Connor loves to play with nerf guns, xbox, all things dinosaurs, and military type things. Seeing us act silly makes him laugh, along with us just all playing together. He is very intelligent and inquisitive. He understands most of what is happening to him, just not necessarily the urgency of it all.
In May of 2016 he was diagnosed with Desmoplastic Small Round Cell Tumor. He had no symptoms prior to his diagnosis. Desmoplastic small round cell tumor is a tumor that begins in the pelvis or abdomen and is usually very aggressive. It is a very rare cancer and is usually only diagnosed in 20 children each year. It is often misdiagnosed as other types of cancer and this can lead to poor outcomes. Connor has had a tumor resection surgery and seven rounds of chemotherapy. He just had HIPEc surgery at MD Anderson and we are hopeful this will help rid his body of the cancer.
Connor is a fun loving kid who has been able to maintain his personality throughout much of his treatment. He cannot wait to be able to go outside again and play with others.
Lilly loves her brother, Ethan, and her step-siblings, Allison and Grant. She takes dance and gymnastics lessons and loves them. She loves to dance and sing. She has a lot of baby dolls and takes great care of them. She also gives all of us and her toys check ups very often. She is beautiful, smart, funny, kind, caring, sensitive, tough, brave, awe-inspiring, fun, loving……. She is amazing!
Lilly was diagnosed with clear cell sarcoma of the kidney on January 22, 2014 at the age of 18 months. Before her diagnosis, her belly looked swollen and she had pain when urinating. Lilly had surgery on January 27, 2014 to remove a 2 pound tumor and her right kidney. She then had 6 radiation treatments. Chemo lasted 27 weeks. She has been cancer free for two years.
Our main struggle, as is common with most cancer families, is financial. Our life stopped, but the bills didn’t. Money is tight and our anxiety is high, but we don’t take anything for granted anymore. We know life is short and can change in an instant.
Thomas is an awesome, easy going, loving, friendly, kind, and considerate kid. He loves paw patrol, super heroes, Star Wars, and Harry Potter. His favorite color is blue.
In the spring of this year, he was waking up constantly with headaches. After a trip to the doctor, we discovered he had desmoplastic round cell tumor in the brain. DSRCTs are usually found in the abdomen and is a very rare soft tissue sarcoma. It is usually diagnosed in only 20 pediatric patients a year. Thomas’ prognosis is unknown. This tumor is not normal found in the brain, but it is normally is very aggressive. He has been through two rounds of chemotherapy and 31 proton therapy treatment sessions. He has started a new chemo cycle and will continue on it for six more rounds.
It’s impossible to explain how cancer has affected our family; other than to say that if feels like our world has stopped, but everyone else’s keeps turning. We have a lot less time together and spend a lot more time at home. Thomas has been missing school since diagnosis. He won’t be able to return until after he finishes chemotherapy.
