After the End(41)

“The hospital has applied for a declaration that the provisions of life-sustaining treatment are no longer in the child’s best interests.” Laura reads from a file on her lap. “Specifically, they seek declarations that (a) the child lacks capacity to consent or refuse treatment, by reason of his minority, and (b) that it is in his best interests to receive no further form of life-sustaining treatment, instead receiving palliative care at the discretion of his treating clinicians. OK so far?” She looks up, and I nod, although I am far from OK. My head wants to turn to look at Pip, my hand wants to seek out hers. This is something we should be facing together, and it feels every shade of wrong to be here alone.

“How can it be in his best interests to refuse him potentially lifesaving treatment?”

“That’s precisely what we’ll need to demonstrate to the judge.” She checks off the points on slim fingers. “One, that the proton beam therapy you have identified has a strong chance of success; two, that the potential benefits to Dylan outweigh the negatives.”

“What negatives?”

“The impact on him of a transatlantic flight, moving hospitals, more radiotherapy . . .” She gives a little shrug, as if to suggest the risks are endless, and I feel a sharp stab of anger. I reach for a croissant and use a napkin as a plate, tearing the pastry in half, so I don’t have to make eye contact. Yes, there are risks. Yes, taking my son halfway across the world is going to be tough on him, even before the side effects of the proton beam therapy kick in.

But the alternative . . . the alternative is worse.

“The hospital argue that the quality of life expected by your son following proton beam therapy is significantly below what would be considered reasonable.”

“Considered reasonable by whom?”

“An excellent point. The term is subjective—we’ll look to demonstrate the various ways Dylan could enjoy life despite his disabilities.”

“What do I need to do?” I consciously mirror the crisp tone my barrister has used throughout our conversation.

“Help me build a case. Dr. . . .”—she checks her notes for the name—“Sanders will be allowed to give evidence via video link, but he’ll be expected to have examined Dylan in order to report his findings and support your case.”

I’ve lost track of how many doctors I’ve spoken to in the last two weeks, how many I’ve emailed with the subject heading Toddler with medulloblastoma. Who knew there were so many proton beam therapy centers in the US? I found Dr. Gregory Sanders, from Houston, Texas, when I stopped searching for “proton beam oncologist” and instead searched for “proton beam court case.”


Mr. and Mrs. Howes gave an emotional thanks to Dr. Gregory Sanders, whose “compelling” evidence undoubtedly contributed to this morning’s ruling.



I had found our doctor.

I might not have done this before, but he has. And he won.

“I’d also suggest speaking to independent physios, play therapists,” Laura is saying, “anyone who can give a view of Dylan’s condition without being swayed by the trust.”

“What if their findings are the same as Dr. Khalili’s?”

“Then we don’t use that evidence.” She rifles through the file before looking up again. “My understanding is that proton beam therapy may prolong your son’s life, but it’s unlikely to remove the tumor completely. You might go through all this for a very short amount of time. Is that something you’re prepared for?”

“Dylan is almost three years old. A month represents almost three percent of his life. Three percent. Even if proton beam therapy gives us only nine more months, it’s adding twenty-five percent to his life expectancy. That’s the equivalent of you or me living for another ten years.” I look at her. “Wouldn’t you take that?”

Laura avoids the question. “I understand,” she says instead.

“What’s stopping me taking Dylan out of hospital?”

If she’s alarmed by the suggestion, she doesn’t show it. “Right now? Nothing. But the law can move quickly when it needs to, Mr. Adams. The police could apply for an emergency protection order, Dylan could be made ward of the court, or subject of a prohibited steps order carrying a power of arrest.” Laura pauses. “And, more importantly, without the correct medication, the right equipment, your son’s welfare might suffer.”

I’m silent, and she holds my gaze. “Mr. Adams, are you one hundred percent certain you want this to go to court? Whatever the outcome, this is going to have a lasting impact on you and your family.”

I see a flicker of sympathy in her eyes, and I answer before the quiet voice of doubt has a chance to creep in. “I’m certain, Ms. King. I want to give my son a chance to live.”

There’s a pause before she answers. “Then that’s what we’ll do.”

I check the time as I leave her chambers, mentally adding four hundred and twenty pounds to the rolling tally in my head. We have savings, thank God, but the legal fees will eat through them in no time, and that’s before the treatment bills start coming. Dr. Sanders has agreed to treat Dylan—treatment that could run to a hundred thousand dollars—pro bono. Charity, he said, and I’m sure that’s a part of it. Publicity for the clinic, that’s the main reason. Another court case won, another line on his résumé. It doesn’t matter why, it only matters that he’s doing it. The flights, though—he won’t pay for those. Living costs for the weeks we’re in Houston, the hotel I’m staying in right now. I feel a surge of bitterness that I ever moved to this goddamn country with its archaic laws, that Pip dismissed the need for health insurance, that I even met her . . .