As I sat in my daughter Kirsten’s hospital room one afternoon in August of 2015, I looked across at her to see the sun shining on her face through the window. Headphones on, she seemed so relaxed, as if transported to a faraway and hopeful place. It gave me comfort to see her so at peace in that moment. When she lifted the headphones, I asked her what she was listening to. “My favorite song from my relaxation playlist.” She restarted the song so I could have a listen, and when it ended, she preemptively said, “You probably think it’s weird it’s my favorite song, but I love the lyrics.” The song was “Like I’m Gonna Lose You” by Meghan Trainor, a beautiful and poignant song that speaks to the importance of loving the special people in our lives because we are not guaranteed tomorrow. That song was her anthem. Feeling loved, connected, and remembered was what she longed for most because she herself had become unsure of tomorrow.
Kirsten was an intelligent, hilarious, spirited young woman that cherished her independence, lived to make people laugh, and deeply valued being around her friends – laughter and people were her sources of positive energy. When she was diagnosed with Acute Myeloid Leukemia at the age of 19, her carefree life was upended. Confined to the hospital for treatment, she was suddenly dependent on everything and everyone coming to her. And privacy and independence were shattered in her small hospital room with frequent medical team visits and her parents by her side 24/7.
I was not prepared for the sights, sounds, and emotions I would experience in the hospital, especially during the first month. I immediately felt the weight of Kirsten’s diagnosis and could barely keep up with all the medical terminology. And because of the urgency of Kirsten’s diagnosis, her life depended on making swift decisions with blind faith. I found the nights were the most unsettling. Alone with only my thoughts, the eerie glow of the IV machine, and its sleep-depriving beeping. Kirsten often woke up frightened by drug-induced nightmares. I welcomed the opportunity to get off the tiny uncomfortable couch to comfort her and let her know she was not alone.
One of my most cherished memories was when she would take my hand and place it on her belly, making soothing little circles. It warmed my heart to know that a simple belly rub would bring calmness and help her back to sleep. I was grateful for every opportunity to bring her peace, even if it meant interrupted sleep. We both eagerly welcomed daylight and the promise of a new day of visits from friends and family and our favorite hospital staff. Kirsten especially loved to take her sense of humor to new heights as she kept the staff in stitches, talked about every subject imaginable, and asked questions that kept them on their toes. Even feeling her worst, she could make them smile.
After a month in the hospital, the doctors thought that a few days away could give her the emotional boost she needed. Kirsten was elated to be out of the hospital, grateful for a chance to experience the things we take for granted every day: going for a drive, seeing friends, eating fresh food, and sleeping in a real bed in a quiet room. The added responsibility of staying hydrated, administering her own IVs, taking her pills, and monitoring her vitals for signs of a fever was totally worth the risk to her. All was going well until she developed a fever on the second day. Rather than wait it out, I had her call the doctor, worried it could be life-threatening. Within an hour, she and her dad were at the emergency room (the only hospital entry point after hours). They spent the night there, sleepless from the sights and sounds of medical chaos—not a good place to be when you are immunocompromised.
To make matters worse, by the time she arrived, her fever had subsided. Unfortunately, it was too late, she was readmitted. Regrettably, I let my fear get in the way of trusting her as an adult and letting her take control of the situation on her terms. My intervention cost her the freedom she so desperately needed, and she would not get to leave the confines of the hospital for another four months.
Her first time outside the hospital had another unintended consequence: the misunderstanding by friends that leaving the hospital meant she was “cured” and no longer needed support. This misperception and the start of a new school year marked the beginning of the steady decline of visitors. Life was returning to normal outside the four walls of the hospital, and she felt like she was no longer part of it. As days turned into weeks, the isolation took a toll on her mental and emotional health. The long quiet days and limited distractions as an adult in a children’s hospital meant she had plenty of time to watch life pass her by on social media. Kirsten had a small group of friends who stayed connected despite their busy schedules, but I know it was hard for them to balance school, work, and being a supportive friend. With outside visits declining, Kirsten searched for other young adults in the hospital, and the staff quickly realized how important it was to facilitate these connections. With each new friend she found, I learned that Kirsten was not the only young adult feeling isolated and alone. These visits with others going through similar experiences helped her stay sane and cope.
I quickly learned how important it was to resist stepping in as the parent, following her lead and giving her space, letting her be the adult, and trusting she would ask if she needed help. Whenever outside friends came to see her, we left to give her the privacy to visit and be herself. We were always available and accessible by phone if there was an emergency but otherwise would wait for Kirsten’s all-clear text.
Kirsten was eventually transferred to San Diego to be near home and receive her last round of chemo. As Kirsten’s recovery times dragged on, she was desperate to get out of the hospital and would beg the doctors to release her. Recognizing that her emotional state was negatively impacting her recovery time, they relented and gave Kirsten the chance to go home. She was as happy as I had ever seen her. It gave us a chance to step away from our patient and caregiver roles and be together again as a family. Being at home for the holidays completely re-energized not just Kirsten, but all of us before her last round of chemo. My favorite moment was when we celebrated New Year’s Eve together. For the first time in months, we went out on the town, played games, and Kirsten was back to making us laugh until we cried. At midnight we all stepped out on the hotel balcony, and Kirsten belted out the loudest, most joyful scream I had ever heard. That scream signaled that hope had returned, and she was ready to finish treatment. Little did we realize what 2016 was about to bring…
Kirsten’s story ended differently than any of us expected. Three weeks after finishing treatment and ringing the bell, she was readmitted to the hospital for unexplained pain. Her body had been weakened by the drugs and was unable to fight. As I laid with her in the ICU on Valentine’s night, I held her hand, praying for a miracle. I started her relaxation playlist, hoping she would hear her song and return to that faraway and hopeful place. Her friends raced to be by her side, unable to make it before she was gone. During Kirsten’s celebration of life ceremony at the beach, we played her song for her one last time. Her story and that song are reminders to be present, connect, and love like there is no tomorrow.
So I’m gonna love you
Like I’m gonna lose you
I’m gonna hold you
Like I’m saying goodbye
Wherever we’re standing
I won’t take you for granted
Cause we’ll never know when
When we’ll run out of time.
Kirsten’s experience prompted us to reflect on how we could have been better supporters, more mindful of her situation, and given her a better quality of life over those seven months. Rather than hope things would be different for other young adults, we decided to take Kirsten’s vision for change and make it a reality.
In 2017 Kirsten’s three best friends and supporters joined me in establishing the b-present Foundation, a nonprofit focused on improving the experience of young adults with cancer by amplifying the importance of presence and providing the tools and information that empower supporters to b-present for their friends. Because no young adult with cancer should have to face it alone.
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://elephantsandtea.cdn-pi.com/contact/submissions/.