Project Stella is named for Stella Novotny, an unforgettable little girl who lost her life to AML when she was just four years old. Stella had many exploratory treatments and a first-in-human immunotherapy trial, until her tiny body could not fight any longer. She lost her battle in November 2017, just 3 weeks after her 4th birthday. Stella’s parents, Casey and Jed, launched Project Stella to help change the outcome for other children and families facing AML. Their courage and vision are responsible for this life saving project. We owe them so much.
Our Ella turned 3 in August and is truly a threenager! She's spunky and bold, expressive and chatty, affectionate and wise. She sings and twirls, is always up for a family dance party, and never passes up a chance to climb at the playground. She and her sister Lily play together constantly- pretending with mermaids and barbies, making up silly songs, and occassionally, just occassionally, spatting like sisters do. ;) Thanks to Ella's amazing team at Lurie Children's in Chicago, Ella is doing well medically. She is down to just 7 meds a day and is now officially off all immunosuppresants! Though her lungs continue to struggle, her CT scan in July showed no progression of damage or disease. She is also finally off steroids after over a year, so we eagerly await the moment when her body can start making cortisol on its own again. Her team, led by Dr. Chaudhury and Dr. Rossoff feel really positive about where she is in her treatment and recovery. We continue to feel immense gratitude with every passing month of remission and hope and pray "cancer" is a chapter of Ella's past, not her present or future.
~Written by Troy and Ashley Peck
Aspen is just over +180 days post-BMT, just over 21-months old, and living her life to the fullest. Since discharge Aspen has been taking her world by storm and is happy to be home with her brother. She's made strides developmentally, but continues to be mostly non-verbal. Her thirst for adventure is evident by her fearless attempts to climb nearly anything in her way. Like many younger siblings, Aspen wants to do all the things her brother does and nothing will stop her from getting her way, except her parents trying to protect that central line.
We continue to monitor Aspen's blood work with weekly clinic visits. For the past 4-months we've been chasing the source of elevated AST, ALT and ferritin levels. It could be lingering med toxicity, increased viral load, GVHD, a new normal... no one knows. Like every cancer parent that's come before us, and those who come after us, the fear of relapse is real. Aspen's next bone marrow biopsy is at the end of October, so we'll be anxiously anticipating the procedure and results. It is a comfort going into these biopsies with the knowledge that if Aspen does relapse we could potentially use the therapies being funded by Project Stella. As Aspen's oncologist told us when she was diagnosed, "this is going to be a lot like picking sprinkles out of a shit sundae." Ultimately, Aspen is living her life as full as she possibly can right now.
Emari was a spunky little girl who was diagnosed with AML-RAM at the age of only 18 months. She endured countless rounds of intensive chemotherapy and a bone marrow transplant, but relapsed less than 2 months post transplant, even before engrafting and creating a new immune system. She received one of the drugs (STRO-002) tested in Project Stella and though she made a remarkable turnaround after only the first dose, could not continue to fight infection and the large disease burden. Emari sadly passed away on September 28, 2021 at home in the arms of her mother. Our hearts break with her family.