July
3, 1991, was the happiest day of my life. My first son had been born. He was so
beautiful, so healthy, so perfect. I named him Matthew because it meant
"God's Gift". Matthew was my whole life.
On
December 26, 1992, my whole life began to fall apart. Matthew was one and a
half years old... I was babysitting my cousin Julia. She was sick so I was
asked to keep and eye on her temperature. About an hour before her mom was to
come and get her I had checked her temperature and she had a fever. Afraid that
Matthew was also sick, I took his temperature. Much to my surprise, Matthew's
temperature was higher than Julia's. I got both of the children ready and
waited for my aunt to get there. When she arrived, we took the children to the
emergency room.
After
being at the hospital for five hours, Julia was diagnosed with an ear
infection. Matthew, on the other hand had some kind of virus. I was told just
to keep an eye on him....give him Tylenol for the fever and give him plenty of
fluids.... you know... the normal treatment for children.
The next
day Matthew was not getting any better. In fact, he was getting worse. He began
vomiting. Another trip to the hospital, and once again we were sent home... but
not before the doctor told me that first time parents sometimes get a little
paranoid.
The
following day Matthew was still vomiting, to the point where he just wouldn't
eat or drink anything. A few times that day he would be walking around, he
would lose his balance and walk into the walls. As far as I knew, I figured it
was because he was weak. But off we went again to the hospital. And again the
same results. I knew there was something wrong.... first time mother or not...
I just knew!
This went
on every day until January 5th. Matthew just seemed to be getting worse by the
minute. He wasn't eating, wasn't drinking....hell ... he wasn't doing much of
anything but laying on the couch looking like a little rag doll. Sometimes I
got him to drink something, but he no sooner got it down and it was coming
right back up again. That day I decided that instead of taking him back to the
emergency room, I would take him to a doctor on call. Dr. Geiger took one look
at Matthew and called the emergency room to let them know we were on our way.
He instructed them to get a room ready on the children's floor and he also told
them how incompetent they had been.
After he
had finally been admitted..it took several hours before we were finally settled
in. The doctors decided to wait until morning before running any tests. I
stayed with him through the night, resting on a small cot that the nurse had
given me. Throughout the night, Matthew would wake up screaming. I would jump
up and turn on the light to find him still sleeping. I took him out of his bed
and we sat in the rocking chair in his room, and that is where we stayed all
night. The nurse came in now and then to give me a little break.
That
morning a doctor came into the room, asked a lot of questions and told me that
Matthew was dehydrated and wanted to get an intravenous started right away. We
took Matthew to a little room that had a sign titled “Treatment Room” on the
door. I sat beside Matthew and held his tiny hand. He was so dehydrated that
they must have poked him twenty times and he never flinched. Another doctor
came in to access the situation and started talking to the first doctor about
meningitis. I knew it was time to call
Matthew's father.
I left
the room long enough to call his father and my mother, then made my way back to
the room. I saw Dr Onyette running down the hall. With a closer look, I
realized she had Matthew in her arms. Then she started yelling “Move out of my
way! He's not breathing!!” By the time I caught up with them they disappeared
through more doors that read “ICU”.
They
would not let me into the room. The nurse told me to go into the family room
and they would be with me as soon as they could. Within minutes I had a social
worker sitting beside me, explaining to me that Matthew had a seizure and
stopped breathing. I just remember being very upset and extremely confused.
By the
time they came out of intensive care to talk to me, Matthew's father, my mother
and my brother had arrived. Dr. Onyette told me the same thing that the social
worker had said. But she also explained to me that Matthew needed a ct scan.
And unfortunately the ct scan at the hospital was broke down and we would have
to go by ambulance to the other hospital close by.
Once we
arrived there they told us that if there was anything wrong, they would call in
a specialist to have a look at the results. So they took Matthew into the ct
scan and again we waited.
After
what seemed like an eternity we heard someone calling what seemed to be a dozen
doctors to the ct room...as much as I pleaded, they would not let me in. Doctor
after doctor, they all piled into the room, all gathered around the monitor.
Finally after about 20 minutes they called me in. They showed me the monitor
which of course I didn't understand. One doctor explained to me that Matthew's
ventricles in his brain were larger than they should be...then he walked away,
leaving me there. All I kept thinking was... “Well! Fix it!”. Then another
doctor walked up to me and said that they would have to operate to remove the
tumour...and they would have to operate now.
