In early March 2012, just a few days before Rylan Romeo-Coquete turned 1, his dad, Jon Romeo-Coquete, noticed a lump under his left arm. Jon and Jen Wityshyn, Rylan’s mom, took him to the ER to get it assessed. Thinking it was just a blockage, a simple outpatient surgery was scheduled for the lump. The following week Rylan’s parents noticed that he was tilting his head to the left.
After the operation, the surgeon informed Rylan’s parents that abnormal cells were found in the lump. Rylan’s surgeon thought it would be best to take a chest x-ray and an MRI.
The end results were not something Jen and Jon expected at all. Rylan had 3 tumors in his brain and one in his spine. The doctors concluded that this was a rare form of brain cancer called AT/RT – Atypical Teratoid/Rhaboid Tumor.
Rylan’s neurosurgeon felt that operating on the tumors would cause greater danger to him and radiation on a child this young would be detrimental to any further development. Therefore Rylan was left with chemotherapy. Within a week of his diagnosis Rylan started his chemo treatments.
After three rounds of chemo Rylan’s tumors shrunk, including the one in his spine which allowed his doctors to safely do Intrathecal chemo directly into his spine for three treatments. In June of 2012 Rylan started his high dose chemo and stem cell transplants. Everything went well, however an emergency MRI was done in August because Rylan started experiencing some facial spasms, but everything came back good – no growth.
Rylan’s family says, “We can never be thankful enough for all the support and encouragement of the staff at Children’s Hospital. They were always there to ease our minds and jump right on any concern and get the answers. We have felt so well taken care of and so fortunate to have such a great team of people working with us to help save Rylan.” A couple of his favorite things to do during his stays include playing in the playroom on his ward and flirting with the nurses!
Rylan started his last round of the high dose chemo and stem cell transplant on September 1, 2012. He came through it very well, with few complications and was released from the hospital on September 19th. On October 15th Rylan went back to get his next MRI and unfortunately there was tumor growth shown. Rylan’s family is in the process of figuring out their next step.
“We don’t know if surgery will be back on the table, as it was not an option unless the two smaller tumours (one in left lobe and the other one close to his pituitary gland) disappear altogether. At some point we will have to do radiation and it would encompass the entire left hemisphere and a very large portion of the right side as well. So we want to delay this as long as possible so that Rylan can continue to grow, developmentally,” said his grandmother Sherry Wityshyn.
UPDATE: It is with a heavy heart that we announced the passing of little angel, Rylan. Within his short life, his story and smile inspired us all and it will continue too. Our thoughts and prayers are with Jon and Jen.