Tuesday, December 8, 2015

My unicorn

Last week, I gave you some updates about Dan - now I give you some clarification.

One: Dan still has cancer. The abnormal T-cells in his blood is the cancer. The spinal fluid is showing that the T-cells are currently hanging out there...and fewer T-cells are in the blood. So, the chemo approach and dosage has to change.

Dan is not getting the same chemo rotation that he's had in the past. He will not be getting a spinal tap of chemo. Instead, he is getting high dose methotrexate, which will penetrate the brain-blood barrier. This will be delivered through his port, like all his other chemo has been. In order to get this chemo, though, his body pH has to be an alkaline state. [Currently, it's 9:10pm, and we are waiting on Dan to get to 7.1 so he can get the chemo. I don't know if he is normally at a pretty acidic state, but - we sure didn't think it'd take this long.]

Once he's alkaline, he'll get the chemo - which should take 2 hours. This chemo is unique from the others, in that, it will not wipe his body of the blood cells (or whatever chemo does). He will not need to get a shot to boost the bone marrow's production of white blood cells. So, that's good. After getting this chemo, he'll keep getting fluids via IV and his kidney production will be monitored to make sure that everything is functioning properly. He will get released when the levels of methotrexate in his body are 0.1.

So: for those who read this tonight (or tomorrow, prayer knows no time constraints) here are some things to ask for - that Dan will reach the alkaline state soon and chemo will get started. 2) That his kidney & liver keep functioning normally (as they have been), so that he can get released sooner rather than later. 3) That the chemo WORKS and kills those blasted abnormal t-cells.

In two weeks, Dan will come back for a lumbar puncture to measure the levels of T-cells in his spinal fluid. If there are no abnormal T-cells, then he is done with chemo. If there are abnormal T-cells, then, he will have chemo like this until it's gone.

Once there are no abnormal T-cells, then we will move forward with the bone marrow transplant. Some people have asked details about this. We don't know ANYTHING yet. Like, ANYTHING. A request has been submitted with the transplant team for us to have a meeting. Nothing else is in the works - and, it's not the primary focus right now.

At any rate, from where I sit right now, we are not at the end. However, as I keep learning, "the best laid plans of mice and man often go awry." So...who knows? Tomorrow I may have different information for you.


Laurie said...

Stay strong! Prayers coming your way :)

FACS Education Advisor said...

Just caught up by reading the last two posts. You two have certainly had a lot to deal with since you arrived in Michigan, Thank God you moved there! I suspect you have more in person support and a better work environment to say nothing of the exceptional talents of the medical team you have.

I know you are frustrated and probably exhausted. Dan's case is complicated but at least you have direction now instead of the nagging feeling that all of these medical crises should not go unexplained. Be thankful for what you have and try to deal with it one day at a time.
How's your self-care going? Is it time to give another shout out as to how people can help?

PJ Colando said...

"if God brings you to it, He will bring you through it" = trite but true, a great fall back for one who has nothing else to say...
except you are loved, cherished, and ardently prayed for!
Be well. Both of you.