The gift that is helping change the world for those diagnosed with DIPG
November 1, 2018
Addy Trevino has made a huge impact on the Seeley Lake community. But as her parents know, Addy did not stop at touching lives in our community. Addy’s gift to cancer research is changing the world for families facing DIPG.
I interviewed the Trevinos and Addy’s neuro-oncologist Dr. Nick Vitanza, known to the family as Dr. Nick, about the amazing gift Addy provided to cancer research. I had the opportunity to share this story at the Addy’s Celebration of Life Saturday, Oct. 27.
Two months before Addy’s third birthday, she was diagnosed with Diffuse Intrinsic Pontine Glioma, more commonly known as DIPG.
DIPG is a tumor throughout and contained entirely within the pons. The pons are part of the brainstem that connects the nerves from the brain to the spine. They control eye movement, swallowing, respiration and muscle strength in the extremities among other things.
Of the 350 children and young adults ages 1-26 that are diagnosed with DIPG each year in the United States, most live only six month without treatment or an average of a year with radiation. It still remains completely incurable.
While major advancements have been made in understanding the tumor over the last 100 years, all the research had been done on autopsy specimens. Until scientists are able to understand the cells that are present before receiving radiation or other treatments – known as treatment naïve – Dr. Nick believes a cure will remain out of reach.
In June 2017, when Addy was diagnosed with DIPG, she had a tumor biopsy. Her parents Jen and Treay didn’t hesitate to sign the waiver agreeing to donate any leftover cells for cell research. Addy always wanted to help other kids and this is one way she could. Treay was very clear and told Dr. Nick, “You got a piece of her but that is all you are ever going to get.”
Half of Addy’s cells were put into tissue culture and the other half into four mouse brains. While the cells initially started to grow in the tissue culture, the mouse brains did much better.
In the past, scientists have not had a lot of success getting cells to grow in the lab. However, Addy’s biopsy cells were different. They became some of the first DIPG cells in the world to grow prior to having treatment.
Not only did Addy’s cells grow, they multiplied. From the initial biopsy in 2017 to April 2018, all of the mouse tumors grew and multiple millions of cells have been taken out, regrown and implanted into more than 20 mice.
When asked why, Dr. Nick’s only explanation was “the stars aligned.” All the parts were in place to make it successful including a willing family that saw beyond their own daughter’s diagnosis and wanted to help others.
The ability to grow Addy’s cells prior to exposing them to radiation or chemotherapy is ground breaking towards understanding DIPG. The mouse model of the disease allows scientists to test radiation, drugs and new treatments and provides the foundation for designing more targeted clinical trials for future children. As Addy’s cells are grown and banked, they will be shared with other labs that study DIPG across the country and internationally.
Dr. Nick and his team of 10 researchers have launched a new project of which Addy’s cells are a major part. We look forward to sharing this work in more detail soon.
In the last few weeks of Addy’s life, the Trevinos reconsidered the promise to Dr. Nick that he would never get another piece of Addy. In an effort to help find a cure, they donated Addy’s brain and tumor to Dr. Nick and his team. Dr. Nick said this allows them to compare pre and post treatment cells which once again is one of the first in the world.
Dr. Nick said he is so thankful to Addy and her parents and is honored to have their help. The donation that they have made is worth more than any amount of money and the research would be impossible without Addy’s cells. He also wanted to thank the entire community for their strength and said, “Addy will always be an inspiration.”
For the Trevinos, the possibility that with Addy’s help, scientists could someday find a cure for DIPG is the light in the darkness.
I asked the more than 300 people in attendance at Addy’s celebration how many had ever heard of DIPG before Addy. Two people raised their hands. When I asked the same question about leukemia, all the hands I could see were raised.
Dr. Nick said it was awareness and subsequent funding for cancer research that took the survival rate for children diagnosed with leukemia from zero percent in 1960 to 94 percent today.
The Trevinos ask that every one who has heard Addy’s story tell at least one person about DIPG to raise awareness. And with awareness will come funding to help Dr. Nick and all the other scientists studying DIGP as they continue to work towards finding a cure for the incurable. Any donations the family receives in honor of Addy will be given to Dr. Nick and his lab at the Fred Hutchinson Research Center.
That is part of Addy’s legacy that continues to live on. Dr. Nick told me that he is convinced that one day these trials will work - the patient who he diagnoses with the incurable “monster” called DIPG, will be cured.