Thu, Apr 12, 2012
We left Killam and traveled to the Camrose Hospital. When we arrived at the front desk – I barely got my name out when the receptionist told me that she had been waiting for me, and to follow her. Again, we entered a Hospital waiting room full of waiting people, and before we could even sit down, we were ushered into a private room. There the pediatrician looked at Chad’s ankles, wrists and eyes and said, “Your son has Juvenile Rheumatoid Arthritis.” Anger swept over me as he so coldly and so blatantly made that statement. I thought, how could he know that by such a simple observation, but I would guess that all the test results had been sent out to him during our wait, and drive from Killam.
Chad was immediately hospitalized. There he was given iron in liquid form, which he had to drink 3 times a day. He was also given large doses of Entrophen; namely 2 adult coated aspirin put into one dose every 4 hours around the clock. The dosage was so high for my 10 year old boy it made his ears ring and was painful for him. The pediatrician told us Chad was gravely ill and while in the hospital Chad lost his ability to walk. On one of our visits, we were taken into a private room and told by the pediatrician that Chad would never walk again and would probably not improve in health. Three times the doctor emphasized to us that Chad would not walk, with each time looking at me saying that I should cry now. He said I should acknowledge and let it register with tears, that this is how it is going to be for your son. Again I was very angry, and although I felt like crying, I stared at him and stubbornly would not cry, I repeated in my head, “you are not God!”
After about a 2 week stay in the hospital where they really couldn’t do much more for him nor the JRA, except administer drugs and iron, Chad came home. We kept up his drug regime, and I had been taught to do the stretching exercises, which would hopefully keep his joints limber. From his school teachers, I got the basic school assignments for him to do at home, hopefully Chad would not fall behind in class. Daily, we faithfully did his exercises, praying and anointing every joint with oil as we did them. I carried him everywhere as he could not walk. I received wonderful support from one of Chad’s school friend’s mom and a few ladies from our church, for which I will be forever grateful.
An appointment was made with Dr Russell, the top Rheumatologist of Canada at the Glenrose Hospital – for sick children. There we learnt that JRA involving 2 joints was serious, 3 joints very serious, and 5 joints very rare and extremely serious. In time, possibly years, the RA could spread to other joints if it was not contained by treatment. He said Chad had had an extremely rare case of JRA, where every major joint and most minor joints had become inflamed all at once. His jaw, neck, shoulders, elbows, wrists, several fingers, hips, knees, and ankles were attacked all at once. He told me JRA is considered fatal when a boy becomes ill with the disease involving several joints between the ages of 9-10 yrs old. I was also told that at that age boys also develop blindness as they progress into their teen years. The doctor told me because Chad was so badly infected with RA it would be fatal. The disease would affect his rib cage, and his body would grow, but his ribs would not, and it would eventually choke (suffocate) him to death. Blindness was another factor we should take into consideration, and because he could not walk and never would, we should really consider leaving him permanently reside at the Glenrose Hospital for sick children. His illness would be too heavy and burdensome for me to handle and schooling, etc. was available for him at the Glenrose. I remember the fear that was in my little boy’s eyes as he heard the Doctor’s suggestion to leave him at the Glenrose. Lorne (my husband) immediately told the doctor we were not going to leave Chad, and I reassured the doctor that I would take care of Chad and that Chad was going home with us. We were then given a prescription for gold shots, Myocrisin. The doctor also talked about doing cortisone shots in the near future. We were not in favor of the shots as we had heard lots of negatives about that drug, and we told the doctor this. We were then threatened that they would then take Chad from us as the ‘Year of the Child’ had given doctors and others privilege over parents to do what was right for the child.