9/21 – Lillian

Lillian’s story is the most heartbreaking story of a survivor I have ever heard. We were able to hear her parents tell pieces of her story over breakfast at the beach and even in a group of seasoned cancer parents, their story had us all in tears. Read the words from Lillian’s mother about her amazing, miracle child.

Our Lillian, otherwise known as "Toots", has stage 4 neuroblastoma. She is the youngest of our 4 children. We were so certain we were having a healthy baby after many detailed ultrasounds. As soon as she was born, we knew something wasn't right. She had blanched spots in her skin. The second day, her liver had noticeably grown in 24 hours. The third day, scans started and a diagnosis of internal hemangioma. Fast forward 10 days. Lillian had been on blood pressure medicines and steroids to slow the heart being robbed of blood as the hemangiomas continued to grow. By 10 days old, her stomach was extremely distended and her liver protruding even on her back. At 12 days old the word "cancer" entered into our family and on Mother's Day 2015, I held my 2 week old newborn baby girl as chemo attempted to destroy the cancer that had taken over her body. The main tumor was on her right adrenal gland and had spread to her liver, bones, and skin. However, the chemo did nothing. At 4 weeks old we were advised that she needed emergency radiation treatments to attempt to stop the cancer in order to make it to the next eligible chemo treatment just a week later. Radiation only fueled the fire and gave us many nasty side effects that effect Lillian today. The chemo didn't work nor the radiation. The treatments were stopped until doctors could grasp the situation while my baby lied in ICU dying. She had daily blood transfusions, a feeding tube, medicines, continuous pain pump, oxygen, and many many medicines to try to keep her stabilized. We needed healing but God wanted to make a miracle. Nothing had worked. Our prayer changed from healing to begging for a miracle to heal our newborn and as a promise in return we would use her for His glory. Our prayer was heard.

While in treatment Lillian's tumor thankfully receded. We continued with the suggested salvage chemo that the doctors described as the "big guns in a small dose." Lillian is now 2 and full of life. We have 4 therapies a week to keep her development on track as more than likely side effects from treatment.

Recent times have been challenging as she has been choking while drinking. She has 4 therapies per week to help with speech, swallowing, occupational therapy, and developmental. She is absolutely amazing and watching her play like a typical 2 year old gives us son much hope as well as others. She is full of personality and spunk. As Lillian's parents, we are passionate about research to find safer chemos and treatments. Our 2 month old had to have adult chemos when they started salvage chemos because there isn't enough research on pediatric cancer treatments. While Lillian is done with chemo now, her doctors are not using the terms “NED” or “remission” because she still has spots on her liver that they are monitoring.

#Lillian #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

To support childhood cancer research in honor of kids like Lillian, make a donation to our team (TIL Foundation) with Alex’s Lemonade Stand Foundation. https://www.alexslemonade.org/mypage/1314958