Pediatric cancer cure needs community & legislation
In September last year, I was invited to moderate a panel discussion at the White House as part of the patient advocacy group for the Cancer Moonshot Childhood Cancer Forum. The platform brings together key pediatric cancer stakeholders to create a roadmap for better patient outcomes and tools for survivors. Also happening at the time in Washington D.C., the BrainStorm Summit was a ground-up advocacy effort that brought neuro-oncology experts, researchers, and patient families together to find a path to end childhood brain cancer.
It has been a long struggle to get to this day. I channeled my heartbreak into grassroots advocacy and community building, earning me a seat at the White House forum. What galvanizes our community to action is the realization that as lonely and soul-crushing as it is to lose a child, we are not alone.
Advocacy has played a vital role in making progress in childhood cancer. It has been key in building many public and private enterprise partnerships. Philanthropic efforts by patients and their families have been one of the key drivers in bringing new therapies for childhood cancer. However, finding a cure demands consistent funding for research, which is nearly impossible without government support. And the best way to get policymakers’ attention is to tell your personal story and represent. Last year, I wanted to be one such voice – for children with brain cancer, the deadliest of pediatric cancers, for those who are taken by one of its rarest and incurable forms, DIPG or Diffuse Intrinsic Pontine Glioma, and for my son, Mithil Prasad, whom we lost to DIPG in 2016.
DIPG: The deadliest of them all
We were on a trip to India in August 2015. Mithil, then 12 years old, was more sleepy than usual, and his walk was a bit off. Suspecting travel fatigue and jet lag, we asked him to rest. When things didn’t improve in a few days, we took him to see a neurologist. After several tests and MRIs, the neurologist said they had spotted something in his brainstem and asked us to return to the U.S. We did not once think it was a big deal; we would go home to San Jose, give Mithil some medication, and he would be just fine. In the next two days, Mithil got more tired, but he was neither fussy nor in pain. His gait was worsening, but Mithil kept it all normal, reorganizing his grandmother’s phone to make it easy for her to use, playing board games with her, and telling my parents and family that he was sorry he couldn’t come to visit them.
By the time we were home in San Jose, Mithil’s pediatrician had set up an appointment for us with doctors at Lucile Packard Children’s Hospital at Standford. My husband, my daughter, Rachna, and I accompanied Mithil to Stanford, not overthinking it at all.
After a series of tests and MRIs, while Rachna watched over Mithil, Prasad and I went to see the neuro-oncologist, who broke it to us: Mithil had DIPG, a terminal disease, and he had about 8-10 months to live.
I couldn’t breathe. My husband, a usually composed man, was in tears. The entire room started spinning around us.
Our family was changed in that instant and was never the same again.
In America, cancer is the primary cause of death by disease for children. According to the American Childhood Cancer Organization, 1 out of 6 children with cancer in America do not survive beyond five years. Of the 400,000 children diagnosed with cancer each year, nearly 16,000 are in the U.S. Brain cancers are the second most common cancers in children and are far more challenging to treat. And DIPG is the deadliest of all pediatric brain cancers. It affects 400 children in the U.S. and 10,000 worldwide each year. The average age of diagnosis is 7 years, with an average survival time of just 9 months. For over 60 years, the prognosis has remained unchanged, with no survivors. The tumor is aggressive and is in the brainstem, which controls key functions like breathing, heart rate, and blood pressure. It cannot be surgically removed.
Trapped in his own body
The sixteen months that followed are indescribable. For a tech-savvy and curious boy like Mithil, he never, at least with us around, googled or asked too many questions about his condition. All he said was, “You are my parents and you will do the best for me, I trust you guys.” Despite the prognosis given to us, we had decided as a family that all efforts would go toward making sure Mithil got the best treatment available and a shot at beating DIPG.
Mithil was always wise beyond his years. But since the diagnosis, he seemed even wiser, trying his best at everything, always ready for every blood draw, every radiation appointment, every MRI – never once complaining. It was heart-wrenching to see him lose his abilities one by one over the next few months – walking, eating, and then the worst, his speech. He could no longer call out amma to me. All this while, Mithil was cognitively alert; he knew everything happening around him, but was trapped in his own body.
“Amma, Appa, you have to do more for kids like me”
When his last MRI report came in October 2016, the doctors at UCSF Children’s hospital said the tumor had progressed and they had run out of options. In the following weeks, Mithil’s condition worsened rapidly. But that didn’t stop him from wanting to make a trip to Lake Tahoe with his family and friends. At Tahoe we tried to make it as normal a vacation as possible but it was anything but normal. Mithil sat on his reclining chair and just watched us, occasionally trying to smile.
Mithil was a big foodie, so when we returned home for Thanksgiving, he wanted his sister to plan an elaborate meal. She did. Mithil couldn’t join us for dinner, as he was asleep most of the time. But we saved some for him, which I ground to a paste the next day and fed him slowly.
On Saturday of that week, when we were dressing him after a bath, Mithil started having seizures, following which he went into a deep slumber. We watched over Mithil the whole night and on Sunday, November 27th, 2016, Prasad texted our close friends, Mithil’s close friends, and his baseball coach. He wanted all his folks around him and waited till his favorite baseball coach came to see him, before breathing his last.
“Amma, Appa, you have to do more for kids like me,” Mithil would tell us. His words became the inspiration for Mithil Prasad Foundation, which is a founding member of DIPG-DMG National Brain Tumor BoardDDRFA (DIPG DMG Research Funding Alliance) that supports DIPG DMG national brain tumor board and a funding partner for My DIPG Navigator, both free resources for patients. Our foundation has also been associated with the Brainstorm Summit in D.C. for the last 3 years since its inception. Mithil’s words and indefatigable spirit continue to inspire us to make a difference and work toward a future where no child has to face the devastating effects of DIPG.
“You are in America. They will cure anything”
When my mother first heard that Mithil had a problem with his brain, she told me, “Don’t worry my child, you are in America. They will cure anything”. When we say America is the greatest nation on earth, we also carry the hopes of several nations across the world who lean on us to figure out solutions to difficult problems; curing childhood cancer is a very difficult problem.
Although we are a ways away from finding a cure, we have made a lot of progress since Mithil was diagnosed in 2015. Quality of life has improved, survival period has increased by a few months in some cases, and breakthrough clinical trials like CAR-T cell therapy have opened up.
Our DIPG community advocacy work has been recognized by the White House. This is our time to accelerate our efforts through advocacy and raising awareness, by funding clinical trials, and by bridging the gap between technology and the medical community.
One of the projects that I took up along with three other DIPG moms and their foundations — Misha Mehta of the Neev Kolte & Brave Ronil Foundation, Stacey Sands of Hudson’s Hope, and Lisa Ward of Tough2gether Foundation — is the DIPG One Link project, a resources hub for DIPG families. We used our learnings to identify resources we would have loved to access when our kids were fighting DIPG. The idea is to have a resource hub that families with recent diagnoses can trust and use to build a roadmap for the difficult journey ahead.
While fighting for a cure is the only way forward for DIPG families, I always applaud those of us who are not directly affected but still willing to help. We need more of you.