No Parent Should Ever Have to Say
by Laurie Leveille
(St. Catharines, Ontario, Canada)
With our son finally closer to home and in a prestigious medical facility, we were excited to think that soon Clayton would be on the road to recovery. After repeated tests, more blood samples and new tests, Clayton was still far from healthy. The doctors were baffled. Never before had they seen a case like this. Clayton just didn’t fall into any known disease. His platelets fell below 10,000 from over 200,000. At this point, he urgently needed platelets since it was possible for him to hemorrhage spontaneously. With his platelets so low, Clayton would bruise from being touched or even from moving. His nose and gums would bleed. His daily blood samples would cause bleeding at the needle sight and it could take hours to stop. Clayton was a very ill young man. The doctors believed that a bone marrow biopsy would certainly shed light on his illness. Although Clayton knew that the biopsy would be painful, he wanted to find out what he had once and for all. The bone marrow was obtained and sent off for testing. Slightly less than a week later, the results were in and they had no clue what was going on. Clayton’s bone marrow was completely empty. He had been tested for leukemia and it had come back negative. Nothing could be found from the biopsy. All of Clayton’s blood counts would fall. This was unusual. Normally, if the white blood counts dropped, the red blood count would remain stable. No one had ever seen this scenario before. After three weeks at the Cleveland Clinic, they were no closer to a diagnosis than they were on the first day. The doctors could tell us what he didn’t have but they couldn’t tell us what he had. The fear that engulfed Clayton was unimaginable. Once again, he wanted to go home. My husband re-embarked on his mission to get Clayton into a Canadian hospital. Although three weeks had passed since his last attempt, Clayton was still not any closer at getting home. Not being able to come up with a diagnosis after a month and a half, we wanted to get him into a research hospital in Hamilton or Toronto. We believed that this was his best bet since our local hospital would be limited to the types of testing and research which could be done. Unfortunately, this was not going to happen. Fernand contacted a friend, Bill Phillips who was an MP for St. Catharines. When Clayton was at Power Glen Public School, Bill was the principal there. He knew our family and was eager to help. After a few days, he managed to get Fernand a contact. Through this woman, Clayton was finally allowed to come back to Canada and into the St. Catharines General Hospital. We were ensured that it was in Clayton’s best interest to get him home first and then they would work at getting him into a research hospital. How wrong we were!
Apparently, a patient must first go to his local hospital for care. Only when this hospital has exhausted all its avenues to treat a patient can he be sent to a terserary hospital. At the St. Catharines General Hospital, Clayton was put into the care of Dr. Levesque. He was a wonderful, caring doctor in charge of hematology and oncology. He too performed many tests and was just as lost as the other doctors for a diagnosis. A family friend, Sandy Bolyki is a nurse at Princess Margaret Hospital in Toronto. When she heard about Clayton’s case, she believed that he had some form of leukemia. Working in the oncology/hematology ward, she brought Clayton’s case to Dr. Schuh for consultation. Interested by what he read, he agreed to see our son in hopes of finding something. On the day that Clayton visited Dr. Schuh at Princess Margaret, his platelets miraculously increased to 40,000. Both Dr. Schuh and Dr. Levesque believed that Clayton must have had a virus of some sort which he finally managed to fight. As a result, they believed that he was on the road to recovery. The next day, Clayton was released from the St. Catharines General Hospital and at last, he came home. He was overwhelmed by his home-coming and could not believe that his nightmare might actually be over.
Clayton’s hesitation to accept a positive outcome became obvious very quickly. After a few weeks of increasing blood counts, his bubble burst. Just as he believed, the illness had returned. With fevers of 104, an almost non-existent immune system and drastically reducing platelets, Clayton was re-admitted to the hospital. His good fortune was short lived. Before we knew it, Clayton was once again receiving platelets and red blood. As an outpatient, he returned to Princess Margaret every second week. Dr. Schuh monitored him and once again, Clayton seemed to be winning the war. His fevers were basically gone and his blood counts were nearing healthy readings. Again, Clayton returned home.
On one of Clayton’s visits to Princess Margaret Hospital, he was given another bone marrow biopsy. The results of this one were a little short of amazing. His bone marrow was 100 per cent full. This is not possible. A person’s bone marrow is only ever 50 per cent full at any one time; Clayton’s was double. The more Dr. Schuh monitored Clayton’s illness, the more confused he became. Clayton had been tested numerous times for different types of viruses. Dr. Schuh could not understand why the results for Epstein Barr Virus and the Parvo Virus were coming back negative since everyone should have some form of each. The doctors here decided to check for these viruses using DNA. With this form of testing, it was found that Clayton had 32 times the accepted amount in his system. The original method of testing based on antibodies in his blood came back negative. Once again, Dr. Schuh was dumb-founded. Since it was deemed that Clayton had an over abundance of both EBV and the Parvo virus, he was put on an anti-viral medication in hopes of eliminating them. This medication proved to be very hard on Clayton’s system. He was in constant pain, his blood counts began to drop again and his fevers returned. After a visit to Princess Margaret, Dr. Schuh determined that the Parvo Virus was eliminated, however, EBV had increased.
The side effects of the anti-viral medication were taking their toll on Clayton’s body. He wanted desperately to stop the medication but Dr. Schuh believed that if he could hang on just a bit longer, it might be enough to eliminate EBV. As difficult as it was, Clayton hung on for almost another week. One afternoon, he called me to his room. I could tell by his voice that something was wrong. He was lying in bed with blood coming from both his nose and gums. This medication was taking its toll on Clayton’s body. After informing Dr. Schuh about his current condition, he stopped taking the drug and returned to the hospital. His health had declined so severely that he was re-admitted. Platelet and blood transfusions were administered. Nothing seemed to be helping. Concerned, Dr. Levesque consulted with Dr. Schuh. They both realized that Clayton needed to be at a research facility. His illness needed to be studied and monitored closely. Try as they might, neither doctor was able to get him to a specialized sight. According to our health system, a patient must be diagnosed to be transferred to a different facility. Clayton was falling through the cracks and as a result, he was paying the price.
In this day and age, how is it possible that no one would be able to diagnose our son? We just could not believe what was happening. Clayton was losing the fight. We didn’t know how he was going to be able to hang on since his body was so beat up already. A week before Christmas, Clayton developed pneumonia. How was he going to get through this? His blood counts were so low that it was almost impossible for him to fight anything let alone pneumonia. If this wasn’t bad enough, his lung collapsed. Clayton was fighting for his life. It was so hard watching him struggle to breathe. The suffering he was going through was unbearable. On Christmas Eve, he was finally being accepted by the Juravinski Hospital as a patient in ICU. Here, the doctors told us that Clayton had done enough waiting; it was time to do something. We were certain that a miracle was going to happen!