DAYTON, Ohio – “Cancer is not cancelled” has been the battle cry of the Leukemia & Lymphoma Society’s Dayton Light The Night as it remained steadfast to the mission of fighting blood cancer despite the challenges of the COVID-19 pandemic.
One adjustment was to make Light The Night a virtual event to take place Thursday, Oct. 15 at 7 p.m. Community Blood Center/Community Tissue Services is a presenting sponsor. Learn how you can support LLS at https://www.lightthenight.org/events/dayton.
Dayton Light The Night 2020 Honored Hero Olivia Crinion is a five-year old from Kettering who was excited to return to in-person kindergarten this fall. She goes by “Liv”, a nickname that captures perfectly a little girl determined to live after being diagnosed with B-Cell acute lymphoblastic leukemia.
Liv’s mom Deme Crinion shared some of the heartbreak and joy of their family’s journey.
“Liv was diagnosed at four years old,” said Deme. “Her annual well-child check-up was coming up in March and I had been making a mental list of things I wanted to bring up with her provider. We had noticed some unusual bruising all up and down her shins… kind of like you would see during summer when kids are out climbing and playing. But it was still winter, and she hadn’t been that active.
She also had a virus a week prior to the appointment that left her very lethargic. Even after “recovering” she didn’t really have the desire to play much. We also noticed on separate occasions that when sitting on our laps her heart was racing as though she’d been running around the house, but she hadn’t been doing anything active.
I brought all of this up with Liv’s pediatrician who also noticed Liv looked quite pale. She ordered some precautionary blood work to check for anemia and at the last minute decided to run a full blood panel just to be safe. Just a couple hours later and we were being admitted to Dayton Children’s Hospital.”
Can you talk about those early days of diagnosis and treatment?
“To be honest, those first days and even weeks were such a blur,” said Deme. “So much information was coming at us at once and our world had been flipped upside down in an instant. It was so hard to see her little body change so quickly during one of the more intense phases of treatment and to feel so helpless as a parent.
But Liv is a little fighter and there is a reason God made this girl with an equal dose of sweet and SPUNK. She has been so resilient throughout this road… every nurse commented on what an incredible patient she is and how brave she is during procedures, not crying or complaining.
She just seems to have an understanding that this is what needs to be done for her to get better. We count that among many of the graces that we’ve experienced over the past year and a half. Our faith and incredible community have sustained us from day one and we are so grateful.
Tell us about your family and some of the people who have helped you through this.
“One of the hardest things during those first days, was that all of our extended family live across the country and it was really difficult not having them physically here with us. During a time, when it would have been easy to feel alone, we were completely blown away and literally carried by our local church and school community and by incredible friends that are like family to us here.
They covered us in prayer, sat with us in the hospital, delivered meals, swooped in to help with our other children and loved us in ways we didn’t even know we needed. We are just beyond blessed by the community we have both here and out of state.”
How is Liv’s treatment is going? How has she kept her spirits up?
“Liv has moved into the maintenance phase of treatment and is doing really well! We are so grateful that her body has responded so well. She still has to go in for monthly blood counts, takes chemo meds daily at home and receives a quarterly chemo infusion and lumbar puncture, but overall, she’s able to be a “normal” kid most of the time.
On days she’s not feeling great we put on our favorite movie, do puzzles, or bake something yummy in the kitchen together. But most days she’s doing well, growing like a weed and will hopefully been finished with treatment next May.”
How has LLS has helped you through this? Has she enjoyed her role as an Honored Hero? ?
“Prior to COVID Liv was thankfully able to attend both kick-off events in person and the ‘Student of the Year’ finale. She absolutely loved getting dressed up and going to the “fancy” events and talking with this new family.
The LLS team made her and our entire family feel so special. We will always be thankful for their support and they are one of the first organizations we can now point to when we meet families facing the same diagnosis.”