Rhett has always had a twinkle in his eye, a contagious laugh, a warm smile, and a hug for everyone. He says it best when he says “I love EvErYbOdY!”
In February of 2021 Rhett, at three years old, was diagnosed with a rare form of childhood cancer, Ewing’s Sarcoma. This form of cancer is aggressive. His tumor is soft tissue, on his chest wall with a spine extension to the thoracic region t8-t11. When diagnosed he had 50% spinal cord compression with no motor deficits. The boy plays hard and rarely complains of pain. He is always a second away from giggling and usually looking for the next opportunity for FUN. The incidental find of a large cancerous tumor while everything appeared “fine” is testament to his strong will and zest for life. If it wasn’t for a bout of constipation (which may or may not have been induced by either antibiotics for an ear infection OR nerves effected by his tumor) we may not have found it as soon. Despite it all, he seemed to be a happy, healthy boy.
Rhett’s journey is beginning to get harder. He handled the first 3 months of chemotherapy exceptionally well. He completed tandem chemotherapy with 31 radiation treatments. He still has chemotherapy to complete as well as followup care that will extend for 5 years....this, is with the hope that his tumor scans show that the cancer is dead at the end of his chemotherapy regimen. His care plan is extensive, with both mom and dad being very involved in his care plan. Radiation is taking a toll on his body and causing some significant changes to his plan of care, not to mentioned delayed recovery times for chemotherapy. We do not know what other changes will occur over time due to radiation, it is unfortunately a risk Rhett had to afford as his tumor was considered inoperable-operation had too high morbidity risk. Chemotherapy expects to continue throughout late September but possibly longer which all depends on how his tumor responds and how his body recuperates with each treatment. Rhett has a central line for medication administration, a NG tube for medication administration and tube feedings, scheduled dressing changed, along with PRN dressing changes for the skin that has been impacted by radiation. He is immune suppressed with chemotherapy, so his parents are constantly managing his care and home in a way to prevent illness. Despite all the best attempts, Rhett's microbiome (his own body's flora/bacteria) are his biggest threat. He has had to be admitted for neutropenic fever on three occasions, a potentially life threatening complication, so far. As you can imagine, health status can change on a dime. The Flaten family takes life one day at a time, sometimes one minute at a time when necessary accommodating for Rhett's needs while they care for his other 3 siblings as well.
Rhett’s parents own a small woodworking business that has had to be modified significantly to adjust to Rhett’s medical needs. Productivity is down. They have help, but have needed to lessen the amount of orders to make life manageable. Rhett’s Dad has primarily been managing the business. Rhett’s mom is a nurse, but is currently not working, staying at home full time to care for Rhett and to support his three other siblings during this time (1 year old, 5, and 13).
Childhood cancer has impacted the Flaten family tremendously on every level. They are grateful for any and all support that has and will continue to allow them to be home with Rhett and his siblings.
Thank you for visiting Rhett’s Ewing’s Sarcoma Journey on Help Me Bounce.