Luke

November 26, 2012 - April 25, 2018

Luke Wyatt Morin

Luke was an active, happy, healthy, inquisitive 5-year-old little boy. He was very articulate and so loving. Luke would randomly and frequently call to us from other rooms of the house just to say, “I love you”. From a young age, Luke had an empathetic soul, always quick to offer smiles, hugs, and encouragement. He loved nature and exploration and liked to watch Wild Kratts to learn about all living creatures. He was quite fascinated with and knowledgeable about colossal squid! His favorite books were Pete the Cat, he LOVED Hot Wheels cars/tracks, music (especially The Beatles and watching his big sister sing), and hosting impromptu dance parties in his room.

The first week of April 2018, Luke was just not feeling well. He vomited twice on the way to and from preschool and had trouble sleeping. I spoke with our pediatrician twice that week and since Luke was acting otherwise fine, happy, had no fever, and was not dehydrated, we were advised to keep him home as needed.

Friday afternoon, something was still amiss with Luke, so I left work early and called the pediatrician again. I explained that Luke was in good spirits, eating, smiling, playing with his sister, just a little off, something was wrong in his eyes. They advised to let him rest through the night and if things were not better in the morning, to bring him in for a visit. We kept a close eye on him Friday night and made sure he had plenty of fluids and rest.

Saturday morning, as we would frequently do, the kids jumped in our bed and took over our bedroom. We watched their shows or just acted goofy and laughed. We noticed that Luke was drooling. Also, that he was unable to easily climb up on our bed, something that was not a challenge for him the night before. I called the pediatrician; we made an appointment for that morning. During the appointment, the doctor was so thorough, so kind and Luke was, of course, charming her through it all; he had that effect on many. After her assessment, she said very clearly to me, in no uncertain terms, “If this were my child, I would take him to the ER.” She called Children’s Hospital Colorado to alert them and off we went. By this time, Luke had started to lose his balance and was acting a bit drunk, still all smiles.

The first examination in the ER was as light-hearted as it could be (thank goodness for our amazing doctors) and Luke was his usual adorable, inquisitive self. The doctor asked many questions: did Luke get into any drugs/medications/cleaning products? Did he hit his head? He tested Luke’s reflexes, looked in his eyes, asked him to follow lights/fingers with his eyes, and to walk in a straight line. We were worried but of course, had no idea what we would hear in the coming days.

We were sent to a room in the ER at Children’s Colorado with a lovely nurse named Claire. I remember she said people called her Claire Bear and she gave Luke a cute little bear holding a heart. She, of course, was also charmed by our little buddy. Luke and I laid in the bed, him on my chest, watching movies. We were in that little room for 8 hours. Luke was so patient with all the medical professionals that came and went. Cam and I were a bit more impatient but in retrospect, those 8 hours would have made absolutely no difference in Luke’s journey. We also understood that there were extenuating circumstances and dire situations in the ER that night.

At last, Luke got a CT scan which indicated “something” in his brain, but an MRI was necessary to determine further information. Luke was admitted and prescribed steroids. A biopsy and MRI were scheduled for the next day.

April 8, 2018: D-Day. We were walked to a family consult room to hear the results of the biopsy and MRI. The first question my husband asked upon sitting down: “Is our son going to die?”. I do not remember the answer, but I remember hearing the words “low survival rate, inoperable tumor, brain stem, mutation” (HK327), and of course the dreaded letters “DIPG” (Diffuse Intrinsic Pontine Glioma). As most families do, we chose hope and tenacity. We planned for 30 days of radiation 5 days a week while keeping Luke on steroids.

The honeymoon period was not after radiation, it was before radiation. Luke’s care team advised that we go home and enjoy the weekend and enjoy each other. We made the very most of it; family visited, we played outside, Luke and Phebe were showered with love and gifts from many. The next week, two radiations later, Luke declined quickly. He was extremely uncomfortable and unable to speak, walk without assistance, or hold his head up. He was aspirating liquids, so applesauce became our hydration savior. Eating was a challenge and food options were limited. Luke smiled and laughed through it all until he literally could smile and laugh no more.

By the end of the week, we were in the PICU at Children’s Colorado. At one point, Luke stopped breathing and there was a blur of people who rushed with incredible speed to him. Once he was breathing again, we heard the prognosis: Luke was unable to breathe on his own. Our options were 1) intubation which would most definitely cause cardiac arrest, 2) do nothing, or 3) keep him comfortable in a medically induced coma with breathing assistance until he passed. Option 3, of course.

We were given a large room and pushed two beds together so anyone could snuggle with Luke. Cam and I slept with him. Aunts read to him. We kept a “good vibes only” sign on the door and asked that folks keep serious conversations outside of the room. We worked to create a calm space with good energy and lots of love. One evening while I was bragging on him to his wonderful nurses, his body moved about 3 times. Yes, he managed to charm them while in a coma and they all fell in love with his beautiful hair. Family and friends visited from near and far. It was the best of times because I was physically holding Luke (I never stopped touching him) but it was the worst of times because I knew I would soon have to let him go. Three days passed.

On April 25, 2018, just 17 days after being diagnosed with DIPG, Luke died peacefully in our arms. Luke’s tumor was donated to DIPG research at Children’s Hospital Colorado / University of Colorado Anschutz Medical Campus. Luke’s Posse tribute fund at The Morgan Adams Foundation was created where 100% of funds raised are donated to DIPG research. Our family continues to build Luke’s legacy and is committed to raising awareness of and funding for DIPG research, a disease that has seen no noteworthy improvements in treatment options or outcomes for over 50 years. DIPG remains fatal upon diagnosis. Too many children are never given a chance and to watch them fight during their limited time is both inspirational and heartbreaking.

Our children shine so brightly, and that shine was there from the beginning; from the moment our eyes met. Their shining lights lead us through our journey, our human experience. Luke left a special light with each person he encountered on this earth and he continues to do so.

Jill Morin
Cam, Jill & Phebe Morin
February 2021