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Tillery is sassy, full of life and loves being around people. Her brother Luke is her best friend and they love being together. Tillery is very strong-willed and independent, which are good traits for a fighter.
Tillery was a little slow developmentally and we just thought she was a little behind. After about eight to nine months, she started regressing physically. She never tried to pull up to standing, started having trouble crawling and even sitting unassisted. We went to three different pediatricians looking for answers and on the 3rd try the doctor asked, “Has anyone ever talked to you about the size of her head?” We were finally getting somewhere! He referred us to a variety of specialists. Before we could ever make it to any of those appointments, an MRI revealed a large brain tumor. We left Chattanooga the next day to travel to Cincinnati Children's for treatment. Within 36 hours of diagnosis, Tillery was taken into a 15-hour surgery to begin the long road toward getting better.
Tillery has had 13 surgeries (#14 will be in early 2017). She's had 64 doses of chemotherapy, which ended December 2014. Her tumor cannot fully be removed so she will always be followed by oncology and neurosurgery. We are excited to be close to entering the next phase, as we’ll soon be done with planned treatments and just be in a monitoring phase.
ALSF has been a huge blessing to us. We traveled six hours from home for treatment. We had to wait three weeks to get into the Ronald McDonald House. ALSF paid for nights in hotels while we were in between hospital stays, before we could get a room at the RMH. In 2014, ALSF paid for a hotel room near the hospital when we were thinking of going back home. That night in the hotel room, our daughter woke up screaming and we had to rush her to the ER. She had a very serious blood clot in her brain. That hotel room saved our daughter. Being that close to the hospital made a huge difference in her life.
We hope that Tillery's story gives others hope. We hope for a cure in her lifetime and for better and gentler treatment options. Our biggest hope is in Jesus, who has already saved us all. It is in Him that we put our trust and we know He will take care of her and us as we travel through this cancer journey.
Tillery has been amazing to watch. She has become the most outgoing and fun kid. She loves life and lives it to the fullest. She has not let all of the hard and painful parts of her life dictate how she will live. She sees the positives.
We want others, who may have recently received a cancer diagnosis, to know that it's hard and plans are ever changing but never give up hope. Hope with all you have, through all you faith! We have been through times when there wasn't a lot of good news coming our way, but we always had hope and that is what has carried us through it all!
When the whirlwind died down, we wanted to give back to the organizations that helped us. We held a lemonade stand and in research for the lemonade stand, we learned about all of the other great things ALSF does. We knew we wanted to have a continued connection to them, especially to focus fundraising on research efforts to find a better treatment for kids like our daughter. We’ve also participated in Alex’s Million Mile. Since August 2015, we’ve raised almost $10,000.
Information provided by Alana Phillips, Tillery’s mother
Updated December 2016
Read more about Tillery’s SuperSib Luke.
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