Very
upset and still confused, they allowed us to see Matthew for 5 minutes before
they rushed my baby to have brain surgery. If I had known at that moment, the severity
of it all and the possible outcome... I would have taken a moment with him by
myself.
They
wheeled him away and we were shown to the family room where we would wait out
the surgery. As soon as we got there, Matthew's father said that he was going
to go home and wait because he was tired and I could call him when Matthew woke
up. It was then that I realized that leaving him six months before, was the
best thing I had ever done.
While my
mother, my brother and I waited out the surgery, we had friends and relatives
that came in to offer us food and some comfort. It was very thoughtful, but
mostly I just sat by myself trying to figure everything out.
When the
surgery was over... twelve hours later.. the neurosurgeon came in to talk to
me. He told me that he would have to do a biopsy of the tumour to see if it was
malignant....but he was pretty sure that it was. So what the hell did malignant
mean anyway??? I had no clue and was too afraid to ask. He also told me that
even though the surgery was over, it was a very risky operation and Matthew may
not even wake up at all. I figured at that point there was no reason to call
his father. If he cared, he would be there. I just sat in the family room,
cried and waited.....
After
another four hours, a nurse finally came in and said that Matthew was awake! I
figured that under the circumstances, a phone call to his father could wait
till I was damn ready to call him. I needed to see my baby first. The nurse
explained that it might be difficult to see Matthew but that I had to be strong
for him.
I walked
into his room and much to my surprise was my baby boy laying on a huge hospital
bed with the sides up...tubes coming out of his body everywhere and I counted
roughly thirty staples in the back of his head. I sat beside him, smiling
gently, holding his hand and trying to fight back the tears and just trying to
comfort him. I knew I was losing control and I didn't want him to see mommy
cry, so I told him I was going to call his dad to let him know he was awake. I
asked him if he wanted to see daddy, and because of the breathing tube, all he
could do was nod his head. I gave him a kiss on the cheek and told him I would
be right back. I went to the family room to call Matthew's father. His
girlfriend Susan answered the phone and said that he was sleeping. I told her
that Matthew was awake and she handed him the phone. I told him that Matthew
wanted to see him. He said he would be right there. Six hours later he finally
showed...with his girlfriend. He told me that he didn't care what I
thought...he was taking her in the room to see him. But what he didn't realize
was that I had full custody of Matthew and it was up to me who went into
Matthew's room. To spite his actions, and the fact he wasn't there when Matthew
woke up and that it took him six hours to come into the hospital... I let them
both go in. They stayed a few minutes. He told me to keep him updated and then
they went back home.
I asked
the nurse to page the neurosurgeon. I had to know what was going on. When I
finally got to talk to Dr. Saunders he told me that he was positive that the
tumour was malignant which meant my one year old son had brain cancer! I always
saw those St. Jude Hospital shows where the children had cancer...but I never
thought this would happen to me....to Matthew.
In order
for me to stay overnight with Matthew, the social workers gave me a room to
stay in. These rooms were usually for people out of town, but they knew I was
not going to leave Matthew.
The
following day I was sitting beside Matthew's bed. I asked the nurse if I could
hold him. She said no because of all the tubes. I quietly asked her what she
would do if this was her child laying there. She put down her stuff and said
that she would help me. I needed to hold him.... even if just for a few
minutes. After getting all of the tubes out of the way, she placed him in my
arms. I gently rocked him, making sure that I would not pull on any of the
tubes. I talked to him awhile and he nodded when i asked him questions. I sang
his favourite lullaby to him “ you are my sunshine”. Well when I got to the
last line.... I am sure you know how the song goes...I almost completely lost
it. I vowed I would never cry in front of Matthew so I asked the nurse to place
him back in bed. Tears welling up in my eyes, I gave him a kiss and told him I
would be right back. I went into the family room and cried for what seemed like
forever and I vowed I would never sing that song again... and haven't even to
this day.
A few
days later, Matthew was moved to the Neurological Intensive Care unit, where he
would spend the next couple of months. As it turned out... it was the next six
months. I was told by the doctor that because of where the tumour was located (
fourth ventricle) they had to remove part of his brain, the part that
controlled his balance. So ... I was told that he would never walk again. It
didn't matter to me if he could walk or not, as long as he was still here with
me.
