Haley's Next Adventure

Hello everyone, my name is Haley Thomas, and I was diagnosed with terminal cancer in February 2023. This is my story.

Feeling overwhelmed and stressed with school while struggling with mental illness in Spring 2019, I decided to accept a travel training position with my work in Orlando, FL over the summer. While I was living in Orlando, I had been feeling occasional pain in my right chest that radiated to my armpit that occurred throughout my 6 month assignment.

When I was back in Wichita and the pain had yet to seize, I was convinced by my friend to go see my primary care doctor. I had no idea what would come from this appointment, as I had never been sick or hurt much as a kid. Due to my D-dimer test being high and the chest x-ray abnormal, I was sent to the ER to get a CT of my chest, and this is where they found a lesion on my 2nd and 3rd ribs. After more testing and biopsies, I received a call from my provider the day before Thanksgiving 2019 telling me the biopsy confirmed this was cancer.

This cancer was later defined as Ewing’s Sarcoma. For those who don’t know much about Ewing’s Sarcoma, it’s usually found in young children and comes with an intense treatment regimen; This includes 14 rounds of chemotherapy and surgery to remove the sarcoma (7 chemo cycles before surgery to remove the sarcoma, followed by another 7 cycles). By January 2020, I completed IVF to harvest my eggs and had a Hickman catheter placed so I would be ready to start my first chemotherapy cycle VAC/IE on 1/13/2020. Each cycle would be 4 days a week, 6-7 hour infusions each day, with a booster on the 5th day; I would be allowed 1 week rest before the next cycle began. I am very blessed and grateful to have such a supportive family and friends throughout this journey, and I loved being able to have someone there with me during my long treatment days. Side effects I had from chemo would include nausea, vomiting, lack of appetite, mouth ulcers, acid reflux, fatigue, malaise, hair loss, skin peeling (hands, feet), constipation, and anal fissures. Oftentimes, I felt like the side effects would never seize, and treatment was often interrupted when I would develop neutropenic fevers, requiring hospitalization for 7-10 days at a time; I was hospitalized 3 times during this first half of my treatment.

It wasn’t long before COVID hit in March 2020 that everything changed. I was no longer able to have a visitor with me during my treatments and was left alone in the hospital during the height of the pandemic. I was receiving treatment at the KU Sarcoma Center in Overland Park, KS for the first few cycles, and I would stay at the American Cancer Society’s Hope Lodge with my caregiver; however, with COVID running rampant and quarantine beginning, Hope Lodge was forced to close its doors. Rules for entry into the treatment centers were strict, and my parents would often have to wait in the parking lot while I went in for treatment. I then was allowed treatment in Wichita to avoid traveling as frequently due to not having long term stay at Hope Lodge.

I finished 6 treatments before it was determined I was ready for sarcoma removal surgery on 6/2/2020, which required the resection of part of my 2nd, 3rd, and 4th ribs. This surgery was at least 5 hours long and required help from plastic surgery to reconstruct my right chest wall. Waking up from this surgery was the worst pain I’ve felt in my life. Moving, coughing, and simple things such as breathing became difficult. I had many drainage tubes coming out of my chest, struggled to get the pain controlled, and I was unable to sit up or walk without severe pain. I was released from the hospital 11 days later and had residual pain from surgery for the next 6 months as well as loss of nerve sensation in my right chest. I then started the remaining adjuvant chemo (8 more cycles) until Nov 2020, when I was declared finished with treatment.

For the next year, I had CT scans and lab work every 3 months to monitor for reoccurrence. In Nov 2021, I began experiencing low back pain and again went to my primary care to see what she thought. As she is very thorough, she did many tests and found a concerning spot on my lumbar spine (L2) as well as a lung nodule in my right lung; L2 biopsy on 1/18/22 confirmed metastatic Ewing’s. I then had a PET scan on 2/15 with no evidence of disease besides the localized spot on my spine, thankfully the lung nodule was not malignant. I was referred to radiation oncology in Wichita and underwent a single Cyberknife radiation treatment. I was sick (nausea/vomiting) immediately after the treatment for the day but had no remaining symptoms afterward. I continued with monitoring every 3 months and decided to travel to India to see my best friend, Meg. I was in India from July-Dec 2022, and I continued to monitor for recurrence every 3 months while there. Near the end of my time in India, I began to experience worsening back pain (which I decided was chronic from radiation) as well as rib pain again. This concerned me, so we got CT scans slightly early to check for signs of disease; and at the time, Nov 2022, the CT scans were unremarkable and had no evidence of recurring disease.

I decided to return home to the US in Dec 2022 after struggling with mental illness and missing my family. I since moved in with my mom and would travel between her home in Pueblo, CO and my dad’s in Wichita, KS. When it came time to get my next interval CT scan and labs on 2/1/23, I was staying with my brother in Wichita when my oncologist informed me that the scan showed two new lesions on my L4 spine and in my R acetabular region, worrisome for more bone metastases. I then went on to have a PET scan in Kansas City which showed the development of multiple lesions compatible with metastatic disease… It was at this point that the disease was classified as incurable, and while there are some treatment options to try and slow further spots from coming back, there is ultimately no cure. I had a long talk with my mom and my oncologist about treatment options (chemotherapy, immunosuppressants, radiation, clinical trials) used to prolong life. Currently, I am only having mild symptoms that can be controlled with medication; however, I have chosen to forgo treatment at this point and prioritize quality of life by spending time with my family and traveling with my friends while I feel healthy and able.

I don’t know how much time I have left on this Earth, but I do know that there are a few more places on my bucket list I wish to visit, and with your support, I’m hoping to see them. This summer, I plan to travel with my best friend, Meg, to a few South Asian countries including Indonesia, Thailand, and northern parts of India. I then hope to return to the US later this year in time to see the aspens change color in Colorado. Traveling has always been a passion of mine, and with an unknown amount of time left, I want to see as much as I can while I can. I have many more countries I want to visit next year including Greece, Ireland, South Korea, and Iceland. In the US, I also want to explore more of the Colorado and Utah wilderness, National Parks like Yosemite and Yellowstone, road trip the Pacific Coast Highway from San Francisco to Seattle, cruise Alaska, soak in the Florida sunshine, visit New York during New Year’s, and see the lighthouses in Maine.

Please help me live my best life by contributing to my GoFundMe account or follow along this crazy adventure of my life on my social media (listed below). Thank you for taking the time to listen to my story, I would appreciate it if you could share this with your friends and family.

Thanks, Haley Thomas

Insta: Haleyjjthomas and theZotoVibe (Meg & Haley joint account)

Tiktok: theZotoVibe (Meg & Haley), hehe.heihei (Haley personal)

Youtube: theZotoVibe