everything before, these days wouldn’t be too bad. We were told that I would
have to get another mask fitted around my head like before and once it cooled
they could begin. When it was cooling I can remember almost having a moment
of déjà vu because basically this exact same thing went on in the previous years.
Those feelings really bugged the hell out of me too. I suppose I didn’t want to

51
think of what would be going on for the next little while and unlike the last time
these treatments couldn’t be thought of as any better than they would be
because ones like them had gone on before, I knew what to expect. The feelings
of shock kind of wafted over and paralyzed my emotions that day. When my
name was called I kind of acted like I didn’t hear it but then, it was again and I
stood up. Those technicians they all wore smiles on their faces trying to make me
feel better about what was about to happen but honestly, it didn’t work. We all
went into a room with this colossal machine I would be placed under then I heard
the words, “Hop up on the table.” It felt as though I was some kind of a rabbit or
something. The mask which was made earlier was placed over my head,
connected to the table and the words, “Be back in a couple seconds” were said by
one of them. It was a bit frightening but, the calm demeanor everyone had
relaxed me a bit.

As they left like before when the door closed three rings sounded and it was all
ready to begin. That big machine then hovered over me and began to make these
strange sounds every time a green light would flash. Leaving then wasn’t an
option but that was all I thought about doing, just unhooking the mask and gettin’
out of there. When the next scans were finished I felt no emotions only the
feelings of lethargy that were unlike any other. I was happy those treatment was
over but, not too because I would have to come back there that afternoon to get
another three….for the next forty week days.

What comforted me a little was the fact that in between these treatments I would
get to go back home for a while to rest before my next treatments on the days.
We got home and I merely put on the T.V. until we had to go back. Desires were
hard to have during that time though, I had one about not going back for
“seconds” but, regardless of it they happened again. When we got back I got
three more scans and whatever energy I was able to store up after those last ones
was gone the moment they hit my body. When they were done upon walking out
of the treatment my mom had to basically pick me up off of the floor because I
was beat.

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We got home, ate dinner and then I headed to bed because I was beat…..The
dreams I had or wanted to have were pointless to think about because the day
after they appeared we would be going back to the nightmare. Though, I tried my
best not to think too much about the situation at hand because it was just too
saddening. I wanted to view it like I made it past one day so, lets bring on the
next. Having my thought process like that really helped me through this. Though,
thinking about the weekend and my breaks from this never stopped.

Regardless of that we went back the following day to begin them again, I say
begin because those days were like being in a story and I didn’t have any clue of
how the end would turn out. The next day was relatively the same as the first I
would go through the treatments in the morning and after returning home and
milling around the house for a few hours would go back later that afternoon for
seconds. My family all told me that I could do it though, my exhaustion was
always there. I know that they were supporting me through this time and I loved
them for that but eventually it became hard for me to see them everyday waiting
there, sitting and wondering to find out how it went. It was odd, I loved having
their support but, not seeing their fears. The rest of the first week went relatively
the same and I know this is obvious but, my mom’s face was the one I saw most.

By the second week it was just us two who went down and it was good, I felt like I
didn’t always have to be “on”, it was as though I didn’t have to put on a brave
face anyone other than her. Having just her there made me feel
stronger…….mentally but, physically it was all up to me to stay in the fight. During
the second week of going down there we kind of got a little break when one of
my mom’s friend’s from work told her that we could stay at her house in between
treatments. It was a nice gesture but, after that week came and went we opted to
go back home in between because something about home just made us feel more
comfortable. As the third week of treatments began I wanted to be able to get
inside her head, as well as the rest of my family’s to try and understand what they
thought about everything that was going on because but, upon thinking about it
further I was glad that I couldn’t do that. I am sure either of our insights into each
other’s minds would have been the wrong decision because we were all lost at
the time.
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We each just kept our heads down as the days in the week passed and although
more radiation was being given to me, I powered through and got to the
weekend. As much as I wanted to believe that everyone was fighting this with me,
I also was glad that wasn’t the case because those times were awful. Each of us
wanted to go out on the weekend and grab a nice bite to eat but, because of my
immune system no one wanted to risk me getting sick so, we were planted at
home. When the weekend was over and my mom and I were about ready to leave
both of my grandparents insisted that they come with us because that is what
they did the first……and second times so, there was no way that they would stop
now.

It was the half way point in the treatment I was to receive or I already had been
through half of the treatments I was to get. (Seeing the glass half empty vs. half
full). The third week was upon us and instead of acting tired and laying down I
wanted to stand up straight. It wasn’t easy because with each passing day of I
wanted just drop but, knew that was the right decision because well…..I wasn’t
even going to think about the other one. With all of those radiation treatments
that happened already I felt as radioactive as a microwave and thought me just
touching a bag of popcorn would have the kernels pop. It was a little joke said all
around the house that helped us all look at the situation with a happier attitude
but honestly, it started to feel like it would be true.

