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?"

Friday, October 17, 2014

10/17/14 Update

Well as I predicted Jordan's platelet counts have dropped. Its been two weeks since he got IVIG, and typically thats how long IVIG lasts. Last week his platelet count was at 41,000 and its now at 25,000 (where we were exactly a month ago). Thankfully he has no symptoms, but that changes once he goes under 20,000 (petechia and bruising on his legs). So we will see how the next few days hold up.

Diana called me about an hour ago and we are FINALLY starting Rituxan (Rituximab), our first dose is scheduled in Chapel Hill on Wednesday morning, bright and early. So we are going to try and get a hotel room the night before, if not then Jordan and I will probably leave around 4:45AM to beat the Raleigh traffic (or else we will be stuck in non moving traffic for 30 mins to an hour).  It will be an all day thing, since we have to start the treatment slow, to offset any side effects. Keeping fingers crossed for no side effects and that this treatment works. Not going to enjoy a 5 hr round-trip day of driving thats for sure.

Its a total of four doses, given once a week, for four weeks. As long as Jordan has no issues from this treatment, the other three doses will be give here in town at our local hospital (keeping fingers crossed on that also). I have heard such good things about Rituxan, so I am hoping it works and puts Jordan in remission for a minimum of one year (although I hope longer). It takes up to 12 weeks (give or take) from the first dose to start seeing a rise in the platelets. This would be a huge blessing on our family, financially and emotionally.

I will update you after Wednesday and let everyone know how it went.

Prayers and Thoughts as always :)
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