Even
though Matthew's first surgery went well, he had many obstacles to overcome.
Everything seemed to be okay ...or so I thought. One morning I was having
breakfast in the hospital cafeteria. When I was done, I headed back to his
room. He was sitting up playing with a toy, something didn't seem right. I just
stood there watching. He was playing with the toy but he wasn't looking at it,
instead he was just staring straight ahead. This caught me by surprise because
whenever I entered his room, he would always yell out to me and put his arms
out to pick him up. He didn't even know I was there. I walked slowly up to his
hospital crib, standing directly in front of him and he still didn't know I was
there. When I said hi to him, he then yelled out 'mommy!' I gave him a kiss and
told him I would be right back to pick him up. I walked to the nurses desk, in
tears, and explained what I had just seen. His nurse also started to get teary.
It was amazing how close all the nurses got with Matthew. She paged Dr.
Saunders and we waited.
Once
Matthew was assessed, he explained to me that during surgery, the tube that
circulates all the spinal fluid from brain to the rest of his body must have
become damaged and all the fluid was gathering in his brain and could cause
blindness. He would have to put a hole into Matthew's brain to drain the fluid,
but there was no guarantee that he would get his eyesight back.
As I held
Matthew's hand, they gave him some local freezing, made the cut in his head.
Because they had to do brain surgery, they did not put the part of Matthew's
skull back in place, so the back of his head was soft and so unprotected. He
placed a tube inside Matthew's head and drained the fluid. Within thirty
minutes, Matthew was able to see again. But that was only temporary, he would
have to go through another surgery to have a shunt in place. A shunt is a tube
that would be placed inside Matthew's head to circulate the spinal fluid that
was collecting in his brain.
Approximately
one month later, Matthew was moved out of the Neurological Intensive Care Unit
and placed into a room. I slept in his room on a cot beside his bed, only
leaving long enough to do laundry, eat and pay bills.
A month
later, Matthew was transported to the other hospital where he was placed on the
pediatric floor. He would then begin chemotherapy. They said that chemo makes a
lot of people sick, but for Matthew it was okay. He still remained his happy,
cheerful self, but he did lose his hair. But he thought that was cool, for me
it was a little more difficult....who am I kidding... it was a lot more
difficult.
The
months passed and he was finally allowed to come home. His chemotherapy
treatments had finished, but he had to return to the cancer clinic once a month
for blood work and the occasional transfusion.
In
February of 1994, it was time for Matthew's next CT scan. All of the waiting
was making me crazy. A couple of days after the scan, I called Dr. Silva to ask
her if she got the results yet. She had
said “ Don't worry, look at how well he is doing. The tumour couldn't have
grown back”. A few hours later, I got a phone
call .It was Dr. Silva and she was crying. She gave me the dreaded
news.... It was back. She explained to me that because he was so small that he
wouldn't be able to go through chemo again and may not be able to have
radiation. The choices were limited. She explained that we would have to go to
Sick Kids Hospital in Toronto for further evaluation to see if there was any
more they could possibly do. She told me to pack enough clothes because we
would be there for at least a month.
A few
days later we said goodbye to our family and friends and headed to the big
city....not something I was looking forward to. It was hard enough to go
through that, but to do it alone was worse. We were told that Matthew would be
admitted as soon as we got there and that my accommodations at the Ronald
McDonald House would all be in order. When we got to the hospital, carrying
Matthew in one arm and two suitcases in the other, we soon found out that
Matthew would not be admitted yet. We had to cart the suitcases to the Ronald
McDonald House, then had to go out to get diapers.
I hated
Toronto already! I had Matthew in a wheelchair...in winter...in a strange
place....trying to find a grocery store., without getting lost. No one even
stopped to bother with us at all. It seemed like we walked forever and all of
the shops had escalators or stairs...so we couldn't go in. I stopped at a
corner, sat on a bench and started to cry. A man stopped and asked if he could
help and I told him what I needed. He was kind enough to point me in the
direction of a Bi-Way store. Once I got there I soon realized that the diapers
were of course....upstairs. Frustrated again with the wheelchair, one of the
employees graciously went too get the diapers for me. On the way back to the
house I passed a one level store, so I bought some bread and lunch meat so we
could at least eat something.
