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?"

Sunday, December 29, 2013

Weekend Update

Jordan has had a good couple of days; glad to be home. His two best friends (for almost 10 years) came over on Saturday and spent the afternoon with him, which lifted his spirits a lot, because he hasn't seen anybody but family and doctors this past month.

His coloring is good, not as flushed as he was when he came home from the hospital; but definitely still good. Of course, every little thing with him, we are overprotective with right now. But with everything we have been through this month, its understandable. Poor thing, I know he wants a vacation from us right now-LOL.

His chemo burn is healing nicely; he is on a heavy steroid cream for that, twice a day; keeping it wrapped, with a few moments of "airing out" to give him a break. Still on all his prescriptions as usual (can't wait to decrease that). He isn't sleeping that well at night, but that's to be expected due to the steroids that he is on. 

Nurse came over Saturday evening to draw blood. The anticipation with the results were high; we waited and waited, and nothing. So we went to bed figuring no news was good news.

I called this morning (Sunday), and talked to an attending doctor; she said they hadn't heard anything, but that maybe the fax had been sent to the clinic (clinic is closed on the weekends); so she would walk down there and call me back after the doctors look at the results. A long 2 hrs later she finally called me back with the results:

Hemoglobin: 10.1 (up from 9.7 on Thursday)
Platelets: 119 (up from 111 on Thursday)

So good news, not much of an increase, but I will definitely take that instead of a decrease. The nurse comes over tomorrow (Monday) for more blood work, so I look forward to hearing those counts, and hopefully its also an increase. No news about going to Chapel for a followup yet, the discharge papers say we will be contacted about an appointment pending lab results; so I assume we are waiting to see how the blood work is this week. Fine by me (no offense to them, because they are great up there); but financially and mentally we need a break from traveling. 

Continued prayers and thoughts of course. Hope everyone has had a great weekend!

 Jordan and Brian playing a game of Monopoly (Jordan won, LOL)
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