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. Catch up on all of Kim's blogs here!

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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