The Bible tells us that we must forgive 70 times 7. I find myself wondering how many times we are expected to get our hopes up, trying desperately to be positive, only to have them crushed once again. Seriously. It is so very hard to remain optimistic and have that faith and hope spoken of so often by others when each time you do, you are beaten back down. We try. We really do. We continue to smile and say all is well, and go about our daily tasks as best we can even though much of our time, especially Brent's, is sitting in various Dr's offices or at IV infusion getting hours upon hours of various infusions.
I have neglected to post the results of our Dr visit with the hematologist, because we are just trying to figure it all out. Some days we just don't feel like talking about it or dealing with it, so we don't. The Dr was so sure that the blood tests taken on Monday would totally confirm the diagnosis of Hemolytic Anemia. All of the signs and symptoms and previous blood tests supported his hypothesis. And though the treatment was going to be gnarly, we were excited and hopeful that finally something was treatable. The phone call on Wednesday was to say that, no, this set of blood tests did not confirm his suspicions. And, once again, we are back to the drawing board. Brent received units 18, 19, and 20 of blood on Tuesday. Nobody knows where it is going, why the red blood cells are being killed off, or what exactly is going on.
He is scheduled to receive an infusion of a kind of iron that he has never had before on Monday. Our infusion center doesn't even infuse it because of the high risk of anaphylactic shock. Woo hoo. The patient has to have a trial dose first, and be heavily medicated with benadryl beforehand. So, that is the next step according to the hematologist.
We will continue to hope, because that is what we do. It's getting harder and harder. There is that saying we are all familiar with, "Fool me once, shame on you, fool me twice, shame on me." I don't think there is a saying for fool me 5,324 times. (lest you think I have morbidly counted each blip in our lives, that is just a random number.)
So, that is the update of what is happening. Once again, there is really nothing to report. Brent remains on disability with BYU, wishing beyond all wishes that he could just be back to work doing what he loves to do.
Our weekend will be busy with the girls being home for Michelle's 24th birthday, and for our other daughter (Michelle's best friend) Hilary's graduation from UVU. It will be a nice change of pace. Tina moves home next weekend for the summer, although her time will be spent being a counselor at EFY in Provo, Salt Lake City and Nauvoo. EFY is a youth summer camp for our church where youth 14-18 come for a week at a time to and from various places throughout the country. She will be a great counselor.
Thank you for your continued prayers and thoughts. We need them, and appreciate them. And although this post is mostly a pity party on my part, please don't think that we sit around and wallow in self pity. There are just times that you gotta sit back and wonder how much one person really is expected to endure. We will keep on keepin on, as we always do. What other choice is there?
thanks,
Lisa
Friday, April 26, 2013
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I can't even imagine the emotional stress -- seems like we can deal more easily with KNOWING - having a name for something that is wrong. The not knowing is excrutiating.
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Thanks, Laura!
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