Kim was a caregiver for her sister while she battled stage 4 Hodgkin Lymphoma for nearly five years, from diagnosis through an autologous transplant. She turned her experience into change and has since become an activist in finding a cure for cancer. Kim has worked in politics and assisted in the passing of numerous legislative pieces impacting patients with cancer and their families. She is an activist in the field of oncology, nursing and beyond. Additionally, she is a volunteer and champion for a cure with the Leukemia and Lymphoma Society's Light the Night Campaign. Kim has shared her experiences with cancer as a contributor with Cure and through public speaking engagements throughout the United States.

Kim Johnson

Kim Johnson was a caregiver for her sister while she battled stage 4 Hodgkin Lymphoma for nearly five years, from diagnosis through an autologous transplant. 

When my sister was initially diagnosed with stage 4 cancer, there was optimism and hope due to the notable cure rates for Hodgkins Lymphoma. But after her first treatment failed and her cancer refracted, palliative care became part of her ever-expanding care team. I engaged in what would be the first of many conversations surrounding my sister’s death.

These conversations often looked the same, with doctors noting that my sister was an anomaly and that, for reasons unknown, her cancer was more complex to treat than most. Call it happenstance or luck; my sister was diagnosed with cancer on the cusp of a paradigm shift within the field of oncology. Each time a treatment failed, a new therapeutic opportunity seemed to appear.

Her clinical care team and I fought incredibly hard for my sister to be considered for clinical trials and for the compassionate usage of novel agents that were not yet available for blood cancers. Every treatment resulted in reactions and complications, but she sustained and received an autologous bone marrow transplant and gained remission. Unfortunately, just shy of her five-year post-transplant cure date, testing showed a complete relapse, and she was re-diagnosed with stage 4 Hodgkins Lymphoma.

I’ve written about nearly every part of my journey as a caregiver and my sister’s battle with cancer, but I’ve never shared my sister’s name in my writing. This article, though, isn’t about treatments tried, complications endured, remedies used to aid her along the way, a terminal diagnosis, aspects of me being a caregiver or even my pursuit of nursing. This article is about my grief and the loss of my sister, Kathleen Ann Johnson, to cancer at the age of just 39.

Our relationship was complicated. That word, complicated, is one that I’ve often used to describe everything that happened throughout cancer and everything that's happening now amid her passing. Although not unexpected, her passing has been overwhelming as I’m consumed with memories, grief and shock that her death has occurred. To some, that last sentence may be a surprise.

For those who’ve lived or are living in the realm of terminal diagnoses, we know that premature death is inevitable. With my sister having lived with cancer for so long, having had engaged in numerous conversations regarding her death, it nearly came to feel unreal to me. That doesn't mean I wasn't acutely aware of her diagnosis or that I was ignorant of the fact that she had an aggressive cancer ravaging her. It means that you separate yourself from the future to protect yourself from the reality of the present, and then suddenly, it happens, and the future becomes the present.

When I stood beside my sister's hospice bed, I knew that this time was different than the innumerable close calls to death she'd had. I knew that despite her understandably being reluctant to accept a diagnosis throughout the years, her fear of dying, and her ability to surpass all expectations of survival, this time, she was ready. And this time, it was me who was reluctant to accept the reality I was facing.

It was me who stood flooded with fears. Swallowed by silence, just her and I alone, as had been the case so many times throughout cancer, knowing the moment I had been dreading for so long- was here. It is despite both my sister's and my hopes and wishes that after just under eleven years since her diagnosis, on July 1, 2025, she passed away peacefully in her sleep. My sister had an abhorrently brutal battle with cancer. It is my hope that whatever comes after this life, wherever she may be, she has found the serenity that I am now seeking amid tremendous sorrow.

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Articles

The narrative reflects on the emotional journey of a caregiver whose sister, Kathleen Ann Johnson, battled stage 4 Hodgkin's Lymphoma. Despite initial optimism and numerous treatments, including clinical trials and a bone marrow transplant, her cancer relapsed. The author shares the profound grief and complex emotions experienced following her sister's passing at age 39. The story highlights the challenges of living with terminal illness, the emotional toll on caregivers, and the struggle to reconcile with the inevitable loss, while seeking solace and serenity in the aftermath.

After nearly 11 years of living with Hodgkin lymphoma, my sister Kathleen passed away peacefully at 39, leaving me to navigate the sorrow of losing her.

Saying Goodbye to My Sister With Hodgkin Lymphoma

Kim Johnson was a caregiver for her sister while she battled stage 4 Hodgkin Lymphoma for nearly five years, from diagnosis through an autologous transplant. 

There are specific roles in life that we come to assume that become a part of who we are. They are no longer something we do but a part of our identity. For me, that was no truer than for the role of caregiver. I became a caregiver for my sister when she was diagnosed at 27, and I was 23. It was a title bestowed upon me and often referred to as my identifier by many. In the nearly eleven years that have passed since her diagnosis, I have come to carry several other titles related to cancer beyond that of caregiver: writer, author, case manager, patient care coordinator, nursing student, and advocate, to name a few.

About six months into my sister's cancer journey, I realized that I was meant to be a nurse. I was late to that realization, as many on her care team had come to that conclusion before I did. Even though I felt a strong call to nursing, I chose to postpone beginning my studies until after my sister achieved remission. I did not know then how arduous a process it would be for her to gain remission, but I served as her caregiver, and doing so, along with school, was not possible. I continued to delay beginning school, and I began my collegiate studies roughly a year after her remission.

I transitioned from a caregiver to a student, seeking to become the nurse who would provide care to others as her phenomenal nurses had selflessly given her. I continued sharing my story with CURE, was heavily engaged with the Rocky Mountain Chapter of the Leukemia and Lymphoma Society, and advocated often. Although I had worked in oncology in several ways and earned certificates and degrees, in 2021, the day before my graduation, my sister was re-diagnosed with cancer. Coupled with another deeply personal loss, I elected to leave the field of nursing. While I had a tremendous personal battle with this decision, I pivoted full-time to advocacy work via a political career.

All the while, I retained numerous titles I had held throughout cancer. On May 16th, 2025, I am proud to share that I will be graduating with my bachelor’s in political science and dropping one of the continuous titles I have carried: student. It is difficult to fathom, as this day once felt unattainable. As happy as I am to be completing school, there have been many emotions surrounding it. Namely, I recently realized that I am not graduating with a degree in Nursing. While I do not have any regrets about pivoting my career path, it is bittersweet. Prior to my sister's diagnosis, I was not sure what career meant for me. Although I have dabbled in other passions, I have always continued to work and stay engaged within the field of oncology. Moreover, although I will continue to write and share my story, my career path will now officially be focused outside of the field of oncology.

Cancer has influenced, impacted, and shaped me into the woman I am today. I am a more empathetic, knowledgeable, kind, compassionate, and overall better person for the path that not only cancer forced me to walk but for the parts of this journey that I have elected to walk. Moreover, although I will not be a practicing nurse, the lessons I have learned have and will continue to serve me as an advocate in my new career. Just as cancer and its presence in our lives is unpredictable, so is life and leaning into that rather than fighting it has brought me to where I am today. As I prepare to graduate, I have found peace in knowing that it is okay that the roles that I thought I would assume and the titles I anticipated carrying were not ultimately meant for me, and that is okay.

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The narrative reflects a personal journey shaped by caregiving for a sister with cancer, leading to a career in nursing and advocacy. Initially, the author embraced the role of caregiver, which evolved into a calling for nursing. Despite setbacks, including a career pivot from nursing to political advocacy, the experience enriched the author's empathy and knowledge. The journey underscores the unpredictable nature of life and the acceptance of evolving roles. The author finds peace in pursuing a political science degree, continuing to advocate for cancer-related causes.

I reflect on my journey from caregiver to advocate, embracing a future shaped by cancer but no longer defined by it.

Finding Peace Beyond Caregiving and Oncology

Kim Johnson was a caregiver for her sister while she battled stage 4 Hodgkin Lymphoma for nearly five years, from diagnosis through an autologous transplant. Catch up on all of

When my sister was diagnosed with cancer, we found ourselves surrounded by a sublime care team. Amidst so many changes came so many new faces. One of those faces was Eric Z., a night nurse who treated my sister during her initial hospitalization and someone who would become a constant on her care team up until her bone marrow transplant at a different hospital. There is not enough time or words to explain Eric as a nurse, let alone as a human being. Nevertheless, I will do my best in honor of Nurse Appreciation Week because he deserves the praise.

When I realized I wanted to be a nurse, I shared the news with Eric, and he was not surprised. Eric had spent time encouraging my wonder and inquisitiveness as I served as a caregiver for my sister. Moreover, while he always provided phenomenal care that was above and beyond, he also practiced the art of boundaries and professionalism. It was not until my sister’s time at her original treatment hospital ended that Eric shared that he was moving to NYC, and a friendship formed. He assured me that we could stay in touch now that he was not her nurse.

As we awaited the details of my sister’s bone marrow transplant, I endured a devastating personal loss. While at a marathon to support Eric, I got a call notifying me that my fiancé had unexpectedly died. It was Eric who immediately enveloped me in a hug and provided comfort, who made sure I made it home safely, and who continued to check on me in the immediate aftermath of that loss. Eric continued to espouse the advice he had shared since meeting me, that caring for oneself was not selfish but necessary and warranted as a caregiver. True to his words of staying in touch, Eric has always tried to reach out no matter the distance between us.

As Eric prepared to move, my sister was receiving her bone marrow transplant. He made weekly visits to see both of us, often bringing food and giving me a much-needed respite so that I could step away. Always cognizant of not only my sister’s needs but mine too. As I struggled with personal devastation in the face of grief and loss coupled with being a caregiver, Eric’s empathy and offerings of grace and wisdom never wavered. While much of the details of that time shall remain between him and me- Eric’s exudence of continual kindness is something I will never forget.

Once he did move, I made several trips east to visit him and have always been met with hospitality and friendship. He, too, has made several trips back and always makes time for us to get together. In between these trips, we talk, share stories, and offer encouragement and support to one another. Last year, when we thought my sister would pass, he hopped on a flight for the weekend to see her in what was anticipated to be her final days and to be with me. Moreover, in a few weeks, he will once again come to see her as she enters hospice and to celebrate my graduation with me.

Eric was one of the many phenomenal nurses who treated my sister, and I will forever feel indebted to him for all that he and they did. However, he has become so much more than a nurse who treated my sister. Eric is a kind soul, and I am so fortunate that the universe deemed it necessary for us to share time and space. He is someone I now consider family. Just as my sister was blessed to be cared for by Eric, so are all the patients that he sees.

Eric remains an incredibly devoted nurse, providing his sublime care abilities as he now practices at Memorial Sloan Kettering in NYC. I am beyond grateful that he was my sister’s nurse. I am even luckier to have had Eric as a mentor as I pursued nursing, and to me, he is an absolute embodiment of all that is good within the nursing field. I can think of no one I have had the privilege to watch as a bedside nurse and learn first-hand how to be a nurse who deserves a special spotlight as we spend this time celebrating nurses.

The narrative highlights the profound impact of a compassionate nurse, Eric Z., on a family navigating cancer treatment. Eric's exceptional care, professionalism, and empathy extended beyond his nursing duties, fostering a lasting friendship and mentorship. His support during personal tragedies and his dedication to both the patient and her family exemplify the profound influence healthcare professionals can have. Eric's transition to Memorial Sloan Kettering in NYC marks a continuation of his commitment to patient care, embodying the virtues of nursing and leaving a lasting impression on those he encounters.

Eric Z. cared for my sister and mentored me with compassion, wisdom and unwavering presence — shaping my path in nursing and life.

A Nurse Who Became Family After a Cancer Diagnosis

It was difficult to watch my sister struggle with so many side effects throughout her Hodgkin lymphoma treatments. Ultimately, she needed the medications that were being dosed because they were what was treating cancer. Still, I would be lying if I wondered if the side effects were worth it. When my sister was enduring cancer for the first time, she had many side effects outside the norm. Many of the drugs she received caused the rarest of side effects, and so often, the treatments stopped working, and we were left to seek hope through experimental therapies.

So, we tried to find alternative ways to help her work through these side effects. We landed on one way that was an unexpected remedy for her. A common treatment-related side effect that my sister dealt with was nausea.

At the peak of her treatment cycles, she took upwards of 30 medications a day. Regardless of how often I questioned the efficacy of the treatments, I knew that her care team was utilizing modern medicine as best it could to treat her. Therefore, we tried to be creative regarding remedies and sought alternative treatments to make her feel better.When I say alternative, I do not in any way mean to suggest that we shunned traditional medications. What I mean is that we tried to use anything that would make getting through cancer a little easier for my sister. 

Like so many things about cancer, it is incredibly overwhelming. Most of what we came to learn about what was and was not sufficient to help my sister came through trial and error. So much about cancer requires one to be creative, have a different perspective, and be open to the concept of something altogether different. During cancer, I had to practice an entirely new level of open-mindedness because there were so many times that the norm did not apply to my sister.

When a suggestion that her care team gave us did not work, I would often turn to Google to research what other cancer patients and their families had tried hoping that the remedies they had tried would work for my sister. Sometimes they did, and sometimes they did not, but sometimes was better than no times. Initially, I tried the most offered suggestions I could find.

We tried the usual suggestions of peppermint candies, ginger drops, breath tabs and chewing gum. Sadly, none of them worked for her, and there were many times that she would take prescriptions of several anti-emetic drugs (anti-nausea and vomiting medications), but none of them worked. Instead, we used vanilla wafers, specifically generic vanilla wafers. I have no idea why that variety worked for her, but it did. And so, we used to keep boxes of these cookies in the house so that when she was nauseous, we would already have what she needed to feel better. This was the first unorthodox remedy and would not be the last.

Regardless of all the complications that my sister endured, I am still a huge proponent of modern medicine. Like everything we tried, we always consulted with her care team to ensure that what we were doing and trying did not affect the treatments she was given. Sometimes I thought I was silly for asking them; they appreciated the open communication, though, because it allowed them to monitor her better and gave them new suggestions to offer other patients who may have been experiencing similar issues that my sister was. I am also a big advocate of alternative remedies because cancer has shown me that sometimes the best approach is the one you may never have considered.

This article reflects the views of Kim Johnson and not of CURE®. This is also not supposed to be intended as medical advice.

When my sister experienced nausea and vomiting during her Hodgkin lymphoma treatment, we tried alternatives that seemed to help.  

Kim Johnson

Saying Goodbye to My Sister With Hodgkin Lymphoma

Finding Peace Beyond Caregiving and Oncology

A Nurse Who Became Family After a Cancer Diagnosis

Finding Alternatives to Help With Nausea During Cancer

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