When Evelyn’s cancer journey began, she was 15 years old. For a few months, Evelyn had complained of muscle soreness in her right foot. What we thought was muscle strain never went away. I had made an appointment for her to see an orthopedic doctor, but we were rudely interrupted by cancer. On October 5, 2023, Evelyn was taken to the emergency room out of concern for massive swelling in her right leg. After x-ray imaging, Evelyn was sent via ambulance to Children’s Medical Center at Summerlin Hospital. After many hours in the emergency room, Evelyn found herself in the care of the Oncology team from Cure 4 the Kids. Within that ten day stay, Evelyn was given the diagnosis of Alveolar Rhabdomyosarcoma, Stage 4. She began chemotherapy, a regimen that would last 8 months, immediately. In January 2024, Evelyn endured Proton Therapy in San Diego, CA. for six weeks. We split up the family to accommodate her time there, with a few family visits along the way. By April 2024, Evelyn was said to be in remission. August 2024, Evelyn was in San Diego for more Proton Therapy. We were told it was a gentle sweep of radiation to her lungs and spine to target minuscule cells of cancer that may have remained. Over this time, Evelyn developed bleeding, potentially from her kidney being affected by the chemotherapy. She had visits with a kidney specialist and a Urologist. On September 13, 2024, Evelyn had a consultation with the Urologist for potential surgery. While the morning progressed, I began to be more concerned by what seemed to be a paralysis of her left side. We phoned our team at Cure for the Kids, and began a trip to the ER. Evelyn was rediagnosed with Stage 4 Alveolar Rhabdomyosarcoma, and given 3-6 months to live. Evelyn was rushed to Children’s Hospital Los Angeles for radiation of the tumors in her brain. They were inoperable. Heavy chemotherapy began again. While we searched for ways to help Evelyn and prolong her life in the best way possible, immunotherapies were introduced. We began consulting with an Oncologist from the east coast who worked in tandem with our team at home. Evelyn regained movement and was able to attend school for a short time, the only thing that really brought her joy. During that time, Evelyn developed breathing issues. Tumors in her lungs and an infection had made it more difficult for her to breath without additional oxygen. Evelyn was in and out of the hospital from the end of January 2025 until she died. During her last few days alive, a new chemotherapy was introduced, hoping to get ahead of her tumors and find a new way to help her. Unfortunately, she had to be intubated, she wasn’t able to get the oxygen she needed on her own. During that time, a tumor essentially ruptured in her lung and killed her.
I was not prepared to care for Evelyn during a cancer diagnosis, but learned along the journey. When she was initially moved from an emergency room at one hospital to Summerlin Hospital, I knew in my heart that she had cancer. I appreciated how quickly and seriously the medical staff operated, but there was nothing that could ease how terrified I was. I began to ask questions, take notes, study the information given. I climbed into Evelyn’s hospital bed any chance I had. I received emotional and monetary support from Candlelighters, friends, etc. I tried to keep my daughters engaged in the process. I sought different ways to keep Evelyn’s spirits up. Every moment of our days was spent trying to hold it all together.
