30 DAYS/30 STORIES® 2022
There’s a commercial on TV where a young girl comes on and says she didn’t have anything to worry about as a kid until she was diagnosed with cancer…that day, she didn’t know when she fell asleep, if she would wake up the next morning. It would always break my heart to know there were kids and their families that are going through a cancer diagnosis. Then October 19, 2019, I saw a huge lump on my son Brady’s neck. We went to the ER, they took a CT scan and said they weren’t sure what it was or what it was attached to, but it was pressing against his trachea closing his windpipe. The doctors said he needed to go to a hospital that specialized in this, so they put him on a helicopter and sent him to Philadelphia - to Children’s Hospital of Philadelphia.
That night Brady would not go to sleep. He kept trying to keep me awake, either by talking or watching tv (you know…the one more show type of thing!). I finally crashed. Brady did too at about 4:30 am. The next day, we met Brady’s Child Life Specialist, and she took him down to get his biopsy done. Child Life is awesome. They hang out with the patient to make them less nervous. While he was with her, Brady told her the reason he did not want to fall asleep the night before was because he was afraid he would not wake up. He told me and Doug (his father) this, and we all cried together! We told him that we were going to get through whatever came at us, because we always get through things as a family. That did not ease Brady’s fears one bit. Nothing I have said or done since has eased Brady’s fears!!
Brady and I were at CHOP for 21 days. Doug would travel back and forth every couple of days to visit us. Brady and I missed being in his sister’s wedding, his nephew’s sleep over, and a Halloween party at his brother’s. The doctors did not want him to leave the pediatric intensive care unit in case his throat closed. On November 2nd, the oncologists came back with the news that the mass on Brady’s thyroid was NTRK fusion spindle cell neoplasm, a rare form of cancer. His doctor asked us if we wanted to put him in a study for a drug called Larotrectinib. We told them of course, especially if it helps other children/families. Brady’s tumor has shrunk a lot (THANK GOD) since first taking the medication, so his doctors did an MRI to see if they can surgically remove the tumor. However, they found that the tumor could be in his voice muscle and/or his esophagus, making it too dangerous. He will be on his medication for 2 years to make sure it continues to shrink and possibly disappear. Brady will be monitored for the next 5 years for the study.
The day a doctor comes in and says your child has cancer, your life completely changes from that day on. You are no longer worrying about trivial things.You worry how you are going to pay the bills at home. Taking 21 days off work to be with your child at the hospital, as well as time off for monthly appointments, traveling two hours each way to the hospital (for CT scans, bloodwork, medication), gas money, tolls for the turnpike…they all add up very quickly! I was searching the internet to see what kind of support I could get mentally for us as a family. In the meantime, I found the Pediatric Cancer Foundation of the Lehigh Valley. PCFLV is a foundation to help families in the area who have a child with cancer. They were able to provide us with gas/grocery cards and EZ-Pass cards.PCFLV becomes part of your family. They give support not only to your child that has cancer, but your whole family.PCFLV receives donations to help families to get through tough times of cancer. They provide families gift cards, tickets to see Iron Pigs baseball games, a mom’s/dad’s day out to do an event, or even a meal from a local restaurant.We are so grateful for the support that PCFLV has given us and all they continue to do, they are a GODSEND!!PLEASE consider supporting the Pediatric Foundation of the Lehigh Valley to help other families in our community that are going through the same unknown with this horrible disease of childhood cancer! A lot of cancer patients need blood donations and platelets, so please also consider donating platelets/whole blood to Miller Keystone Blood Center!
Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip