Articles

Living the Nightmare

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Every mother wants for her children the best that can be offered. We want them to be happy, want them to learn, to grow, to experience, to love, and to be healthy. We imagine our children will have all these things and experience all these things and be healthy…BUT what if that isn’t what happens?

Just imagine for a moment. Imagine you are with your beautiful two-year-old child sitting in an emergency room wondering what on earth is going on. Wondering why your sweet angel seems to be suffering, wondering what possibly could be ailing your perfect little one. The loud speaker is ringing, there is hustle and bustle in the halls, there are many ill children waiting with their parents, waiting to find out what is causing them their distress and waiting for a solution.

Now imagine that you are being told that your child's aches, pains, fever and low energy are all the result of a horrific disease, a disease we all dread. Yes, the big one, CANCER! Now imagine this is no longer a scenario, no longer imagination but a hard cold reality – the biggest, most terrifying punch-in-the-gut of your life. This was our reality and this is our storey, our journey of living the nightmare.

My son, Dallin was a brilliant child. He was able to speak in complete and full (proper) sentences when he was just a year and a half old. It was about that time when he suddenly became fearful at intermittent times. He would shake in fear and clutch onto me and cry. It was always the same, always a fear of the "scary lion" coming to get him.

Children sometimes have fears and things that we do not necessarily understand, imaginary friends, fascinations and things. I racked my brain thinking this was something from TV…but I censored everything he watched. I knew all of his books. I thought it must be something he had heard or seen and I did not realize it.

I spoke to everyone who had contact with him and no one could make sense of his lion reference. During these episodes, I kept telling Dallin that I would protect him, I would fight off the scary lion and he need not worry. Dallin always trembled more as he would cry and tell me, "Mommy, you can’t save me from the lion."

I tried everything but this seemed to come and go at the oddest of times so I prayed and hoped that it was just a phase and it would soon pass. Little did I understand the intuitive vastness of my son’s fear.

Dallin was one year, 9 months old when he innocently tripped over a small stool while visiting my parents out east. He had been suffering a cold at the time and although he cried for a short bit, he seemed to have little issues with the fall and was back playing with his stacking toys in no time.

That night we went to bed as usual. I was awakened at midnight from Dallin's screams. He was burning up and he seemed to be in a great deal of discomfort. When I took him out of bed, he would not put any pressure on his left leg and he kept grabbing at it so off we went to the hospital.

The doctors took a look at my son and suggested he may have just bruised himself badly in the fall. They did take some x-rays and gave him a good once over, but in the end it appeared their initial diagnosis was correct and off we went back to my parents.

Within 24 hours Dallin seemed to be back to normal. Life was good and all was fine for about a month. All of a sudden Dallin came down with another cold and that night he awoke with the same blood curdling screams and the high temperature.

We packed him up and off to the hospital we went. This time the doctor commented on his complexion and asked if he normally was so pale. I had thought nothing of it since I am pale skinned so we did not venture down that path.

After hearing of Dallin's mishap while away, this doctor did some x-rays and gave Dallin the big once over. The conclusion was the same. Nothing wrong, go home, rest and treat the fever. Dallin seemed to have issues putting pressure on his leg for two days but then it mysteriously vanished and he was back to his smiling, giggling self.

Again, life returned to normal for about another month until once again Dallin woke in the middle of the night with a high fever and crying in pain. Off we went yet again to visit the hospital to try to find some answers.

Dallin was a true trouper. By this time he knew exactly what to expect from the ancient looking torture device they put toddlers in to take rays. Have you ever seen these things? They are horrific and the site of them alone would scare the heck out of you. This time though, he was also weaker and seemed to have less fight. After the same once over happened for the third time we were released without a true answer as to what was causing this to occur. When we got back home it took three days for Dallin to be able to walk and put pressure on his leg again.

I began to ask more questions. I asked around and checked with some nurse friends and tried to do some research as to what this could be that was debilitating my child for these short episodes. There was some speculation about growth issues and bruising in the leg etc. In the end nothing felt like it fit.

