Theme: Communicating about the Diagnosis

The mom of a little boy born very prematurely tells the story of a conversation with a doctor who told her not to expect her son would walk in a very insensitive way. It could have been said so differently. “I remember how she made me feel. .. Always leave a little room for hope. You need to give parents something to look forward to.” She offers other suggestions too, including such wise words for parents.

Theme: Communicating about the Diagnosis

A few months before my memoir, The Unlikely Village of Eden, hit the shelves I was struck by a sudden, jolting fear. My book is about when life does not go to plan, and about those that helped me along the way during the most desperate moments of my life. Within its pages, I detail how I grappled with loneliness and despair. One night, as I tossed and turned under my comforter, I questioned my decision to be so revealing. As a (then) 44-year-old who has worked as a psychotherapist since my 20’s, I had grown accustomed to keeping much of my life private. Was I divulging too much?

I wondered what it would be like to have my life story, including my wild, enduring grief about my daughter’s rare genetic deletion and the deep truth about my marriage, out there for anyone to see. Once you put something in print, you can’t take it back. Writing a memoir is vulnerable, and I know from my job (and also from being alive) that being vulnerable is not easy. Yet, I wanted to tell this story. It felt like I needed to tell this story. I was, like many, familiar with Brené Brown’s perspective that vulnerability is a superpower. And yet, also like many other people, I thought that this level of openness could be really great! Especially for someone else.

And there were the professional considerations, too. If my clients read my book, would they think less of me? I talked with my therapist; I always say that every good therapist needs a good therapist. He helped me consider the boundaries of my practice, including how my work as an author is a separate sphere. I also asked my friend and mentor who specializes in ethics to review the manuscript. We discussed my plan of how I would approach the book, which mostly meant I wouldn’t unless a client brought it up first.

Eventually, when The Unlikely Village of Eden finally came out, it brought relief. And even more surprisingly, it improved my relationships. Dramatically. It gave my existing circle—even most family members—a clearer picture of my day-to-day life and inner world. I know writing a book is not generally cited as a way to connect more to others, especially since it requires a lot of time alone in a room. It definitely depends on the content—if you’re releasing a cunning exposé, then it won’t help boost friendships—but telling my own story so openly, including the grittiest parts, led to more offers of assistance and tangible empathy. Old friends offered acts of kindness such as hosting my son for a sleepover, and I received more support on holidays, which were (and still are) generally the hardest days. One fellow therapist who I had a casual connection with for many years reached out with a straightforward bid to become closer. That’s what I craved most, to be known and to know others.

Counter to the judgement I had feared, I received more invitations and social connectivity in the months following the book’s release. For my 44^th birthday that year, as I hemmed and hawed about what to do for the occasion, my friend offered to throw a gathering at her home. I can’t say for sure if it was a coincidence, but no one has ever offered to throw me a party before. I accepted this rare, gracious gesture, and the hot August evening—a last minute wine and nosh party—was a delight. Before, during, and after the party, I felt so cared for, even in my grief and occasional lingering loneliness.

Here’s the thing: I felt accepted, despair and all. Readers, friends, and neighbors shared—through lingering conversations, emails, and even some DMs—that they had experienced it, too. Once it was all out in the open, it felt like each treacherous moment I had endured was for something greater than my own pain. I could name a common experience. I could help other people feel less alone. And as a result, paradoxically, I didn’t feel as drawn towards despair.*

Not every caregiver needs to (or should) write a book, but telling our stories and being radically open about these challenges is powerful. This includes everyday conversations about what we go through—the real parts, instead of always adding a positive spin to preserve the listener’s comfort. Most of our work is hidden away in private spaces and therefore unknown to the general public, or even our own confidants. Yet, people should know what caregivers go through—the ache of uncertainty and the glee of tiny wins, the meaning that emerges when giving wholeheartedly to a loved one—along with the ambivalence we often face when sacrificing our own rest, time, and passions. Sharing these experiences matters, in part, because it sparks compassion. And also, because greater recognition of our struggles could lead to desperately needed policy changes.

It was not easy to reveal my utter and gutting fallibility. Yet exposing those raw parts opened up new possibilities to be more understood, connected, and most of all, less isolated. Like the rest of us mere mortals, I was afraid of the ramifications of being vulnerable. Yet, it was well worth it. Words do a lot. Our stories do a lot. Sometimes they even set us free.

*If you are experiencing chronic worry or any other pervasive health condition, talk with your doctor or a qualified mental health professional. This article is for informational purposes only, does not constitute medical advice and is no substitute for professional medical diagnosis, advice or treatment. If you, or someone you know, is experiencing a mental health crisis, get help immediately through your local emergency room or call 988, the National Suicide and Crisis Lifeline.

Emma Nadler is a psychotherapist, author, and speaker. Her memoir, The Unlikely Village of Eden, is about learning to adapt when life doesn’t go to plan, redefining community, and creating your own imperfect path. She has also written for The Washington Post, Salon, Huffington Post, and Newsweek, among others. In her private practice, she helps people build deeper relationships—including friendships—and cultivate more of what they want, even with life’s inevitable challenges. Learn more at www.emmanadler.com

Theme: Communicating about the Diagnosis

As a medical professional who grew up navigating the healthcare system with a diagnoses of Cerebral Palsy, a patent foramen ovale (PFO), atrial septal defect (ASD), and ventricular septal defect (VSD), I have experienced complex medical conversations from both sides of the exam room. These conversations—moments when providers must deliver complicated or difficult news—shape how families understand, cope, and advocate for their child’s care. Reflecting on my experiences as a child, a nursing student, and now as a nurse practitioner with specialized training in emergency medicine, I’ve seen firsthand the critical gaps in how providers approach these conversations.

When I was diagnosed with Cerebral Palsy as a young child, my parents’ introduction to this lifelong condition came from a physician who casually stated, “Your child is fine with the exception of her Cerebral Palsy.” That statement, though perhaps intended to minimize fear, fell painfully short of addressing the complexity of the diagnosis or providing the compassionate support my family needed. Those words lingered not because they were helpful but because they felt dismissive, leaving my parents to process their emotions and seek clarity largely on their own.

That experience, and others like it, deeply influenced my decision to become a healthcare provider. I wanted to be the type of clinician who could guide families through moments of uncertainty with clarity, empathy, and respect. I pursued nursing and eventually became a nurse practitioner, completing a fellowship in emergency medicine where I encountered some of the most challenging conversations providers and families can face. It was in this setting that I saw the importance of not only what providers say but how they say it.

The Patient Perspective

As a child navigating life with a complex medical history, I quickly learned that the way information is presented matters as much as the content itself. Providers who treated my parents and me with respect, took the time to explain things clearly, and validated our concerns made us feel empowered. These were the moments that fostered trust and gave us the confidence to make informed decisions. On the other hand, rushed or dismissive interactions—like the one surrounding my Cerebral Palsy diagnosis—left my parents feeling confused, unsupported, and even reluctant to ask follow-up questions.

The best providers were those who didn’t just talk at my parents but instead invited them into the conversation. They provided space for their questions, acknowledged the emotional weight of the moment, and offered resources to help us navigate the journey ahead. It wasn’t just about delivering information—it was about making us feel seen, heard, and respected.

The Provider Perspective

As a nurse practitioner, I’ve had the privilege of standing on the other side of these conversations. Through my fellowship in emergency medicine, I witnessed and participated in some of the most emotionally charged moments families experience. Whether it was discussing the results of a traumatic injury, addressing a life-changing diagnosis, or guiding families through end-of-life decisions, I quickly realized how critical it is to strike a balance between delivering facts and offering compassion.

I’ve seen providers who handled these conversations beautifully, breaking down complex medical jargon into understandable terms while acknowledging the family’s emotions and creating space for their questions. I’ve also witnessed, and admittedly experienced myself, moments where the delivery fell short—where time pressures, emotional fatigue, or lack of training made the conversation feel impersonal or rushed.

