Kylie

From the moment Kylie entered this world we knew she was incredibly 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 11 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 an MRI showed a large tumor in her brain. Within hours, we were flown to Children's Hospital of Philadelphia (CHOP) and admitted to the PICU. We had no idea the journey that was about to begin. Kylie spent 6 weeks in the PICU after arriving at CHOP. Those 6 weeks were incredibly scary and challenging. She underwent an emergency surgery to place an EVD to drain cerebral spinal fluid, two 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, MRIs, 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. Unfortunately, it had also metastasized to her spine. Once she was transferred to the oncology floor, she began an intense chemotherapy regimen, had two more surgeries related to her shunt, a surgery to place a G-tube, and again countless MRIs, CT scans, and scares. Kylie spent 3 more months being 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 finished cycle 5 of 12 of maintenance chemotherapy before we began noticing some changes. Unfortunately, she was having another shunt failure. This shunt failure led to surgery to fix it and then another surgery the next day to fix it again. It failed twice in two days. Kylie began cycle 6 of maintenance chemotherapy days after the surgery. Once she completed cycle 6, she was due for an MRI. This MRI revealed devastating results. An area of concern, which had seemed to wax and wane over time and was considered a possible lingering infection, had grown significantly. We discussed a new type of imaging during an MRI that could potentially determine if this was an infection or a tumor, rather than performing a biopsy. In September 2024, we received the official news that Kylie had relapsed. The area of concern was a tumor.

At this point, we had to make some very tough decisions. There are limited options for relapsed AT/RT, and even with those limited options, we became further restricted because Kylie was unable to receive any therapy requiring an Ommaya port due to a lack of appropriate flow in her brain. She also did not qualify for radiation due to her young age and the leptomeningeal spread that was occurring. We chose a clinical trial for immunotherapy. Despite her relapse, we truly remained hopeful that Kylie would overcome this again. Ignoring the statistics, we remained positive. Kylie only completed one cycle of immunotherapy before we noticed continuous rapid eye movements. We took her to the emergency room, and they performed an EEG to rule out seizures. They also did a CT scan, which showed results comparable to her last CT scan. We were hopeful that perhaps this was just a change due to a change in treatments. Days before the start of cycle two of immunotherapy, Kylie started showing signs of shunt failure. Little did we know at the time, her tumor was spreading rapidly. We were flown to CHOP from our local hospital for immediate surgery to place a new shunt on the other side. At that time, we met with her team and discussed why this might be happening, which was tumor growth. Again, we knew we were in our first cycle of immunotherapy, and unfortunately, things could get worse before they got better, so we remained hopeful.

The next day, our world came crashing down again. After Kylie's shunt surgery, she had an MRI that revealed significant and rapid tumor growth. Her tumors had grown significantly, new tumors had appeared, and there was leptomeningeal spread happening all over. We were pulled into a room and told that, at that time, we had no treatments left. We were told that, although they didn't know how much time we had left, we could expect weeks. We begged and pleaded for options that didn't exist. We would lose our little girl in weeks. How would we tell her big sister? How would we go on without her? We had already bought her little Christmas outfits... our world was crashing down... again.

We made the decision to bring Kylie home, where she belonged. Over the next four weeks, Kylie spent every day and every second in our arms. We made as many memories as we could, even though they mostly consisted of just being together at home. We worked with hospice to keep her comfortable. She truly was peaceful and comfortable at home, and we find comfort in knowing she was here with us those last several weeks. We questioned a lot over those four weeks. We continued to search for options that didn't exist and begged for a miracle. On December 1, 2024, Kylie Sage gained her angel wings in her mommy's arms, surrounded by her daddy, big sister, and puppy. That moment changed our lives forever.

Kylie bravely and fiercely battled brain cancer for 14 of the almost 17 months she was here with us. Kylie was a true angel on Earth. Despite a difficult journey, she continued to meet every obstacle with a contagious smile and a personality that could light up a room. In her short time on Earth, she touched so many lives. She was the missing puzzle piece that completed our family. She was absolutely adored by her mommy, daddy, big sister, grandparents, and many other family and friends who supported us during her battle with cancer. We will forever miss her laughter, smile, bright light, and presence.

In Kylie's short time on Earth, she lived a full life. Despite months of living at CHOP and many hospital days spent getting infusions, surgeries, scans, etc., Kylie truly loved life. Looking through photos and videos of Kylie, she always had a smile on her face and the best giggle you'd ever want to hear. Despite fighting brain cancer, she was able to have a year of "firsts" and even some "seconds." Some of Kylie's adventures included going to the pumpkin patch, a beach vacation, trick-or-treating, trips to Dorney Park, Iron Pigs games, ice cream dates with her family, playing in the pool in the summer, parades, celebrating her first birthday, going to her big sister's dance recital and many softball games, lots of walks with her family and puppy, and many more! Kylie loved dancing around the house with mommy every day, bath time with daddy where she loved to kick, splash, and soak him, and hanging out with her big sister, just watching her in awe and laughing and giggling at everything she did. Even in the last few weeks with us, we had the opportunity to get beautiful family photos, go to the tree farm and pick out our Christmas tree, and Kylie and her sister got to meet Santa Claus. Kylie worked so hard in all of her therapies, including PT, OT, and feeding therapy, which she had daily. She overcame so many obstacles and met many goals despite the difficult journey she was given. Kylie truly brought her family so much peace and joy. She was always ready for anything with her easy going spirit. A life without Kylie feels impossible, but we know she is smiling down on us, dancing in heaven.

Kylie's story is not over. We will continue to honor her in every way we can. We will be starting the Kylie Sage Foundation in honor of our sweet angel. We plan to support children and families going through this unimaginable journey, as well as support research specifically for AT/RT. Kylie, thank you for teaching us so much in your short time with us. We will all be together again. We love you and miss you incredibly much every second of every day.

Thank you to Kylie's mom, Tia, for bravely sharing her ATRT journey. 

If you would like to donate to ATRT research in loving memory of Kylie, please visit - https://hope4atrt.churchcenter.com/giving/to/in-loving-memory-of-kylie-schneider