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. Her last visit to the forum was 2012. Her signature at the end of each post read:
Clinical trial Oct ’12, Damon joined the angels 23/12/2012
I clicked on a few more profiles. None of the posters on the thread had visited the forum since late 2012. Their children were all gone.
14
There was a moment when I woke. A second, a millisecond, or perhaps less. In that fuggy world between worlds, it was just another morning, of sunshine and school, of late breakfasts and happy squabbles. And then I remembered and I wished I could go back, to wake once again, because even that miniscule fraction of a second, that half breath, that flicker of the eye, felt like paradise.
Anna was still asleep, her breathing deep and regular, so I reached for my phone and opened Hope’s Place.
Re: Can anyone help us?
by SRCcaregiver» Fri Nov 7, 2014 1:20 am
Hello Rob so sorry to hear about your situation. My daughter had a similar diagnosis and it hit her very hard. Hers spread so quickly that hospice was the only response in the end. Cancer is a terrible disease ill be praying for you...
Re: Can anyone help us?
by Camilla» Fri Nov 7, 2014 1:58 am
I am very sorry to hear about Jack’s diagnosis. You are very welcome here and will find lots of support. We never know when or where the finish line is, so please just love the journey.
Re: Can anyone help us?
by LightAboveUs» Fri Nov 7, 2014 7:30 am
Holding you in prayers Rob. You might not like to hear this right now but you have to focus on the time you have left. Cancer really can be a gift. It has allowed me to appreciate what is important in life and taught my family how to live. My daughter lived for much longer than anyone thought possible and she made the most of her time. I will be praying for you on your journey. Much love.
Was that it? The consensus? That we were to enjoy the time that we had left with Jack? That we were to celebrate every sunrise, every dew-dappled morning? Because Jack was a “survivor” now, on a “journey.” Oh, how I had already come to hate those words.
* * *
It was evening, Jack had gone to bed, and Anna was reading in the living room,
