Life: July 2012

TYSON'S STORY

Tyson Murray was one of the gentlest of people. He would make you feel

appreciated and for this you would never forget him. He was a Computer Science

student at Wilfred Laurier University in Waterloo.

In the spring of '99 he began his fourth year of studies in a professional
co-op program working at NortelNetworks in Ottawa. He was to finish work 18 months later in August 2000 and return to Laurier for his graduating year.

But this was not meant to be. There was a silent stalker in his young, healthy body and he succumbed to it on the 7th day of June in the year 2000. He was 23.

His life was a blessing to us, but his death was a warning.

Malignant melanoma, a lethal form of skin cancer, can be stopped

if it is detected early, but once it penetrates the skin to have access to the blood

and lymph systems, there is nothing anyone can do to stop it.

Age has little to dowith surviving this disease. As a matter of fact, it is on the rise in young

people, especially males, as it grows faster in young bodies. It can start, as it did in Tyson,

in irregular or itchy moles. There will be 44,000 new cases of melanoma this year.

Tyson was diagnosed in January of '99. We thought you would like to hear his

story as it unfolded before our disbelieving eyes. It is one of courage, love and

faith.

Discovering the Cancer

Two years ago, in the winter of '98, Tyson found an irritating pimple-like thing on

his scalp, which he picked at while he studied. This seemed nothing more than an

annoyance.

When he came home to Maxville that Spring, he obediently had it

looked at by his family doctor in May of '98. The doctor, not suspecting anything

serious, sent him home with some cream and told him to come back in a month if

it didn't go away.

Tyson left to go to work in Montreal for the summer, about an

hour and a half from home, and since he was not warned it could be dangerous, he

never made it back to the doctor's office. But it was still itchy and bleeding in the

fall when he returned to Laurier. So again he had it checked, this time by a doctor

at the campus Health Clinic. He told him it was a stress point and that he had one

when he was in University and not to worry, but that he should see a specialist as

a precaution and he made an appointment for Tyson.

So Tyson, again, not alarmed, missed the appointment to do a midterm and didn't think of it again until he came home for Christmas.

Tyson was looking very tired and drained. He still complained of this thing on his

head and when we had a look we were startled at what we saw. We called every

hospital in the area to see if there was a doctor on call that would remove it. None

would. Finally our own family doctor saw him and removed it immediately. This

was December 31, 1999. Tyson had to return to Laurier before the pathology

report came back. When it did on January 7, we learned it was worse, much

worse, than a 'stress point.'

Breaking the news to Tyson

Tyson's Dad, Don, and I decided to drive down to Wilfred Laurier, 6 hours away,

to tell him in person that the biopsy revealed that his lesion was 'malignant

melanoma'. Even the sound of it was ominous. It was difficult to mouth the words

as if saying it would cast a shadow of death over the bearer.

We met our dear,unsuspecting son at the 'Second Cup' in the Science Building foyer.
It seemed a cold and impersonal setting for our mission. When we told Tyson what we had

learned, his courage and optimism were spontaneous. He said, "Everyone has to

die sometime and if it’s my time to die, it’s my time and I'm not going to give it

any negative energy." When we found words to answer we said,' "Don't worry,

Honey, we would never let anything happen to you".

Those words, in the end,were hollow words, although we tried vainly to keep that promise. We were at the beginning of a journey we wanted so much to erase. If only we could press

rewind and eject and put in another story. But the movie was rolling and the fight

to win our son's life had begun. What we didn't know at the time was that we were

to win many battles, but in the end, we would lose the war.

The War Begins

Tyson was booked to see an oncologist in Waterloo, the first of a mass of doctor's

appointments. We didn't even know the meaning of the word but were quick to

find out it referred to a cancer specialist. He recommended a 're-excision' of the

lesion area where they take out an extra margin of skin to be sure all the cancer

was removed.

