Thursday, June 2, 2016

The Waiting Game

"When all you feel are the shadows, turn your face towards the sun."
-Helen Keller

It has been a rough week. On Monday we got back the genetics report from Utah. (Finally) We were disappointed to find out that because of the genetic make up of Brian's leukemia he would definitely need to have a bone marrow transplant.  I would try to explain it, but honestly it's almost nonsensical to me. He has extra chromosomes on some DNA and is missing a chromosome on another number. Just in case you are wondering, it is only the leukemia cells where this genetic oddity is happening, it is not something that was there before. Originally the doctor had pretty much made it sound as if Brian's leukemia would be able to be treated with just chemo. We were clinging to that hope, and then that option disappeared. We were crushed, but after a bout (or maybe two or three or seventeen) of tears we regrouped and decided it was just another hurdle. We will just focus on getting better and then move on to the bone marrow transplant. We were as ok as you can be when you have cancer in your life. (Which honestly isn't saying much...)

Brian had another bone marrow biopsy on Tuesday. The doctor said we should have the results by today. Going into chemotherapy Brian had 87% blasts in his marrow. The blast are the bad cells. In order to be considered a successful induction, he would have to be 7% or under. Then we could move forward, get his blood levels closer to normal and head home for a few weeks. We were really hoping that he would be able to be home in time for Noah's graduation next Friday. Unfortunately for us the doctors switch rounds monthly and it's now a new month, so while the doctors still work together we don't see the regular doctor. The team came in for rounds today and didn't say a whole lot. Nervously I asked if they had the biopsy results and they said yes, but Dr. B would be in TOMORROW to talk to us about them. I felt as if the air had been knocked out of my lungs. I wanted to scream and cry that tomorrow is NOT OK, but I couldn't. I had to keep myself together for my husband and so that the staff doesn't think I'm a total nut job. (If I don't turn into a total nut job before this is over it will be nothing short of a miracle.)

I should also mention that my poor husband is having some sort of weird reaction to SOMETHING. They don't know what. He has a high fever, and an angry red rash, and he shakes all the time.  He isn't eating, he's tired, his eyes burn, and he gets exhausted simply walking. They took his picc line our yesterday thinking that could be a cause of possible infection, so now they have to poke him over and over for the endless tests they are running. He's slowly becoming a shell of his former self and it's all I can do to not just scoop him up and run away from the hospital and hide somewhere with him. But I'm well aware of the consequences of those actions and I am so NOT ready to just give up, and thankfully neither is he.

I DO trust the doctors and nurses.
I DO feel so blessed to have amazing friends and family who are helping us get through this.
I DO believe we will beat this.
I DO enjoy the brief moments we are able to escape the confines of his room and walk together.
I DO love my husband so much it physically hurts me to watch him go through this.
I DO believe in miracles.
I DO plan on turning our faces towards the sun to escape the shadows.

I wish... that all of this never happened, to us or to anyone else. EVER.

God is good.  All the time.

No comments: