December 1st, 2024 changed our lives forever.  We lost our sweet Kylie at the age of 16 months to AT/RT (brain cancer).  Kylie fought fiercely and bravely for 14 months.  Last September we found out the devastating news that her cancer returned.  We decided on a clinical trial of immunotherapy. Despite holding the highest hopes this would be the answer, we found out on October 31st, after only one cycle of immunotherapy, that her cancer had rapidly spread throughout her brain.  There were no more options left.  After begging and pleading for options that didn’t exist, we decided to bring Kylie home that day.  She spent the next 5 weeks in the comfort of her home, knowing nothing but love, being held every second, and being told how amazing she was and how proud we were of her.

Losing Kylie has been something that we truly can’t describe in words.  Kylie was just the most beautiful soul.  A true angel on Earth.  Despite everything she went through, she smiled, laughed, and gave us the most beautiful memories with her.  Some days it feels like it’s been so long without her, but other days it feels like it was just yesterday that we were all laughing, smiling, and playing together.  We’ve learned very quickly that grief doesn’t have a timeline.  There is no guideline to how to handle such a tremendous loss.  We have learned to give ourselves grace.  We have learned that we each process differently although we are grieving the same loss.  We have learned that time will not heal.  You hear a lot that time will heal, but I don’t know that that applies to losing a child.  I think as time goes on you just learn how to keep going without them.  Knowing we need to continue on without her and that we somehow will seems quite impossible many days.

We have found comfort in growing our faith during this journey of grief.  Kylie had a beautiful memorial service at Grace Church in Bethlehem.  The minute we walked into the church, we felt comfort and a sense of peace.  Since then, we have consistently attended Sunday services.  Leaning into our faith really is the only thing that keeps us going on the hardest days.  We do believe that we will be with Kylie again, and that we will live an eternal life with her in Heaven.  On the darkest days, we hold on to the fact that our time here is just a glimpse of forever.  Kylie Sage, we can’t wait to be with you again.  Keep sending us all of your beautiful signs.  We miss you and love you.

We promised Kylie that we would continue to fight in her honor.  We are in the process of creating a foundation in honor of Kylie that will help other families going through the unimaginable journey of childhood cancer.  We also plan to fund research, specifically towards AT/RT, as there is so much more to learn.  In May, we held the Birdies for Kylie Memorial Golf Tournament and raised $16,395.  It was truly incredible and we can’t wait to hold more events.  We pray for a future that holds research for better treatment options, effective treatments and the ultimate goal that one day there will be a cure and no child will lose their life to cancer.

Since the beginning of Kylie’s journey, PCFLV has been a constant support.  They supported us while we were inpatient at CHOP, during outpatient treatment, help with her memorial service and continued support to our family as we navigate life after loss.  They have provided our older daughter with so many fun activities and ways to connect with other children who have also been through so much.  They provide our family with fun events, ways to connect to other families, and ways to continue to find joy amidst sadness.  We feel incredibly lucky to have such an amazing organization with the most amazing team here with us every step of the way.  Thank you PCFLV for everything you’ve done and continue to do for our family and so many others!

Please continue to spread awareness for childhood cancer.  Those of us that have heard the devastating words, “Your child has cancer,” know that this is not so rare.  Our children deserve to live long, full lives.  Kylie Sage, because of your fight, we will forever fight!

Written by Tia and Mike, Kylie’s parents

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