On the evening of Thursday September 21st 2017 Luke said something we had never heard him say before, he said we was feeling wobbly. Waking up the next day Luke said he still had the wobbles, was also feeling nauseous and we headed to our doctors as quickly as possible. On the way to the pediatricians, Luke was closing one eye and Nancy (mommy) asked, “Why are you closing your eye buddy?” Luke answered, “I see two of you mommy.” The following seven days were a whirlwind, with trips to Shady Grove ER, appointments with an ophthalmologist, a neurologist and an MRI on Thursday the 28th, which resulted in a conversation with our doctor where he told us Luke had a mass on his brainstem. Luke went to Children’s Hospital that night and Luke was diagnosed with DIPG on September 29th. Since that date Luke has undergone brain surgery to do a biopsy of his tumor, 29 radiation treatments and was enrolled in a clinical trial at Children’s. The trial had Luke taking 4 medications that were picked specifically for him to shut down the active pathways in his tumor, which a tumor board selected as a result of the molecular analysis which was done on his tumor. On June 16, 2018 Luke had an MRI that showed signs of growth in his tumor, which resulted in stopping the clinical trial. He is currently undergoing a second round of radiation, has started a new chemotherapy and we continue to explore options for treatment.
Luke is brave, Luke is positive, Luke is joyful, Luke cares for those around him more than he thinks of himself. Luke shows us every day what it means to be a superhero.
Luke’s journey, our family’s journey, has taken us to a very dark world, yet despite the darkness that attempts to overshadow and overcome us, we have been surrounded by a lot of light. Family, friends and strangers (who we now just see as friends we had never med) have lifted us
deeds and through donations to Luke’s You Caring Page. We have chronicled his journey on Facebook at LukesSquad.
Luke plays with his puppy Remedy (which he pronounces REM-U-DEE that he got this past fall). Luke is spending time with his sisters Lucy and Amber being silly and doing the things a six year old boy should be doing, all the while going to clinic at Children’s, traveling to Sibley for radiation, taking medications at the start of his day and throughout the rest of his day and is fighting DIPG.
We have a motto – Expect Miracles and we continue to expect miracles both big and small every day.
We have Faith Luke with Thrive, Luke will Survive.