October 13, 2006 was the most devestating day into our journey with our family. Dr. Richards our wonderful family doctor called about 4:00 P.M. to let us know the results of the dreaded test for Metachromatic Leukodystrophy it was for sure positive, wow what a roadblock I don't think it was reality for awhile, I remember hearing the words like it was yesterday.
So now what? well we just live life and find options that will help us through this journey. The first meeting we had was with our LDS Bishop, Bishop Pearson to let him know that this long journey awaited us and that we would need some support he was very kind and asked us for some information that he could learn more about MLD. I had some paperwork because we ourselves did not know a lot about it. He was so good to us and was so willing to help us get through this with support. I searched the internet for answers and studies and I got in touch with my brother-in-law who had been going down this journey for several years he was very kind and helped me in any way that he could he answered my many questions even if they were dumb. He has been a big support to us also, and we are very greatful for his support. I found a support group through the internet with people who have loved ones with the same disease and that has been such a blessing in our lives I can email the group and vent or ask questions and we are all learning together and some people react differently with MLD than others so there are so many suggestions that help us all get through the tough days. We also look forward to the good days that people enjoy with their loved ones.
February 10, 2007 was a hard day for all of us. We found out that Jaren's sister Ansje that had been suffering for a long time had passed away even though we all knew she was free from the disease and was perfect again did not make it any easier. Our diagnoses was still fresh on our minds and we knew what was coming in our future. It was very hard to cope with. She was a mother of 4 wonderful kids and a wife. I knew then that we had to do something about this to help Jaren. We finally decided to meet with the Bone Marrow Team at LDS hospital to discuss a transplant that might slow the progression, what an eye opener, they were very kind and laid everything out on the table it was very overwhelming a 4 hour appointment that stated many times that the chemo he would have to undergo would probably kill him faster then the disease itself. We came home not knowing what to do or where to even start. We immediately counseled with our bishop and the stake presidency. We decided against transplant we were not ready to give up though. We decided it was best for our family to enjoy the life that was given to us and we have not regretted our decision.
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