From the moment Kylie entered this world, we knew she was something special.  Kylie has such a sweet soul.  She immediately stole the hearts of mom, dad and big sister, Brynlee, along with everyone else she met.   

In September 2023, at only eleven weeks-old, Kylie was diagnosed with a brain tumor.  After one day of vomiting, we took her to the emergency room.  We were sure she had a stomach bug and were advised to take her there to make sure she was not dehydrated.  After various tests, we spent the night at the hospital for monitoring and fluids. The next day, they continued to run tests.  Our world came crashing down when a head ultrasound showed a large tumor.  Within hours, we were flown to Children’s Hospital of Philadelphia (CHOP) and admitted to the pediatric intensive care unit (PICU).  We had no idea the journey that was about to begin. 

Kylie spent six weeks in the PICU when arriving at CHOP.  Those six weeks were incredibly scary and challenging.  She underwent an emergency surgery to place an EVD (external ventricular drain) to drain cerebral spinal fluid, 2 major brain surgeries to remove the brain tumor, a surgery to place a shunt, a surgery to place a Broviac for chemotherapy treatment, countless CT scans, MRI's, lumbar punctures and much more.  She also battled a fungal infection in her brain which caused her chemotherapy to be delayed. 

During her stay in the PICU we received the results of her tumor and found that Kylie was diagnosed with AT/RT, a rare and aggressive brain cancer.  Unfortunately, it had also metastasized to her spine. Once she was transferred to the oncology floor, she began an intense chemotherapy regimen, had 2 more surgeries related to her shunt, a surgery to place a G-tube and again countless MRI's, CT scans and scares.  Kylie spent 3 more months inpatient at CHOP with only a handful of days at home in between cycles.  The 4 months that we lived at CHOP were incredibly difficult for us.  We missed being home as a family and we missed our older daughter.  We spent our weekends taking turns sleeping at the Ronald McDonald house so we could be together down at CHOP every weekend as a family. 

Finally, we got the chance to come home to complete cycles 5 and 6 of induction chemotherapy.  We made the trip to CHOP 4 days in a row each month for treatment.  Once Kylie completed her induction cycles, she moved on to maintenance chemotherapy.  She was also able to have a surgery to place a port which was not possible at the start of treatment because she was too little.  Kylie is currently in her 5th cycle of maintenance chemotherapy.  She has 12 cycles to complete.  After those are completed, we will discuss further what we may need to do.  Kylie has been receiving scans every 2 months and sometimes sooner.  She was recently approved to move to scans every 3 months, since she received a stable scan.  

On July 7th, Kylie turned 1 year old.  She is our little warrior.  She continues to show us determination, resilience, and a fight to be here with us.  Her most recent scan has shown no new tumors, no recurrence in her original tumor area, and stable scans of the spine in which there appears to be no active tumors.  Her spinal fluid has remained free of cancerous cells.  Kylie bug is such a happy, sweet, silly girl.  Her favorite person is, by far, her big sister, Brynlee.  She loves to watch her puppy run around the house, loves to learn new things, and has really grown such a big personality.  She receives daily therapies Monday through Friday for PT, OT and feeding therapy.  She continues to meet her goals and milestones in all areas.  We have faced so much on this journey already.  Kylie has faced the unimaginable. Although the future is unknown and scary, we know we are not alone.  We are thankful to be surrounded and supported by the best family, friends, and community.  We are thankful to PCFLV for continuing to support us and let us know we are not alone.  We will continue to fight every single day.  Kylie deserves a life full of love and happiness, and we will never give up trying to give her just that.  Keep fighting, Kylie Sage. We love you endlessly!

Written by Kylie’s mom, Tia

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