There isn’t really that much else to say about those visits before the final four
because they were the same as all of the rest. We would go down there, wait to
be seen, my name would be called, I would go in for the ‘zaps’ then, we would
head back home to wait for the next ones that afternoon.

They finally came though, the last ones that were scheduled for me to have and
as a little cherry on top of this horrible sundae I was eating the last week of em’
would only be a four day week. It was good too in the final week there was only
four days scheduled because I didn’t know if my body would or could handle any
more. As the days went by I was almost shaking with excitement when I marked
off the days on my calendar on our fridge back at home. Eventually, the last day
came and I took a camera down with me to the clinic. I wasn’t usually happy to

54
see the inside of this hospital but, I was then. Before they started the technicians
hooked me into the table and I asked them to take a picture of me locked into it
prior to everything starting……for the last time. Then they all left with the camera,
I got the ‘zaps’ and we took a picture together. I thought that upon looking at it in
the future a big smile would happen and it was certainly nicer than the image of
myself I had in my head throughout most of the time there. Like the first time I
was there back in 08’ I was given the mask I wore throughout everything but, this
time I wasn’t going to get rid of it. It was going to be kept, almost as a trophy to
signify my win.

When we returned home it wasn’t like the last time, it wasn’t like the first time
either, when those confused and exhausted looks were on my face but I had a
sneer of pride on it that was unlike any other. I simply laid down in bed with a
tear running down my face and finally felt like this ten year challenge was over.

In the following days I had a scan of my head and we were told to meet back at
Children’s to get the results. It was good too because for the last couple I was
sitting by the phone and waiting for it to ring. When it did the McKee clan hopped
into our van to go and hear the results from my doctor. It wasn’t fear running
through my head about hearing them but, it wasn’t exactly joy either…..just angst
waiting to hear what was what. When we arrived we were told to wait in this little
room where I usually heard the results and I was glad because it wasn’t that room
which seemed huge like the time before. We were all cautiously giddy at first but
once my doctor opened his mouth our attitudes changed real fast. Again, the
results told him that a mass still remained in my head but, as far as he and the
other doctors could tell it wasn’t cancerous. It felt like a fuckin’ tape recorder was
playing over and over saying the same thing. They told us something to try and
take the edge off but really it just made me angrier. It could’ve been scar tissue
that still remained but upon thinking about it I just got more irate. I calmed down
a little and then we all told them that we would see them again in five or seven
months to hear the results of the next scan.

The months passed and the next appointment came where I was expecting
nothing to happen or something bad but, it was much to the contrary when we

55
were all told it shrank. I don’t know for certain if I am done with all of the
problems associated with it but sure as anything, now there is an opportunity to
find out!

Ch. 10- Their words

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The illness which was unfortunately a part of my life couldn’t have been beaten if
I didn’t have my family by my side. We were shocked upon first hearing the news
that I had a cancerous growth in my head back in two thousand and seven then,
learning it came back in twenty ten as well as twenty fifteen. But, when we did
instead of curling up into a ball in the corner then giving into the fear my family
picked themselves up, dusted each other off and fought along my side. For them
it was as though they all got a shot of adrenaline in order to keep smiles on their
faces. As much as they wanted to be able to do more, supporting me in the fight
was all that they were able to do, I can honestly say that without it I probably
wouldn’t be here today to tell you about my journey. Yes, I know how corny that
reads though to be honest, I am not ashamed of whatever words boasting about
all of them come across because they were as strong as anything.

While the rest of my family was there for me emotionally my mother was the one
who was there both emotionally and physically for me, throughout everything.
Unlike what some medical journals read having someone like that right there for
me was helpful and not a hindrance. I guess it depends on a case by case basis
but, maybe it is simpler than that. For all intents and purposes seeing your sick
family member laying there getting treatments is tough but, it will be a whole lot
tougher for each of you if achieving the cure is thought of in the worst of ways.
Which is probably one of the reasons she chose always to look at as well as make
the bright side become obvious to see. Words may seem like just those but
whenever I would hear, “You will beat it!” It was as though I got an extra boost of
energy to take everything on and believe in my power and my dedication to take
those diseases down. As I write this I can’t express my gratitude enough to her as
well as the rest of my family for stickin’ in there with me so I will just say, “You
guys ROCK!”

By a certain point it became like the hospital staff was kin too, they were all there
right by me as those fights went on. Like I talked about before there were a few
days when everything was going on when I just wanted to give up but, the

57
attitudes that everyone had kept me going. At a certain point they each helped
me to find out what kind of person I am.

