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, January 2, 2014

Thursday Bloodwork Update-1/2/14

Just got today's lab results, and he is starting to drop again in numbers. Not by much, but still...

This is compared to Monday's lab results
WBC: 2.4 (was 2.8)-Normal is 4.5-13.0
Hemoglobin: 9.4 (was 10.5)-Normal is 13.7-17.5
Hematocrit: 27.8 (was 30.7)-Normal is 40.0-51.0
Platelets: 371 (was 192)-Normal is 150-450 (only thing rising)
Neutrophils: 55 (was 62)-Normal is 47-67

So not a good lab day for us; we go back to Chapel on Monday to receive his Vincristine, PICC dressing change, and see what his counts are then, it was an appointment that was going to happen whether his counts were good or not. I pray they are up and not even more down. Going to pack for the both of us Sunday night, just incase we end up having to stay, but I am hoping not. He has been doing so well the past week, I was hoping for good results as we have been getting with the other two lab results. 

Going to be a long four days, being on pins and needles watching him. Please please send good blood work results our way for Monday. He wants to go back to school so bad, and was hoping he would be able to go back on Monday with the rest of his peers. So lets hope he can go back on Tuesday.
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