A couple
of days after we were settled in, we had to go to the hospital for Matthew's
tests. Then the waiting began again. Once we finally got the results, the
doctor told me that he would operate to remove as much of the tumour as
possible and then after he had time to heal a bit, then the radiation
treatments would begin.
The
radiation procedure was to take place at another hospital in Toronto. A van
would take us there and wait for us, then return us to Sick Kids. The radiation
sessions would be every day, and lasted for about twenty minutes of preparation
and two minutes of radiation and a total of one and a half hours for
transportation.
The
radiation was going well, although the treatments made Matthew's face dry and
red. He was also put on steroids to decrease any swelling, but the steroids
made him eat a lot and he was very bloated to the point where he was almost
unrecognizable.
For the
next month or so we continued with the radiation treatments and he was
eventually discharged from the hospital and continued to stay with me at The
Ronald McDonald House. We even got the occasional family visitor, and managed a
few trips home by train on a weekend or two.
One night
while I was sleeping, I heard Matthew moaning in his bed. I would get up to see
what was wrong, but he was still sleeping. In the morning when I woke up I
noticed that he didn't look well. It was an hour before the van would be coming
to pick us up for his radiation treatment so I figured I would take him so that
a doctor could look at him. Once we were there, the doctor proceeded to go
ahead with the treatment and when Matthew got sick during the treatment he told
me to take him right back to Sick Kids to have him looked at.
When we
arrived at Sick Kids, he was doing a lot worse. It only took a couple of
minutes to get him into a room. Everything was happening so fast that I didn't
know what was going on. They told me that I had to leave the room right away
but gave me no reason as to why. I overheard the doctors and nurses yelling out
orders for tests, medications, saline bags and oxygen. I knew there was
something terribly wrong. I walked down the corridor and called my mother. I
needed someone with me...I could not bear this on my own. Once I told her what
was happening she said she would get some stuff together and would get a friend
to drive her to Toronto.
By the
time I was allowed to see Matthew, he was on life support. I can't remember
what they called it at the time, but he had some kind of lung infection. He had
fluid in his lungs and could not breathe on his own. It was so heartbreaking to
see him that way. The doctors told me once again that Matthew would not come
out of this.
By late
afternoon my mother had finally arrived. I told her what had happened and took
her in to see him before heading to the Ronald McDonald House to drop off her
things. My mother was actually very supportive, but to make matters worse,
Matthew's dad had showed up too.
My mother
and I stayed by Matthew's side most of the time, only leaving long enough to go
for a walk or get something to eat. I guess we both just needed to escape for a
little while. A couple of days passed and there was no change in Matthew. His
tiny, lifeless body hooked up to life support and sedated on morphine. The
doctors had given him a drug to reverse the morphine so they could determine
what to do next. A couple of more days passed and he still hadn't waken up.
They took him for a ct scan to see if he wasn't waking because of the morphine
or if it was neurological. We could expect the results within a couple of
hours. When they took Matthew for the ct
scan, the doctors said it didn't look good. His father asked the doctor if
Matthew was going to die. The doctor had said that yes, it was an unfortunate
possibility and that he didn't have a lot of hope. His father stated that's all
he needed to know...and he was gone. My mother and I waited by Matthew's side
for the results. When the doctor finally came back to talk to me, Matthew's dad
was still nowhere to be found. The doctor told us that the results were okay.
He was not waking up because he had been given too much morphine, that it was
not neurological. In my mind there was still hope and I wouldn't think
otherwise.
My mother
and I left and went back to the Ronald McDonald House to get some rest. I had a
pager in case the hospital needed to reach me.