Tyson braved this effortlessly and without a word of complaint

about missing classes, or about the bother of it all. We were elated to know that

the skin they removed was clear of all cancer cells, and that our family doctor had

gotten it all. After a clinical exam of feeling Tyson's lymph nodes, this same

oncologist concluded rather confidently that he had been doing this for 20 years

and he couldn't feel anything and Tyson would be fine, having only a 10% -20%

chance that this melanoma would recur. This was good news and we believed it.

But the depth of invasion of the lesion into his scalp of 3 mm motivated us to seek

a second opinion. Just to be sure.

The doctors at the Princess Margaret Cancer Center in Toronto agreed that this
should be looked at more closely and recommended that Tyson have a 'sentinel lymph node biopsy' to see if the cancer had spread to his lymph nodes. This is a procedure in which they inject a radioactive dye into the site of the lesion and with the use of a special camera

determine into which lymph nodes it drains. This way they can remove only one

or two lymph nodes to see if the cancer has spread. They then remove all the area

lymph nodes only if it is necessary.

In Tyson's case, they put the dye in his upper left scalp and found it drained into two lymph nodes in his neck. Surgery revealed it had spread to both. A death knoll tolled. Panic was getting a grip. We were in a race against time, but we were running in slow motion, like in a dream, that dream where you find yourself on a highway in the path of a fast moving truck,

and you can't move out of the way.

Tyson had to have a 'complete lymph node dissection' to have all 70 or so of the

lymph nodes in the left side of his left neck removed. He had to go through this

during exams. He juggled studying, traveling, writing exams, recuperating with

such aplomb, believing that the medical profession was going to 'fix' him and he

didn't seem too concerned.

We felt we had a reprieve when they all came back negative. This was the middle of
April '99. We had hope. That was the one thing we could give to Tyson. We never spoke
our deepest fears. We never talked about dying. It’s impossible for a mother to talk to her endangered child about the possibility of death. Mothers are meant to protect their children.

The only protection I could give Tyson was an insular attitude of optimism and faith that he

would be okay. The quality of the rest of his life had to be the best possible and at

this point we believed, we wanted so to believe, that it was going to be a long one.

We thought we had stopped the monster in its tracks. But the research I was doing

on the net told another story. Every strike was against him and each new finding

was like a step closer to the grave and my heart was sinking.

He was male. Strike one. The lesion was in his head. Strike two. It was bleeding and ulcerated. Strike three. The mole had begun a vertical growth phase, which is fast and lethal. Strike

four. The prognosis was poor by all accounts, but we just couldn't believe it.

Tyson had to be a medical exception. He was just too sweet, too smart and loved

by so many. There had to be a miracle in here somewhere.

Tyson Fights on all Fronts

Tyson was excited about his job at Nortel, which he started that spring. He

enjoyed sharing a house in Ottawa with friends and coming home on the

weekends to Mondesire, our home in the country, about an hour from town. He

spent his 'new money' on things precious to him, his C.D.'s, his guitar, which he

taught himself to play, his first car, an '86 Volvo, his computer, which he built

himself, clothes and his girlfriend, Kay. He wasn't frivolous, as we found no

wastefulness in his belongings after he died. He was full of enthusiasm, optimism

and the promise of a future that resides in the hearts of the young. He was fun,

loving and never dwelt on his cancer. If it plagued him, no one knew.

He called me his 'Admiral General' and followed our strategies faithfully like a brave young

soldier going off to a war he was confident to win. We fought on all fronts; I, the

researcher, Tyson the decision maker. He did acupuncture, changed his diet for

the better, took cancer fighting herbs and tonics and extra vitamins and minerals,

sought alternative therapies such as health kinesiology, cell therapy, faith healing

and joined a clinical trial. He kept his faith and his friends, exercised and got his

sleep. He believed God was on is side and he was going to be all right. So, Mom,

don't worry.

He liked the way it was, my doing the research, he making the final decisions.

