Theme: Talking to the Child Who is Dying

El diagnóstico de una enfermedad grave obliga a los padres a aventurarse en un territorio desconocido y a menudo complicado, como navegar por el sistema de atención sanitaria o tomar decisiones médicas importantes. También se enfrentará a un nuevo desafío: comunicarse con su hijo sobre su enfermedad, tratamiento y pronóstico. De hecho, muchos padres consideran que este es uno de los aspectos más abrumadores de la tarea de cuidador. Sepa que no está solo en esta preocupación y que hay apoyo disponible para usted.

Theme: Talking to the Child Who is Dying

The diagnosis of a serious health condition requires parents to venture into unfamiliar and often challenging territory, such as navigating the healthcare system or making important medical decisions. You will also face a new challenge: communicating with your child about their condition, treatment and prognosis. Indeed, many parents find that this is one of the most daunting aspects of the caregiver journey. Know that you are not alone in this concern and that there is support available to you.

Theme: Talking to the Child Who is Dying

As caregivers, we want to meet our children where they are with what they need in ways that are appropriate, honest, and truly supportive. This can feel tricky and even scary in the face of a serious diagnosis – whether it is the child themselves who is sick or a sibling or cousin or classmate. Caregivers are often asking tough questions of themselves: is my child too young to hear this information, is this the right moment, how do I start a hard conversation with my child, will my child even understand? This presentation and conversation will give you tools and strategies and reassure you that regardless of the type of diagnosis, or how young the child is, or if the child has a developmental delay, that you can build the foundation for a trusted, safe space and relationship where they can repeatedly share what they are wondering or worrying about.

Child Life Specialists are particularly skilled at working with children and creating environments for their expression of worries and giving them a framework for understanding. This event featured a specialist from Child Core Family Support, a resource that empowers caregivers and provides information, education, and tools to help their child through a medical journey. Watch this event to learn how to navigate diagnosis conversations with children and how to use developmentally appropriate language, concrete tools, and play to support their understanding and learning.

Theme: Talking to the Child Who is Dying

I walk into a patient room. It’s dark – the teenagers’ rooms often are. I introduce myself to Nora, who is sitting in bed writing in a journal. She is kind, quiet, and very polite. She stops what she’s doing to talk. 

“Hey Nora, I’m Katie. I’m a nurse practitioner with the advanced care team. What are you up to?”

“Just writing in this journal they gave me. I love this quote I found, it’s about truth.”

We chat for a minute, and I seamlessly transition into my introduction of our team. I share how our advanced care team helps to support all kids with a cancer diagnosis. We work to address their symptoms throughout treatment, to support them and their families, and work to achieve goals that are important to them. Nora nods along, then shares quietly about herself when asked. She’s a junior in high school; she loves to spend time with her friends; she loves to eat. After a bit, I excuse myself and explain I will be back tomorrow to check in.

Back in the office, I write her progress note. Progress notes are a necessary evil for providers – ensuring we communicate clearly and consistently to other members of the care team and track the work we do with patients and families. While I’m documenting her history, my recommendations for ways to treat her nausea, and noting other services that should meet her, I can’t stop thinking about her truth quote. Ultimately, I head back to Nora’s room. 

“Nora, when I was in here before, you shared that you love the quote you were journaling about. Will you share the full quote with me?”

She easily repeated it from memory, “Rather than love, than money, than fame, give me truth.” [Henry David Thoreau]

“That feels really important, Nora. Can you tell me more about what it means to you?”

Nora explains that in the face of her diagnosis, she kept hearing that quote repeat in her head. It is one she has loved for a long time, she explains. She wants her life to be “big and full, but I don’t have to be famous or something for that to happen.” She admits to me that while the news she is hearing scares her, she wants no sugar coating, no skirting around the obvious, no empty guarantees. “I don’t have time for anything but the truth.” As I often am in my work, I am humbled by the strength and grace of this young woman facing a devastating diagnosis. 

We make a plan that involves a promise I’ve learned to honor from other amazing palliative care providers who have guided my growth in this field. I tell Nora I can’t make any guarantees about her future, but I can guarantee her these things:

I will always be honest with her. 

I will always listen to her questions and respond to them directly. 

And I will always tell her when I am worried. 

