Childhood Cancer Warrior: Ellie
Since the day Ellie was born, we’ve called her our shining light. She radiates joy and is always the brightest light in the room. Shortly after celebrating her second birthday, we noticed that she was having frequent falls and growing far clumsier by the day. We shrugged it off at first thinking that she was still a toddler, and they aren’t always the most coordinated. However, a few short months later, her symptoms had progressed to where we noticed tremors in her limbs. It was then that I realized we needed to see her doctor right away. After a visit with her pediatrician in June of 2023, we were immediately sent to the Emergency Room at Texas Children’s Hospital in the Houston Medical Center. I’m so grateful to her doctor to this day because even though she didn’t know what was wrong, she validated my concerns and made sure that we didn’t have to wait long to find out. The doctors at the ER observed Ellie’s uneven gait and repetitive tremors and knew that action needed to be taken. She went in for a CT scan and less than 10 minutes later, I found out that our sweet, beautiful 2-year-old daughter had a brain tumor. Our lives were immediately turned upside down. What happened next was a whirlwind.
She went in for brain surgery less than 5 hours later to relieve the pressure on her brain due to increased fluid. A drain was placed, and we met our baby girl in the PICU. I will never forget the surgeon that looked at us that evening and shared that we were going to have a long road ahead. 3 days later, Ellie went in for a biopsy of the tumor and a ventriculostomy to treat Hydrocephalus. In July of 2023, we received Ellie’s formal diagnosis of an Infiltrative Bilateral Thalamic Glioblastoma, an exceedingly rare and inoperable brain tumor. We were told that we should expect to only spend 18 to 24 months with our daughter from that point, but we knew that there would be more to her story. Just 5 years ago, Ellie’s only option for treatment would have been radiation, as her tumor is traditional chemo resistant. An answered prayer, the biopsy showed a new targeted chemotherapy medication that was a partial match to her tumor.
Ellie started on this course of treatment in August of 2023 and has continued to take it twice daily almost every day since. She continues to exhibit strength and resilience with a smile even amongst the MRIs, blood work, appointments, therapies, and everything in between. In May of 2024, she underwent another brain surgery to address fluid built up in her brain that was putting pressure on the tumor and causing new symptoms. Following the surgery, at her July 2024 MRI, growth of the tumor was observed, and we discovered deterioration of her peripheral vision. Despite not yet seeing the results we’ve been praying for, we know that she has so much fight left in her.
Coincidentally, we were connected with Sky High just before we received the most difficult news of her treatment journey so far, and what a blessing this incredible organization has been in our lives already. Sky High for Kids provides so much to the childhood cancer community in the way of funds raised for research, physical and emotional support for families, and such generosity and kindness toward children going through their darkest days. Even though our involvement with Sky High has just begun, we have already been fortunate enough to see the incredible heart and passion of everyone involved to end childhood cancer and assist families while they do it. We are forever grateful.
As Ellie continues her chemotherapy, infusions, PT/OT, amongst other appointments, we will continue to fight alongside Sky High for Kids for awareness and research in hopes that one day, no child will have to endure what Ellie has already experienced and continues to go through. Ellie is a walking testament to the research that is being done. New treatments have given us time with her that we likely would not have had. The advocacy on behalf of our sweet babies IS making a difference. We pray that one day Ellie will finally be cancer-free, but even then, we will never stop shouting from the rooftops to raise awareness on behalf of Sky High for Kids and all of the children that were taken far too soon.