My intuition was screaming at me that this was far more then growing pains. I felt this was a lot bigger then we had imagined. I called my family doctor (who had been following the situation all along) and asked to come in to see if we could get to the bottom of this. I hated to see my son suffer and I wanted answers.

Of course, getting in to see a family doctor often takes weeks. We ended up securing an appointment in about two weeks. As we waited for our appointment Dallin's health seemed to decline. There was nothing I could put my finger on but he seemed weaker, less joyous, and less active. On the morning of our appointment Dallin was truly not himself. I was glad we were going to see our doctor and get him some help.

By the time we got in to see the doctor Dallin appeared even paler and weaker then ever. The doctor took a look at him and suggested he was simply fighting a virus. I started to lose my composure and demanded that she send us to a specialist or Sick Kids hospital. I was not allowing another day to go by without a true answer as to what was going on with my child.

The doctor made some calls and assured me it was likely nothing but did secure a meeting with a pediatric specialist at the local hospital within one hour. Off we went to the hospital to wait for the specialist. As we were waiting we watched our child completely deteriorate in front of us. He could no longer hold us his head, was having difficulty breathing and was almost lifeless.

The specialist finally came along to see us. She took one look at my boy and rushed him off for testing. Believe it or not, she was the very first person (in about a half dozen different doctors) to do a blood test. Results were back within about half an hour and we were being rushed off to Sick Kids with a possible diagnosis of childhood arthritis.

We arrived at Sick Kids, by-passed the waiting room and were instantly seen by three different doctors. We were drilled with questions and all sign pointed to a diagnosis of rheumatoid arthritis. They prepared us as best they could with the realization that this was a life-long illness but very treatable. The doctors explained that Dallin's hemoglobin was critically low and he would have to stay over night for a blood transfusion and further testing. They asked us to wait while a room was prepared for us upstairs.

We were absorbing the vastness of this horrific diagnosis when another petite Asian woman entered the room and introduced herself as a "hematologist" not 45 minutes later. She told us she was there to explain Dallin's blood test results to us. I was puzzled. I told her that we were already spoken to and reiterated what the other doctors had told us. I told her we understood and would need more information but that it seemed quite clear for us as to what needed to be done.

Her face went cold for a moment as she paused to take a deep breath. That is when I realized there was something even more terrifying about to be delivered to us. Out of this woman's mouth came the words, "I am so sorry to have to tell you this but your child does not have arthritis. This is far more serious than we initially expected." She continued with, "The good news is that what your child has is treatable."

"Treatable?" I thought, "Am I hearing her right?"

The lady reiterated, "Yes, treatable."

And then came those dreaded words no one ever wants to hear: "Your child has leukemia."

My mind was racing. "Leukemia? Isn't that CANCER?" I asked.

"Yes, I am so sorry but that is exactly what it is," replied the woman. I stood there staring at my little angel. God, could this adorable little being of mine actually have Cancer? All colour faded from my face and all feeling emptied from my body. The doctor left my son and me alone. I turned to him, held his face in my hands. I was dumb founded.

I asked him, "Dallin, you have cancer?"

Dallin looked me straight in the eyes, so strongly that I felt his stare hit the depths of my soul and he said, “Mommy, the scary lion is here.”

Dallin is now 13 years old and 8 years off treatment. I am thrilled to report he is doing well with only minor side effects from the wrath of the evil we call chemo. It is a two edged sword. It cures and it takes, but that is how it works. It must kill all to cure, and thankfully, in Dallin’s case. it did. He is alive because of it.

We see every day as a blessing, every day is a gift, and every day is an opportunity to experience, learn, grow and love. Every day I thank God for my angel, for the beauty of his soul, for his courage, for his love and for his teachings. What he has endured is vaster and more horrific then anyone I know. He is truly my hero.

Sheila Trecartin, Dallin’s mom