Jade’s Hope For a Future With More Equitable Care - darkred-elk-530982.hostingersite.com

By Jade Gibson, Pediatric ovarian cancer survivor and patient advocat

At 15, Jade Gibson was diagnosed with a rare germ-cell ovarian cancer. In the 19 years since her doctor at her hometown hospital in Georgia walked her through her treatment plan, Jade has been advocating for improved services for adolescent and young adult cancer patients in rural communities. Today, she also serves as a patient advocate for the Children’s Oncology Group.

ALL PHOTOS COURTESY OF JADE GIBSON

The anticipation of summer break for high school students can be filled with excitement. Most teenagers are looking forward to family vacations, participation in academic or sports programs, part-time jobs, and most importantly – no homework!

But in the summer of 2005, I did none of those things. Instead, I spent the months between my sophomore and junior years of high school having two invasive abdominal surgeries, that involved removing one ovary and one fallopian tube. That was followed by eight rounds of three different types of chemotherapy to treat a rare ovarian germ cell tumor the size of a grapefruit.

Thanks to the wonderful care team in pediatric oncology at the Medical Center of Central Georgia Children’s Hospital, I’ve been cancer-free for 19 years. Survivorship has taught me that cancer is a disease that attacks more than just your physical well-being, it affects every single part of your life.

My hometown of Macon, Georgia is in a rural part of the state. At the time, my hospital lacked many of the support services that larger hospitals in bigger cities often have. To improve my overall health, I’ve learned a lot by advocating for my unique needs. In advocating for myself, I found my professional calling as a patient navigator.

I’ve found advocating for others to be a powerful tool for healing. It’s why I joined the Children’s Oncology Group (COG) as a patient advocate. I now stand alongside doctors, nurses, researchers, survivors, caregivers, and donors committed to doing everything we can to ensure families from rural communities have access to the best possible treatment and whole-patient care.

Symptoms that led to rumors and judgment

I was 15 when my mother noticed my menstrual cycles were only occurring every other month. Concerned, she scheduled my first appointment with a gynecologist. During the appointment, the doctor did an ultrasound and told us he saw a tiny mass that he thought was a cyst. He wasn’t overly concerned but wanted me to come back in a few months.

However, before that follow-up appointment, I began having severe abdominal pain and nausea. I also started vomiting – a lot. And I was tired all the time. The most alarming part of my physical symptoms happened when my stomach began to protrude. This didn’t fare well for someone who experienced bullying in primary school.

In high school, I was a reserved and studious student. Though I was not very sociable, I remember the stares and unwanted attention when rumors began to swirl that I might be pregnant.

But even after my mother and I made several trips to the emergency department, primary and urgent care we still had no clear diagnosis. When we finally returned to the gynecologist, he decided to take a blood sample and do another ultrasound. We were sent home to wait for the results and could never have imagined the diagnosis.

When the results came in they were clear – I had Stage III ovarian cancer. Most people don’t think about ovarian cancer happening in kids, but it can happen to babies, toddlers, and teenagers like me.

We also learned that I had a germ-cell tumor, which occurs in young girls. Unfortunately, this type of tumor grows quickly. My treatment plan would consist of surgery and aggressive chemotherapy.

Beginning my lifesaving treatment

Because the path to diagnosis was a bit uncoordinated, my mother decided to get a second opinion at Children’s Hospital of Atlanta – a two-hour drive from Macon. In the end, she decided to pursue treatment closer to home.

At the Medical Center of Central Georgia, we met with, now retired, Gary Eddy, M.D., an expert in gynecological cancers, who would perform the surgery. As Dr. Eddy walked us through the procedure, I realized he was the first physician to include me in the conversation about the steps that would be taken to save my life.

When he was done, I only had one question for Dr. Eddy, “Will I be able to have kids one day?” He kindly explained all the possibilities – including the potential need for a full hysterectomy. Thankfully, I didn’t need a hysterectomy, but I still appreciate Dr. Eddy’s honesty and compassion for such a sensitive conversation.

After surgery, I went home to recover and build up some strength before my chemotherapy treatment began. While I felt prepared for all the medical scenarios, I wasn’t prepared for the emotional toll surgery takes – or the sudden absence of my independence. Recovery was difficult and I needed help from everyone for every little thing.

A few weeks later, I started chemotherapy. As expected, I lost my hair and I lost weight. My nails were fragile and some discolored. I was told I had “thin skin” which caused me to bruise more easily. My time was spent alternating between weeks of in-patient hospital stays, going home to give my body rest, and completing my studies for junior year.

