Road trip was amazing! Before we left I made a stop at one of our favorite places to go; the library. Anyhow, I took out some short children's books on CD and Harry Potter and the half Blooded Prince on CD (17 discs) Let me tell you what a difference this made in our drive. Our last road trip prior to Alec's diagnosis we drove to PA, Ohio, and DC, an exhausting drive. You become one with the road and antsy and restless. Listening to this book made a HUGE difference. You ge sucked into the story and actually visualize whats going on. Mark also said what a difference it made.
We drove to North Carolina visited some family and made our way to Florida. My first and the boys first drive to Fl. it wasn't that bad. I actually feel a family vacation is so much more meaningful when you drive. Granted due to all of Alec's machines, oxygen, pulse ox, feeding pump, wheelchair, etc. we didn't have a choice anyhow. But I definitely recommend taking more time to drive to your family get away than flying.
Alec's lymphocytes are on the rise and decadrone completely off the table; peeking 2 months now :-) the longest in over a year.
But some numbers causing concern, his CR-P is elevated. According to Jeane Wallace it should be <.1.0 and it's 1.6 and normal range is <0.8 according to Quest Diagnostic. His cholesterol is also very high 228 his cortisol still is not even enough to really register which means his adrenal gland is not producing yet it's own cortisol and for that he is supplemented by his endocrinologist. We are slowly weaning him off this steroid with he hopes his adrenal gland will wake up after sleeping for so long because of the decadrone.
As far as his cholesterol is concerned, we will continue to keep him on a high fiber low fat diet and retest in a few months. As it turns out Decadrone used for a prolonged period of time can raise your cholesterol level. The dangers of high cholesterol is it is used by tumors to make more cancer cells and of course can cause heart attacks and strokes by blocking blood paths to the brain and heart.
And the cr-p means inflammation which can lead to angiogenesis and tumor progression. We added Bromelain to Alecs supplements another anti-inflammatory. Norwegian Dr.s studied the effects of this on Glioma cells and it reduced cell migration. We'll test his cr-p again in a few months.
He is due for his next series of MRI's in July. We don't have a date yet. Well I must run, school is still in full swing, winding down for Kevin and a 2 weeks break for Alec.
-Amy