Dealing with Evans

A few weeks ago, I noticed my 14 yr old son's lymph nodes enlarged.  I know enough to know lymph nodes shouldn't be enlarged, especially if there's no cold or infection.  Therefore, I took him to see his pediatrician.  He also had little red spots in his hands and on his chest...later to find out this is called petechia.  Well, it was a Friday morning when his pediatrician told me she was going to test for everything. Everything meaning leukemia.

I don't have the words to explain how that felt like, so I won't even try.  After a few days in the hospital, a bone marrow biopsy and aspiration and endless blood tests, the doctors told us it wasn't leukemia. The sigh of relief in that room was very noticeable.  Little did we know at that time, that the fact that we weren't dealing with cancer didn't mean we weren't dealing with something serious.

Thus came Evans Syndrome into our lives. The doctors told us there is very little information about this, therefore treatment is kind of a hit and miss situation. Lovely! I'm a marathon runner. I like planning, I like schedules and they were throwing me into a pool of gray! Evans Syndrome is a very rare autoimmune disease where his body creates antibodies that are killing his white blood cells, red blood cells and platelets.

How do you deal with stuff like this? Well, I have no idea.  We, literally, have to take it one day at a time. For now, I keep on running. I am also trying to bring awareness to the cause, as the medical community doesn't think they need to research for a cure because there are not enough patients who suffer from this. This is a 1 in a million odds that you will get this. My son is case #75!!! 

Today, we drew more blood. Now we have to test him on a weekly basis to make sure he's responding to treatment.  Waiting for results is like waiting for marathon morning. You are anxious and looking forward to great results because you have done all the work!

I have decided I will approach this as I do marathon training. One day at a time, trusting that if we follow our "training" plan, my son will be fine!