The days pass, then weeks, then months. We learned other things about Nora – things far more important than the determined tumor spreading through her despite chemotherapy, surgery, and radiation. We learned about her love for fanny packs, her job at Dairy Bar, her wigs which she treated as her babies. We learned about her family, the ever-present parade of friends in and out of her hospital room, and we celebrated with her when she was named Prom Queen. Life lived on through relapses, progression, and treatment. Life loved on.

Again and again, our team was able to draw from that quote: one simple line from one meeting with Nora. We knew how imperative the truth was to her. I lost count of the conversations that began with some combination of that first conversation. As determined as Nora’s cancer was, her spirit and grit remained true. 

316 days later (it matters, and it doesn’t matter, right?), I entered Nora’s room to process after the oncology team had left. Her cancer had progressed further. Our options to treat the ever-evasive tumors were dwindling. She looked up at me under eyelashes heavy with tears. 

“Are you worried?”

“Yes.”

“I want to be here at the hospital. For the end.”

We made plans. Time passed. Nora went home, and eventually returned. Her room was full of music, of friends, of family, of home cooked food. Her room was full of truth.

I write little of Nora’s actual death, because while it was an important part of her story, she wanted it to be the least of her story. Her story was her life, one that she continued to live as brightly as she could, one we were privileged to bear witness to. 

Knowing Nora has made me a better provider. I listen more closely. I look for the one line in a whole conversation that becomes the thread that weaves the rest of a story together. Her legacy lives on. 

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Theme: Talking to the Child Who is Dying

I used to wonder if I would know when I was in love. People say it’s a feeling like no other, and you’ll know when you know. But would I? Having never experienced it, would I recognize the feeling? Would I truly know if I was in love with someone and they were in love with me? When it happened, I recognized it. I knew. Instinctively, I knew. During my first pregnancy, I worried if I would know when I was going into labor. Or would I be the first time mom that heads to the hospital again and again with what I thought were real contractions just to be sent home and be told to wait for the real thing? I needn’t have worried. When the time came, I knew.

When our daughter’s cancer relapsed, her chances of surviving the disease were diminishing. Her scan results used to be more definitive, we used to hear encouraging news like the tumor shrank by half, or the smallest lesions on her lungs can’t be seen on this recent scan. Now we heard things like; This scan wasn’t as clear as we would have liked to see. Things didn’t get worse, but they didn’t get better. Did a new tech run this? Lauren’s recent pneumonia made the pictures of her lungs blurrier than last time, so it’s hard to see if the tumors shrank. This happened over the course of a couple of months. We began to wonder why the chemo wasn’t working like it used to. It was unsettling. And scary. 

During her recurrence, I remember meeting our palliative doctor on the way back from the cafeteria where I ran to get Lauren some lunch. We were alone in the hallway. I don’t like where this is going, I said. I’m really scared. Our palliative doctor, whose advice I’d come to seek before anyone else’s, said, I don’t like it either. How will I know? I asked her. How does this work, I mean, are we going to come to the clinic some morning and you’ll tell us she’s dying? Is that what happens? I think she said, It may be more gradual than that. Lauren may not feel as well. She may start to have more bad days than good ones. Her counts may take longer to rebound. She might require more frequent transfusions. Scans may stop having neutral news and have bad news. It’s not happening now. But if you’re wondering if you’ll know, I think you will.  But would I?

Throughout her diagnosis, Lauren would have big worry days. These days would crop up every few weeks, more so at the beginning of her diagnosis. Her big worry was that she was dying. In the car or the waiting room, she’d whisper close, I have my big worry today. And then she would rely on me to tell her doctors. Lauren has a big worry today, I’d tell her oncology team. She’s worried she’s dying. They always treated her big worry so sacredly. I remember they would stop, and we’d all stay quiet for a moment. And they would tell her, Lauren, we will always be honest with you. Please know we will always be honest. And we will tell you if you are dying. And we can honestly tell you that you are not dying today. I remember wanting them to stop at “you are not dying” and forget about the “today”. Why add that? It’s such a scary and depressing thought. She’s only a kid and you’re going to scare her I thought. You’re sure scaring me. Later I realized, they were keeping their word. They were being honest.  

I am immensely proud of Lauren that she was able to articulate that big worry. My introverted, soft-spoken, shy 7-year-old gave voice to the biggest worry. My child, who when she tried a new food at the dinner table made everyone close their eyes because she was too bashful to see everyone’s reaction, was able to give voice to most adults’ biggest worry. Our Lauren said it out loud. Scary and hard words out loud. What a privilege, what an honor that Lauren trusted me to be her voice. Our oncology and palliative teams responded with such kindness and honesty. Each time it came up, they met my child’s big worry with the sanctity it deserved. To say they created a safe space for Lauren doesn’t go far enough. They created a protective barrier between Lauren and cancer. They wove this emotional safety net where you can say the hardest thing here, and it will be held and honored, and we will help you feel protected.  

As cancer treatment got more routine, Lauren still had big worry days. But she now knew if her counts were down, it didn’t mean she was dying; it likely meant a transfusion was needed, and maybe an overnight hospital stay. During some chemo cycles, while waiting for the lab to send back her counts, she’d say, I need a transfusion. I can feel it. She knew her body and she was right. She’d miss school and we’d have to use the overnight bag I always carried with us. She hated that bag. 

Two years after Lauren was diagnosed we took a trip to the beach. It was a bit of a make-up trip, as we had planned a trip like this the exact week Lauren got diagnosed, and had to cancel it. This time we traveled with a cache of medication, injections, and thermometers. Lauren’s oncologist helped me plot out the drive and identify which hospitals along the route we should stop at if Lauren fell ill. I remember looking at the map during the drive, and thinking okay, for the next 2 hours, the closest hospital is ours. For the next 3 hours, if something happens, we’ll go to St. Jude’s or double back. The drive there and back was one prolonged anxiety attack watching dots on my map approach and pass. 

On a walk along the beach with my husband Dan, we held hands and looked at the sunset. I don’t think Lauren’s going to survive this, I told him. I don’t either, he said. Neither of us had ever said this out loud to each other. How long have you thought that? I asked. I don’t know, he said, a little while I guess, it’s been coming to me gradually. Me too, I said. But I’m nearly sure now. Yeah, me too. What do you think we should do? he asked me. I don’t think she knows yet, I think she will tell us if she’s feeling it. I don’t think the other kids realize either, I said. As much as we can, I think we should let her be a kid. Let them all be kids. And let’s hope and trust we recognize the right time to tell them. 

For the next few months, we didn’t tell anyone about our conversation. I searched for patterns of decline: was she having more bad days than good? How many hours did it take for her counts to rebound this cycle? Was it longer than last time? We tried to give Lauren as many normal and special experiences as we could. She desperately wanted to be a normal 4th grader, so she attended school every day possible. She played with her siblings and her friends. She did some chores, fed the dog, and made her bed. In between treatments and school, we made time for special moments. Lauren had overnight visits with her cousins. She went to the lake house. She visited her grandparents. She went on a field trip. We went to the movies. 

Driving to school one morning, Lauren and her twin sister Emma were on the lookout for cute dogs. Both girls told me the kind of dog they planned to get when they grew up. This was a recurring and evolving conversation for years between the three of us. We had already mulled over this topic 100 times. Now talking about it was both the sweetest and most excruciating thing. I could barely withstand it. I don’t recall what kind of dog either wanted. I was too struck with the thought that Lauren wouldn’t grow up. 

Weeks later on Halloween, the girls were planning their costumes. I know what I want to be this Halloween, and maybe next year Lauren commented. Mom, what do you think I should be next Halloween? I don’t know honey, I said, pretending to look for something on the floor. I think you can be anything you want. Next Halloween felt like light years away. It crushed me to think about it. Please let her make it to this Halloween I thought. Please stay strong enough to be a kid this Halloween.  

That November, Lauren was selected as the pediatric cancer ambassador to drop the puck for her beloved Chicago Blackhawks at their NHL Hockey Fights Cancer Night. It was the best day of her life. She was out on center ice with a crowd of 21,000 fans cheering for her. She waved like a pro and her smile lit up the United Center. What a gift for Lauren to get this day. Dan and I watched from the stands. We squeezed each other’s hands. Please let us know when to tell her. I hope we know. 

