Join Lilly's Fight For Her Life

Friends, we will start with the current situation and latest update since I know that’s what everyone wants to know first: In September 2024, Lilly was diagnosed with severe aplastic anemia, a rare and serious condition where bone marrow fails to produce sufficient blood cells. She subsequently developed hepatic veno-occlusive disease (VOD), a severe complication affecting her liver function.

Following eight days of intensive chemotherapy and radiation preparation (after countless transfusions to prepare her for transplant), Lilly underwent a stem cell transplant with bone marrow donated by her brother Jared. She is currently on day 19 post-transplant, and at this point, we are not yet seeing signs of engraftment. This waiting period is critical, as engraftment typically occurs within 30 days post-transplant. Her medical team continues to monitor her closely for any signs that the new stem cells are beginning to produce blood cells.

Right now, Lilly's biggest vulnerability is her complete lack of an immune system. Without engraftment, she has absolutely no protection of her own against any type of infection - even the smallest exposure could be dangerous. This makes the engraftment process absolutely critical to her recovery. Antibiotics are of course being administered, but these can't prevent everything.

Yesterday on December 31st, Lilly required emergency surgery due to critical elevations in her lactic acid levels, necessitating colonic resection. Her colon was removed. The procedure, which began laparoscopically, was converted to an open surgical intervention. Due to significant blood loss requiring 10 units of transfusion, the surgical team implemented a temporary abdominal closure. She is currently stable in the ICU at Riley's Hospital under constant nursing supervision.

The medical team is relentlessly monitoring her critical factors around the clock, with labs being drawn every 4 hours to track her ammonia levels, lactic levels, clotting factors, and blood pressure among so many others. Due to the extensive bleeding during surgery and her temporary abdominal closure, her medication for liver VOD had to be temporarily paused, as it can increase bleeding risk. The immediate priority is stabilizing her condition sufficiently to complete the interrupted surgery and place a temporary stoma.

She continues to receive plasma pheresis treatments and is on dialysis as well.

The colon surgery is just one battle our girl is fighting. Lilly has a laundry list of mountains she's working so hard to climb. Though she's currently intubated, today both Jared and Nancy got a nod from her - a precious sign of her strength. Once she's stable enough to complete this procedure, the focus will shift to addressing her liver function. While engraftment typically occurs within 30 days post-transplant, Lilly may need a stem cell boost if signs of engraftment don't appear soon.

This extended medical crisis has placed significant emotional and financial strain on the family. While they stay by Lilly's side, they face mounting expenses including:

- Extensive medical bills and hospital charges

- Daily transportation and parking costs

- Ongoing household expenses and utilities

- Basic living necessities

- Lost wages due to extended leave from work

Friends reading this - our Lilly girl needs us, right now she is fighting for her life. I think its impossible to meet Lilly and not immediately love her. The best friend, best hype girl, best sibling, best everything - that’s Lilly. At her dance studio, the younger dancers absolutely adore her - they even created a special "Mother Hen Award" just for Lilly, recognizing how she takes such loving care of them, always ready with a warm hug or words of encouragement. She has always been a natural role model who lifts up everyone around her. No matter what challenge was thrown her way she handled it all with more grace than young women her age typically have. Situations like this never make a lot of sense - it was only a few months ago that Lilly was smiling and being her bright and funny self. Its so hard to see her still in a hospital bed. Just a few days after her transplant, before things took this difficult turn, she spent her time talking about her friends, worried about them, wanting updates on their lives. She is always thinking of others. Last night as we watched her in her room, her mother Nancy said that Lilly is her best friend… it is aching to see this journey.

Lilly and her big brother Jared share the kind of sibling bond that doesn't just make you smile - it makes you want to go hug your own sibling because their love and connection is just that contagious. The day Lilly was born, Jared made a promise to protect his baby sister - a promise he's kept every day since, and one that took on its deepest meaning when he became her bone marrow donor. He really put his money where his mouth is on that one. She's always looked up to him, and true to form, Jared stepped up in the biggest way possible when his little sister needed him most.

Now it's our turn to wrap our arms around Lilly and her family. Every donation, no matter the size, will help take some worry off their shoulders so they can focus on what really matters - getting our precious girl well again.

Lilly has such a bright future ahead of her, filled with so many dreams waiting to be fulfilled. Let's show her what community really means. Please consider donating if you can, and share her story with others. Every share, every prayer, every positive thought helps. Together, we can help Lilly and her family through this challenging time and get her back to living the life she deserves.

On a personal note, as a mother myself, I witnessed something no family should ever have to experience. Watching Lilly's family sit in silence in her hospital room while she was in surgery is a scene that will break every heart and steal the breath right out of your chest. They are living their worst nightmare. Your support, in any form, will help carry them through this unimaginable time.

We could each write a book on how special Lilly is, so I'm ending this here for now. Any amount you can give will mean the world to Lilly and her family. Thank you for being part of Lilly's journey back to health. We will continue to share updates as the family is able ❤️