Today was a big ol’ day. And a short ol’ appointment. Lisa was once again sent home without any transfusions. There’s basically been no change. Which, as it turns out, is a whole lotta change. Let me explain.
On these numbers Dr. Josh declares, “we can now see that her bone arrow is objectively better.”
So, platelets haven’t changed. Hemoglobin clicked down again. Below 8, she definitely feels it, but the big news is in that new number, the Reticulocyte Count. It is .4 – so definitely trending upward.
And today’s 12K is totally and completely different than last Wednesday’s 12K. Can anyone guess why?
Because she hasn’t been given platelets in a week.
And how long do platelets last? Not that long. So what does that mean?
These 12k, they are Lisa’s platelets. Her body made platelets. And the reticulocyte count tells the same story. That very slowly, very weakly, her body is making shit. And it wasn’t making shit 6 weeks ago.
It’s early. Very. But it’s real. Somethin’-somethin’ is going on.
Paquette/The Guy/Mr. Sunshine thinks she may be done with transfusions for now. We’ll see. He’s talking about taking out her Pic line. Also, her kidneys are better after lowering the cyclosporine. So that’s good. We should be able to keep her on the medicine she needs for the time being.
And, no question, we’re about to get booted soon from the weekly appointment with him. Which is a weird-ass feeling when you’ve become not only transfusion dependent, but Doctor dependent. We don’t feel ready to not see him every week (he’ll still be seeing every bit of blood drawn). But still!!
We get a draw on Thursday, and see him Monday, and then we will figure out the new plan for appointments.
Okay, so… her blood is crazy low. No rugby. No skydiving. No licking the handrail at school. All the same ‘seriously-no-joke-be-careful’ protocols still in place. Her ANC is still very very low.
It’s going to be a long journey back, and to what we don’t know. She has to be careful, and she has to respect exhaustion. But, we’re on the road. The body is responding to the ATG. Remember, The Daughter (the other AA patient we know) spent 18 months getting just up over the 50k mark in platelets, so that’s the kind of slow we’re talking about.
Now, the other biiiig biiiig news: Hello Cleveland! We have a match. We’re not gonna need it, but we have a match. Sister Barbara is a match for Lisa for a Bone Marrow Transplant. So much love and thanks to Barb and Gloria for getting testing, and being willing. Barb is going to get to claim life-saving willingness hopefully without ever havening to open another vein, but it’s nice to know we have her in our back pocket.
And lots of love to the folks who have been donating platelets for Lisa. Sorry we aren’t using them. Not that sorry, but still. Touched and grateful. And believe me, someone deserving will get them.
From the New Normal,