Neuroblastoma In Teenagers: Tristin’s Story
At the age of 13, Tristin, a carefree, healthy-appearing, soccer-playing, and viola-loving teenager’s world changed when he was diagnosed with cancer in the form of stage four neuroblastoma. Even the doctors were hesitant to make the dreaded diagnosis until all the test results were received since this particular form of cancer usually attacks young children and is extremely rare in teenagers.
Six months prior to his diagnosis, Tristin went to the ER with lower abdominal pain and was told he had appendicitis, a reasonable assumption, given his symptoms and age, so a CT scan was not ordered to determine if there could have been another cause for the pain. His appendix was promptly removed, but he continued to have problems. Finally, the tumor in the back of his abdomen became large enough to be felt on a physical exam, and he was diagnosed with a mass. He was sent for scans at that time to validate the mass for size, structure, placement, and malignancy. The news was shocking and devastating to both family and friends.
Neuroblastoma forms from the neurons running down the spinal column where a cell goes crazy, reproducing and growing into a large tumor. The tumor in Tristin was not encased but had threaded itself through small openings, spreading on the other side and wrapping around organs, including the aorta of his heart. A long term intravenous catheter device called a portacath was surgically implanted under the skin on his chest for the frequent lab draws required and the caustic chemotherapy treatments. The first round of chemo required a week long hospital stay.
During hospital stays, Tristin’s family discovered ways to make things a little easier on themselves. Some tips they suggest are:
* Obtain a folding wheeled metal dolly to transport your luggage and belongings from the car to the room. It will make moving in and out much easier.
* Purchase several large plastic containers to hold personal items, food, and drinks.
* Bring some favorite items, pillow and blanket or quilt to make your room look and feel more like home.
* Bring a small television/DVD player, movies, laptop computer, music and/or games
* Keep a journal. CaringBridge.org is a wonderful place to meet others and to keep friends and family updated.
The support Tristin received from his community and friends were overwhelming and greatly appreciated. Organizations like Emily’s Power for a Cure brought snacks and hot meals for the family which helped tremendously with expenses. School friends visited or texted and continued to be supportive after he went home, even when he lost his hair and entered the world of chemo baldies.
After chemo treatments, Tristin often experiences nausea and vomiting. Then his blood counts drop until they bottom out causing neutropenia, a state where the immune system is compromised, which causes lethargy, weakness, and lack of appetite. At this point, he doesn’t feel like climbing the stairs, talking to friends, or having visitors. A baby monitor is extremely handy during times like these. Video baby monitors are useful for observing a sick child from another room easing parents’ minds, and a monitor with an intercom feature puts communication between parent and child at the touch of a button.
At the time of this writing, Tristin is still battling this disease. He underwent an extensive 12 hour tedious surgery to remove the tumor at Sloan Kettering Hospital in NYC. During surgery it was discovered that he had several pea size areas of neuroblastoma in his liver, along with a few spots on his bones. The good news is that his bone marrow remains clean. He is currently traveling back and forth to NYC for treatments, and his last scans showed some improvement. His attitude is amazing and he is an inspiration to all who know him. To follow Tristin’s story go to CaringBridge.org and visit Tristin Greer.