Friday, September 4, 2015

Some results...

I can not even believe how completely insane life got around here in the blink of an eye.

I have two sick kids and one horribly depressed kid who is also sick but doesn't know it.  I mean, he isn't in too much discomfort so he carries on, none the wiser.

Results are starting to trickle in.

First, bone marrow biopsies.  Only preliminary results are back, more are pending

Shelbie:  Remained stable with no signs of leukemia or myelodysplasia.  Of course she was neutropenic, leukopenic and had no iron stores but that is pretty typical for her.

Spencer:  For the most part, is stable.  He too is neutropenic and he had some cells called hematagones.  They can actually become fairly serious but for now, they have classified it as slightly increased, not significantly increased so, I guess they aren't very worried.

Samuel:  Not stable.  He lost around 5% of his cellularity so his marrow is very, very empty.  He too was neutropenic, leukopenic and he had something very strange called cytoplasmic blebs.  I realize that sounds completely made up!  Blebs is a real thing.  It is when the nucleas of a cell bulges out.  I'm not entirely sure what this means but in some quick research, it can be related to the arterior venous malformations creating pressure in the cells.

For now, we are not going to worry about hematogones or blebs.  We will wait for the remaining bone marrow studies but I feel pretty confident that we can breathe easy for another year.

Spencer continues to suffer incredibly with malnutrition, eating, nausea, and other unmentionables.  It's been so hard to see him waste away and be so weak he can hardly function.   Our GI called on Wednesday afternoon and said that it is clear that Spencer has a functional problem with his GI tract- from his stomach to the end of his colon.  He feels that the entire length is becoming paralyzed to some degree. It remains to be seen if this is due to his mitochondrial issues or DC.  He has been doing some DC studying and he feels like this is the progression of the disease.

Sam is also having GI problems but not the extent that Spencer is.  Again, since his colonoscopy was clean, it is a functional problem.

Shelbie is so sick and getting sicker. I really hope we get pathology back.  Her stomach is a mess and those unidentified growths are making me freak just a bit.  Our GI thinks they look like Lymphoid Nodular Hypoplasia.  Don't ask me what that means and to be honest...I haven't gone there.

We are trying to be patient as we wait for a game plan.  The doctor suggested starting the kids on a soluble fiber diet and making sure they eat every 2 hours.  This is proving to be a time consuming venture but we will stick it out.  Today was our first full day with the diet.  I am still trying to learn all about the right foods to try with him.  Spencer also started some pre-digested formulas and that was slightly better and going down than anything else.  So, I think we are on the right track but it is sad to think this disease is running its course...without my permission!


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