Before we went back to the house, I decided that I was going to go
looking for Matthew's dad. The thought of him out there somewhere terrified me,
because when Matthew had relapsed, he had told me to leave Matthew alone, not
to put him through any more treatments and just let him die. I told him that
until the doctors said there was nothing more they could do ...that I would do
everything humanly possible to save my son. Seeing that he was an alcoholic and
Matthew was on life support, I couldn't trust him to be alone with Matthew
under any circumstances. Across the street from the hospital was a little
restaurant that I had been accustomed to since we had been in Toronto, mainly
because of the fact that it was so close. I walked across the street and looked
in the window, and there he was, sitting at the bar, with a beer in his hand. I
walked back across the street and into the hospital and into Matthew's room and
found his nurse. I explained the situation to her and gave explicit orders that
under no circumstances was he allowed back into Matthew's room until morning
when he had the chance to sober up. And if they had a problem with that, to
page me and I would come back to the hospital to deal with him myself. I got a
page at three in the morning. I called the hospital and spoke with Matthew's
nurse. She told me that he had shown up at the hospital, and she turned him
away. When he tried to get past her, she said if he had a problem with the
orders he could take it up with me when I got there. Apparently he was angry
and got in his car and drove back to his home in Kingston....drunk. I called
his girlfriend to explain what had happened so she knew he was on his way home.
The
following day, my mom and i were sitting at the restaurant where Don had been
drinking the night before, having some lunch and a coffee. My mom asked what I
thought was going to happen with Matthew. I told her I wasn't sure but I did
know that I was not ready to go home without him.
By some
miracle Matthew was off life support a couple of days later, then eventually
into a regular room. A couple of weeks later he was discharged from the
hospital and would return back to the Ronald McDonald House with me. By this
time my mother had gone back home. Matthew resumed his radiation treatments.
After three and a half months of being in Toronto we were finally allowed to go
back home to Kingston. Matthew's doctor told me that if he stayed in remission
for two years, he would be out of the woods. Again...more waiting and a lot
more worrying.
After we
returned home, we would again have our weekly visits to the cancer clinic. The
thought of Matthew having another relapse was always in the back of my mind,
but I knew we would have to live life to the fullest and not dwell on
that....at least not in Matthew's presence. I had to make sure that every day
of the rest of his life was a happy one.
That
summer after returning home, we spent some time my my dad and step mom at the
cottage. We had a great time. When we returned home, we received some good
news. I had a message on my answering machine to let me know that Matthew and I
would be going to New York City so that he could meet Billy Ray Cyrus. It was
great to know that Mathew would be able to do something he always wanted to do.
He was forever singing along to Billy Ray's songs and strumming along on his
little guitar. It was absolutely adorable.
I decided
to take Matthew's comcare nurse with us to New York City, just in case we
needed her, and I felt a lot better knowing that we were not going alone. New
York City was fantastic, better than I would have ever imagined it. Billy Ray
Cyrus was so great, so kind, and very down to earth. He talked to Matthew for a
bit and even signed his guitar. It read: “ Dear Matthew... I Believe in
miracles....Do You?” And he also gave Matthew his guitar pick that he was using
during the concert. He told Matthew... “ you can't play a guitar without a pick
son”. I will never forget that as long as I live...I am sure Matthew won't
forget that either. While in NYC, We did a lot of walking, shopping, and
eating....it was a great time. Someday I would like to go back.
The next
year or so went great. Matthew was doing well. He was going to school and doing
things that all the other children were able to do. Then I met Scott...my
future husband....who later became my ex husband... you don't need those details...
In
October 1996, we had a few incidents of having to pick Matthew up at school
because he had been sick. At the time he had been going to school on Tuesdays,
Thursdays and every other Friday. I
called Matthews's doctor and explained the situation and told her the exact
days that he had been sick. She thought that because he was only getting sick
at school that he might have been stressed at school, but I knew him
better...Matthew loved school. So again she booked another ct scan for him.
The day of
the scan Scott drove us to the hospital. We got the scan over with and were
told to wait in the waiting room for the results. For some reason, Scott had to
leave us at the hospital... I think he had to drive his mother home from work.
While Matthew and I were waiting, there was a girl there with her children. I
can't remember her name, but when Matthew had spent a lot of time at the
hospital, her son was there too. She offered to watch Matthew for me when the
doctor came out and said she needed to speak with me. I was grateful that she
offered to watch him because I knew it must have been bad news and I didn't cry
in front of Matthew and I didn't want him to hear it.
