ShinewithIzzy - Help End DIPG

On August 13th, 2025, I took my perfectly healthy 4-year-old daughter, Isabella, to the ED for abnormal movements of her eyes. What I thought, or hoped, was going to be a diagnosis of a lazy eye, turned into my worst nightmare come true. The next day, Isabella, or “Izzy” as we call her, was diagnosed with DIPG, an inoperable brainstem tumor, which has a median survival of 9-11 months. As a pediatric oncology NP, my first instinct was to assume Izzy had a brain tumor, and I had to actively talk myself out of jumping to the worst case scenario, as I often did.

Isabella loves princesses and unicorns. She learned to swim this summer, all while this monster of a tumor was growing inside of her little head. Izzy played t-ball this fall. She just went back to gymnastics classes. She loves preK. She is adored by her two younger brothers. She’s at an age where she talks about the future, “when I become a Mommy”, “when I turn 5”, “when I can drive a car”. It makes my heart sink every time, because the chance of a future is statistically unlikely. 

DIPG is a disease that has been ignored for many decades. Right now, Izzy’s only chance at extending her life lies in clinical trials — phase 1 studies that exist to test safety, not to cure. There are treatments being developed that are significantly shrinking tumors in some children. But we need to accelerate this research, so treatment modalities can be combined together into treatment protocols. Cancer is not cured with one therapy alone. In pediatrics, research moves painfully slow, much slower than for adults, due to lack of funding, lack of the ability of drug companies to profit off of pediatric cancer treatments and government regulations in place for pediatric research that inhibit its growth.

After more than 20 years of caring for children with cancer, I never thought I’d be the mom begging for more time. So I’m asking, pleading— for awareness, for funding, for urgency. Please help me raise funds to accelerate research for a cure for DIPG, for Izzy, for all of the children fighting now and for those that have yet to start their fight. I have spoken with many doctors that specialize in DIPG and many are confident that there will be a cure for DIPG one day. I want to make that day sooner. I want to save my sweet girl more than anything, but if I can't save Izzy, then I want to save the next Izzy, because no parent should ever hear that their child’s cancer has no cure. 

DIPG facts:

DIPG is an inoperable tumor in the brainstem.

Children with DIPG slowly lose the ability to move, talk, eat and smile, all while their brain is still functioning.

The average age at diagnosis is 5-10 years old.

Standard of care treatment is palliative radiation, that only extends survival by mere months.

The 2-year survival rate is 10%. The 5-year survival rate is 1%.

There has been little effort put into researching DIPG until the last 5-10 years.

There are currently phase 1 clinical trials that are proving to shrink tumors significantly. These trials need to move forward quickly and be combined with other treatment modalities to help save children.