Page 60 of Promise Me Nothing
A door opens to the left and all three of us look up, seeing Doctor Lyons walking through, a clipboard and folder in her hands. When she sees us, she walks straight over, then bends down slightly to look at Ivy, tucking her documents under an arm.
It’s good to see you, sweetheart. You ready to come back?
Ivy squeezes my hand again, but nods, slipping off of her chair. She doesn’t let go of me, though, and it isn’t lost on me that Ivy is looking to me for comfort and support instead of to our mother, who has had on her plastic mask all day.
We follow Dr. Lyons in silence, through a large set of doors and back to a hospital room.
I know what’s coming before she tells us, but that doesn’t make it any less hard to hear. And after a few pleasantries and checking in with Ivy to see how life has been, how the school semester wrapped up, and what she’s been doing with her free time, Dr. Lyons finally gets down to it.
“I’m going to be honest,” she says, looking at my mother, but signing for Ivy at the same time. “Ivy needs a bone marrow transplant. The eculizumab is doing its job in building up her red blood cells, so we will continue on that regiment. And we’re lucky that her blood isn’t showing any signs of clotting, which is usually a big wory with PNH. But her bone marrow function is still incredibly low. And with the regular fatigue and weakness, as well as her propensity for catching colds, a bone marrow transplant is really the best option moving forward.”
I grit my jaw. Doctor Lyons has talked about this before. We already did testing on mom and dad to see if they’d be a match, though parents rarely are. Since Ben and I were adopted, the likelihood of us being a match for her is so slight that we had to pay an external provider to do the testing, since the insurance wouldn’t cover the tests. And we’ll pay for independent testing on any person who could even possibly be a match.
Though, unsurprisingly, nothing came from that testing other than assurances that we would need to look elsewhere.
“None of us are a match, though, for donating,” I say, feeling a bit like a dick for telling Dr. Lyons something she already knows. “What are the other options?”
“As I said the last time we spoke, a blood relative is the best option. Usually a sibling. But it isn’t theonlyoption. We can go through a database to see if others could be a match for her. But it takes time.”
“How much time?” my mother asks, her mask firmly in place, but the red splotches on her neck illuminating how the stress of today continues to overwhelm her.
“Right now, Ivy’s case isn’t life threatening, which is good. But I’ve seen cases that deteriorate quickly. So I think moving rapidly in finding someone to donate will be to her best advantage.”
“What happens if she just stays on the medication?” I ask.
“The side effects aren’t aggressively common, but are still a very real risk. Pneumonia, upper respiratory infections, loss of blood cells, and loss of appetite are the most common out of the bunch. Of course, continuing solely on the medication also means Ivy will need to come in regularly for medication administration through an intravenous infusion. And then, of course, there is the fact that a more extreme form of PNH can eventually result in death.”
“And if she gets a bone marrow transplant?” I rasp, trying not to get too emotional. The last thing Ivy needs to see is me crying or doing something stupid like storming out of the room in an upset rage. “What does the outcome look like?”
Doctor Lyons looks back to me. “Patients who have a good match for bone marrow have the potential for all symptoms of PNH to disappear. It can cure the disease, and in my other patients, it has done so in the majority of cases.”
The rest of the appointment is a blur. More information about transplants and how they’ll search the database for a potential match. Ivy gets more blood work done and we schedule her next date for the medication infusion. And then we’re back in the car and driving the hour back to our house from the USC Medical Center.
At least we have the one thing you definitely need when you’re sick.
Money.
I can’t imagine going through something like this and not being able to get the medication you need or see the doctor you want. We will be able to throw money at an independent party to dive into finding a bone marrow match. Pay for Ivy’s needs, whether small or large.
It’s a welcome relief in the grand scheme of everything weighing down on us right now.
I glance in the back seat and see Ivy, sleeping soundly, her head resting on a soft pillow she brought with her.
She falls asleep pretty easily, now. She has ever since she was diagnosed. I guess it’s the fatigue, along with the fact she has trouble eating. When my mom first told me about what was going on with Ivy, it was right before I’d left for San Francisco.
“She just needs some iron supplements,” she’d told me. “It’s not a big deal.”
Turns out it was a fucking blood disease that’s going to slowly kill her if she doesn’t get this transplant. I’d say that’s a pretty big deal.
My mother and I stay silent during most of the drive. She sits in the passenger seat, her eyes staring out of the window, watching as we whiz past traffic in the fast lane.
“It’s going to be okay,” I tell her, my voice low.
I know Ivy can’t hear what I’m saying, but there’s something that makes me feel like if I can tell this to my mom without awakening the evils that caused this disease in the first place, maybe the threats facing us won’t be able to see where we stand, shaking with fear. Maybe they’ll turn around and head a different direction.
“Don’t lie to me, Wyatt,” she says, her voice sounding fragile and small. “You can say that to Ivy. But not to me.”
We go back to being quiet my mother’s words weighing heavily on me for the rest of the drive.