Being a computer person, this surprised me somewhat, but that's the way it

worked for Tyson. I was convinced of the importance of protecting his quality of

life.

Research showed that conventional therapies would leave him in a state of

deterioration, and they weren't effective against melanoma. Every possible

treatment I found for his cancer, I discussed with specialists around the world. I

would present their opinions to Tyson and he would make the final decisions on

his treatment. I couldn't do it. I felt I was playing Russian roulette with his life

and the responsibility was too, too great. So Tyson made those life-bearing, lifethreatening

decisions. And that coveted quality for his life was maintained as he

became more energetic and playful as time went on.

His appearance belied his condition and we were lulled into a false sense that all was well.
We embraced it. That summer and fall we marinated in the belief that the threat was behind us; thelonger the 'so far so good' could last, the safer we were.

The Beginning of the End

In December of '99, life was good. Christmas was coming again. But it would be

a different Christmas, the first without Tyson, an omen of things to come. We had

lived in France when the boys were young teens, and their friends had invited

them over for Christmas and New Years. Tyson's older brother, Damon, 24,

decided to stay home for Christmas and join them all for the celebration of

bringing in the new millennium at New Year's, but Tyson went for both. The

bonus was it gave him a chance to see Kay, who was studying in France at the

time. It was a good decision for him and for his life.

When they returned in January 2000, it was time for Tyson's two-month check up

at the Ottawa Cancer Clinic. Our lives would never be the same. A CT scan

showed the melanoma had found its way to his lungs. He had two small nodules

that appeared as circles on the x-ray. We were unrealistically optimistic that we

could conquer these blights. They were so small, they seemed manageable.

Tyson had to decide whether or not to go on treatment of high doses of chemotherapy

and surgery that the doctor was recommending. Research showed chemotherapy

had little or no effect on melanoma, so it bothered me that it was being suggested

as a possible treatment. Surgery can be effective if there is just one spot of

recurrence, but Tyson had two, one in each lung, plus a few minuscule 'seeds'. It

seemed that he would go through the operating route to little or no avail, but

would be subjected to unnecessary suffering in the process.

When we discussed experimental gene therapy with the oncologist, he eagerly agreed we should

try that first. Since he was agreeing to the experimental over the conventional

treatments, my sense of confidence that we could beat this weakened as I realized

even he had no answers, he too was flailing in the dark. In the unknown territory

of experimental therapies, there was some hope. It could work; it had worked for

others.

Tyson opted for the GP 100 Trails the National Cancer Institute in Bethesda,

Maryland at the National Institute of Health, the largest research center in the

world. If anyone could help him, certainly, it would be the doctors at the NIH.

Tyson had two experimental vaccines, one in mid March '00, the other in mid

April, '00. After his second injection of GP100, he was plagued with severe

headaches. Back in Ottawa, a brain scan showed several suspicious shadows. The

doctors suspected the melanoma had spread to his brain.

We still could not accept the fact that anything could happen to him, although an

insistent fear and a sense of panic played on me constantly on some level of my

psyche. I was determined not to show Tyson this crack in my armor. If I stayed

strong, he would too. This was my greatest and last gift to Tyson. It took all I had

to only show the trust and belief that he would get better, and not to reveal the

fear in my heart of the other lurking possibility.

In retrospect I can see that he was worried for us and he was doing the same thing.
So that ‘last and greatest gift’ was one we gave to each other.

The Big Guns

The doctors at the Ottawa General Hospital now recommended all brain radiation

to shrink the 'tumors'. Although the doctors agreed that what they saw was

melanoma, there was one, the Chief of Radio Oncology, who wanted

confirmation. He wanted to operate and take a biopsy of one of the lesions. So

Tyson underwent surgery on his brain to remove the largest 'shadow,' which they

suspected was a tumor.

After the surgery, they found they had only taken out blood. They could find no melanoma.
We were ecstatic to think they had been mistaken in thinking it had spread. But how could the surgeon think he waslooking at a tumor when it was only blood? The surgeon remarked:
“I made amistake, I should have taken out a smaller one.”

