Sunday, August 30, 2015

Surgery Prep

Today we are preparing for our big day Monday.

At 6:00 am we start a host of procedures.

It will mark our 56, 57,and 58th bone marrow biopsies. You would think that by this point we would be use to this but it never seems to get easier.  It's getting a little bit harder.  It makes sense really.  We have managed to avoid myelodysplasia, leukemia, and other clonal abnormalities that can show up.

Dyskeratosis Congenita is a telomere biology disease.  Telomeres are the ends of the chromosomes that protect it from damage and disease. As they get shorter and shorter, more and more damage happens and that typically results in cancer and organ failure. So, the shoe could drop at any time.  The older they get, the shorter the telomeres.  Just as a point a reference, the kids are all at about the 8th percentile for telomere length...that's pretty short.

But, we are moving ahead with hope and determination.

Heading in to biopsies tomorrow of the bone marrow and colon and upper GI, here are the stats

Shelbie: white count 2, platelets 51, red count 4, liver- enlarged

Spencer: White count 4, platelets 200, liver enzymes elevated

Sam: White count 3, platelets 210, liver enzymes elevated, biliruben- elevated

As far as neutrophils go, they are low on all three kids.

I am not as anxious about the bone marrow biopsies as I am the GI workup and liver studies.  But, what will be, will be.

We are half way through the prep for surgery and the kids are wilting fast.  They had to start this in an already depleted state so this is definitely taking its toll.

Tomorrow at 6 am can't come soon enough.

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