Beyond Chance (Part II)

We saw a team of doctors who expressed an interest in my daughter's case. I felt good about the whole experience and felt that she was in the best possible hands. How could I not? Well.... to make a long story shorter....she went over a year without any treatment. They repeated her liver enzymes and asked me to collect a 24-hour urine copper. They explained this would be our way of monitoring her progress. Her urine result turned out normal. They warned me that a liver biopsy was inevitable but that they were going to postpone it for now. They told me that they would see her again in six months.

Six months later I took her to her appointment and this time the doctor mentioned that they wanted to start chelation therapy instead of the dreaded liver biopsy. Of course, I was relieved to hear the news and so the information did not "register" until I was on my way home. I started to panic about chelation because I vaguely remembered reading about the horrible side effects. My daughter was asymptomatic and doing so well. Did I REALLY want to make her sick? Did it make sense to start with chelation when there were other options? I decided to do some research.

I went online as soon as I got home and Googled "chelation therapy". I then decided to check out the Mayo Clinic website and read what they had as far as initial therapy was concerned. Everything I read led me to believe that zinc acetate was actually the treatment of choice for my daughter. I also remembered that I had access to the president of Wilson's Disease Association and I decided to email her about my feelings and concerns. This angel of mine immediately emailed me and validated my concerns. She told me that chelation was definitely not the first treatment of choice for asymptomatic pediatric patients. She sent me some information and booklets. I was convinced that I needed to contact the doctor at Children's Hospital and ask him if he had even considered this safer option.

I called the nurse and asked her to make sure that the doctor had considered zinc acetate as a possible treatment. I tried to remain optimistic. I did not want to believe that the doctors would blindly put my child on a very dangerous treatment without looking at the most obvious choice. The next day I received the phone call from the nurse telling me that the doctor had NOT heard of zinc acetate and that he did some research and felt that it WOULD probably be the best route to take. Surprise....surprise....surprise.

What IF I would not have done my research? What IF I wouldn't have questioned the treatment? What IF I wouldn't have contacted the right people? What if? What if? What if? I am totally convinced that things don't happen by chance. There is definitely a much higher power that is responsible for all the blessings in my life. My sweet husband, family, and friends constantly remind me that my kids are so lucky to have me as their mom. I believe that I am the lucky one. I have learned so much from them and my faith in all that's good comes from my motherhood experiences. I don't ever pretend to have all the answers. However, I do have to give myself a big pat on my back for providing these opportunities that have opened so many doors for treatment and ultimately maintenance of my daughter's Wilson's Disease. Who knows what her future COULD have been? That is why I am determined to remain an advocate and to educate everyone I can. PLEASE learn from my mistakes and take whatever tidbits you can from what I have learned and shared. It's beyond chance that you are sitting there reading this right now.... I honestly believe that.
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We are more than mere pawns in
the game of life. We have the
power to be kings and queens.
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