Emergency medicine is unique in that the stakes are often high, and decisions need to be made quickly. But even in these high-pressure environments, there are ways to approach families with empathy and clarity. I’ve learned that it’s not enough to share information; providers must also validate the family’s experience and offer support, even when the news is difficult.

Where the Gaps Lie

Despite the critical importance of these conversations, healthcare providers often receive little formal training in how to navigate them effectively. Medical education prioritizes diagnosis and treatment, but communication—especially complex, emotionally charged communication—is rarely given the attention it deserves. As a result, providers often rely on instinct or personal experience, which can vary widely in quality.

Parents, too, are often left to bridge this gap themselves. They’re expected to advocate for their child, ask the right questions, and make informed decisions, all while processing what can be overwhelming or devastating news. The result is a system where families and providers sometimes feel like they’re working against each other, rather than together, in the child’s best interest.

Why Parents Are the Key

Through all of this, one constant has stood out: parents are the most important advocates for their children. As a provider, I’ve seen time and again how a parent’s intuition, persistence, and willingness to ask tough questions can change the course of a child’s care. Parents know their child better than anyone else, and their insights are invaluable in helping providers understand the full picture.

When faced with difficult news or decisions, it’s essential to feel empowered to ask for clarification, seek second opinions, or request more time to process the information. A good provider will welcome questions and work with you to find the best path forward. If something doesn’t feel right, trust your instincts and speak up. Your role as an advocate is not only critical but also respected by the vast majority of healthcare providers.

Improving the System

While parents play a vital role, the responsibility to improve these conversations doesn’t fall solely on their shoulders. The healthcare system needs to invest in better resources and training for providers to navigate complex conversations effectively. This includes workshops on compassionate communication, access to mental health and social work support for families, and protocols that allow for adequate time to discuss challenging topics, even in busy settings.

Providers must also recognize that empathy and listening are as important as medical expertise. Taking the time to sit down, make eye contact, and ensure that families feel heard can make all the difference. It’s not about having all the answers but about being a partner in the family’s journey.

Moving Forward Together

As someone who has lived both sides of the patient-provider relationship, I know how daunting complex medical conversations can be. I also know how transformative they can be when handled with care and respect. My hope is that by sharing my story, I can inspire both parents and providers to approach these moments with greater empathy, patience, and collaboration.

• To parents: You are your child’s greatest advocate. Never hesitate to ask questions, seek clarity, or push for the care your child deserves. Trust your instincts and remember that you are an essential part of the care team.
• To providers: Remember that every word you say in these moments matters. Families will remember how you made them feel long after they’ve forgotten the details of the conversation. Approach these discussions with humility, empathy, and a commitment to partnership.

Together, we can bridge the gaps in complex medical conversations and ensure that every family feels supported, respected, and empowered. These moments are not just opportunities to deliver care—they’re opportunities to build trust and make a lasting difference.

Emma Murray is a dedicated nurse practitioner, born and raised in Rhode Island.  Her diagnosis of cerebral palsy has shaped her passion for advocating for children and families facing complex medical needs. She strives to make a difference both in her work and community through compassionate care and meaningful advocacy. Outside of work, she finds joy in volunteering and giving back to causes close to her heart.

Theme: Communicating about the Diagnosis

I’ve always believed in the power of words. It’s amazing to think that a series of symbols can inspire, educate, entertain, convince, unite, divide, and heal us. They can make us fall in love – and out of love, too. The right words make us believe in a vision or an idea or a politician. The wrong ones make us turn away. 

I spend a lot of time engaged with words, whether reading, writing, or even playing three word-games every morning before I get out of bed. 

One of my closest work friends  has never let me live down the time I held up a three-day meeting that everyone else was ready to end because I wasn’t convinced we had the brand statement we were working on exactly right. “Words matter,” I declared. There were more than a couple of eye rolls in the room, but you can bet when we emerged 90 minutes later we’d crafted a perfect document. 

So when my daughter, Dalia, was diagnosed with MERRF Syndrome, I parsed through every word the doctors said. I pored over every entry I could find on Google and compared notes with my husband and father, who were doing the same thing.

But for the first time in my life, the words made everything feel blurrier. They rendered me more confused, not less. 