Amy Graver currently works in the corporate world, and is a writer, a wife, and mom of four. Her daughter Lauren was diagnosed with rhabdomyosarcoma at age 7. Amy’s writing chronicles the journey on which cancer has taken her family. Lauren’s cancer diagnosis imposed a new reality and a new perspective on life. She is dedicated to making the cancer experience better for future families. Amy is an enthusiast of US presidential history, she aspires to be a professional seashell collector, and is absurdly competitive about things that don’t matter.

Theme: Talking to the Child Who is Dying

This far-ranging conversation with pediatric psychiatrist Dr. Elena Lister is for any parent, caregiver, clinician, teacher, counselor caring for a child anticipating or experiencing the death of a sibling. It is prompted by the release of the book she co-authored with Dr. Michael Swartzman: GIVING HOPE: CONVERSATIONS WITH CHILDREN ABOUT ILLNESS, DEATH and LOSS, which is filled with practical guidance.

Theme: Talking to the Child Who is Dying

Theme: Talking to the Child Who is Dying

The father of a young woman who was diagnosed with Osteosarcoma at age 5 and died at age 18 from complications from years of treatment, speaks about how he fought to get his daughter home to die.

Theme: Talking to the Child Who is Dying

Dr. Scot Bateman, now a PICU MD, wrote this poem as a 2nd year resident. If ever we need evidence of how providers can be open to and touched by their patients, here it is. If ever we need evidence of how impactful honesty — delivered gently and lovingly — is to the care that children and parents seek, here it is. If ever we need evidence of the courage of children AND clinicians in the face of the limits of modern medicine, here it is. 

Thank you Scot for writing this beautiful tribute to Emily, and to letting us share it here on CPN these many years later.

***

A Death Smile

I told Emily a joke every day I knew her
A dying child is still a kid
Who can and wants to smile

An 11 yr old with relapsed T cell lymphoma
Bald, steroid chubby
Bed bound from weakness
Innocent and open
Loved and loving
Radiating hope
And trust in me, a second year resident

Admitted as a “last ditch”
Racking her body with one more round
Of energy sapping chemicals
Hoping

Day after day, I try to treat
Expected and unexpected complications
Learning as much as I can

About medicines and side effects
About central lines and infections
About tumor cells and growth

Emily knows and appreciates this
As much as every new joke
But the tumor ravages on
Nothing seems to be working

Her pain is real
She knows that I see this
The jokes are for her
“Why do Gorillas have big nostrils?”
Palpable anticipation of her laughing is fun
“Because they have big fingers”
Her laugh is hearty and genuine and infectious
But the jokes are for me too
She gets equal pleasure seeing me smile

It metastases to her spine.
Morphine drip becomes our main therapy
“It’s not good, is it?” she says through knowing tears
“No, it’s not,” is all I can honestly say
She contemplates that answer
Suddenly, she asks
Curiously, earnestly, and fearfully
“Scot, what is it going to feel like when I die?”

My shock at her question
Induces a surreal state of mind
By stretching my preconceived notions
Of doctoring and caring beyond my boundaries
No one taught me how to answer that in medical school

Words used particularly with kids
“You can fight,”
“Be strong,”
“Hold on.”
Come to mind
But they’re hollow
Her look demands honesty
We both know she is dying

I pause and ponder
The unknown and the unknowable
Hoping the words come out right

“I think you will probably feel like you are falling deeper and deeper asleep,”
Says a slow, serious voice that quivers
“You will find it harder and harder to wake up and see all of us here,
But finally you won’t be able to wake up.
Instead, you will be in your dreams from then on.”

The words hang in the air
As she stares at me
With her own lie-detector

Her first words astound me
In their nobility and unfailing hope
“I like my dreams,” she finally says, resolutely
She starts crying uncontrollably
But I sense relief and a peace
Acceptance not fear
And I see just grace

My eyes have not been dry since her initial question
They let loose as well
I marvel at the depth of my sorrow
That our medicines and best intentions have failed
A child
But these tears calm me too
By finally being able to help this little girl
Somehow
Even if it was only hope in a dream

A few days later
Slipping in and out of consciousness
Emily starts saying goodbye
When she can
To family and friends who cared
One by one they leave her room
Shaking their head in disbelief
Wiping away tears

Later, alone with me in her room
Barely able to open her eyes
She wearily asks for a joke
As a joke
It is hard for us to smile

She motions for me to come closer
I lean in
“Scot,” she whispers
“You are going to be a great doctor.”