There were times where I felt like a human around them though and not the
super-hero that they all said I was. Whether it was watching my family’s faces or
the hospital staff’s faces I always managed to, ‘suck it up’ in those vulnerable
moments I would have because I didn’t want to let anyone down. Granted, those
words were always said with love but, whenever I would hear em’ it was like
getting an earful of determination. The whole time I was grateful for hearing
those words but some of the times….and more than I care to admit I needed to
hear them. The desire that I had to have this image of myself as someone who
was strong enough to get through everything had nothing to do with my ego or
anything. I merely wanted to prove to everyone who was around that they didn’t
waste their time supporting me. I am overcome with gratitude that everyone
thought it was worth it to support me in any way that they could because their
support helped me in the fight.

I do respect how everyone, anyone may feel about how I should see the world
now or how my life should be lived. In regard to the opinions that they may have,
it is a bit more complicated than what they feel based on who they see. It may
seem like a strange way to be acting but there is always a worry that something
else might happen. I know that isn’t the right way to think, I should think like this
is my second……well, fifth chance at life and it is understandable that people may
feel that way but, it is a hard thing to do. To change the way we think after not
only seeing but living in that dark past nevertheless, it has to be done.

What would be nice is if when we faced hard times thinking our family members
as miracle workers, like they can snap their fingers and everything which is going

58
bad in life would go away. Back in reality though things are not that nice and
regardless of any of the support that is poured on, you may feel lost. Some may
feel that being “lost” is a bad thing but, quite the contrary it just means you get to
find yourself all over again. Looking at the bright side is a whole lot harder than
looking at the other side….you have got to think about something though when or
if ever you feel like the world is getting darker all around. Your mood as well as
everyone else’s moods are going to be a whole lot worse if that choice is made.

It is understandable that not everyone is in positions like that because some of

the people who may be around are “downers”. You know the type, those who
choose to see and think of the negative situations as bad as possible. But that’s
okay at first, because it takes a strong kind of person to flip how they’re feeling
one hundred and eighty degrees to see change.

The idea that a family can bring you down with all or any of their questions was
not relevant to me, it simple gave me assurances that they cared. Having them
around was actually good because they made me feel as though I didn’t want to
let any of them down. I know that seems like a strange concept because if I had
lost my life to cancer I wouldn’t be around to hear any of their words but,
nevertheless I didn’t want to not be there to pester them all some more. I
honestly think if you don’t have a family by your side you’ll have a damn hard
time but, that doesn’t necessarily mean they are all related by blood. Whether
they are your doctors or the books you read during hardships, a family can be
found anywhere. So, if ever you feel like saying, “I can’t find positivity in my life”
you simply aren’t looking hard enough. There isn’t any reason why you should
have any excuses, life’s tough but as sure as anything it can be worse.

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With everything around looking so negative you can’t help but see things that
way. Regardless of my loved ones good wishes towards me thoughts of the bad
possibilities would always find a way into my mind. Sometimes it feels as if there
is nothing that we can do about them, whether it is watching T.V. or eating a nice
plate of food. One thing that I will recommend if ever that happens just close your
eyes and sleep. It may seem like just a juvenile thing to do though but, with a
disease like cancer you can do whatever it is that benefits you to get past it and
when sleeping, it is as though you get a brief time where those bad thoughts are
somewhere else. Thankfully though, whenever I was alone because my mom was
at the store the nurses and doctors were there with me at the hospital. For
obvious reasons my doctor wasn’t always checkin’ in on me because he had other
patient’s but, when he did I always felt as though he was just workin’ on my case.
I know that seems impractical but, it helped me feel calm in those solitary
moments.

All the nurses that were at the hospital did much the same and always kept our
spirits up there too with their funny comments as well as their attitude’s. I
honestly don’t know how they did that because they were all around sick kid’s like
us all day, it was amazing. You wouldn’t think that them having funny attitude’s
would change a patient’s fight but, it does. Speaking as a former one I will tell you
it does! When dealing with the situation you are in because it’s as though the
world around doesn’t seem so dark. Almost as a bonus of me being an older
patient all of the nurses and doctors who were on my case joked around a bit
more and it was nice.

When I felt something bad, they did too. When I felt awesome, they did as well.
They or anyone else can differ with my thoughts on the matter all they like but, I
know that if I didn’t have those people around when going through everything I
would be a whole lot worse off than I am now….it kind of bursts my ego bubble a
bit thinking of it but all the same, I am ecstatic when coming to that realization it
felt as though my strength increased a hundred times.

If anything, life is tough but WE are tougher!

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