The doctor said Dalia had a mitochondrial disease. I didn’t know what mitochondria were. He said the disease was degenerative. I could guess what that meant, but I had no understanding of the likely speed or degree of the degeneration. The more he said, the less I heard. “Every organ relies on mitochondria to function properly,” he explained. “If your mitochondria aren’t working like they’re supposed to, neither can your body.” 

What in the world was he talking about? It was simply too much to take in, so I tuned him out, focusing instead on the mental images of Dalia playing with her brothers, snuggling in bed while I read to her, and dancing to Katy Perry. The images diffused the harshness of his decree. 

When it came time to share the diagnosis with family and friends, I couldn’t come up with the words. Instead, I shared a definition of MERRF from the National Institutes of Health. Let somebody else’s words do the heavy lifting, I figured.

But I chose to ignore the very definition I shared with my inner circle. I viewed the list of symptoms as a menu, rather than a prescription. I chose to believe that while she had muscle twitching, hearing loss, and short stature, she’d be spared the blindness and dementia. Those words made the blood in my arms burn and my fingers tingle. They made me sweat and feel queasy. I picked the words I could stomach, as it were. 

Once my people knew about the diagnosis, the burden of finding the right words shifted to them.  The problem was that nobody knew what to say.

And who could blame them? I didn’t know what I wanted to hear.

I didn’t like it when they told me about their daughter’s sprained wrist or the stress they were feeling getting ready for a vacation or the birthday party they were planning for their son. Those things suddenly felt foreign, like fading memories of an old movie I used to love. But I didn’t like it when they censored what they told me either. If my friends couldn’t share authentically with me, how would the friendships survive?

There was also a whole new category of words that made me cringe inside. 

“I can’t imagine.” 

“You’re a superwoman.”

“God only gives us what we can handle.”

Of course I knew that people were trying their best, acknowledging that what we were dealing with was really, really hard, beyond words even. But the words they chose stung nonetheless.

I’m sure I’ve been the one saying the cringey things more times than I can count. I’ve never been particularly comfortable sitting in silence and have used words to try to fix things for others, even when those things were beyond fixing. 

I’ve learned though, that sometimes words don’t really matter. What matters more is simply showing up. When we’re grieving or suffering or going through hardship we just need to know we’re not alone. Maybe that does look like sitting in silence. Maybe it looks like sharing a meal or taking a walk or just listening to what our friend who’s in pain wants to share.

And sometimes, it can even look like just acknowledging somebody. Recently I was in line at the grocery store when a teenager in the aisle next to me began to shout, “Hello! Hello! Hello!” Shoppers and checkout clerks and baggers all turned to see where the noise was coming from and quickly averted their eyes once they figured it out. 

I looked at the girl and said, “Hello.” 

The girl’s mother turned to me with tears in her eyes and said, “Thank you.” 

I looked right back at her, my own eyes tearing up, and smiled. A simple “hello” meant so much more. “I see you. I see your daughter. I honor you both.” I knew that’s what she heard because I’d been that mother more times than I can count. 

The words don’t have to be perfect. They just need to come from the heart.

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Jessica Fein writes about the mingling of joy and sorrow, mothering a child with a rare disease, and staying rooted when life tries to blow you down.  Listen to her podcast, “I Don’t Know How You Do It,”  .

Her memoir, Breath Taking: Rare Girl in a World of Love and Loss, is coming in May, and is available for preorder now at Amazon.com and Bookshop.org.  Visit her website or connect with her on IG for real talk about love and loss @feinjessica

Theme: Communicating about the Diagnosis

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: Communicating about the Diagnosis

Jackson’s mom describes the journey to his diagnosis with Krabbe disease (an LSD) at 4 months old, including the moment when the medical team delivered the diagnosis. She is glad so many clinicians were in the room because they got to ‘see him in all his perfectness’ and establish baseline.

