Monday, September 5, 2011

Praise the Lord for Abnormal Marrow .... Back to Nornal life

A lot has been happening since I last blogged about our lives. We've started back to school and life is returning to normal after their bone marrow biopsies.  We head out for two hospital trips later this month. Is it just me, or are we at the hospital a lot? My oldest can't go, so he will be holding down the fort and taking care of the pets...and we've added a new rescue kitty (picture to follow). We've named her Cupid and Valentine is not too happy about the new addition to our family. After four days, Valentine is still hissing and growling at poor little Cupid. She must have forgotten she was rescued, too!es.

I've been trying to recover from the last hospital trip and at the same time, prepare for a really long week of trips. We will drive to New Orleans to see our Mito specialist and the pain doctor he works with, then drive straight from there to Cincy's pain clinic. With bone marrow failure, we need to have the bone marrow doctors at Cincy involved in medications and since Cincy doesn't have a Mito specialist (he left a few months ago), this is a way we can get the teams to work together. Our doctors here say they don't have anything like what Cincy has, so..... we travel.

It is a constant struggle to find God in all of this... why we don't have doctors closer to us that can help with their chronic pain and other issues.  I guess it is His will that we travel.  Their  bone marrow biopsies still showed myelodysplasia (Dysgranulopoiesis), but they compared them to slides from 2009 and 2010 and it has stayed the same. 20% of their granulocytes (neutrophils) in the marrow showed dysgranulopoiesis. They also had changes in their peripheral blood.   So... life goes on and we get another year before we have bone marrow biopsies. I never thought when they were born that I'd be rejoicing that they had pre-leukemic bone marrow! Stable is good.... staying the same is good.  A miracle cure would be better.... but in His time, I suppose. I Also found a great video, which was an inspiration to me (Below Cupid's picture)

My youngest turns 14 this week and he saved his money to rescue Cupid. How cute is that? His birthday present is that we will buy her food and litter for the next year. She won't go outside like Valentine does. Valentine was already an outdoor kitty for over a year before she found us! Cupid is 6 months old and seems very content staying inside.

Here's Cupid:

Cupid, the Cutest Kitty Ever

There is a really wonderful video that I watched the other day-- We are Catholic. Wow....

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