July 23, 2021
Wyatt and his family’s story is a remarkable one. A story of strength, love, faith and resilience. Wyatt, a two year old cancer warrior. A superhero indeed. Below is Wyatt’s story told in his mom’s own words.
They say that sometimes real superheroes live in the hearts of small children fighting big battles. Twenty three month old Wyatt Kenton Ewing is a perfect example of a superhero. At 11 months old, Wyatt was diagnosed with a very rare form of cancer called Alveolar Rhabdomyosarcoma. This type of cancer is diagnosed in only 350 children per year in the US. His tumor was located on his left nostril and his initial scans showed evidence of the cancer in one of the lymph nodes in his head as well. Thankfully, there was no other evidence of the cancer throughout his body. Just 18 days before his first birthday Wyatt was given his first cycle of chemotherapy. He was started initially on a 10 month long protocol that involved weekly doses of chemotherapy, with every third week requiring an overnight hospital stay during which he would received two additional chemotherapy drugs. As plans often do, Wyatt’s protocol ended up being changed after his second overnight stay. After that cycle Wyatt experienced a severe toxicity reaction to one of his chemotherapy drugs and he developed something called veno-occlusive disease (VOD). He was building up fluid in his abdomen making it difficult for him to breathe and his platelets were being continually consumed causing him to have profuse GI bleeding and required him to receive continual platelet transfusions and at least daily blood transfusions.
By the grace of God and thanks to the incredible team of doctors at Johns Hopkins, Wyatt recovered from this terrifying complication after 9 days in the PICU. He somehow managed to only miss one week of chemotherapy (which he later made up) and he continued on. His protocol was changed to a different set of chemotherapy agents after this reaction and instead of a single nights stay every three weeks, Wyatt had to spend 5 days in the hospital every third week and he was given chemotherapy all 5 days. He also continued to get the weekly chemotherapy as well. This new chemotherapy protocol hit Wyatt hard, but hopefully hit his cancer even harder! After every one of his week-long chemo stays his counts would plummet to literally zero and he would end up spiking fevers that landed him back in the hospital for another week while he got transfusions and he and his parents anxiously waited for his counts to recover, praying they whole time that he wouldn’t get an infection or god forbid a virus.
About 14 weeks into his chemotherapy protocol, Wyatt also began proton radiation therapy. He had radiation to his nose, the diseased lymph node. As well as many other lymph nodes within his head and neck. During the radiation period Wyatt had to be anesthetized every day, 5 days a week, for 6 weeks. He also still received his big doses of chemotherapy during this time. Because of the demands of this period of time, Wyatt’s big brother and favorite sidekick, Rhett, had to go and live with his grandparents so that his Mommy and Daddy could do what they had to in order to help his little brother. Wyatt and his parents relocated closer to Hopkins and were forced to spend most of their time away from their other son, only getting to visit with him for one day at a time whenever they could.
Radiation hit Wyatt like a ton of bricks. He got mouth sores so severe that large portions of his mouth and tongue sloughed off completely. He was hospitalized the majority of this period so that he could receive IV pain control and he was unable and unwilling to eat by mouth for about 2 months during and following radiation. He had a feeding tube placed that allowed him to get nutrition and medications and despite this hideous period he continued to grow and surpass all expectations!
Wyatt spent most of his second year of life in a hospital, away from family and his favorite person in the whole world – his big brother Rhett. He met some beautiful people along the way though and had a team of nurses and doctors who fell in love with him and became family to him and his parents. Wyatt completed his 10 month chemotherapy protocol on April 20th, 2021 and had clear scans on May 6th, 2021 indicating Wyatt was in complete remission at that time!
Wyatt’s journey is not over as this type of cancer is very hard to treat and has a recurrence rate that is much higher than any parent would ever like to hear. Wyatt will have scans every three months for some time as the doctors continue to monitor him for any evidence of relapse. He will face complications as a result of the chemotherapy and radiation that he received, but his family hopes and prays with all of their hearts that Wyatt will never have to endure a battle as gruesome as this was and that Wyatt will one day be considered cured.
It’s easy to consider all Wyatt went through and find fear, pain, and sadness, but that is not at all what Wyatt found during his battle. Despite weeks in the hospital, millions of pokes and countless days where he should have just wanted to lay around and do nothing, Wyatt was an incredibly brave little boy who smiled, laughed, played and continued to grow! He could put a smile on anyone’s face, he kept the nurses laughing as he rolled into clinic with his iced coffee (decaf of course) and his joy helped keep his parents smiling during such a terrifying time. He is truly a superhero and the bravest little boy his family has ever known!!
Ironically, in Wyatt’s newborn photos, his brother Rhett wore a shirt that said “Every superhero needs a sidekick” and Wyatt had a shirt that said “sidekick”. Little did anyone know that Wyatt would end up being the strongest of all superheroes and Rhett would be the very best sidekick in the world to his little brother!!