September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
What are the most monumental, awful, terrible, life changing words you could hear..."it is malignant." Those are words that only other people hear. When you ever heard stories of others or saw the sad faces of children on St. Jude's or Children's Hospital of Philadelphia commercials, your heart would break. You may even donate money, but you would continue watching your TV show and most likely not give it another thought until another commercial airs. You never realize how many commercials are on TV for people struggling with cancer. Even on the radio I feel like so many advertisements are for walks or fundraisers. When your child has cancer, it suddenly becomes your whole entire world. When you try to find solace in something, it still seems to slap you in the face in some way. As a parent, you have two options. Option one is to sit in the corner or lay in bed, and rock and cry. It is so easy to have pity parties on a daily basis. The other option is to stand up, wipe your tears, put a smile on your face and say, "okay, we've got this."
With all that said, my son, Bryce, was diagnosed on April 20, 2016 with GIST cancer. Only three days before his 13th birthday a strange mass was felt by his pediatrician. This was after two months of him "seeming" strange. As a mom, I kept trying to figure out what was going on. It was all small signs. A temperature regularly of 99 to 100 degrees. A nagging, dry cough that would not quit. Fatigue. Lowered appetite. There were tests for Whooping Cough. Blood work for mono. Antibiotics given. All futile attempts. Finally, in April, the mass was large enough to be physically felt during an exam. We were sent immediately to the hospital for an ultrasound. My husband left work to meet us there, and for that, I will always be grateful. He still says that his gut told him to leave work and be there. As the tech clicked and clicked and clicked her button, we started to hold our breath. She finally left the room and asked us to wait. Upon return, she was holding a phone and asked for me to talk to the doctor on the other line. There were three masses found and we needed to be admitted immediately. As Chris and I took turns sitting in the hallway collecting ourselves, we finally pulled it together. We made calls to figure out care for out other kids. As our best friend rushed to the house to be with Arianna and Cameron and our dogs, we were able to concentrate on Bryce.
After CAT scans, bloodwork, and meetings, it was determined that surgery was the next step. Fast forward to the day before his 13th birthday and that is when his surgery took place. We sat in the waiting room and after two hours, we sat with the doctor who told us that the tumor was too angry and that she could only take a sample without causing further damage. At this point, my sister arrived from North Carolina to sit with us and hold our hands. My mom and step-dad were making plans to travel to Pennsylvania ASAP. We put on our imaginary happy masks and pushed our shoulders back and sat with Bryce as he awoke. Recovery was difficult but he made it through.
The incredibly strange part? The day after surgery, his best friend's sister and our family friends, found that their daughter was being diagnosed with brain cancer. As we were admitted, that same day, they were discharged. The way our paths were crossing was gut wrenching. To this day, it absolutely amazes me that we are on this journey together. Chris can go to PCFLV dad events with his best friend.
Fast forward a little as we were waiting on more results. We did find that Bryce has a very rare type of cancer. GIST does not respond to chemo or radiation. His next surgery at CHOP allowed for an amazing, life-saving doctor, to remove a quarter of his stomach, reroute some organs, take out some non-essential parts of his insides and most of his tumor! Remaining though are lesions and three tumors.
Over the past year, we have cried a lot, laughed a lot and enjoyed life as much as possible. Bryce has been a part of studies and was in a clinic at the National Institute of Health. He has been granted so many gifts such as a trip to Hawaii with Dream Come True, a fishing trip with MOPA (Moment of Peace Adventures), local activities and local support. We have learned more about the community that surrounds us and have met the most amazing people. As so many family members and friends have decided that being in our company or talking to us is too much for them to handle and have cut ties, the amount of people that have stepped up to help and support us is overwhelming at times.
Today we continue to battle. We have recently discovered that his stable tumors have begun to grow again and there is concern of lymph nodes now being involved. We are now left with very limited options since this cancer is stubborn and incredibly new. Just since 2008 has this been even identified. For the rest of Bryce's life, he will be on a 3-month cycle of scans. He will rotate between an abdominal/pelvic scan and then a full body. He will also have a PET/MRI once a year. All his treatment is between CHOP and the Boston Children's Hospital.
I have gone from being a social worker that has advocated for other children, to being a social worker that advocates for my own. Anyone that has a sick child knows that just making the calls, setting up the appointments, dealing with insurance companies and fighting over bills, is overwhelming. Adding to the pot is research. I research almost every single day. Our doctors are amazing as they listen to every thought and question on a regular basis. Our primary oncologist is usually available 7 days a week to talk through any of my insecurities or exciting thoughts. Working a full-time job is no longer an option. I now work two part-time jobs. One is from home and the other is extremely flexible. My husband, Chris, now bears the weight of providing for the five of us. As we trim the fat of bills where we can, we continue to make our primary concern the happiness of our three kids and to keep life as normal as possible for them.
Through this journey, we did discover that GIST is something that can be hereditary. After genetic testing, it was found that Chris has the same gene that causes the tumors and cancer. Our 15-year-old daughter, Arianna, has also been diagnosed. The diagnosis is called Hereditary Paraganglioma Syndrome and they now undergo regular monitoring via bloodwork and scans. This is just one more element to add to our story.
We are lucky though. We have each other. We have a roof over our heads and cars that start when we turn our keys. We have people that surround us and love us unconditionally. We have amazing doctors and so many scientists researching and trying to figure out how to "cure" this awful disease that is living in my son. We will continue to fight and we will continue to enjoy as much of life and push through each day. As Bryce pushes every day though pain and exhaustion and abdominal issues that cause him to not gain weight and struggling to eat every single day, he amazes me constantly. Bryce is my hero and to see his strength as he deals with being a teenager, starting high school and juggling his world of cancer, he does it.
There is not a day that will ever go by that I am not grateful for the support of PCFLV and all the amazing organizations and people in the world. Dealing with a cancer diagnosis really puts things into perspective and really slows you down to try and not take life for granted. I now encourage every single parent to kiss and hug their child every single day. I encourage parents to say "I love you" to their child and to not live life with regrets but to live life to the fullest.
Thank you for allowing me to share our story. Although it is sometimes hard to do, it is important for people to put a face to the disease and teach others about what this world is like for so many.
-written by Bryce's mom, Tiffany