A different kind of hope

I am sitting in a brightly lit, modern conference room on the 11th floor of the Seattle Children’s Research Institute, surrounded by strangers, desperately wiping the tears streaming down my cheeks and choking back the sobs threatening to accompany them. It is not the first conference of this kind that I have attended nor is it the first time I have actively engaged with the disease that ended my five-year-old son’s life.

I like to think I swim in the deep end of Sam’s disease. I have listened to doctors present on the intricacies of Diffuse Intrinsic Pontine Gliomas (DIPG), the specific ways in which the cancerous cells entangle with healthy brain tissue rendering it inoperable and subjecting victims to painful and debilitating symptoms that are hard, if not impossible, to treat. I have watched researchers display dozens of charts where individual children, the beating hearts of someone’s family, are reduced to dots, where their lives are measured in months and the result, regardless of treatment, is always the same…death. Shortly after Sam died, I even met one of his oncologists for coffee and listened to her discuss the complex nature and unique features of Sam’s tumor as we stared at MRI scans of his brain, directly facing the monster that took my own beating heart. I remained stoic through all of those experiences. I hate being coddled, especially by doctors.

But the keynote address I am listening to is different. It is not an unintelligible recounting of a particular study’s findings or an optimistic roadmap detailing the steps needed to make progress on a particular form of childhood cancer. This discussion led by Dr. Yoram Unguru, a pediatric hematologist/oncologist at Children’s Hospital at Sinai, is discussing hope. More specifically, he is presenting the different types of hope that families in the cancer world exhibit: hope for a cure, hope for quality of life, hope that the child feels loved, and hope that one can do everything they can for their child.

These concepts have forced me to abandon my stoicism. His talk is putting words to the core of deep emotional struggles I have experienced since finding out my two-year old had terminal cancer, to abstract ideas I have grappled with for more than five years. In doing so, he is validating the hardest choices I hope to ever make. Life and death choices. The choice to sign a DNR. The choice to impose death on our friends and family. The choice to hide Sam’s mortality from him. And the choice to stop hoping for a cure.

Hope for a cure

I am sitting on the floor of my aunt and uncle’s basement, changing my twin 18 month olds’ diapers and watching an episode of 60 minutes. My 4-year old son, Sam, napping upstairs has been living with DIPG for nearly two years. The episode is about a new, ground-breaking treatment for brain cancer, piloted by researchers at Duke, in which a genetically-modified polio virus is directly injected into the tumor. A young woman with an otherwise terminal glioblastoma is alive and doing well after receiving the novel treatment. I feel a spark of something I haven’t felt in nearly two years. It’s hope that, perhaps, Sam won’t die.

I read more about the clinical trials in adults before sending an inquiry to the researchers at Duke requesting more information. A few hours later, I get a one-line response:

“Unfortunately, the polio virus treatment is not available for children. My best wishes.”

Infuriated by the lack of detail and the smothering of the first spark of hope I had felt in years, I quickly type my reply, copying my husband and a few childhood cancer advocates in my network.

“Forgive me for the directness of this email, but I find your response to our inquiry lacking. My child’s name is Sam. He is 4 years old and has been living with terminal brain cancer since he was 2. The establishment you work for nationally televised a treatment that could potentially save his life. We reached out to learn more and all you say is the treatment is not available for children. I would like to know why it is not available for children suffering from similar tumors and with nothing but death to look forward to. How can we make it available to children? What do we have to sign? Who do we need to convince? The fact is I won’t accept “no” for an answer when it comes to my child’s life. I am sure you can understand that. Please expect to hear from me again.”

Shaking with anger and adrenaline, I push send. A few minutes later, I get a call from one of the lead researchers on the trial who was featured prominently in the 60 minutes special. He is obviously frustrated by my email. He blusters through all the reasons my request for more information is unreasonable then moves into a long-winded list of his qualifications and accolades before abruptly asking me a few questions about Sam including, “how damaged is your child?” and “what clinical trials is he currently enrolled in?” After a few more appalling minutes of being berated and told my husband and I were “doing our son a disservice” by not actively treating him and that “there was no way he was getting the virus”, I decide to end my conversation with this pioneer in neuro-oncology. I run to the bathroom and vomit hot anger, immense grief and crippling humiliation. A few moments pass and I receive an email from the pioneer that I don’t think I was meant to receive. It reads,

“Just had a less than positive call. Clearly 2 parents with advanced degrees who have abandoned all treatment efforts and were not interested in learning of any of the options that are out there.”

I feel judged. I feel like a failure as a mother. I feel hopeless.