As I sat
in the waiting room all I could think about was being told that if Matthew was
in remission for 2 years that he would be out of the woods. The next month
would be 2 years. The doctor came into the room with Matthew's nurse...and sat
down beside me. My heart sank as she told me that the cancer was back...and
there was nothing left that they could do. All I could do was make sure he was
as comfortable as possible and make every day count. If matters couldn't get
worse.... she said he had 6 months left. I sat there and cried and cried....and
just couldn't stop. I went out into the hallway...grabbed Matthew and held him
in my arms and just kept crying.
I finally
put Matthew down and tried to regain control. The girl that had watched Matthew
said she would stay with me until Scott came back. The doctor had made
arrangements so that we could have hospice come to the house to care for
Matthew. I had made a choice long before then that if it came to this...I would
keep him at home. Scott finally arrived..I put Matthew into his car seat and
cried all the way home. When he finally asked what the doctor had said....all i
could say was that the fight was over.
The next
little while was very difficult for everyone. I always had to pretend that
nothing was wrong whenever Matthew was around. How could I ever tell me son
that he was going to die....I just couldn't.
In
November I got the news that the Sunshine Foundation was going to send the 3 of
us to Walt Disney World..and the sooner the better ..before he got too sick to
go. In December, Matthew started going downhill. Hospice had sent a hospital bed
to put in our living room so that Matthew would not have to go upstairs and I
could always keep an eye on him. He was put on morphine injections, which I had
to learn to administer, along with other medications. Christmas was very
difficult. I put Matthew to bed on December 23 and he woke up on christmas eve
for about 5 minutes. I sat him on my lap and we said a prayer together. When I
was done, I asked him if there was anything he wanted to say... My heart sank
as he said “Jesus tells us when it's time to go to Heaven mommy”. I couldn't
believe it.... he knew what I didn't have the courage or strength to tell him.
I gave him a kiss and held him tight, never wanting to let go. He said he was
tired and wanted to go back to bed. I laid him down and went to my room to cry.
That was the last time I saw him awake until December 26th. I was so
relieved when he finally opened his eyes.
The next
couple of months were very routine. He slept and when he had the strength he
would play nintendo games. Our next door neighbour started a fund raiser for
us. The money that was raised was to pay bills, get medications that were not
provided, or whatever Matthew wanted that would make the rest of his days
happy. But along with the fundraiser came media coverage...which we could have
done without....
Matthew's
dad was still being difficult. He was upset because I would not allow Matthew
to go to his house. In order to keep Matthew at home, I had been trained on
injections and to be able to watch for any signs of deterioration. As far as I
was concerned..it was always me taking care of him and that was the way it was
going to stay. I got a letter from Matthew's neurosurgeon that said just
that.... that Matthew was to be in my care at all times. I was with him in the
beginning and I would be damned if I wasn't going to be there in the 'end'.
Maybe I was being selfish.... but I was entitled. It was me that took him on
countless trips to the hospital, gave him his medicines, waited for test
results, spent months in Toronto and also the one to make the funeral
arrangements.... I was the one that he could count on everyday for love,
commitment and support.
March 28,
1997 (Good Friday) that year. The day started out so great. Matthew woke up,
had breakfast and we actually managed to go for a walk. I put him in his
wheelchair and we walked down to the creek and threw rocks into the water. Even
though I knew he was too weak to carry on a conversation...I knew he was
listening. It was such a sunny, peaceful day.
Later
that day his dad came by. He sat on Matthew's bed and said ' when this is all
over you will get what is coming to you'. I didn't want to argue with him... so
I let him have some time with Matthew. I went next door to my neighbours
house. I didn't even get to tell her
what was going on and her phone was ringing and scott was at the door. I ran
home and was told that there was something wrong with Matthew's breathing. I
knelt beside his bed, held his tiny hand in mine and watched his breathing. He
would take a breath then it would seem like an eternity before he took another.
This went on for another 15 minutes. I just sat there holding his
hand....watching....i wanted to cry...but I didn't want to miss a single
breath. The house was so silent but so full... we must have had about 10 people
there..since it was Easter Weekend and people had come over to see us. Then it
happened.... my little angel took his last breath. I leaned over and held him
tight. Matthew's dad...being the sensitive person that he was said “i'm sorry
but we knew this was going to happen”
I took
Matthew into my arms and sat with him on the couch....his lifeless, fragile
body ....I held him tight and just kept saying ...i'm sorry....i'm sorry....and
I wept.....
