We Own the Sky(50)

Rare.  We had heard that word before. His tumor was rare. It was rare that he was diagnosed so young. And now it was rare that his tumor would mutate and become malignant. Did they tell us all that to soften the blow? As if it was a freak accident, something that was beyond our control.

We took a taxi back from Harley Street to the hospital. After seeing our stony faces, how our bodies were angled away from each other, the taxi driver was silent on the way back to Hampstead. We listened to the click-clack of the blinker, the rain beating down on the roof of the car. I took out my phone and started to search for the clinical trial the doctor had mentioned, struggling to keep the screen straight as we went over bumps in the road.

I turned to Anna when we were stuck in traffic. “I’ve been researching that Marsden trial,” I said, “the one that Dr. Flanagan recommended.”

Anna looked at me but didn’t say anything, her face a ghostly white.

“From what I read, it seems like it might be something worth trying.”

“She said it was for kids with leukemia and melanoma.” Anna’s voice

sounded robotic, without emotion.

“Right, but it’s also Jack’s genetic profile.”

Anna turned away to look out of the window again. I saw the taxi driver

staring at us in the mirror and then quickly look away.

“It’s as if we were listening to different conversations,” Anna said, still looking out of the window.

“What do you mean? This was something she recommended. That’s what she

said.”

“It wasn’t something she recommended,” Anna said. “It’s something she said she would ask about. She said there was a very small chance they would take him.”

I saw the taxi driver’s eyes flicker toward us in his mirror. He reminded me of my dad, the way he used to recline his car seat as far back as it would go. His drinks lined up, his little TV wedged into the dashboard.

I thought back to what Dr. Flanagan said about the trial, but it was just a blur.

“So you don’t think we should do it?”

“I’m not saying that, Rob.” Anna paused, her eyes dipping down toward her lap. “Let’s just wait for what the doctor says.”

I nodded, and we did not speak for the rest of the journey. It was as if we were magnets of the same polarity, repelling, pushing each other apart.

The taxi driver was solemn when he dropped us off back at the hospital. I held out a twenty to pay him, but he shook his head. “This one’s on me, mate,” he said, and I could see tears in his eyes.

Sometimes love comes from the strangest places. People don’t realize how

much they can break your heart.

  *

Later that day, we took Jack home. We tried not to be solemn, so we put our faces on, we playacted, stopped for ice cream on the way home.

We all stayed up late watching television. As a special treat, we said he could watch anything for as long as he wanted. We made him special cheese on toast, fed him chocolate and more ice cream. What else could we do?

After Jack finally fell asleep and we carried him up to bed, I opened a bottle of wine and started Googling. There had to be something out there: a caveat to the survival rates, a new treatment, a clarification on something we may have misunderstood. I found studies, forum posts, discussions on Yahoo Answers and Quora, but it was of little use.

What was I looking for anyway? A reprieve? A different prognosis? An

academic paper in the ghettos of the internet that would tell me the doctor was wrong, that Jack had a chance, that my beautiful boy would live?

Can anyone help us?

by Rob? Thu Nov 6, 2014 9:20 pm

Hello,  everyone,  I  posted  on  Hope’s  Place  a  few  months  ago,  after  our five-year-old  son  was  diagnosed  with  PXA.  He  subsequently  had  a resection  and  was  doing  well.  We  have  just  received  the  devastating news that his tumor has come back and is now glioblastoma multiforme.

We met with his neurosurgeon today and she said that a cure is out of the question and all they can do is give Jack palliative chemotherapy. We asked the doctor how long Jack has left and she said probably a year at the most.

We  just  don’t  understand  what  is  happening.  Jack  still  seems  in  such good health. Are there really no other options?

The  doctor  said  there  was  possibly  a  clinical  trial  and  is  looking  into that. (We’re based in the UK but can go anywhere.) Does anyone know about anything else on the horizon for glioblastoma multiforme? Or does

anyone have any experience with new or even alternative treatments?

Any  information  would  be  very  much  appreciated.  We  are  devastated and desperate and just don’t know what to do.

Rob

I looked around on my desk and found Jack’s imaging report and started to search some of the medical terminology on the forum. An old thread from 2012

came up about a clinical trial and, as I read down the page, I felt a flush of excitement, exhilaration. It was a wonder drug, vaunted in the press, for children who had exhausted all other options.

I clicked on a user profile of someone whose son had taken part in the trial.