Superhero Spotlight: Lillie

Written on May 18, 2021

May is Brain Tumor Awareness Month. Children’s Cancer Partners serves 94 children battling brain cancer. Learn more here. One of Children’s Cancer Partners brain cancer Superheroes, Lillie was diagnosed two years ago. While Lillie still fights the childhood cancer battle, her story and “legend” stays strong. Below is a excerpt from an post on April 26, 2021 that is on a Facebook page managed by her mom called The Legendary Lillie.

Lillie at her Luau

“Two Years

Today [April 26, 2021] is two years since Lillie’s cancer diagnosis. I remember it like yesterday. Lillie had had an MRI the night before, and my phone rang about 9am. I’d held a staff meeting at 8am and had just left work. I answered the phone and they told me that there was something suspicious on her scan and that we had an appointment with the St Jude affiliate clinic at 2pm. I hung up, pulled to the side of the road and just screamed no, no, no over and over again. The tears were streaming down my face. I couldn’t believe what I’d just heard. After some time I pulled myself together and started making phone calls. Will had flown to NYC early that morning so I had to track him down. I called Will’s youngest brother, a calm rock in a roaring storm. He’s a physician, and even though he was in Texas I knew he’d help me get through the immediate disaster. It’s funny. We barely see him and his family because they live on the other side of the country (and sometimes world…he’s in the Army) but he was the first person I thought of. True to form he was calm. I was hyperventilating and could barely speak. I remember him slowly asking, “Have you been in a car accident?” as he was trying to decipher why his sister in law was calling him hysterically sobbing at 6am his time. He helped me get through those first critical moments in a way that no one could with his gentle demeanor and organized mind.

A few hours later Will and I sat in the clinic as a team of doctors told us that our daughter had, most likely, only 9 months to live. That’s the average survival rate with Lillie’s type of brain tumor. I remember wondering if she’d make it to Christmas. The next days were a heartbreaking blur of tears and disbelief as Lillie continued to worsen right before our eyes. We reached out for a second opinion at Duke, and while they confirmed the diagnosis and prognosis we loved the team we met there and started looking into the clinical trials that might hold hope.

It’s hard to believe that Lillie has survived 24 months. Fewer than 10% of children with her tumor do. We are so grateful. I want to say that it shows what a fighter she is, or how hard we’ve worked to give her the best care in the world or that God has answered our prayers, but the simple truth is this: other children fight just as hard, pray and are prayed for just as hard, are loved just as much, and receive just as cutting edge care and they die as early as 3 months after diagnosis. This tumor is cruel and unforgiving.

We’re just grateful that Lillie’s here. She’s happy the majority of time and finds pleasure in being with family and friends, being read to, watching TV and doing crafts. She’s actually starting to see some benefits from her third radiation and is stronger each day which makes her very happy. We don’t think she’ll ever walk again, but she’s regained some movement in her right leg which is encouraging. We know this is just a reprieve, but more good times are such a gift. I’ve been thinking a lot about purpose and what we accomplish during our lives. Lillie’s been struggling with a sense of purpose now that she’s not in school and she’s too tired to do much outside the home. This situation has led us all to ask ourselves that question. When you can’t work, or go visit places, or speak clearly, or write/draw and you know you have only a little while to live what do you find meaning in? Lillie’s been teaching us and we’ve been figuring it out together.

So today is a special occasion, but doesn’t seem like one to celebrate, and yet we did anyway. Yesterday we held a luau for Lillie. We kept it small: just us, my parents, and Will’s brother, wife and daughter. I prepared a Hawaiian feast (I stopped short of burying a whole pig in a pit, but we did have food for 50 not 10). We had pineapple bacon chicken wings, pina colada cupcakes, and even that Hawaiian staple: SPAM. I insisted everyone tried it (honestly it’s pretty good when it’s fried up and toasty) with sides of mac salad and rice. Will and I lived in Hawaii for almost 4 years right after we were married so I wanted to make sure we did it right. It was a really fun evening. We had a great time and made a good memory out of a day which could just serve to remind us the time is running out. That’s what living with death does. It makes us choose to live while we can. So we laughed, and ate way too much, and drank pineapple cocktails, and took silly photos and enjoyed another good day. In the end, none of know how much time we have left on earth. Lillie’s death is hanging over us, but her life is here and now. What brings her, and all of us really, joy is good times with family, good food, kindness and laughter. That’s the purpose we’re finding along this journey.”

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