Hope for quality of life

I am standing in the driveway next to my husband and aunt and uncle. It’s a warm September morning and I am equal parts nervous and excited. I help Sam and his twin sisters into their mostly empty backpacks and attempt to coral them for the iconic “first day of school” photo. Sam gently grabs his sisters’ hands and I watch my babies form a little semi-circle of perfection. Tired from standing, Sam plops down cross-legged on the driveway. His sisters sit down next to him as the adults take photo after photo. “CHEESE!” everyone growls in low, menacing monster voices. I breathe in the moment, knowing this could very well be the only complete first day of school experience we will have as a family. It is the most normal thing we have done in years.

We strap each child into their respective carseats and begin the 30-minute drive to the preschool Sam’s hospice nurse and child life specialist recommended — the only preschool that would accept a terminally ill child as a student. We enter the school trepidatiously, all experiencing something new and scary and exciting together. The common room is a rainbow of colors, packed with kids riding tricycles around a small track, stacking huge padded blocks into gigantic forts, rolling giant exercise balls and screaming. I am overwhelmed by the cacophony of young voices and the sheer physical ability of these kids. I sense my family is feeling similarly as we huddle close to one another in the corner, unsure of what to do next.

Finally, the teachers start collecting kids and bringing them to their rooms. We drop Ada off first, then Mae, then Sam. Sam is the most nervous. He looks up at me and Mike and I can see the fear in his eyes. I, too, am terrified. He hasn’t been without us in more than two years, his mobility and vision are limited and his energy levels can plummet unexpectedly. Fighting the instinct to scoop him up and run, we encourage him to join his class. Like a warrior, he courageously follows his teacher into the room. My heart swells with pride and my eyes burn with tears as I watch him walk away. I hold the image close as Mike and I walk out of the school silently together, knowing that our little person is the bravest. That he is a hero.

I feel like we are doing the right thing by creating the opportunity for Sam to have this normal experience. I feel proud of our ability to “let go” of our dying child for a couple of hours each week. I feel hopeful that Sam will learn new things and make new friends and gain confidence he didn’t know he had.

Hope that my child feels loved

I am kneeling before Sam in the basement of my dear friends’ home. The room is full of people that love Sam, that love me. Sam’s hospice nurse is there, delivering morphine and other medications necessary for end of life care. It is nighttime, I think, but the flow of time hasn’t made sense since we were told Sam had “days to hours” to live. I sing Sam a lullaby, like I do every night before bed. He is starting to lose his ability to speak and his breathing is becoming rattled.

I squeeze his little hand three times, a secret message we practiced every night before bed.

“What does that mean?” I ask him.

“It means, I love you,” Sam replies.

“What can I do to make you happy right now, Sam?” I plead.

“I am happy, Mom,” he says.

I feel simultaneously short-changed and immensely blessed. I know how special Sam’s message is and I wish I had more time for special messages.

Hope that I do everything I can for my child

I am sitting in Sam’s old bedroom in our home in South Carolina trying to write about the fourth type of hope Dr. Unguru discussed — the hope that I do everything I can for my child. The story I want to tell is the story of Sam’s final hours. The story of how I hoped I could help him die well. But, I am not ready to tell that story. I don’t know if I will ever be. I do know that this type of hope, the hope for a good death, is incredibly important and very rarely discussed, especially in the realm of children. The hope that they will not die alone or scared. That their death will be free of physical and emotional pain. The hope that you can be there for their final breath.

From the moment we unwillingly entered the world of childhood cancer, it became clear that our culture prioritizes one type of hope over all others. That is, hope for a cure. Hope for a cure is incredibly important! It sustains families suffering through endless hospital stays, violent treatments and the cataclysmic effects of a cancer diagnosis. Parents’ pursuit of this type of hope is also an important driver of innovation when it comes to research and treatment. We fight hard for our kids. We risk everything to save them. We dedicate our lives to spreading awareness and funding innovation long after our personal battles are over.

However, I believe prioritizing this type of hope over all others can can result in misleading or misguided decision-making both for doctors and patients. It can lead doctors to fail to mention that the primary purpose of medical research is NOT to directly benefit the patient but rather to produce data that can be generalized to a wider population. It can lead to discussions like the one I had with the doctor at Duke, where I am portrayed as a parent who is “giving up” because I am not subjecting my son to clinical trials. It can result in torturous, life-ruining guilt in parents who lose their children and feel like they failed to keep their child safe.

This essay is an attempt to pass on Dr. Unguru’s gift to me. If you have ever hoped that a loved one died quickly rather than suffered or felt relief when their suffering ended, you are not alone. If you have ever been frustrated by metaphors that suggest those who fight the hardest survive, you are not alone. If you have ever made choices about a beloved’s life that are difficult for others to understand, you are not alone. If you prioritize a different kind of hope, you are not alone. And, at least in my opinion, you are not wrong.

Teacher. Student. Advocate. Personal essays about grief, loss, mindfulness, mental health, and the complexities of being human.

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