Wow! It has been a long time since we updated this page! I guess that just proves that Jon-Marc is carrying on with normal life :) I know that it is hard to pray when there are no details to pray about, so I will try and keep this page a bit more up to date! Jon-Marc was diagnosed in September of 2012 with Juvenile Rheumatoid Polyarticular Idiopathic Arthritis. After about 6 months? (Im guessing here- I cant remember!) his doctors decided that he needed to go back to taking the horrid Methotrexate. Methotrexate is one of the chemo meds that JM was on in Leukemia treatment.... it has some nasty side effects and we were not happy with that decision at all. But, during a meeting with rheumatology and oncology docs, we were told that we have two choices #1- Go back on the Methotrexate and deal with the side effects and have a somewhat normal life or, #2- Be in a wheelchair by the age of 15 ... it didnt feel like much of a choice, but we chose the meds. The good news is that the dose was much lower than it was in treatment and that we can also supplement it with Folic Acid, which rebuilds his cells and prevents things like hair loss and mouth sores. We were told that we would try this for a year and then stop the Metho if it wasnt helping. We not-so-patiently got through that year. At that one year mark, we were informed that the Methotrexate wasnt doing its job and that we needed to increase it instead of stop it- again, so frustrated!! So, here we are, still on that nasty med and living our new normal. JM is handling everything beautifully most of the time with just a few bumps along the way :) JM is currently doing pretty well with the arthritis. He wears wrist braces to keep his wrists straight and to help with weakness and has a stubborn ankle that likes to give out ( especially at the top of the stairs- we have had a few tumbles :$ ) He has days where the pain is unmanageable, he has days that are completely normal, and he has days in which we have both! This week, on August 27th, we will remember that it has been 5 years since the day that JM was diagnosed with cancer.... we will quietly thank God for the gift of life and be ever grateful for our little man :) We will probably not talk to JM about it, as he is trying to hard to be a normal little boy and even hearing the C word makes him rather angry. Thank you all for your prayers over these past 5 years. I know that it has been a long haul, but we are not finished yet, so keep on praying! Janet ( mom to a hero!)
Posted on: Fri, 22 Aug 2014 11:14:17 +0000
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