Hi you guys! It’s been a week. Have you missed us?
I’m going to forego the chitchat.
We’ve gotten a little too used to the homeruns, so our line drive single just doesn’t seem that special. But it is. It’s part of the chipping away that wins you the game. Okay, that’s as far as I can go with a sports metaphor.
We had a little bit less exciting appointment today.
Today, platelets are up again reaching the grand heights of 24k platelets, all home grown. As Paquette said, “A relatively safe way to be in the world.” Which, you know, doesn’t sound that enthusiastic, but we’ll take it.
So that was the good news. Middling news was that her hemoglobin didn’t really move, technically it ticked down to 7.3 from 7.4 last week, although that’s all in the realm of testing abnormalities. But, her red blood definitely didn’t go up.
Her White Blood Count went down to 2.57
And her ANC went way down below neutropenic levels again to .4
Her reticulocyte count is .10 which is a big up. But in some ways that starts to make them have to ask the question, what’s happening with those baby red blood cells after they are being made?
So, no question this was a confusing panel, and even more than reading the numbers, we read the room. Paquette was definitely puzzled, and maybe a little worried. He is as always optimistic, and said this is still looking good. But that it’s early. Still a definite change in tone from last week, which Lisa is very susceptible to.
There were two new numbers of note that were up and raised eyebrows. (Do you think the numbers are all just hoping and praying that one day they’ll make the update as a number of note?) One is her Bilirubin count and the other is her LDH count. I’m not going to get into them, but they are keeping their eye on the possible complication that her red blood cells are now breaking down after being made. She did have one PNH clone at the outset of all of this. We will test for that again next time. The PNH complication is so complicated, I’m not going to go into it, but that’s really what it is – a complication. One that can be dealt with. Until we really start to think that’s happening, I’m not going to even begin to try to explain it.
What does all this mean? Mainly that it’s still really early. And this is not a diagnosis that just resolves itself cleanly. What we want is an overall upward trend, but individually any week could be a back step or two. It was a good appointment. No transfusions. And we won’t go back now for two whole weeks! Yay!
And as promised, this is Doctor Paquette. The Mom told us that first week, “This guy is going to save your life.” I concur. Take a moment, and say thank you to The Guy:
And yes Lisa and I are in our matching vests. It is so friggin’ cold in there!
In terms of her day to day, we have been getting pretty lax, but it’s the start of flu and cold season, so please – her immune system is back way down. Let’s really be aware of hand washing, and of illness right now. If you or your family aren’t feeling well, please stay away.
She’s now been under 8.0 hemoglobin for a few weeks. That is below the automatic transfusion level. That’s below the full oxygenation level. In fact, her nurses keep ordering her blood when the results come back, and she has to go back and say she’s not taking it. And they argue it. And superwoman Lisa stands her ground. But, she is low energy. She seems fine sitting and talking, and then you walk around the block and see her barely getting to the end and you know her oxygenation just isn’t right.
So, going back for the recap of the week. (I know, this is where you all tune out…bzzzzzzzz) (Or maybe this is where you tune in and the numbers are where you… bzzzzzzz)
This week has been a lot of up and down. Lisa feels good, does too much, then crashes. Rinse and repeat.
We went out to a restaurant for the first time, which did feel like our real life. Theo took a picture of us:
Lisa went to two school events, and we had another hiking day where we walked her to the middle of the field at Will Rogers (which totally winds her) plopped her down in the sun, and did an hour hike before coming back to get her. I’ll admit that when I saw an ambulance leaving the field on our way down, my heart only skipped about 9 beats. That’s all. But it wasn’t her.
Theo has been really clingy again. With me. And as a 9 year old boy that translates to a lot of bugging and poking, feet in the face, fingers held inches from your nose in a perpetually cocked ‘flick’ motion, nerf gun drive bys and wrestling matches. I’d hit a moment of maximum Zen-loss over the weekend. Lisa turned and asked him, “T, why are you bugging Mom so much?” Without missing a beat he responds, “Because I can’t bug you.” Silence. He wins. And I accept his rolled up socks under my nose yet again. Because I’m the one he can bug. Poor guy.
What, me bug?
Lisa’s Mom comes into town tomorrow night to spend Thanksgiving with us. We can’t wait to celebrate a holiday on which we have much to be Thankful for.
This was a good day. Because it wasn’t a bad day.
Love you all –