Boone
It’s safe to say that yesterday’s game was perhaps the most anxiety-provoking event of my life. It was the pinnacle of my hockey career to be playing in the first line in the second round of the playoffs in a do-or-die situation of game five in front of the home crowd.
But at this moment, I can say that yesterday was a walk in the park. Every gut-wrenching moment of that game, including the sound of the final buzzer ending our playoff run, was sunshine and lollipops compared to right now.
I freeze-frame this moment—burn it into my memory—as I take in the myriad of expressions within this room. Dr. Yoffe just walked in, accompanied by a middle-aged woman who I know is an emotional support counselor provided by the hospital’s hospice unit. Dr. Yoffe looks stoic as usual and the woman standing next to him has warm empathy suffused into every fiber of her being. I sense a calmness about her that is meant to seep into the rest of us but frankly, it’s not fucking working. Steven sits in a chair in the corner, hunched in on himself. He showed up about an hour ago with bloodshot eyes and unshaven face and I know if I were to stand too close to him, I would smell alcohol seeping from his pores.
And my Lilly… stiff upper lip in place, prepared to be the backbone in the room.
My gaze slides over to Aiden, sound asleep and unaware that his world is about to tip upside down.
Lilly and I never did get any sleep last night but when the sun rose I gently pushed her off my lap, and I sprang into action. There’s not much I can do today except offer support, but the first thing I did after using the restroom was head down to the nurses’ station to pilfer toothbrushes and toothpaste. I then stopped by the cafeteria for two large coffees and brought them back to the room. Lilly and I brushed our teeth and washed our faces in the bathroom sink. Aiden didn’t even flinch over the noise we made and it horrifies me to see how deeply he sleeps. It’s almost like he’s embracing an early death.
I shake that thought away, because the one thing Lilly said last night is that it’s in God’s hands. I don’t go to church every Sunday. Hell, I’m lucky if I go a few times a year. But I was raised Methodist and I believe in God. I pray regularly and he and I have had discussions about Aiden since the first time I met him. I believe in the power of miracles and I am not willing to give up. I’m not sure if Lilly feels the same way because she’s not an overly religious person. She wasn’t raised in any particular church and while we’ve had long discussions and I know she believes in a higher power, she admitted shamefully that any prayers she uttered would be like throwing darts at a dartboard, hoping one would stick.
That’s all right. I know my God will listen to whatever prayers she wants to give.
That does not mean I am not being realistic. I heard everything Lilly said last night and I know it doesn’t get any more serious when Aiden’s oncologists and a hospice worker are here to talk to him about end-of-life matters.
Nausea rolls in my stomach even thinking about having to have such a conversation with a person, much less a child.
While we were waiting for Dr. Yoffe this morning and Lilly was trying to get Aiden to eat some breakfast, I stepped out of the room and called my mother. I told her what was going on and she, without hesitation, booked a flight to Pittsburgh. Not ten minutes later, I got a text from my sister Claire who said she was coming as well. None of this was surprising and I never thought to tell them not to come. I’ll need them and they’ll help me be strong for everyone.
Dr. Yoffe moves closer to Lilly and puts a hand on her shoulder. “Are you ready to do this?”
She nods. She’s ready to tell her brother that he’s probably going to die. She’s ready to explain things and then ask Aiden to help decide how he wants to leave this world.
I feel like I’m going to vomit.
As Aiden continues to slumber, Dr. Yoffe moves across the room to Steven. “How are you doing?”
Aiden’s dad shrugs, staring at the doctor through bloodshot eyes. He doesn’t say a word.
Not that it matters… Lilly is the one the doctors talk to. She’s the one who’s in charge.
Dr. Yoffe shakes my hand and then introduces us all to Maria Romero. He had explained that hospice would be involved from here on out. While many people can leave the hospital and enter into hospice care within their own home, he said it was not a good idea in Aiden’s case. While it’s my understanding the doctors are all unanimous in their consensus that the sepsis is too far gone for him to recover, every single person who has laid hands on this boy is holding out hope. And for that reason, they want him in the hospital so that they can take advantage of any sliver of opportunity that may present itself and be ready to provide medical intervention.
“Do you want me to wake Aiden up now?” Lilly asks.
“Yes. Let’s get him up.”
It takes a while to rouse Aiden from sleep. He didn’t refuse breakfast but he only had two bites of oatmeal before he pushed the spoon away and told Lilly he didn’t want any more. She managed to get him to take a sip of orange juice and then he fell right back asleep.
Aiden has gotten so weak over the last few days, he can’t leave the bed on his own and the nurse inserted a catheter for him to urinate. Because he’s getting IV fluids to keep him hydrated, the catheter and bag are necessary for now. But because his kidneys are struggling to work due to the sepsis, it might not be necessary for long.
I move to the very back of the room, farthest from the bed while Lilly gets Aiden up. Because his lungs are filled with fluid, he’s been sleeping in a semi-upright position to make breathing easier, but she uses the bed controls to raise him even higher. With some gentle shaking of his shoulder, she manages to wake him.
“I’m tired,” Aiden whines, pulling the covers up to his chin. His gaze is bleary as he glares at his sister.
Lilly smiles at him, rubbing his head. “I know, buddy. And you can go back to sleep in a minute, but Dr. Yoffe is here and he wants to talk to you.”
Normally, when Dr. Yoffe comes into the room, Aiden lights up like a Christmas tree because they have a close relationship. Instead, his eyes track sluggishly across the space and take the older doctor in before shifting over to Maria.