I’m so thankful to my oncologist Ihsan Al-Khalil, M.D., who is now retired, my nurses and my technicians. They did their best to make each admission feel like we were at our home away from home. After having spent the entire month of October in the hospital, they knew how badly I wanted to spend Thanksgiving at home, with my family, and they made it happen.

Processing my new life and understanding the realities of health disparities

Many teenage oncology patients want to complete treatment quickly and get back to the life they knew before cancer. But cancer happened in the midst of me developing into a young woman. Whoever she was, whatever dreams she carried, I would never know. So much had happened without me realizing all of the physical and emotional scars that remained, long after treatment was over. When I returned to school for senior year, it felt like there was an expectation for life to go back to “normal”.

I didn’t tell many people about my diagnosis and a lot of childhood friendships fell apart. After having been through a brutal physical and emotional experience that was so deeply personal, returning to school was difficult. Chemotherapy and surgery exhaust the body and the mind. I found it hard to concentrate or have normal teenage conversations.

When I was 18, Dr. Al-Khalil cleared me to be in “surveillance” – it’s the phase between active treatment and “survivorship”. Being in surveillance meant I didn’t have to take nearly as many medications or make as many trips to the hospital for labs or imaging.

As my physical health improved, my mother and I turned our attention to the other parts of my health that had been neglected during treatment. We started with my oral hygiene and luckily the chemotherapy had not affected my teeth or gums. However, after visiting an optometrist, my vision was severely impaired.

Around this time, I noticed how many follow-up appointments I had. I also started paying attention to the financial burden my mother was facing. I began researching what resources might be available to us. I discovered organizations that offered supportive oncology care ranging from scholarship opportunities to Medicaid waivers.

My excitement turned into devastation when I was repeatedly told that I was ineligible because I was no longer in active treatment. I was also now 18 or I didn’t meet certain criteria.

Sadly, my experience is what many patients who are treated at rural hospitals face. Without a patient navigator to help guide us through the maze of healthcare resources, we didn’t know about cancer rehabilitation services like physical, occupational or speech therapy.

Finding my inner strength and using my voice to advocate for others

In the 19 years since my diagnosis, I’ve grown physically, mentally and emotionally stronger. In addition to being a professional patient advocate, this is also where I spend my volunteer time. I’m especially focused on advocating for adolescent young adult (AYA) cancer survivorship.

In 2019, I began volunteering with the Georgia Center for Oncology Research and Education. This organization specifically focuses on strengthening cancer care for patients in our state.

Today, I serve as a patient advocate with NRG Oncology, where I champion efforts to increase the participation of marginalized AYAs in adult clinical studies and cancer research. With COG, I serve on the Patient Advocacy Committee and as the patient liaison for the Germ Cell Tumor and the National Community Oncology Research Program (NCORP) committees.

Why do I spend so much of my time being a voice for current and future cancer patients? Because every cancer patient needs quality cognitive and emotional care – in addition to expert physical care. The psychological challenges that many of us live with during and after treatment are complex. When we visit a hospital or clinic, certain sounds or smells can instantly trigger the wounds that live within us. The anxiety, or as we patients call it “scanxiety,” that comes with waiting for imaging results is overwhelming.

I give my time to COG and other organizations because some community-based cancer centers in rural communities still don’t have the infrastructure to host clinical trials or provide patients with post-treatment support. This was true for my hospital when I was a patient. Meaning, that I received no education nor an offer to participate and help oncologists gain crucial information that could improve the quality of life for others affected by their disease.

In joining COG, I see a future with more effective and less harmful treatments, new disease knowledge, greater family support and fewer health disparities. Through COG, I’ve also learned how deeply committed the pediatric cancer community is to every child and family affected by cancer, regardless of where they live or what their socioeconomic status is. With all of us working together, I am hopeful.

The American Childhood Cancer Organization says, “Clinical research has been responsible for the discovery of many groundbreaking treatments for childhood cancers.” Yet, all of us in the pediatric cancer community are well aware that 4% of federal funding goes toward researching childhood cancers. This simply is not enough.

Much of the progress that has been made, is thanks to gifts of $5 and $5 million and everything in between to places like the Children’s Oncology Group Foundation. Without philanthropic investment in childhood cancer research, dozens of nonprofits, foundations, and thousands of families would not be supported in the crusade for discoveries. As an emerging research advocate, I’m learning the power of the patient voice and it motivates me to share my story and this mission.