Well, it’s time. For real. We can officially put aside the fear of the joy and just feel some fucking relief. And joy. Really, I’m buying a round. Or two.
I think we even can put the caveats aside for today… and there are some (can’t help myself) but just know that today is a big assed day.
Let me start by saying that a big missing piece of information was imparted to us today, something about which we really were misinformed. Like, we were thinking the sun revolved around the earth wrong.
What we learned:
While the hemoglobin count affects her life day-to-day more, they are far more worried about low platelets than low hemoglobin. We honestly though the opposite. But apparently you can stay hemoglobin transfusion dependent forever if needs be, but you top out on platelets at about a year of transfusions. And the reality of dying because of bleeding is much more real than dying of a low red blood cell heart attack. (Wow, not attractive options either side, but there you go.)
Dr. Josh said, “If we had to choose, we’d choose low hemoglobin.” Well, okay. Thanks Copernicus. That’s news to us. (He did stop and clarify we don’t want any of them this low, but still…)
So… I’m going to back up. I know I have you hooked by the promise of good news, so I’m gonna tease this out a bit.
Where did we leave off last week? Platelets were coming up, but hemoglobin down. She left her Thursday draw at 7.0 for hemoglobin – most patients are transfused at 8.0.
The hemoglobin she feels big time. We would guess she continued to drop and was in the mid 6’s on Friday when she was scheduled to go to her first school event, the Jog-A-Thon. When she mentioned to Theo she might not make it he responded: “That’s fine, as long as you’re there.” Got the message. I know she didn’t feel well because she let them use the elevator to get her to her isolation spot on the upper balcony.
This is Lisa’s Evita moment:
Even though Lisa felt like shit, it was great to be on campus, and Theo obviously loved it. He ran 23 laps in 20 minutes (just under 2 miles) for the Jog-a-thon smiling and waving up to Lisa every time he passed under her.
She laid low the rest of the weekend as her energy levels were (duh) incredibly low.
So, today we went in to see The Guy and Dr. Josh. Her blood draw was late, so they came in and we met, but didn’t have much to talk about without seeing the numbers. They left, and waited even though they didn’t have more patients to see in the clinic. Love them!
When they came back, the smiles on their faces said everything. This was definitive. Her bone marrow is recovering. Big time. Paquette said this is as early as he’d ever seen it. I said again to him that given a choice of betting on a statistically better off college student, and a Mom who wants to get back to normal life with their kid, take the Mom.
So, the numbers:
Platelets: 20k. All home grown, Lisa originals.
Hemoglobin 7.4 low to be sure, but going back up.
Reticulocyte count .07 – that’s almost double the last draw. Go baby blood cell go!
ANC .8 – double her last draw
We have liftoff!
She is no longer transfusion dependent. He does not expect to have to transfuse her again.
So… we took out the Pic line. The Mom of the other AA patient told me two months ago what a big deal that would be, and she wasn’t wrong.
Here’s Doctor Josh:
And here is Dr. Josh showing off the pic line that had just been pulled out of her chest. The purple line is what was inside of her:
Also of note, her body clotted the Pic line spot really well.
We cancelled her Thrusday appointment. She’s going down to one visit a week. We will see Paquette next week (and I promise to send a picture) and then we’ll see him every other week probably. She’ll still have a draw every week, but at this rate, that might get pulled back soon too.
At the end we both felt huge relief, and then she said, “Too bad I feel terrible.” Right, she has very low hemoglobin. So, she doesn’t feel great. And can’t drive until she stops being dizzy. But when she climbs back out of this red blood cell hole, which we have every expectation she should given the reticulocyte count, we should be able to get back to a more normal life. A modified ‘new normal’ normal life. We’ll take it.
LA folks, as soon as her energy starts to climb back up, she can start to be taken out for lunches. At really clean restaurants.
Not being transfusion dependent as a milestone to reach? Check.
Next big medical milestone will be 50k platelets. She can have some hard cider. She can have surgery, which is a more safe way to be in the world. And I think we can start to contemplate travel then, but I don’t know all the travel rules. Except that for now we can’t.
Hopefully you won’t hear from me for a week. Now go, have your joy. And enjoy it!