The Shriver Report – The Importance of Palliative Care: One Family’s Story
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The Importance of Palliative Care: One Family’s Story

palliative care

I spent the year of February 2011 to February 2012 building a suit of armor with reasons why my seven-year-old son would not die from his pediatric brain cancer. Every positive phrase from an oncologist, every clear scan, every step in the protocol hammered another plate into place so I could sleep at night without fixating on the possibility that my son could die. The possibility remained a black hole in my mind; a place I could not fathom without falling into its vast nothingness.

My second child, Will, was the fruition of my later-in-life marriage to my fabulous husband, Tom, as well as a present for my daughter, Darcy, who wanted a sibling above all else. Will was musical, mathematical, inquisitive, and adorable. He loved Legos and was always ready for a game of Uno or Charades.

On the evening of February 16, 2012, we received the call. After only three months off treatment, the routine MRI revealed that the cancer had relapsed extensively. We would never give up, but virtually no one survives a recurrence of anaplastic medulloblastoma. We had to confront the inconceivable; the black hole loomed.

It surprised us that the eye of the ensuing medical hurricane became our palliative team. “No, no,” my mind screamed as they introduced themselves, “I know what ‘palliative’ means and this can’t be happening. Will is going to be okay! He’s healthy! I breastfed him for almost two years! We aren’t going to give up!”

They introduced themselves: Hurwitz the doctor, Tandy the nurse practitioner, Rachel the social worker, and Erin the child life expert. They told us about themselves and their purpose carefully, knowing the strength of our flight instinct. If we push a palliative team away, we won’t need them, right?

My television images of death and dying – from horror to Hallmark – didn’t fit these people. I continue to wonder at the irony of the relief I still feel whenever I see the palliative team.

How can we help all of society see death as they do? Palliative teams are not the grim reaper. They are realists who come with fantastic reserves of resources and compassion; they focus on living.

“How do you do this job?” we asked once, unable to fathom the benefits of their jobs. They all paused and Dr. Hurwitz leaned into us, “It is such an honor to be with you.”

Throughout the spring, one of the overriding questions was how to support Will emotionally. Specifically, how much did Will himself want or need to know? How could we create an atmosphere safe enough for him to ask his questions and to protect him from fear?

Rachel was clear: “Let Will lead.” She gave us words we could use, but every indication from Will was that he did not want to hear that he was going to die.

Will’s cancer did not respond to treatment, and in late April, Dr. Hurwitz attempted to answer the biggest question. “You probably have three months.”

As it turned out, we had four weeks, but his timeline helped us ditch the old calendar and create days filled with fun, family, and Will.

To be honest, it would have been easier to run off in pursuit of a fictitious miracle cure, but they held our hands and Will was enjoying his life…so we dug in. For the first three weeks of May, we snuggled, swam, played board games, went to sporting events, baked, watched movies, did art projects, and provided Will with an unending stream of Lego projects.

While Will and Darcy did memory making with Erin, Rachel began guiding me and Tom through hospice and funeral decisions. “Do you want Will to be at home, in the hospital, or at Christopher House?”

Although Tom and I were by no means confident that our medical skills could handle it, we knew where Will would want to be: Home. Rachel nodded.

On the Saturday of Memorial Day weekend, we headed for a hotel in Dallas for two days of fun. Will was sleepy and headachy. We hoped he would feel better when we got to the hotel. Will slept for most of the afternoon and then woke up to eat some dinner and play Legos. It was the last time we would hear his voice.

Tom woke me at 2:30 am and we all sprang into action. Will couldn’t talk and could barely move. He had vomited and urinated and was anxious, so we quickly gave him the “comfort care” medicines that Dr. Hurwitz had prescribed “just in case.” Our tiny family unit raced home to Austin in the wee hours of Sunday morning.

Because it was a holiday weekend, all of our regular oncology and hospice staff were not available. Our palliative cell phone contacts, on the other hand, were constant and reassuring. Events unfolded quickly, but Dr. Hurwitz sized up the situation and immediately ordered a morphine pump for Will. “There’s no reason for him to feel any pain,” he assured us as our tears welled up again.

At nine o’clock that evening, Tom and I had all of our hands busy when Tom’s phone rang. Darcy answered it and Dr. Hurwitz’s voice said, “Darcy?” He might as well have been standing in the bedroom with us, giving us confidence.

We spoke to him several more times the next day before Will finally took his last breath on Monday night. The story of our grief is too overwhelming to tell here, but we have other emotions, too. We are greatly relieved to have lived through our last spring together without regret.

Despite the inconceivable stress we were under, the support that the palliative team gave allowed us to live every moment and to give Will a death free from fear and pain. It was our last gift to him.

Sara Lucas is a Reporter for The Shriver Report.
Sara Lucas is a seasoned educator with a passion for social justice. Her life took an unexpected turn in 2011 when their 7-year-old son was diagnosed with brain cancer.
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