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, November 9, 2014

11/9/14 Update

Third round of Rituximab went very well, but we had a very long day on Wednesday. Jordan was also due for his monthly IVIG treatment, so we decided to go ahead and do both treatments on the same day. So what would have typically been a 6 hour day, turned into an 11 hour day.

Chemo gown that the nurse has to wear when administering the chemo
We went ahead and started him on his steroids and Rituximab treatment to get that out of the way. Pretreated as we normally do (Benadryl, Tylenol, and Zofran), Rituximab took only 3 hours, so that wasn't too bad.

Once we were done with that, we started his IVIG, also pretreated with meds (Benadryl and Tylenol) again, and that treatment took 4 hours (which is a record for us, typically IVIG takes 8-10 hours); thankfully no reactions from that either.

Most exciting part of our day was his platelet count. They draw blood before we start each treatment, before the first dose on October 22nd, his platelet count was 10,000; before this third dose on Wednesday, his platelet count was 125,000!!! So we are SUPER EXCITED about those counts. This upcoming Wednesday, his counts should be higher, just because of the IVIG alone...so I'm looking forward to seeing what his platelet count is when we go to Chapel Hill on the 19th (typically IVIG only lasts 2 weeks for Jordan), to see Dr. Gold & Dr. Wu.

Will update later on this week, after our fourth AND FINAL dose of Rituximab is done!

Continued prayers and thoughts are appreciated!
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