No Parent Should Ever Have to Say "Good-Bye"!!!!

by Laurie Leveille
(St. Catharines, Ontario, Canada)

Clayton in Mexico, July 2010

Clayton in Mexico, July 2010

On what should have been his 22nd birthday, there is no cake, no presents and no future. My stomach is twisted tight, my eyes are glistening with tears and my heart is broken. My son will never be 22. His life was cut short in his prime and we still don’t know “why”.

It’s hard to believe that we can send people to the moon, communicate with others across the world and even fly like the birds but we can’t save a young man’s life. In fact, we don’t know why he lost his life. For over seven months, my son endured countless blood transfusions, tests and worst of all, excruciating pain. No one could help him.

Our nightmare began in July of 2010. Clayton and his girlfriend Rikki were off to vacation in Mexico after a long hard term at school. With their life heading in the direction they wanted, only positive images could fill our minds. Unfortunately, this was not to be. By the third day of their vacation, Clayton wasn’t feeling well and a high fever developed. We convinced him to go to the doctor at the resort. Before we knew it, Clayton was admitted to Hospiten Cancun. They believed that he was infected with Dengue Fever. This virus would cause extremely high fevers, decreased platelet counts and excruciating bone pain. It is known as the bone breaking disease. The doctors believed that time was needed for Clayton’s fever to decrease and the pain to pass. Day after day, the fever remained; his blood counts continued to drop and still the pain remained. The second week brought no improvement.

At this point, I believed that the doctors had misdiagnosed our son. They still wanted to believe that it was Dengue Fever even though all the tests came back negative. I on the other hand, believed that it was a full blown version of an undetected medical condition which he had been suffering from since grade 10. Around this time, Clayton was taking some acne medication prescribed by a dermatologist. Shortly after, we brought him to the emergency room every night for an entire week. The doctors could not figure out why he had severe abdominal pain so they sent him home each time. Finally, by the end of the week when his liver was showing signs of failure, they brought in a specialist. Although we had informed them on the initial visit as his chart indicated, the doctor wanted to know if he was taking any prescribed drugs. We mentioned the acne medicine. He was convinced that this was the cause of the liver problem and had Clayton stop taking the medication. He, however, had already done so a week earlier. Since the liver was the organ which was affected, there was nothing he could take to speed up his recovery. Clayton endured months of pain and sleep became his only source of healing and comfort. At this time, he was home schooled by two of his teachers so that he wouldn’t lose the year. Clayton entered grade 11 the following September. By the new year, he began struggling to get to school. His normally high energy level was
quickly being depleted by early morning. Often Clayton couldn’t even drag himself out of bed. Returning to the doctor, he was diagnosed with mononucleosis. Once again, his education was affected by medical reasons. Somehow, Clayton managed to get through the year advancing to grade 12 in the fall. He continued to struggle with sleeping issues for the remainder of his life. Visits to the doctors for testing could not explain his lethargy. He even visited a sleep doctor to determine if the problem was related. Nothing could be diagnosed and Clayton continued to get flu-like symptoms month after month. At these times, he would sleep for over 20 hours a day until the flu passed. It was hard to believe that any one person could consistently get the flu once a month. In my eyes, Clayton’s health followed a monthly cycle. He would be fine for three weeks and then the fourth would bring on an illness. Even dealing with these health issues, Clayton managed to hold down a job and university at the same time. He struggled to balance his life with his sickness. Clayton was determined to succeed.

Although I believed that Clayton’s illness did not begin in Mexico, no one wanted to hear what I had to say. After weeks of continual decrease in platelets, hemoglobin, white blood cells and a constant high fever of 102-104 degrees, everyone was extremely concerned. In order to lower his temperature, they held him in an ice cold shower for 40 minutes multiple times throughout his stay. This image tortured my son through reoccurring nightmares. Ultimately, it resulted in a fear of water. By the third week in Mexico, the doctors wanted to perform a bone marrow biopsy. Although my son refused it, they told his girlfriend that he would die without the procedure. Panicked, Rikki phoned us absolutely hysterical. We had already booked a flight to Mexico for the next day. Throughout this ordeal, my husband had tried unsuccessfully to get Clayton back to Canada. The insurance company wanted the same since his claim was increasing to record highs. We were continually informed that there were no beds in an Ontario hospital for our son. Our medical system gives first priority to Canadians who are in the country. Clayton was at the bottom of the hospital waiting list. Our entire family just wanted him home.

When we arrived in Mexico, we found Clayton in ICU. He was only allowed one visitor for 10 minutes, twice a day. If you missed the scheduled visiting time, you would have to wait for the next time slot. Clayton was in a small room which contained basically just his bed and medical equipment with barely enough space to move around. There was a single window which the nurses used to view the patient. Other than the 20 minutes visiting time per day and the occasional nurse or doctor who checked in on him, Clayton was alone in a strange country without any contact. He didn’t know where Rikki was, he couldn’t communicate with us nor did he know his medical prognosis. Our son was isolated from the world and he was terrified. As far as he was concerned, he was no better off than a prisoner in another country. If it wasn’t for our constant pressure, Clayton would have remained in Mexico until the day he died. Once we arrived, we were horrified to find Clayton so ill and so alone. Appalled by his care, my husband contacted the insurance company handling his case and insisted that he had to get out of Mexico if he was to have any chance of survival. Of course, Canada wanted nothing to do with him; he was just a Canadian citizen. In the eyes of our country, there was no room for him in our medical system. Although we pay taxes, once you leave the country, Canada does not view you as one of their own. Why would we think otherwise? Knowing this now, we’ll think twice before we vacation outside of Canada.

