On October 19, 2021, my world changed forever! Brady, my 14-year-old son, lifted his head and I saw a lump on his neck, about the size of a tennis ball.
We went to ER where they took a ct scan and it revealed a mass pressing against Brady's trachea, closing his windpipe. In the picture below, the thin black area shaped like a comma is what his windpipe was. It is supposed to be a full circle.
Brady was flown by helicopter by himself (Covid protocols) to Children's Hospital of Philadelphia. As a Mom, I was petrified!! I knew we were in trouble when my 14-year-old son was airlifted to a hospital in the city, 2 hours away from us, sitting in an emergency room without anyone he knew. Brady was admitted to the PICU (Pediatric Intensive Care Unit) for the next 21 days. Brady and I missed being in his sister's wedding, trick-or-treating, and his nephew's birthday party.
Doctors kept doing daily rounds, letting us know they had no news. They didn't mention the C WORD at this point, but they kept saying MASS. On November 2, 2022, the oncology team came to tell us they now know what is in Brady's neck- a rare form of cancer called NTRK Spindle Cell Neoplasm.
Treatment: Brady is taking oral chemo twice a day, called Larotrectnib, which was approved in 2018 for his type of rare cancer. He has to go to CHOP for monthly blood tests, to make sure that the Larotrectnib isn't killing his liver or bones, and if not he gets his chemo. He has to go every two months for ct scans to see the shrinkage of the tumor and every 6 months for his MRI's to determine if it is safe to remove the tumor by surgery instead of taking chemo, and as of yet, it is not. Brady may need to take Chemo for 2-5 more years!!
Learning our son has cancer was the worse day of our lives! To this day, we don't know what the future holds. If Larotrectinib will make the tumor disappear, what the chemo will do to his body (now or in the future), and we don't know if our son will ever get back to the typical teen that he is supposed to be, physically and mentally.
I missed 21 days of work, and my husband missed 15 days while waiting for a diagnosis. Brady also has ARFID (Avoidance Restrictive Food Intake Disorder) which he only eats about 10 foods, which is all about texture, sight, and smell. If it isn't the "normal" way he likes it, he will throw it up. So being in the hospital for 21 days, got very costly with getting three meals delivered from restaurants outside of CHOP. Not only did we have a loss of income, extra costs at the hospital for 21 days between food, daily living, and my husband traveling back and forth to home, (gas, and tolls), but then the bills came.
It is very hard to explain to your cancer kid, that you can't bring joy to his life because you cannot afford it. That he cannot get his favorite chicken from down the street because you don't have the extra cash this week, because the bills are piling up. Companies call looking for money, and they demand payment in full, until they hear that your child has cancer. Then they politely say, I am so sorry you are going through this, with the next sentence being -what can you send today?
I am creating this fundraiser to help raise money for help to cover the cost of the medical expenses and the cost that comes with a cancer diagnosis. The Ferguson family truly appreciates any donation that you are able to donate!!!!
Upper Mount Bethel Township, PA