Jade Gibson: The Transition and Opportunities Transitioning from Pediatric Care to Adult Oncology
According to theconversation.com (2018) we see our childhood memories through the lens of a video camera. A recording, that portrays the scene without bias? Highly unlikely. Thanks to infantile amnesia, most adults cannot recall events that occurred as early as the age of three and four. Think about it. What year, age, or memorable moment is the highlight of your childhood?
If someone asked me, I’d say: Picture it! Macon, Georgia – Spring of 2005 and I was fifteen years old. A sophomore in high school, fantasizing about the fun I would have that summer. I’m talking about months free of tests, homework, classes, and teachers. Who could ask for anything more! Only first, it was mandatory that my mom take me to the doctor for what she believed to be a serious offense. The crime: having six periods a year.
So there I was, unwillingly headed towards my rite of passage and meeting with a Gynecologist for the first time. Thus, I was poked, prodded (which revealed a tiny mass), and had labs drawn. The adults making decisions on how to take away God’s gift and planning for my follow-up appointment. In the time that we were waiting to return, my body began to act in odd ways. I experienced bloating, nausea, vomiting, abdominal pain, and fatigue. My stomach started to protrude which was beginning to stir up a lot of uncomfortable chatter after I started missing days of school.
We took trips to the emergency room and urgent care centers, but all anyone could say was that it was related to my menstrual cycle “She should take Motrin for the next three days and she’ll be fine.” Months passed and I celebrated my sixteenth birthday, then we finally returned to see the doctor for my follow-up. He revisited what brought us in and presented options to address the issue. Then the doctor asked if there had been any other changes? My mom and I explained all that I had gone through in the time since our initial visit and he recommended doing an ultrasound.
The doctor advised my mom on next steps, drew labs, and I went on none-the-wiser. Then it happened! I headed home from school ready to start enjoying summer break and my mom informed me that another appointment had been scheduled for later in the week. I thought, “Oh, great!” my excitement to sleep in ruined, but it sounded like there was no getting out of it. We arrived at the appointment and went through the standard minutia of waiting to be called to a room. Only this time things were different. The doctor entered the room, but his conversation wasn’t directed towards my mom – it was more towards me.
As I listened, he stated that the tiny mass he thought he saw upon my initial visit had developed into a larger mass the size of a grapefruit. This mass had a lot to do with me being sick and in pain. The plan was to remove it and we would go from there. I didn’t have any questions; I was just a kid doing what I was told. Before I could have the surgery, I had to have a consultation with the surgeon. There was a lot of paperwork my mom had to sign and this time we weren’t going to an exam room or big waiting area. We went to the hospital and to what felt like the top floor in the building.
We were invited into the doctor’s office and there were other people in the room wearing white coats, listening, and taking notes as he spoke. He used words like germ cell carcinoma, rare, and then he said Ovarian Cancer. Next, he asked if I had any questions? I could only come up with one “Will I be able to have children?” As he began to talk the room got silent and his voice became a wash. I left the appointment and I didn’t feel frightened about what was to come, just optimistic. It was a good outlook to have because in a whirlwind, there I was being scheduled for any and all kinds of scans and procedures.
By June, I’d had my first surgery and a port installed. By July 4th, I was being admitted to the Children’s Hospital to begin the eight rounds of aggressive “weekly” chemotherapy treatments. That year was tumultuous for me and especially for my family. In that time, I met four teenagers facing cancer diagnosis’ – out of the five of us I was the only teenager to successfully complete my treatments. I’ve learned that survivorship is not just making it past a five-year mark of no recurrence. It is living beyond the diagnosis and side effects post-treatment.
There is a deficiency in support services offered to those transitioning from pediatric care to adult oncology. It affects the continuum of care for these patients as they become young adults who are presented with new challenges in the healthcare system. As children, perhaps they nor their families knew what questions to ask. As young adults, maybe they are unsure of how or who to ask fearing that they would open themselves up to judgement or ridicule.
This hurdle can be overcome by bridging relationships with the members of the healthcare team. When the communication lines are open, barriers to care that affect multiple facets of the patient's quality of life can be removed or reduced. In my opinion, providing referrals or care recommendations for adolescents and young adults for the following support services would positively impact their survivorship journey:
• Connecting patients to cancer rehabilitation services for physical, occupational, speech, and feeding therapies.
• Explaining the benefits of palliative, skilled nursing, or in-home personal care services.
• Addressing psychosocial distress related to self and body confidence, post-traumatic stress, medication management, disclosure, and advance care planning.
• Providing education on treatment-related side effects such as neuropathy, pain from scarring and nerve tissue damage, mobility, fatigue, and fertility.
• Sharing knowledge of academic scholarships or professional development opportunities offered to cancer patients in active or post-treatment status.
• Informing patients and caretakers of statewide and local events or camps that encourage fighters, survivors, and supporters to relish in the camaraderie and support that exists within the childhood and young adult cancer communities.
The National Comprehensive Cancer Network defines supportive oncology care as all the care that cancer patients need outside of their direct medical treatment. By sharing my story with Georgia Core, I hope to shine a light on some of the vulnerabilities that this patient population faces and develop solutions that will enrich the lives of future generations.
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