I look at her in utter amazement
Fumble for words of thanks
And feel so incredibly and deeply honored
By this beautiful gift
Yet, humbled beyond belief
Incredulous that her faith in me
Lasted longer than her body
My feeble definition of a good doctor
Altered and expanded forever

That is all she said
She drifted off into her dream world
And passed away that night, peacefully

A huge void existed the next day on rounds
One that was difficult
To fathom or interpret or describe
But in that emptiness
Was the beginning of a fullness
A spark of inspiration
That grows and grows
And blesses my life as a physician

Thinking of her now
Tears well up in my eyes
Such a tragic loss of a beautiful spirit
But ironically her memory
Enlivens each day with hope
Giving me the courage to smile

Can there be such a thing as a death smile?

Theme: Talking to the Child Who is Dying

My daughter Lauren is 7 years old. She loves soccer, our new puppy, blue Gatorade and playing outside. Lauren is a twin sister to Emma, and a little sister to Connor and Claire. On Monday morning, my husband Dan takes Lauren to the pediatrician for a stomachache. I have an appointment downtown. Dan calls me when I’m in the parking garage. He’s crying. The pediatrician recommended Lauren get an ultrasound at the hospital, maybe it’s a blockage in her bowel. The ultrasound technician pulls Dan aside, out of earshot from Lauren and tells him it looks like a tumor and Lauren needs to be admitted. The oncologist will meet with us as soon as I get there.

It’s Wednesday night. It’s been less than 72 hours or a lifetime since that call. Dan brought the other kids to visit for a few hours. He just left to take them home. We both have a job tonight. He will tell our other kids Lauren has cancer. And I’ll tell Lauren.

I stall, for hours, I stall. Since Monday, the child life specialist keeps finding me. She asks if I told her yet. She offers to tell her for me. Lauren needs to know she reminds me. Lauren needs me to be honest and tell her. I know I say defensively. I haven’t told her yet, and I want it to come from me, and it hasn’t been the right time. As if there is a right time. I’m telling her tonight. I don’t think she believes me. I barely believe me.

Lauren knows I’m acting weird. I’m fawning over her, being overly solicitous, even more so than I have been since she was admitted. The show on Disney Channel ends and I turn off the TV. Hey Lauren, we need to talk. She’s a sensitive kid. I like to think all my kids are gifted, and I often joke that Lauren is a gifted worrier. She’s only 7, but Dan and I boast to each other she worries at a high school level.

Her eyes get big. I pull her onto the couch near me. Hey, I say, and I grab her hands. Mom, what’s wrong, what’s wrong, please tell me she begs. Well, the doctors figured out why your stomach has been hurting. Why? What’s wrong with me? I take a breath. You need to say it. Tell her I tell myself. Just say the words. Please let me get the words out. Let me get these words out and not break her. Please don’t let me break her. Tell her. Do it. Say it.

It’s cancer. You have cancer Lauren. What? She screams but it’s also a cry. It’s loud and guttural and I’ll never forget that sound. What did you say? I don’t want cancer. No mom. No. No. No. I’m just a kid. No. Mom did you say cancer? No. I can’t have cancer. I don’t want cancer. Lauren. Lauren. Lauren. I don’t want you to have cancer. No one wants that. She’s crying now. Hard. She pushes me away. She’s furious and confused and scared. We cry together for a long time. She’s still crying, but softer now. Mom, what color is it?

I know exactly what she means. The only person with cancer that Lauren knows is a teacher at school. Mrs. F. had breast cancer. Our family participated in some fundraisers. Claire started making and selling beaded bracelets and donating the money to Mrs. F’s family. Soon our whole family was making them, on the couch, watching TV together and making bracelets. Mrs. F. died. I know Lauren is asking me if she will die.

Are you asking me if you have pink cancer? She nods. No, you don’t have pink cancer. I see the slightest bit of relief on her face. What color do I have? Well, I tell her, there are lots of colors of cancer. You know that box of crayons we have at home? Not the one with 16 colors that you need for school, but the big box with the built-in sharpener, that one. Do you know that one? She nods again. Well, cancer comes in as many colors as there are in that box. She asks again. What color do I have? I’m not sure what to say. I want to say the color of the saddest feeling in your heart, the color of your world when it falls apart, the color that scares you the most. I punt. Lauren, what color would you say you have? She thinks, hmmm, probably blueish. Maybe green. No, blueish, she’s sure. I’m surprised she picks blue. It’s her favorite color. She only picks out blue sneakers. Her favorite outfit is a blue shirt, blue leggings, her blue shoes, and a blue headband. I wouldn’t have guessed blue cancer.

