Lucy Matyisin
Lucy Matyisin was born on November 27, 2016 to mom Hayley and dad Jeffery, landing perfectly in their family as the middle daughter between sisters Brynn and Anna.
Lucy is incredibly smart and athletic, and a kid that things always seemed to come easy to. Her mom describes her as their family's tough cookie (in a good way). She loves gymnastics and was about to make “team” before she had to stop after being diagnosed but she still loves to flip around!
Lucy adores having an older and younger sister ( her parents always told her she was lucky to have both!), gymnastics, driving around her power wheels which her dad made go extra fast in the back yard, being crazy with her friends, elephants, pickles, music, dancing (when nobody is watching), Disney world (she can tell you all the best rides), and movie nights at home in the living room with lots of snacks.
Lucy's family feels very lucky to have a great support system including grandparents, siblings, aunts, uncles, cousins, and lots of friends who feel like family.
Diagnosis
The first symptoms Lucy's parents noticed was that when Lucy smiled she could only lift one side, but it was such an unexpected thing, her parents initially just thought she was being silly. On her Communion day, she stood in the front of the church so happy and proud and her smile was still only half. That’s when they knew she wasn’t joking around. They took her to the hospital which they recommend she see a neurologist, and he knew immediately what it was. That same night she had an MRI confirming a tumor, with a biopsy a few days later confirming DIPG. Her parents were stunned and had never heard of DIPG before and honestly did not want to hear the prognosis at first. They took Lucy to Sloan Kettering for a second opinion with the support of their home hospital in New Jersey. Dr Dunkel, recommended the CarTCell clinical trial. Lucy completed her initial round of radiation and steroids, which changed her so much, but she tolerated that treatment well. After completing radiation, her family embarked on a journey to Texas Children’s in Houston for their second infusion on the Car T Cell trial with hope, prayers and positivity in their hearts.
Hope, prayer and positivity is the foundation for the Matyisin family as they continue to press forward, going any distance necessary to find Lucy the. best possible care. The Archer Foundation is proud to stand beside this precious family as they hold fast to their faith and unending hope for a lifetime of flips, movie nights and family memories.