Theme: Communicating about the Diagnosis

“As a parent, I definitely wanted some action items. I was not okay with go home, and we will follow up with you later. There was zero sense of urgency. As Jackson’s mom that was not okay.” Jackson’s mom describes her quest to get as much info as possible, including about experimental treatments, and her displeasure that insurance and her child’s pediatrician were gatekeepers to some of this. There was some tension with the pediatrician. “I asked him if he thought that I was being unrealistic. I said you understand I know that there is not a cure. You understand that I am not putting him through anything that is unnecessary or painful. But knowing all the options helps me contribute to his quality of life.”

Theme: Communicating about the Diagnosis

When my husband and I started fertility treatments decades ago, the only person I told was my sister. This was pre-social media and pre-living out loud. It wasn’t that I was embarrassed, it’s that I thought what we were going through was intensely personal and not anybody else’s business. 

One day at work, three women decided to collectively share the fact that they were all pregnant. They danced from cubicle to cubicle waving their ultrasound pics. My colleagues cheered over the white blobs and murky waves. I ran to the bathroom and hid until they passed my desk. Nobody at work knew what I was going through, and I’m sure the women would have been mortified if they had any idea how their joy twisted a knife in my sorrow. 

A few months later, I was going on a business trip where I was required to share a room. Along with my “casual business attire” and laptop, I brought three-days worth of medications and needles I’d use to inject the fertility meds. I imagined what my colleague/roommate would say if she found my supplies and figured I should tell her my secret before she came to the conclusion that I was shooting up something other than concentrated hormones.

It wasn’t her response that surprised me, it was how her response made me feel. She was appropriately sympathetic and supportive. She told me her sister had gone through fertility treatments and that she’d even helped her with the intramuscular shots a couple of times. She let me squeeze her finger while I counted to three before inserting the needle in my thigh and became my confidante through the subsequent years of treatment. 

And suddenly I felt less alone. I’d thought if I told people what I was going through I’d feel even more different. Instead, I felt seen and held. 

Fast forward a decade or so, and there I was, yet again, in a situation that felt utterly isolating. When my daughter Dalia was 9, we spent three months in the PICU after a cold became pneumonia, leading to extended intubation and, ultimately, a tracheostomy. When we left the hospital, it felt like we were bringing home a newborn. Dalia was so fragile. There was equipment we didn’t understand and dozens of protocols we needed to master. 

The difference, of course, is with a newborn everyone is celebrating. There are friends and family to show you the ropes and spell you so you can take a nap or have a night out. With our daughter, nobody could relate in any way to what we were going through. Everything we were experiencing felt foreign to the people in our village. It was as though we had been plopped in a new country where nobody spoke the language we were desperate to learn.

By now, of course, social media was ubiquitous. It was possible to find people who’d been thrust into medical parenting, ambiguous grief, and pervasive uncertainty just like we had.  

I’ll admit that at first I lurked. I read other people’s vulnerable accounts of what they were experiencing. I realized there were in fact people who spoke our new language, they just weren’t people I knew personally. 

Slowly, I began to share. I was careful at first because talking about my fear or anxiety felt like a betrayal of my daughter. How could I be afraid or anxious when she was handling what was happening to her body so gracefully? 

But the more I opened up to other parents who could relate, I realized that my feelings were valid. Together, we could talk about our big fears, and our small ones too. We could say we spilled a syringe-full of meds all over the bed sheet and the other person would know what we were talking about. We could share that we felt a level of exhaustion that made our month-long bout of mononucleosis seem like a visit to Canyon Ranch, and we’d get it. 

And something unexpected happened. Sharing that I felt weak or unequipped for the task at hand and being able to have supportive conversations about that made me stronger. I began to speak more authentically not only with people who “got it” on a personal level, but with others in my world, too. I didn’t broadcast my fears widely, but I communicated more openly with the people I trusted. I loosened my armor. In turn, people had a deeper understanding of my reality and a greater appreciation of what life looked like for my family.

So many medical parents and grievers I talk to tell me how much they hate it when people say, “you’re so strong.” I hate it, too. But if we don’t share the mess and the beauty of our lives, how can we expect people to appreciate that what looks like strength is an amalgamation of fear, courage, fierce determination, frustration, sadness, boundless love, and so much more?

