I Don’t Want My Sister to Go Through Cancer Treatment Alone, But Do I Risk Exposing Her to COVID-19?

May 26, 2022
Kim Johnson
Kim Johnson

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.

I can’t imagine not seeing my sister during her blood cancer treatment, but I also struggle to picture the effects of infecting her with COVID-19.

In January, my sister was once again hospitalized with a blood infection, and I decided to stop by for a visit. Unfortunately, just two days after seeing her, I was notified that I had come into contact with somebody who had recently tested positive for the Omicron variant of COVID-19. I received a test and informed my sister so that she could let her care team know that she, too, may be infected.

While I ended up testing positive, I am grateful to say that my sister did not. Unfortunately, it still caused minor setbacks with her ability to receive care once discharged and delayed clinical appointments for secondary complications of her cancer.

While I visited with her, I took all required precautions with proper hygiene, and I went above the hospital's recommendations by remaining masked while in her room for the visit. It is unknown if wearing a mask and the six feet of distance that we kept is what kept her from getting COVID-19. No matter, though, I am happy she did not get sick because her body is already fighting so much that I, nor her team, know how well she would do if she were to get COVID-19. Although fully vaccinated and boosted, we still lack much data on the efficacy of these vaccines with the new variant and variables caused in the body of a patient with cancer.

Having gone through this scare with my sister, I wondered how careful a family member or friend should be with a patient with cancer regarding this virus. I had always followed protocol with my sister when she was in isolation rooms for infections or when I was her caregiver. She was battling C. diff or the many other secondary illnesses she fought during her first cancer bout.

That said, this pandemic is a new change for us. I know what worked and what she needed without a pandemic: follow a neutropenic diet, do not eat out, avoid large crowds, wear a mask when she was actively in treatment and was neutropenic and did not have an immune system to protect herself. But COVID-19 is vastly different than anything we previously faced.

Being a novel virus, the guidelines continue to change, not just for those in the cancer community, but for everybody. I do not want my sister to go through cancer alone, and I am trying to navigate the clinic restrictions and visitations to see her, all while protecting her from this virus and giving her the companionship and company to ensure that she is mentally and physically OK as she battles cancer. I cannot imagine simply not seeing her until this pandemic comes to an end, given that we have no idea when or if it will end. I also cannot imagine giving her this virus by accidental exposure.

I have asked myself many times: What is best for her? Is it better for her to see nobody and try to keep her in this bubble of isolation to do all that we can to prevent her from getting COVID-19? Or is it worth the risk of exposure so that she is not physically alone through a challenging time and an already isolating experience? While I wish there were a clear-cut answer, I know that there are not so many things known about COVID-19 and cancer.

So, despite this last scare with accidental exposure, we have chosen to continue seeing one another and to take the steps suggested by her team in proper hygiene and no more than one person in the clinic with her and only a singular visitor per day when she is at the hospital. It is my sincerest hope that these steps protect her from COVID-19 and that I can continue to physically and emotionally be there for her as she continues to battle cancer.

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