I have had the unsettling experience of being told, on three different occasions, that my son's death was imminent. I know the routine now. Every three months we get an MRI, and if the news is good, every nurse who passes us will smile, or even mention in the waiting room that "the scans look real good." When the news is good, no one minds ruining the surprise.
The bad news is different. We are left sitting alone, and nurses who pass by either don't make eye contact or make uncomfortable small talk, avoiding the topic so obviously that what they aren't saying speaks volumes.
When the news is especially bad, the room we are taken to has a team waiting in it, fully assembled, each waiting to share their piece of information about the new reality we're facing.
My son Joel has been battling an atypical teratoid/rhabdoid (AT/RT) brain tumor for three years. He was diagnosed at age one, and his first recurrence was in October, three months before his second birthday. He was given a few weeks to maybe four months to live, and we were told that although it was likely he'd be alive at Christmas, he probably wouldn't be comfortable.
"This is a tragedy," our neuro-oncologist told us, with tears in his eyes. Our two favorite nurses-the ones who had made the long days in the infusion room almost bearable because of their willingness to laugh with me-were already crying. The shared love of this team released our own tears, previously bottled up by shock.
We are people of faith, and we believe a series of miracles led to Joel's five-month remission on palliative care. The tumors that eventually returned came one at a time, instead of exploding all over his brain as predicted. Some nurses shared our faith, and some did not, but all were willing to answer our practical questions about science, medical expectations, and our son's continued care without belittling our beliefs. Whether they thought Joel was "a miracle baby" or just one of the beautiful, unexplainable exceptions, their joy-when it became obvious that Joel was living and not dying-is something I will never forget.
Last year, 11 months after Joel was declared terminal, we were escorted into a room with our neuro-oncologist, two nurses, and an oncology social worker (the social worker was a giveaway that the news would be devastating). "Joel has three new tumors," we were told, "two in his brain and one in his spine. We don't know how to explain the year you've had, but this is what we were expecting a year ago when we told you he was dying." How were we all together again, a year later, crying in an exam room, reliving the worst moment of my life?
Amazingly, two months later, Joel's MRI showed that the two tumors in his brain were gone: they had resolved on just palliative treatment. The tumor in his spine was shrinking. Our neuro-oncologist had eager company, our nurses, as he came to deliver the news, and there was shocked joking as we rejoiced that Joel was, once again, defying the odds.
This last year has been incredible. After cheating death twice, our son was beginning to catch up. He could swallow solid foods again and had finally begun to walk. We even had five amazing months with no treatment whatsoever, not even palliative at-home chemotherapy. After so many good MRIs that we thought we were finally in the clear, just over 12 months from the last declaration that Joel would not live much longer (and a few months before his fourth birthday), Joel had another bad MRI. It showed a large tumor in his spine, growing much more quickly than all the other recurrences.
"I believe this level of growth represents a new phase in his disease," said his physician, adding that Joel would not see more remissions of the sort he'd had in the past but was "entering the downward spiral."
How does our team continue to deliver this roller coaster of news? They live it with us, happy when we are happy, sad when we are sad. They are very clear with us about what to expect, and yet they hold a little of our hope. There is no easy way to hear, three times, that your son is about to die. But given a choice, I would always rather hear it from someone who expresses love for my son. I am grateful that our physician and nurses are repeatedly willing to set aside stoic professionalism and relate to me personally, letting me draw my cues from them, treating me like a friend who has been there for every up and down since the first diagnosis.