When Evelyn began treatment, we were terrified. I wasn’t sure about the immediate effects of chemotherapy, and how she would tolerate it. At first, it was anticlimactic. After a few months, Evelyn began to feel really terrible after chemo. Nausea and fatigue, weight loss. Countless trips to the ER due to being neutropenic. Many, many hospital stays for fluids, transfusions, etc. When Proton Therapy was introduced, her fatigue increased. She developed burns from where the radiation was targeted, making her skin raw and sore. Towards the end of the eight months of chemotherapy, Evelyn was incredibly taxed. She understood what she had to do, and while she didn’t ever fight against it towards our wonderful medical team, she was silently protesting. Eating became difficult, from sores in her mouth or her lack of interest in hospital food. I tried to make or bring her favorite foods with us, in hopes she would eat. Getting her to drink water was the hardest part for me. I began stocking the house with an assortment of beverages, hoping to peak her interest. It was a constant battle. At one point in her treatment, while in California, I had to administer a shot Evelyn normally would receive in clinic after chemo. It was hard for me, yes. I didn’t want to have to put Evelyn through any pain, if even just a needle poke. But, it seemed even more difficult for Evelyn that I was doing it. It’s like I changed from loving parent to evil nurse. We cried together after it. When Evelyn’s cancer recurred, she had paralysis on her left side. We had to use a wheelchair and walker, I carried her up the stairs to her room and the shower. We got a hospital bed for her to stay in, which was parked in our living room. I slept on the couch by her side. After the radiation of her brain tumors and a new chemotherapy regime, the size reduced and she regained more control. The new chemo was so harsh we searched for something else. Immunotherapy and a low dose chemo was used. She began to feel a bit better, all she wanted was to be back at school. During her short time back, Evelyn began to decline. She was dependent on oxygen. The tumors her lungs seemed to be the deciding factor for the loss of Evelyn’s life. Her journey began October 2023 and ended March 24, 2025.
I was approached by Dani from Candlelighters during the first days of Evelyn being diagnosed, October 2023. We were in her hospital room, waiting on various tests during the fact finding stage, and there she was! To be totally honest, I was in super protective mode, and was incredibly skeptical of the help Candlelighters was said to provide. I asked for some time to learn about the organization, and led Dani to the door. I am ashamed to admit how incredibly wrong I was! Once I learned how Candlelighters supports families navigating childhood cancer, I made the call. I was unsure how I would maintain my job, care for my kids, get Evelyn the help she needed for care out of state, etc. I was met with open arms and knowledge, and with Candlelighters help, I was able to engage more with my family, found counseling services for Evelyn and myself. Teen Scene and Camp Firefly were highlights for Evelyn and her sister, Nora. Having Jacki and Dani say hello to Evelyn when she was in the hospital was always a welcome bright spot. My favorite thing about Candlelighters would have to be how inclusive the organization is. Our entire family has been “held in their arms” during Evelyn’s journey and beyond. In particular, Jacki came with us to Earth Funeral to learn more about the choice Evelyn made to be composted and delivered to the earth to “become a tree”. It felt so special that Evelyn’s wishes in death were taken so seriously and seen as a way to help families learn about another option to honor their kiddos.
Evelyn and I would spend her time in the hospital in various ways. Scrabble was a big part of our lives. We watched all of Evelyn’s favorite shows and listened to music. Evelyn made quite a few lego sets. There was a painting class in Summerlin Hospital that Evelyn loved, maybe the best artwork she ever produced! When Evelyn’s sisters would visit, they would all pile in her bed together and talk, argue and love on each other. We would decorate the room sometimes. I brought a dart board at one point. Evelyn developed beautiful relationships with her nursing staff. No matter how awful she felt, she would welcome everyone with a smile and conversation. I crocheted a plethora of beanies for Ev’s bald head, overalls for her baby sister’s favorite stuffed animal, BunBun, granny squares galore. We feigned reading, and mostly held our books and talked about how we were feeling, or the state of affairs world wide. Evelyn always spoke of getting back to school, becoming President of the Women’s Student Union, going to a dance, just getting to be able to be a teenager again.
Unfortunately, it seemed like Evelyn’s care was never complete. Even when Evelyn was told she was in remission, she had chemotherapy to complete. At the end of the first chemo treatments, she had Proton Therapy. The effects of all of it caused visits with a kidney doctor and urologist. Cancer recurred and there was more radiation and chemo/immunotherapy. Evelyn rang a few bells, but never because she was truly cancer free. Just an acknowledgement of a completion for now.
The greatest thing I learned during Evelyn’s journey was to accept help. I never had to ask, I only needed to learn to accept. And, the help came from every aspect of our world. I think Candlelighters was able to help me see that. I am so grateful for that lesson. - Mom Katie