Blue huh? Yeah, she says. Mom, will I die? I’m trying hard not to cry now. Trying hard not to reveal my immense fear and dread. Lauren is pretty good at reading me. I feel like my head is see through and she will know the things she’s not ready to know. I worry she will see my worries and adopt them as her own. See, the apple doesn’t fall too far from the tree, I’m a gifted worrier too. The thing is Lauren, and I look at her blanket and get an idea. The thing is, the doctors know the color of your cancer, but they don’t yet know the shade. Her fleece blanket is a gift from someone, and it’s tie-dye blue. Look at your blanket. You see all these shades of blue? The doctors need to figure out what shade of blue your cancer is, because they know the color, but they don’t know the shade. Everyone’s cancer is a different shade. What shade was Mrs. F’s? It was pink I tell her. A bright pink.

When the doctors figure out what shade your cancer is, they will know what medicine to give you. Mom? I don’t want cancer. I really don’t. I want to go home and not have cancer. I know honey. I hug her. That’s what I want too.

She’s quiet for a while. Does it have a name mom, the cancer? Rhabdomyosarcoma. I can barely get it out of my mouth. It feels foreign, vile, disgusting and I don’t want to say it. Lauren repeats it slowly and perfectly.

More quiet, then another question. Mom? Do you know why I got cancer? No, I don’t. I’ve been thinking about that same question too. And you know what I think Lauren? I don’t think you or I or dad will ever figure that out. I think, for our whole lives, we won’t ever be able to answer why you got cancer. You know what else I think? What’s that mom? I think that the only thing we can do now is to work on the how. Since we can’t know the why, let’s work on the how. Like how we help you get better. And how we figure out the shade. And how we get used to saying words like cancer and rhabdomyosarcoma. And how we show you how much we love you. We sit on the couch for a long time. The hospital bed scares her, and she wants to be close to me. For the rest of that hospital stay, we sleep huddled together on that blue vinyl couch.

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Amy Graver currently works in the corporate world, and is a writer, a happy wife and mom of 4 kids. Her daughter Lauren was diagnosed with rhabdomyosarcoma at age 7. Amy’s writing chronicles the journey on which cancer has taken her family. Lauren’s cancer diagnosis imposed a new reality and many challenges that turned their world upside down. Unexpectedly, but so very welcome, have been the silver linings that have emerged over the course of Lauren’s treatment and that still occur today. Amy is an enthusiast of US presidential history, she aspires to be a professional seashell collector, and is absurdly competitive about things that don’t matter.

Theme: Talking to the Child Who is Dying

Everyone has inside jokes.  They are the stories with details known only to those who share a particular experience, and they inspire longtime friends or family members to laugh uproariously at an embarrassing nickname, or when someone mentions “that time at the lake”. More than just happy memories, those laughs are expressions of connection through shared history.

In our family, we learned to enjoy (or sometimes just tolerate) my teenaged son Robby’s glee from shock-value humor. Sometimes he reveled in something gross, other times he took pleasure poking fun at a sensitive spot. Sounds like typical teenager humor, right? But because Robby lived with a chronic illness, he also found unusual material in the idiosyncrasies of his medical condition.

Serious as the subject matter often was, we learned that appreciating his humor, even for uncomfortable topics, could be good for all of us.

Going There

It was no small feat to watch my son cope with a life-altering diagnosis and the difficult symptoms from the illness and treatment. My maternal nurturing instincts were powerful, but even louder was my son’s insistence on preserving his autonomy. So, I learned to develop a light touch with minimal “are you ok?” caregiving.

I reinforced that balance as his enthusiastic partner seeing humor in the good, bad, and ugly of whatever we encountered – for example sitting together on the bathroom floor as he dealt with nausea from his chemotherapy. Yes, I did all the traditional motherly things: I rubbed his back, put a cool cloth on his forehead, gave him a drink of water.

