Just came from The Guy (who has a cold which I do find slightly unsettling because he’s invincible in my head) and we have some good news. The first signs of maybe a little… life… in them there bone marrow.
So… it’s a Monday, which is her long stretch between blood draws.
She has 9k platelets – so she’s getting a transfusion
And 8 hemoglobin. Very anemic to you and me, and the automatic trigger line for transfusion in anyone but an AA patient. And that is down slightly from Friday.
So, these numbers don’t look dramatically different, higher than average, yes… but celebratory? I mean, didn’t we all study the lesson on the anomaly of any one bag being a good match and therefore sticking around longer? Why yes, we did. So, aren’t we supposed to be unimpressed by a small variation of 4k – 9k? Yes. We are supposed to thumb our nose at that.
However… there’s a number I’ve known about for a long time… and have indeed been keeping from you. Because it’s been doing a big squadoosh, and we don’t need to know what we don’t need to know. But now we need to know. This number is now going to be a very big player, and for the first time, it’s showing some movement.
This bad boy is called her Reticulocyte Count. It is a test that measures baby red blood cells all the way back from their beginnings inside the bone marrow. Here’s little web help in explaining this number:
A reticulocyte count is a blood test that measures how fast red blood cells called reticulocytes are made by the bone marrow and released into the blood. Reticulocytes are in the blood for about 2 days before developing into mature red blood cells.
Lisa’s reticulocyte count has been .00 for a long time. Basically nothing going on. But, the last three blood draws she was .01, then .02 (see where this is going) and then .03. Something is maybe waking up in her bone marrow.
So now we can look at her numbers holding better, and think that maybe… just maybe… her body can take a little credit.
We need to careful with opening the floodgates of joy. People react and then bonk, sometimes changes in drugs make the regeneration stop happening. She’s barely showed a change in her numbers… but… Paquette was optimistic, even thought this is early and really could not turn out to be what we hope it will be. But if the guy is gonna be optimistic, so will we.
Couple of other housekeeping notes:
1) *Her kidneys are showing a little wear and tear, so we are going to drop down from 12 cyclosporine pulls to 10. Which… won’t help our dear friends in the Bone Marrow department, but this is a balancing act, and we know that part of the process is protecting her kidneys and liver as best we can.
2) *Lisa is bleeding more, her gums keep bleeding. She has sores in her mouth. And then her nose started bleeding, very slightly, but it’s been going for two days. Also, for the first time she has petechia all over her legs. These are broken capillaries on her skin that create little purple dots. I asked Dr. Josh if her time spent below 10k in platelets has a cumulative effect, and he said that it does indeed. So, the first time she dropped to 2k, would be less dangerous as it is now even being at 9k. She will bleed more and more. And we have to be even more careful about her body getting bumped.
3) *We have to see how the week goes in actuality, but he’s hoping the week after we will go down to 2 draws a week. Let’s wait and see… but that would be great.
4) *We are still being careful with food, but stepping back from the absolute neutropenic diet. As Lisa said, “no more soups or stews!” Trying to get more veggies in, and we’re going to start ordering from restaurants some of the time. I will update the meal list in the next few days.
Other than that, we had a really nice New Normal weekend. Lisa and I both went to Theo’s soccer game on Saturday. We had a fun Halloween night. Then on Sunday Lisa was freaked about the nosebleed, but we called Paquette and he told us at what point we’d need to head to the ER, and it wasn’t yet. So we multitasked the hell out of Sunday morning and all drove together to Will Rogers, enjoying a really lovely drive by the ocean. Then we set Lisa up in a chair under a tree on the big field, and Theo, Rudy and I went for a hike. We put Lisa back in the car and headed home.
This morning on our way to UCLA Lisa got out with me and walking on the school campus to see Theo off. I think there may be more of that, but school folks – no hugging, and we just have to make sure she doesn’t get hit by anything. But, the goal now is to make the New Normal, more… normal.
We have a long way to go. A long way. And there will be setbacks no question. But hope, oh hope goes a long way.
Oh, and I remember what Theo said. We were driving when he told me that they’d had an emotion circle at school. And he was asked what he was feeling.
“So, what did you say?”
“Dazed? Good word. Spot on. That’s exactly how I feel.”
“What does dazed mean exactly?”
I explain what it means exactly.
“Cause I read it in an Archie comic, and figured it out in context. I wasn’t sure. But that seems right.”
“It seems right indeed. Dazed. I think I’m going to use that too.”
Happy Monday everyone!