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, October 30, 2014

10/30/14 Update

We went for Jordan's second Rituximab treatment yesterday, it went very well once again (thank god). Luckily we were at our local hospital for the treatment, but unfortunately Jordan is the first patient ever to get this particular chemo treatment at our hospital, so things were a bit slow on treatment. We got there around 10AM and didn't leave until 5:30PM. Treatment didn't start until after 1PM, as they got their information together (the chemo nurses); and also for the fact that the infusion room was overbooked, so we were separated into a private room during treatment, so there was a lot of running around for the chemo nurses (hopefully next week we will actually be in the infusion room). But, it was another good week with no reactions from the treatment, pretty much a repeat from last week's treatment.

On a better note, last week, before the first dose of Rituximab, Jordan's platelet count was at 10,000. This week, before the second dose of Rituximab, his platelet count was at 35,000. So I am keeping my fingers crossed that this is the treatment working, and not the heavy dose of steroids he gets before getting his treatment. I am trying to be patient with this, as it can take up to 12 weeks after the treatment is done, before we see any results, so I am trying to remain confident on this. We shall see, but definitely doing the platelet dance here!

Also his petechia is fading away, so thats a plus, and bruises are also healing nicely. Still waiting on the IVIG blown vein bruise to heal from the beginning of this month, that is taking some time to go away.

Otherwise, Jordan is feeling and doing great, no side effects or reactions from the meds he is on, nor the treatment. So definitely counting our blessings on this one.

Will update again next week, prayers and thoughts as usual. Thanks!


Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)