It is amazing to say those words... and a bit scary. I kinda feel like, "When is it coming back?" She was diagnosed in February of 08. She had her first symptoms following an ear infection in Dec. 07 at the age of 19 months. We never saw a neuroblastoma, and her Opsoclonun-Myoclonus Syndrome was called moderate to severe by Dr. P and Liz. We did the Dr. P triple therapy and successfully weaned off the ACTH about this time last year. She was on it for about 14-15 months. We have really worked hard at keeping her healthy and chose to limit almost all activity while she was on ACTH. It was quite a lifestyle change, but it was absolutely a scrifice we felt worth the cost. After she was off the ACTH, we ventured out a bit more. She made it two years without any illnesses - Praise GOD! She had her last IVIG in December and her port removed in March. So far so good.
Now that we are venturing out-and-about more (still limiting things like SundaySchool - but letting her be around some children at their homes and at our house etc), she has had a cold, minor bout of croup, and a 99.2 temp. We haven't seen any symptoms return yet. We will wait and see when the first big fever hits. It is something we will always watch and wonder about. We are so thankful to God, the doctors, and all the family, friends, and friends of friends who have prayed for us and supported us - we couldn't have done it without all of you! We are also thankful for the OMS, as scary and horrible as it was, because we learned to never, never take a normal boring day for granted. It also made us realize the preciousness of life and enjoy Annabelle all the more. God allowed this trial and provided for us at every bend and turn."God is our refuge and strength; a very present help in trouble. Therefore will not we fear."--Psalm 46:1
Hopefully, this is an encouragement to some just starting or enduring this journey with OMS and wondering if it is possible to ever get off of all meds. She is off of EVERYTHING (except vitamins and cod liver oil) and doing fabulous!!
One more thing... she has a great memory of things we have done and people we have met etc. But, when I ask her if she remembers getting shots or being in thehospital she doesn't remember any of it. I find that amazing. After getting shots every other night for 14 months she doesn't remember. We praise him for his goodness AND for the suffering that produces patience and endurance. He is faithful!