We jumped at the possibility that the gene therapy was working. It was attacking

microscopic melanoma cells and that was causing them to bleed as they died.

After four days of intensive examination under the microscope of the pathologist,

they found a few tiny dead melanoma cells. This confirmed for them that it had

indeed spread.

Under the pressure of medical opinion, we were now agreeing,reluctantly and desperately,
to the only standard therapy they had that might help him. No cure. Just buying time.
Tyson was booked in ten days for the first of five all brain radiation treatments. We were told the only side effects would be a slight headache, maybe lose his hair and he would be tired. The impact on the quality of his life would be minimal.

If you could have seen Tyson on that Tuesday, May 16 at 130 in the afternoon as

he walked into the Ottawa Cancer Clinic for his first radiation treatment, you

would have observed a healthy, strong young man, full of trust that we were

helping him. No one would know by looking at him that his left foot had a

nagging numbness, or that his tongue felt funny. Our lives which had seemed like

a bad dream up to now, turned into a nightmare.

After his treatment, which took about 5 minutes, we left the hospital and drove

around Ottawa to do some errands instead of driving directly back to Mondesire. I

noticed Tyson became restless and I asked him if he was okay. He struggled to

swallow and find words, and asked , “Mom, look in my eyes.” I anticipated a

hint of fear, anxiety, pain; but what I saw instead was a divine expression of

overwhelming love, peace, joy. He smiled. If there is a God, he was looking

straight at me. I smiled back, absorbing this moment so I would never forget it.

Finally, I put my arms around him and held him close. I didn't know that that

would be the last time I would see Tyson. I didn't know he was saying good-bye.

His behavior became more agitated and his eyes more staring. We immediately

turned the car around and headed for the hospital, not at all prepared for what was

to happen next. He arched his back, went rigid and turned a blue unnatural to

skin. We didn't know he was having a grand mal seizure. We thought he was

dying. We thought they had killed him.

I jumped into the back seat as Don drove frantically through the traffic back to emergency.
I took Tyson's face in my hands and screamed his name. When the seizure was over, I automatically blew air into his limp body, believing, hoping, praying, that he would come back. The next thing I remember, we were squealing into the emergency driveway, the door

open, we called for a stretcher. They did all they could to stop him seizing. I was

reeling; the room was spinning. I groped for a chair and sat down. Why isn't he all

right? What's happening? Questions, questions and more questions.

Tyson Fights for his Life

Tyson never left the hospital. They kept him in for observation overnight and

continued the second radiation treatment the next morning. After the second

treatment Tyson began a precipitous decline, which baffled us. Why were they

continuing a treatment that seemed to make his condition worse? Was it the

radiation that was causing him to be sleepy and eventually immobile??

By the third treatment on Thursday, Tyson couldn't get out of bed and wanted to sleep all

the time. Speech was laborious. But, nevertheless, they rolled him in for session

four on Friday. That day Tyson's gentle blue eyes seemed round, staring and dark.

He scowled, an expression not at all typical of our sunny boy.

Later that afternoon the doctor suggested we take a break from our 24-hour vigil, and go out

of the hospital. Don's mother had invited us for dinner so we agreed to go. Tyson

was sleeping. All seemed calm. I whispered, “I love you” in his ear, and we left.

When we arrived at her apartment, I felt uneasy, and called the hospital to have

someone check on Tyson, a doctor, please.

We ate and quickly returned to the hospital. When we arrived back on the ward, all heads at the reception desk turned to look at us. As we approached his room we caught a glimpse of a

swarm of doctors around his bed, one of whom came out to meet us. "If we don't put

your son on a respirator, he will die. Considering the nature of his disease, you

have to think about what it means to keep him alive."

My soul was slain with these words. I couldn't feel any muscles or bones. In the delirium of the moment, it was Don who asked that they keep him alive at least until tomorrow when the

family could gather.