Over time, I’ve not only become comfortable with sharing my story, I’ve become committed to it. I now see that inviting people in isn’t only a way to connect authentically, it’s also a way to raise awareness about rare disease in general and my daughter’s disease, MERRF Syndrome, in particular. 

But more than that, sharing my story is, by definition, a way to share Dalia’s story. It gives me license to talk about her, honor her, and extend her legacy – all three of which bring me joy and are my mission now.

Stories open our eyes and open our hearts. When we share our real story, not the shiny polished version, other people learn about us, and equally important, we learn about ourselves. 

James Joyce taught us that, “in the particular is contained the universal.” Nobody’s story looks exactly like our own, but the more we can share the truth and the glorious and goriest details, the more people can connect and relate. It took me a while, but I know that now.  

And I don’t hide in the bathroom anymore.

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Jessica Fein writes about the mingling of joy and sorrow, mothering a child with a rare disease, and staying rooted when life tries to blow you down.  Listen to her podcast, “I Don’t Know How You Do It,” wherever you get your podcasts. Her memoir, Breath Taking: Rare Girl in a World of Love and Loss, is coming in 2024 from Behrman House Press. Visit her website or connect with her on IG for real talk about love and loss @feinjessica

Theme: Communicating about the Diagnosis

There were many tears during the first year of my daughter’s cancer treatment. Her tears, our tears, and the collective tears from her siblings, grandparents, aunts, uncles, cousins, and friends; tears as the shock of having a cancer diagnosis rattled through us, tears at the looming treatment plans, and tears of missing a life without cancer. I remember one night during a long hospital stay, while my daughter Lauren was sound asleep. I was flipping through channels and got sucked into a Hallmark movie. The heroine had leukemia, but survived and thrived happily ever with her Hallmark boyfriend. I remember using up all of the tissues and searching for another box. My daughter didn’t have a TV friendly version of leukemia and even though we were very early in her diagnosis, I already knew cancer to be much meaner and sadder. 

After a full and brutal year of chemo, we were sent home in a free fall, and told to come back for a follow up scan in a few months. The day we returned for the scan something felt off in the world. Our nurses, who we had gotten to know so well the past year, were friendly but aloof. In my mind, I had expected our reunion to be happier. Lauren’s oncologist found a small room to talk to my husband Dan and me. Lauren stayed back to play with the child life therapist. As Lauren’s doctor explained that her cancer had returned, she began to cry. Dan and I were crying too. For a few moments, we just cried together, sitting with the news. I can still feel the smallness of that room, medical and office equipment crammed next to a small table and chairs. I can still hear the quiet as we cried alongside each other. 

My opinion of our oncologist changed that day. I had always respected her approach and her ability to explain Lauren’s treatment in an understandable way. I appreciated that she took extra time with me to show me the scans and teach me about the indicators she looked for. I felt heard and seen as a parent each time we saw her. I liked how she laid out upcoming treatment plans. She was responsive and I knew I never had to wait long for a call back for a middle of the night question. She was collaborative, and creative. She helped us adjust chemo schedules for school field trips. She was smart, thorough, kind, and caring. 

There in that little conference room, crammed together as she told us our daughter’s cancer had returned, she also became beautifully human. We saw a vulnerable and loving person, as devastated as we were about our fate. 

That summer day will be seared in my mind forever. The apprehension walking into the office, the way everyone was avoiding us until we knew what they knew. The look on Lauren’s face when we explained her cancer was back. The quiet ride home as she stared out the window. But what is also seared is the memory of a doctor who loved my child and wasn’t afraid to show me through her tears.

Theme: Communicating about the Diagnosis

Theme: Communicating about the Diagnosis

Palliative care doctor Erin Flanagan shares how she learned from and worked with 7-year old Lauren during her treatment for cancer. Erin learned Lauren’s trigger words and worries and how to speak to them and protect her from surprises. “Lauren raised the bar for her age group. I came to treat her like an adolescent as she was always thinking 3 steps ahead. That made me raise my game.”

Theme: Communicating about the Diagnosis