He was officially diagnosed in 2006 with ITP when he was just 6 years old, after almost 2 years of showing symptoms of what we now know, were low platelets. In December of 2013 his diagnosis was changed to Evans Syndrome, after almost losing his life, and battling a month in the hospital.

In "English Terms" with ES, this basically means his immune system will kill off his red blood cells, white blood cells, and/or platelets. Sometimes it can be all three at one time, or just two, or one.

In October 2014 he was also diagnosed with an underlying immune deficiency called CVID. Which means its a disorder that impairs the immune system and you have low IG levels. People with CVID are highly susceptible to infections such as pneumonia and other illnesses.

There is no known reasoning at this time to why either of these occur and their is also no cure at this moment; we treat with medication, blood transfusions, and infusions when his blood counts are low.

Only 1 in every million people in the world will be affected with Evans Syndrome; and only 1 in 25,000 are affected with CVID, my child is one of them and this is our journey.

For a more detailed and in "English terms" wording, please refer to this post "What is Evans Syndrome?"

Thursday, December 26, 2013

Christmas Miracle Arrived a Day Late-But We Will Take It!

Brian just called me, he was on his way to the parking deck to get my truck; they are being discharged right now!

His counts were amazingly higher than it has been in a very long time. Hemoglobin last night was a 6.3, it is a 9.7 right now. His Platelets were 126K last night, it is at 111K right now (which is fine, that's high for Jordan). Not sure of his WBC, didn't ask, because it hasn't been a concern. They did say that his bone marrow looks to be finally reproducing his cells again, which they were very impressed with (its basically been at a standstill all month). So from the looks of it, right now, we are finally turning that corner that Dr. Gold has been waiting for us to turn. 

Jordan will have a nurse come in three times a week (Saturdays, Mondays, & Thursdays) for bloodwork and PICC line dressing changes (PICC line dressing change is done once a week). No appointment to go to Chapel Hill next week, unless his counts drop again. They told Brian, no offense, but we hope not to see you for a few weeks. Just keeping prayers and thoughts that his counts stabilize and continue to rise to a healthy number, so we can go back to our normal family life.

I sure hope this means a good start to 2014; we have a lot to be thankful for.
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