We cancelled the 5th radiation treatment that they were prepared to go through with the
next morning. If they couldn't see this wasn't working, we could. But that's about all we could figure out in this madness.

Tyson was moved to Intensive Care and plugged into a breathing machine. His life

literally hung on the end of a plastic tube.

Damon arrived from Portage La Prairie in Manitoba by car that night, more driven

by intuition than knowledge of the danger Tyson was in. We tracked down

Brandon, Tyson's 19 year-old brother, who was at friends in Maxville. His

buddies, Pat and Ian didn't hesitate to drive him to the hospital at two o’clock that

Saturday morning.

We spent the night at his bedside, taking turns to catch a nap on the couch in the lounge. Brandon's friends stayed with him for three days to watch over Tyson as he struggled for his life in Intensive Care. Tyson was coming around. Some doctors said it was the effect of the radiation that made him sleepy and unable to move and it would wear off. So we waited. And waited.

Day 1. Day 2. Day 3. Day 4. Day 5. It became apparent that he was not going to improve and

that whatever effect the radiation had, it was not going to go away. CT scans and

MRI's showed the tumors in his brain had not diminished, but there was more

bleeding. Back to the ward and falling into the end of week two.

Tyson Faces Death with Courage

These days were a blur. Many concerned and heart broken friends and relatives

came and went. He told his friends he loved them and assured us that we had been

excellent parents. As he lost his mobility more and more, we had to feed him with

lots of hugs in between. He never lost his positive attitude.

The staff suggested he was afraid. So I asked him, "Tyson, are you afraid?" He answered,
"Of what?" That told me he thought he was going to get better and walk out of there.

If he did have a fear that he did not feel comfortable to share, I wanted to give him

some way of dealing with it, so I told him that in my hours of anxiety, I would

think about the difficulties that other people were having and maybe say a prayer

for them. That would help me not feel so bad about my problems. He turned it

around and answered, "That's my Mom, always caring, always nurturing, always

loving me."

He minimized his suffering. When Damon told him he was 'doing a

fine job', he answered, "Doing what?" One day I asked him why he was moaning.

He said because he couldn't move. I sympathized and said it must be so frustrating

for him. Words escaped me when he answered, "It could be worse." I thought to

myself, how could this be worse? But since then the truth in these words have

been a comfort to me and I realize how wise he was. His positive nature showed

itself in his manner and when he spoke. When someone would come to see him,

they would ask how he was doing. He always smiled and replied, "Not too bad."

What a question. What an answer!

About this time Kay returned to St.Catherine's, Ontario, from her studies in

France. Several of Tyson's friends were coming up from Waterloo to see him on

the Saturday before he died, and they gallantly went out of there way to pick up

Kay in St. Catherine's to bring her to see Tyson. This, at 6:00 in the morning. It

was just in time as that Saturday, the 3rd of June, was the last day that Tyson was

conversive enough to visit. But it was a good day with lots of laughs and lots of

love in the room.

Over the next couple of days, his condition worsened and he

needed more and more morphine. He talked less, slept more and drank water

incessantly. We were grateful for the cot the staff had put in the room as it

allowed us to be with him constantly. But when his friends came, we would leave

so they could have their time together. It was hard to share him with so little time

left.

We slipped home to Mondesire, which was to be his last Sunday, to bring him

some of his familiar belongings to warm up his room. We excitedly returned with

a large print he had recently purchased. We stood at the end of his bed, saying,

‘Look, Tyson, look what we brought for you!” He looked in our direction, and

said, “I can’t see it”. So we moved it closer. He repeated, “No, I can’t see it.”

We felt fear travel in our blood. “Tyson, look out the window. It’s a beautiful

day! What color is the sky?” “It’s black.” Tyson was blind. He hadn’t told us.

He was protecting us. Oh, Tysie, Tysie, Tysie!