But what always made him smile was the stupid nickname we created – “Barfing Boy”. We imagined Barfing Boy as a deeply weird superhero, with a little sidekick dog named “Spew”, and the pair came from the planet “Zofran” (aka a common anti-nausea medicine). The ongoing story we invented over multiple recurrences made both of us giggle even in miserable circumstances.

Truthfully, there were only a few insiders who could find this absurd, revolting story funny. Understandable, after all, who wants to laugh at vomit!

Bringing Others There

Robby liked to disrupt people’s superficial perceptions about him, and if that also shined a light on their foibles, all the better… This was especially apparent when flare ups from his illness forced him to use a wheelchair, and he developed a love/hate relationship with the conversations it started.

One bozo saw Robby wheeling across his college campus, and asked “Dude, what’s wrong with you?” Robby answered matter-of-factly “I have Ebola.” The poor guy was speechless, and Robby relished the power of his sarcasm even as he was appalled by a stranger’s rudeness.

Around the same time, Robby attended a party with people he had recently met. He wheeled into their apartment, but then stood up out of the chair, and put it away in the hall closet. He chuckled at their shocked expressions, explaining that the chair was a support for his reduced stamina, not a walking disability, so they had not just witnessed a miracle.

And, Robby took particular pleasure in joking around with the medical team, especially when they joined in. His regular pheresis procedures (where he was hooked up to a machine that filtered his blood) took several carefully monitored hours, offering weekly opportunities for trading jibes with whoever was at the bedside.

As one physician discussed her treatment plan with us, she explained “Robby, I could pherese you forever.” Robby smiled slyly and replied, “I like you Dr. W., but I don’t know if I’m ready for that kind of commitment.” Her serious expression slid into a grin, she blushed furiously, and the room broke into hilarity.

During these treatments, Robby received light sedation to make him more comfortable. At the end of one session, we were concerned when he was slow to regain consciousness. The usual steps were not working so his doctor switched to a decidedly unconventional technique – Dr. D. started trash talking Robby’s favorite football team. The two of them regularly sparred over their rival teams, but this turned the friendly teasing into a medical protocol. We all breathed a sigh of relief as it worked, and we laughed as Robby woke to woozily defend his beloved Philadelphia Eagles against Dr. D.’s beleaguered New York Giants.

I always appreciated this kind of banter between Robby and the professionals on his team because it showed that they saw him as more than just a patient and understood him as a person.

What’s Underneath

As any comedian will tell you, humor and anger are closely related. Highlight something provocative, examine it at a new angle, and you can invoke irony or a smile. Mark Twain wrote “Humor is tragedy plus time. “ That’s why you might hear a comic ask, “Too soon?” if their audience reacts to an edgy joke with shocked silence.

It was never too soon for Robby to explore the funny dark side. Humor gave him a way to express his rage at the unfair hand he was dealt, and to feel strong in the face of a relentless adversary. In those moments Robby could vent frustrations and fight his limitations as he used his wit to take the edge off a painful reality. The deeper the pain, the darker the humor.

The downside was that Robby’s joking style could also prevent others from seeing his very real struggle. After all, how bad could things really be if he were so casually flippant? Most of the time that was just fine with Robby, but in his more vulnerable moments he still needed someone to see behind the kidding around.

Like inside jokes themselves, it only works if someone is on the inside with you.

Very few people saw the reality inside Robby’s experience, but he knew that we did. We shared laughs with him in places and times where few others dared to tread, AND we remained a safe place for his darker thoughts without needing the comic veneer. Robby trusted our unconditional love, knowing that his family could embrace his raw emotions just as easily as we laughed at his vomit humor.

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Caryn Anthony is a nonprofit consultant and executive coach from Silver Spring, MD, and is also chair of the Patient and Family Advisory Council for Children’s National Medical System.  She is the author of “Any Way the Wind Blows,”—a blog geared for families raising a child with a significant medical condition.  Her writing has also appeared in The Huffington Post, Grown and Flown, and Modern Loss.

Theme: Talking to the Child Who is Dying

In this Zoom interview with CPN, Michelle — mother of Alex (age 7) and Julianna, who had a severe form of Charcot-Marie-Tooth disease and died at age 5 — reads a transcript of her conversation with Julianna in which Julianna asks questions about going to heaven. Exquisite, exceptional, courageous. A blessing. And Blyth reacts.