Finally, we got good news. A bed was waiting for Clayton at the Cleveland Clinic in Weston, Florida. It was nice to know that the United States would come to our aid before our own country. Up until this point, we believed that we were privileged to be Canadian citizens. Surely, we aren’t the only ones who will now question our government. How is it possible that people from other countries can find a place in our health care system when a Canadian citizen is turned away?

Comments for No Parent Should Ever Have to Say "Good-Bye"!!!!

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Nov 03, 2012
My daughter died of aml
by: Rachel

Our darling daughter, so full of life and promise had a flu like bug for 2 weeks. She lacked energy, had watery eyes and sniffles. It was thought she had glandular fever. Unhappy with this we took her to the doctors on Thursday 18th of October 2012. That evening she was diagnosed with leukaemia, which was confirmed as aml on Friday morning, by which time she had gone to sleep, never to wake up. She died in our arms on Saturday the 20th of October, the worst 48 hours of our life. Our beautiful Pollyanna had gone. We miss her so much it hurts, but have been privileged to known and loved her, and she knew how much she was loved.

Her brother, daddy and I know life will be very different without her, but want to honour her memory xxx

Dec 09, 2011
My precious daughter died from AML
by: Karen

I am a heartbroken Mom.
I lost my daughter to Acute Myleod Leukemia, and she didn,t even go into remission to even have a chance Bome Marrow Transplant.
I dont understand how there are so many young people that get this disease.
She had two rounds of Chemo..Induction, then Selvedge..last one all it did was make her so sick and nauseated. She was diagonised July 19th and died Nov 12 2011..

I have a huge gaping hole in my heart, miss her so much, she was my best friend, and I loved her to death. She was the sweetest, kindest girl..and is so wrong and unfair, I would have changed places with her in a heartbeat, so she could go on living.

I want her back with me..but no thats not possible..

My heart goes out to all you parents..we are all in a club, that we never wanted to be apart of.

Victoria BC

Jun 27, 2011
I agree...we should NOT have to say good bye
by: Shirley

Reading your posts about your son was almost like reading a chapter of my son's life. He was a very healthy kid. Going to college, coaching basketball, very active social life, lots of friends....everything going great in his life. Three weeks after he turned 21 he started to complain of left sided pain and nausea. Three days later he was in full liver failure. We never got a diagnosis. Spent three months of misery in the hospital trying to save his liver. He was given lots of medications that made him sicker. He was bloated and yellow and miserable. Finally he got a liver transplant. We thought the bad part was over...but we were wrong. In the middle of his fight to save his liver the doctors noticed he wasn't producing white and red cells and platelets like he should have. They brushed it aside in the battle to save his liver. Once we got home everyone thought the bone marrow would heal. It didn't. We had to go to the hospital twice a week for blood and platelet transfusions. He had no immune system. He kept getting infections and we were in and out of the hospital. One infection, ten weeks after his transplant, caused him to go into septic shock. He was on a ventilator for 8 days and they had to remove part of his large colon. He woke up intubated with a bag on his stomach. Six months of dealing with that awful bag followed along with the transfusions and more infections. Still no diagnosis. They finally called it "aplastic anemia" but had no clue what caused it. Finally on May 28th, 2010 we got the horrible news that he now had acute myeloid leukemia. He was admitted to the hospital and never left. He celebrated his 23rd birthday in the hospital and died 27 days later. I said no to an autopsy. I didn't think that they would find an answer and I couldn't bear any more damage to his body. I knew the answer wouldn't bring him back. His siblings are devastated too. They are in shock and don't understand why he died. None of us will ever fully recover from this. It was two years of total hell and in the end he died anyways....

Jun 27, 2011
so sorry
by: Anonymous

My son too suffered from a mysterious ailment. He had just turned 21 years old and started to complain of left sided pain and nausea. Long story short...he was in liver failure and finally needed a transplant. No one could figure out why. Next his bone marrow failed. He required transfusions of blood and platelets twice a week. A one hundred mile round trip each time. He went into septic shock and lost part of his colon and had to live with an ileostomy bag for six months. Still no diagnosis. Finally at this time last year he developed acute myelogenous leukemia. He died August 9th, 27 days after his 23rd birthday. He suffered terribly for two years and still, to this day, we have no explanation. He was a great kid, going to college, coaching youth football, had great friends, was going to be a cop with LAPD....a real straight arrow type of kid. I am so broken hearted and I will never understand why this happened.

Jun 27, 2011
No Parent Should Ever Have to Say "Good-Bye"
by: Laurie Leveille

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