Two days before he died, his oxygen levels began to drop. He was given an

oxygen mask, which he despised. His nurse, Carla, who was also blond

and pretty, was so overwhelmed with the sadness of the situation, with Tyson dying
and the family there 24-7, that she was removed from his case. Carla and Damon made an important connection in the weeks that followed.

Good-bye Tyson

When Damon and I came off the elevator at the fifth floor in the early morning

hours of the 6thof June, we bumped into the Doctor who was shaking his head,

saying, "Just let him go." I remember walking into Tyson's room, Don there by

the bed.

Tyson had a large breathing contraption strapped to his head, which was

pushing oxygen into his lungs. He said, "This is unacceptable", so we removed it.

His heart was racing and I could see it pounding through his hospital gown.

I had to calm him down before it burst.

I lay down in bed beside his motionless body and took him in my arms. With Don on his other side, I began whispering in his ear, as slowly and softly as I could, words to calm him, stroking his heart ever so gently. His heart began to slow bit by bit, moment by moment. I felt he was

listening. It was working. He was settling down. But as I lay there watching him, I

began to realize that his heart was continuing to slow. Seconds later we heard a

sigh, then another. And no more. We held our breath, witnessing the unbelievable.

The moment was frozen in time. Don, Damon and I held Tyson and waited. He

was gone.

We stared at him. He looked so completely at peace. Was that a smile

on his lips? Looking at him, I was sure he was completely healed and he'd get up

out of that bed and leave the hospital, forever. But he didn't move. I pressed my

cheek on his temple and fell into a sleep. It was as if we were together,

somewhere in the deep recesses of spirit, hanging on before the final letting go.

After what I thought was a few minutes, I opened my eyes. There were other

people in the room. Why were they here? How long had they been there? How

long had I been lying with Tyson? Three hours. It was 7:00 in the morning, June

7, 2000. I pulled myself away from his limp body and Don, Damon, Brandon and

I left the room and the hospital that had hugged our dear son for exactly three

weeks and walked outside to watch the sun rise. This was the last day we had

Tyson, and it was the first day of our new family and our new life. Tyson had

been reborn and so had we.

We wondered how the sun could shine on this day, but in the end we agreed with Don that it was a beautiful day to die. We stayed close to each other and let our tears speak the unspeakable, and our hearts feel the unthinkable.

We returned to that hospital room to face the reality that he really had gone. We

didn't want to leave him. Finally, however, when his hands became ivory white,

we were certain he was with the angels and we left him with that beautiful

expression on his face. Our son, our lovely boy. Don said he was always an angel,

he just fell out of Heaven a while back by mistake and when God finally found

him, he called him home.

‘Tyson Murray Kind Spirit Award’

Tyson's spirit was so full of love for others, compassion, gentleness, kindness and

peace, we could not let it go unrecognized. It came to us that we should have it

live on in the form of an award. It would be for the student at graduation who

most exemplifies Tyson's traits, an award for the nicest of people.

We wanted it to be the largest monetary award any student could earn. So we established the

"Tyson Murray Kind Spirit Award” to go on in perpetuity at his high school,

Tagwi Secondary School, in Avonmore, Ontario. We hope to raise at least

$20,000.00 to ensure an annual award of $1,000.00 for the Tagwi graduates.

Tyson’s award is in several local public schools besides his high school, Tagwi

Secondary School in Avonmore, Ontario. It is in Maxville Public School,

Maxville, Roxmore Public School, Avonmore, North Stormont Public School,

Berwick, Long Sault Public School, Long Sault. It is also in Bolton, Ontario, at

Macville Public School.

Wilfred Laurier University granted Tyson his degree posthumously in the fall of

2000.

Damon married Carla in 2001 and by 2006 they had three children, Joel Tyson, Ella Jane and Charlie Ian Potter. They separated in January 2011 and Damon tragically drowned in

July 2011 at his father's wedding at the age of 35.