It’s a word that Jill has grown to despise.
“Something is only rare until it happens to your child,” she says. Then, the word loses its meaning entirely. Rare becomes your life. Your family. Your whole world. Your precious preschooler.
In April 2018, Jill’s 5-year-old son Luke was diagnosed at Children’s Hospital Colorado with an inoperable, aggressive brain tumor called Diffuse Intrinsic Pontine Glioma (DIPG).
Just 17 days later, the empathetic, creative little boy who loved Hot Wheels and the Beatles succumbed to this terrible disease that – despite being considered “rare” – robs several hundred families of their children each year.
Shortly after their excruciating loss, Jill and Cam, Luke’s parents, started the Luke Morin Fund for DIPG Research at Children’s Colorado with the goal of discovering new treatments -- and ultimately finding a cure -- for Luke’s type of brain cancer.
DIPG is a particularly devastating diagnosis. It only affects children, and it is always fatal, with a median survival time of just 9 months from diagnosis.
The Morin family has made it their mission to change this heartbreaking fact. “If you can solve the hardest problem first,” says Cam, “it’s going to affect everything downstream.”
That belief has led to the family’s unwavering commitment to fundraising for research. It’s been a little more than a year since Luke passed away, and the Morin family has already made significant progress on the road to ending DIPG.
“Monumental advances have been made because of the funds raised in honor of Luke,” says Dr. Rajeev Vibhakar, the Dr. Nicholas Foreman Endowed Chair in Pediatric Neuro-Oncology Research, who was the little boy’s doctor at Children’s Colorado.
Pediatric cancer: A double-edged sword
Childhood cancer is a double-edged sword – children get cancer at much lower rates than adults, but because there are fewer cases, there is far less funding and support from the federal government and pharmaceutical companies.
Childhood cancers are the leading cause of disease-related death for kids, yet a meager 4% of federal research funds are dedicated to researching these childhood illnesses, and of that, even less funds pediatric brain cancer research.
The effects of pediatric cancers are particularly tragic, destroying childhoods and in the worst cases, like DIPG, stealing bright futures.
“Kids shouldn’t die,” says Luke’s 10-year-old sister Phebe with matter-of-fact sadness after suddenly losing her little brother, who loved to snuggle with her in bed each night while she would read to him.
It’s a universal truth, and yet it happens far too often. Philanthropy is critical in driving new treatments and therapies that can change the prognosis for children with DIPG and other pediatric cancers.
Devoted to discovering a cure
In recent decades, research has led to many promising discoveries that are saving children’s lives. Fifty years ago, the survival rate for acute lymphocytic leukemia – the most common childhood cancer – was less than 10%. Today it’s about 90%, and overall childhood cancer survival rates are a little over 80%.
While survival rates for many pediatric cancers have improved, one thing has not changed: DIPG still has a 0% survival rate. Despite dramatic scientific progress for other kinds of cancers, including new treatments and cures, DIPG remains just as deadly today as it was a half century ago.
The Morin family believes that with adequate funding, doctors will be able to make giant leaps for children diagnosed with DIPG.
Support from the Luke Morin Fund has already propelled major strides forward in understanding this disease, funding the work of Dr. Vibhakar and Dr. Sujatha Venkataraman at Children’s Colorado, a national leader in DIPG research.
Three labs on the Anschutz Medical Campus are studying DIPG across the research spectrum, from basic discovery to early-phase clinical trials of new drugs. The Morin family has raised more than $250,000 to support this groundbreaking research with the hope of finding a cure.
Dr. Vibhakar and his team in The Morgan Adams Foundation Pediatric Brain Tumor Research Program have hired a research technician and are now able to grow DIPG cells, which require special care to study and are vital in the testing of drugs and treatments. These DIPG cells are propagated from Luke’s tumor, and in this way, the invaluable gifts from this treasured little boy’s life carry on. The ability to grow DIPG cells directly from patient tissues was a recent breakthrough, and the neuro-oncology team is now able to study the development and characteristics of the tumor.
This has led to the discovery that the gene mutation in DIPG alters other proteins that are needed for the tumor cells to grow. The team at Children’s Colorado is currently developing an antibody to attack the recently discovered proteins, which may increase cell death – and, by extension, slow tumor growth.
Through genetic sequencing, researchers also discovered that DIPG develops resistance to chemotherapy, and a clinical trial is now underway to uncover which drugs might be used to reduce this resistance.
None of this would have been possible without the support provided by the Luke Morin Fund and other donors. The findings from this research could have major implications not only for DIPG, but also for other pediatric cancers. Thanks to this fund, researchers are learning more about what makes DIPG cancer cells “switch on,” what makes them become resistant and how to harness a patient’s own immune system to fight back, which could lead to better comprehension of these mechanisms in other types of cancers, too.
“Luke was put on this planet to help find a cure,” says Phebe, who has contributed more than $700 to research in her brother’s honor, raising money through her bake sale at the Goddard Cares Fall Fest 5K in Honor of Luke Morin. “He’s our motivation.”