Friday, January 31, 2014

A Little Bit of Something...

Emotions can be overwhelming.

Last February break the five of us trucked on up to Children's Hospital to have blood taken and sent to Houston for analysis.  Then we waited.

Yesterday I went online to check my e-mail, news being the furthest thought from my mind, yet there was a message from our immunologist that Cole's genetic testing was finally in.

Between the excitement that there was finally news, the nervousness of what I would learn in the rest of the message, and the sheer relief that the wait was over, I was jittery to say the least!

Reading on, our doctor explained that there were three different mutations identified in the study.  The first two seem to have no correlation to Cole's Crohns or nk cell disorder, the third may hold the key.  So while each of these strands need further investigation, right now the focus is on the third mutation that was found. In the end, it could be "inconclusive" as well, but for now it hold some promise of answers.

For now, our immunologist explained she and the researchers at Baylor need to have some further discussion after looking at all of Cole's other tests he has had over the years.  In addition, our doctor wants to consult with our gi practice before sitting down with us and explaining results and implications.  At this point, she is planning to join us at Cole's gi appointment next week to go through everything she has to clearly define what it all may or may not tell us.

After the long wait, I think this last little bit may be the hardest.  Knowing there is something to learn, the information right there on the edge to be delivered, is just incredible to me.  What we may hear has the power to change our lives again, for better or worse. That in itself is frightening.

In the meantime, we have to go for another set of nk cell tests for Cole and continue as we have been.

Looks like next week will be a busy one, two hospital days, one for blood, the other for his infusion, and a day in the clinic.

I better get my donut money ready, I have one little boy who will not only deserve them, but will be asking!  Instead of a Tim Horton's in the hospital lobby I think they should have a fruit stand!

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