Dr. Yoffe steps to the side of the bed and Maria follows him. He pulls one of the chairs close and lowers into it, taking Aiden’s hand in his own. “We need to have a serious talk. I know you’re tired but if you could just hang with me for a little bit so we can ask you some questions, I’d appreciate it.”
My heart cracks in two as something passes across Aiden’s face that looks a lot like he understands exactly why everyone is in the room right now. There is a brief flicker of anger, maybe defiance, but then it mists away into resignation.
Aiden props himself up straighter. “Okay.”
Lilly nudges his leg from the other side of the bed, a silent request that he scoot so she can sit beside him. Dr. Yoffe introduces Maria and merely calls her a nurse who will be working with him closely for the remainder of Aiden’s time in the hospital. I lean back against the wall and Steven stays in his chair.
I’m not sure if it was discussed in detail how they’d reveal to Aiden what’s going on, but it seems they give him a choreographed duet of information. Dr. Yoffe explains his medical condition and Lilly helps to translate it into easier, digestible bites. She does this while holding Aiden’s other hand. They lay out everything exactly the way Lilly laid it out to me last night.
Aiden’s first question was Lilly’s and then my main question.
“Am I going to die?”
He asks this of Lilly and no one else, for he trusts her the most.
My heart fucking aches for Lilly and she bends forward to brush her lips across his forehead. Her voice remains calm and steady, and I’m in awe of her strength. “We need a miracle, Aiden, but if we are not graced with one, yes… you’re going to die.”
Tears prickle at my eyes as Lilly’s voice quavers a bit, but she reins it in. “But I’m not going to leave your side, not for a single second. If your body chooses to rally and fight, I’m going to be here cheering you on. And if you just can’t fight anymore… if your body is ready to let go, that’s okay too, Aiden. I’ll be holding you the entire time.”
Steven curls in on himself, puts his hands over his face and quietly weeps. Dr. Yoffe’s eyes have a sheen to them and Lilly is freely crying. I don’t even think to try to stop my tears. This is no time to be without emotion. Aiden should see how loved he is.
Aiden though, remains dry-eyed. Perhaps he’s processing, perhaps he already knew this long before we did. Part of me thinks that’s it… better than any doctor, he knows what his body can and can’t do.
Aiden has questions. He looks up to Dr. Yoffe and asks what he can expect. He has the fortitude and the strength to ask the questions I never would’ve thought to ask.
How long before I die?
What will it feel like?
Will it hurt?
Dr. Yoffe leans in toward Aiden, a reassuring hand on his shoulder. They talk about supportive measures and what will happen if he removes them. They talk about whether he wants a feeding tube, and if he wants to be put on a ventilator if it comes down to it. Questions and answers, questions and answers… no conversation a fucking twelve-year-old should have to have.
In the end, Dr. Yoffe assures him that he does not have to make decisions today but that the Hoffman family has things to discuss.
“If I stop all the supportive care, will I die faster?” Aiden asks. Lilly gasps, horrified. She opens her mouth to protest but before she can say anything, Aiden looks directly at Dr. Yoffe. “I don’t want Lilly to suffer. If I linger, she suffers. Is it one hundred percent sure that I’m going to die?”
I’m simply astounded at the clarity with which Aiden has boiled down the important things in his life.
“No,” Dr. Yoffe murmurs. “It’s not one hundred percent certain. But the chances are extremely slim that your white blood cells are going to step up and help fight.”
Aiden nods as if he expected that answer. Nothing anyone has said here today has had a glimmer of hope.
Aiden turns to Lilly who tries to smile through her watery tears.
“I want to let go. I don’t want any supportive measures. If I live, that’s awesome. If I don’t, I don’t want to drag this out. Is that okay?”
I bet it takes everything within Lilly’s power not to argue with her brother. I know she’s not ready to let him go, but she does the bravest thing I think I will ever witness outside of this young twelve-year-old boy deciding it’s time to die.
Lilly nods. “It’s okay.”
Steven bursts out of his chair and without looking once at his son or daughter, flies from the room. It’s more than he can bear, to think about his son dying. To think about his son choosing a quicker death. Aiden and Lilly stare at the door and it’s Aiden who looks at me and says, “You go make sure he’s okay.”
I drag my hand across my face to wipe the tears and give Aiden a reassuring smile. “I’ve got it covered, buddy.”
I leave the room and catch up to Steven at the elevators. He’s frantically hitting the down button even though he knows it won’t make it show up any quicker.
“Where are you going?” I say as I reach him. Steven doesn’t reply. He just hits the button harder. “How about you and I get in the car and go find an AA meeting? Then we go have some lunch and talk.”
Steven spins on me, his eyes blazing. “My kid is going to die and you want me to go to an AA meeting? Why the fuck aren’t you offering to take me straight to a store to get me a bottle of vodka and let’s sit down and do shots to honor how brave my boy is?”
I put a hand on his shoulder and squeeze. “You know that’s not the answer. If there’s ever a time you need to be there for your family, it’s now. You need to be sober and lucid for whatever time Aiden has left.”
“He doesn’t need me. Lilly can handle everything.”
“That’s not true. Aiden needs you now more than ever and Lilly can’t handle everything. She’s on the verge of a complete breakdown and while I’m going to help prop her up, I can’t do it without you. You want to get drunk and throw your life away down a bottle, that’s fine by me. But you don’t do it until after we get through all of this with Aiden.”
Steven’s face crumbles. “I’m scared. I don’t know how to handle this.”
“I’m scared too,” I say and I pull him into a hug. “We’re all scared. But we are going to hold on to each other until we get through this.”
When I release Steven, I’m relieved to find a bit of resolve in his expression. He huffs out an irritated breath and says, “Let’s go find a meeting.”