In Memory of Rachel Rigali, 1994 – 2023

It is with great sadness that I share we lost one of our own this past weekend. Rachel Rigali passed away on May 28, losing her battle with Ewing Sarcoma, a rare type of bone cancer that usually strikes pre-teens and teenagers. She was 28 years old.

Rachel was diagnosed with the disease in the Fall of 2021 after experiencing severe lower back pain. In many Ewing cases, surgery is performed to remove the tumor or tumors. In Rachel’s case, her tumor, the size of a baseball, was wrapped around the base of her spine, making it impossible to remove surgically so she began an aggressive treatment of inpatient and outpatient chemotherapy to shrink the tumor.

In May of 2022, I had dinner with Rachel’s mom, Kelley, a good friend of mine, and several others close to both Kelley and Rachel.  At the time, Rachel was about 7 months into her treatment plan and was responding well, so much so that she was looking to take on a part-time job working from home. I was looking to bring on a marketing coordinator and so I set up a call.

Rachel and I bonded immediately.  She was funny, smart, incredibly creative and artistic, beautiful, and above all courageous.  She came on board, working for me 15-20 hours a week. We met daily at 10 am on Zoom to look at the day’s tasks and plan out upcoming projects. A typical Zoom call had her sitting in her living room with her pet bird on her shoulder; I had our cat, Ali Baba, sitting on my desk.  My husband Lee would stop in most mornings to say hello and ask how she was doing. Rachel’s standard response was always “Great!”.

Last Summer Rachel began two months of daily radiation. This was followed in September and October by additional inpatient and outpatient chemotherapy.  By the holidays, scans showed the tumor was almost non-existent and we all had reason to celebrate.

The New Year began and one day in late January, Rachel woke up to horrible back pain.  The tumor, or a new tumor, was aggressively growing out of a nerve in her lower spine.

Unable to get quick approval to get her back into treatment with the first hospital and care team, Rachel’s care transitioned to another facility and oncology team, and surgery was performed to remove as much of the tumor and cancer cells as possible.  Additionally, the surgery included enclosing her lower lumbar in a cage, which had deteriorated. Six weeks passed with Rachel still experiencing excruciating pain and even falling several times. While some pain was expected post-surgery, it was becoming clear something was terribly wrong.  Scans showed the cancer had metastasized and the race began to stem the spread. Her fiancé and mom also began researching clinical trials.

The last two months of Rachel’s life were filled with setbacks; fights with her insurance company for treatment authorizations, denial to enter a clinical trial for a promising cell-targeted chemotherapy treatment, and a roller coaster of medications to help manage and control her pain. Days were filled with doctor appointments, physical therapy, chemo, scans, hospitalizations, and drugs.

Through it all, Rachel continued to work for me, as much as she was able.  She said it helped take her mind off what was going on. So we continued to meet at 10 am when she was up for it. I had Zoom calls with Rachel at her house, from her parent’s guest room, and even from her hospital bed.  I recognized that this was more than just a distraction for her. She knew, and I knew, that having a job meant coming back. She was planning a trip to Vietnam with her parents, and making future plans with her fiance.  Normalcy and planning for the future, I think, helped her get through the day-to-day emotional grind and pain of battling cancer.

My last Zoom meeting with Rachel was on the morning of May 15. She was scheduled to fly out to Los Angeles with her fiancé and mom to meet with a Ewing Sarcoma specialist to get fast-tracked for participation in a clinical trial. She didn’t make that flight, and instead, was rushed to the ER.  Diagnosed with severe dehydration and anemia, she was given IV fluids and blood transfusions. At the time, her mom texted that Rachel would likely be released the next day and they would look to make the trip to LA at the end of the week.

Rachel never made it out of the hospital.

Things worsened quickly as her health deteriorated and the cancer grew. Towards the end, she was placed in an oxygen tent and on a feeding tube.  On May 24 the palliative team was talking hospice and end-of-life care.  The goal was to try to get Rachel home for whatever time was left but it was too late. We got the text Sunday evening on May 28 that Rachel had passed.

If you live a lucky life, you get the chance to meet a person who profoundly touches your heart and changes your life. Rachel’s incredible courage and perseverance through an ordeal no one should ever have to go through will stay with me forever. As an accomplished artist, she had a way of looking at life, and her circumstances, from an artist’s view.  And the creative spirit in her never left, even towards the end. Her mom shared with me that Rachel even decorated her wheelchairs and canes. A still life she painted for me as a gift is displayed in our living room where I walk by it all day. Rachel may be gone but she lives on in our hearts, our minds, and in her art.  My husband and I will treasure this painting for the rest of our lives.

I’ll miss talking to Rachel about art, our pets, work stuff, and life in general.  We were kindred spirits and had a very special relationship and I am so incredibly thankful that I got to spend a year in my life having her in my life.

Ten a.m. will never be the same as I mark that time Monday through Friday. Rachel time. Our time.

Note: At the beginning of the year, Dr. Nick van Terheyden talked with Rachel on an episode of Healthcare Upside Down. The episode focuses on Rachel’s care journey and the challenges she faced in navigating health insurance.