ISPNO 2018 — International Symposium of Pediatric Neuro-Oncology
June 29- July 1st, I attended the International Symposium of Pediatric Neuro-Oncology (ISPNO 2018) in Denver. Otherwise known as “Big Brains for Little Brains Worldwide”.
Over 1500 people from 51 countries assembled to share knowledge that will help kids with brain tumors. There were doctors, nurses, social workers, therapists, researchers, nonprofits and patient families… and me, a dad with a sprayfoam brain. Armed with a new travel size brain, I left Minneapolis for Denver.
First off….I made the dubious decision to stay at a hostel….yes HOSTEL not HOTEL. A 40ish-year-old man attending a medical conference and staying at a Hostel. My wife and many of my friends thought this was another example of Ben’s poor decision-making. They sent me scenes from the horror movie ”Hostel” and stories about people being drugged. The running joke was will Ben have both kidneys when he gets back. I am happy to report that Hostel Fish was a lovely place and full of friendly people. My first night there was a bit of an adventure, but you’ll have to read my review of Hostel Fish on Trip Advisor to get that full story. It was Rocky Mountain Hilarious.
Friday June 29th— Family Day was sponsored and organized by several nonprofits and foundations that serve the pediatric brain tumor community. Experts presented on a wide variety of topics; from research trends to parenting and managing survivorship. Adolescents and young adult survivors also had their own sessions. There were sessions on how to talk to your kids about their diagnosis, adapting to the new normal, working with schools, cancer nutrition, financial planning and positive parenting. These sessions really showed the value for family support services in helping manage the treatment journey and long-term survivor issues. It is hard to get these sorts of services to families scattered across the country, but they are immensely helpful. Social workers, therapists, and neuropsychologists rock the freaking world.
We also heard about the Children’s Brain Tumor Tissue Consortium (CBBTC), an exciting research platform that will hopefully help speed up progress in finding cures. The CBTTC is worldwide collaboration that is collecting tumor tissue and other biospecimens and pairing it with ongoing clinical data. This information is depersonalized and then placed in a free,open-source database available to all researchers. This is an exciting effort because childhood brain tumors are very difficult to research. They are rare and there are many different kinds. (One speaker estimated that there are currently 140 variations and subtypes). So, it’s challenging for any one institution to be able to collect the number of samples and patient data needed to do research all the subtypes. The only way we will make progress is by working together. I’m hopeful this worldwide collaboration will help accelerate discoveries and cures. I plan to ask our local care team more about how our information might be able to help this effort.
It was an informative day, but I am not going to lie, it was also a hard day. There are truly amazing families that are a part of the BT community. All of them face fear and pain. One dad compared it to a form of PTSD. I met a woman from Nebraska whose teenage daughter was just diagnosed a few months ago with a tumor that has few treatment options. I met a man from Colorado Springs whose 5-year-old son was diagnosed just two weeks ago and had already had three surgeries. I met a father from Israel, a mom from New Mexico, and a family that moved cross-country to get better treatment for their daughter. I met many more families at various points on the BT journey. There are far too many cases where we don’t have great options to help kids. There are far too many parents and kids struggling. There was session on palliative care and hospice and the darker days that exist for many in the brain tumor community. I did not attend that session, but that topic always lingers just below the surface. We all hurt for the families that must endure those dark days.
Saturday June 30th was Education Day and my brain was working. My last biology and chemistry classes were more than a few years ago. There were presentations that covered updates to tumor classification and genomic sequencing and advances in chemotherapy, radiation therapy, and immunotherapy. It was a full morning taking in information about research initiatives and the growing worldwide collaboration to provide more cures and more tolerable treatments. I learned more about why brain tumors are so challenging for researchers and clinicians. Pediatric brain tumors are the nexus of the cancer world, rare disease world, and the world of neurological diseases. That is a tough place to be. But I also learned that there are more opportunities to advance care for pediatric brain tumors than any time in history. Technology and collaboration are opening research opportunities that could not have been imagined just a few years ago. We will save more kids and we will develop better treatments. No one is going to stop. We just need to help these folks do it faster.
That afternoon, I met many of the amazing folks trying to speed things up at the Nonprofit Collaborative session. These people are raising research funds and providing services to families affected by brain tumors. Many of these groups are legacy foundations started by patient families. There are too many organizations to name individually but there is nothing more heartfelt and inspiring than meeting people who use their pain to help others. The level dedication in that room was staggering. I have been trying to figure out how I can best help contribute to efforts to find cures and provide support for families with a diagnosis. These people were a great inspiration. I sometimes struggle with balancing my desire to help with the demands of normal life. Dave Wetzel from the McKenna Claire Foundation (and McKenna’s Dad) told me, “Your job is to be the best dad you can be, you let me worry about raising this money.” I appreciated his comment and I appreciate all the work being done by people like him. My efforts are small and my #1 focus is being a good dad, but I can’t unsee what I have seen. My family has been blessed with a mostly positive journey and recovery since diagnosis nearly 3 years ago but my son will live with a brain tumor for the rest of his life. We will find our own little way to help contribute to this community.
As Day 2 ended I was awash in gratitude. I looked around at all those people, oncologists, neurosurgeons, nurses, social workers, researchers, nonprofits, foundations, advocates….some
1500+ people from around the world. 
was struck by the thought that these people all choose to work on one of the hardest childhood diseases. Childhood cancer is the leading killer of children and brain tumors are the leading cause of cancer death. That is the world they chose. Every day they get up and see families experience the horror of a life-threatening condition. Or they head in to research something that is immensely hard to study. Families with a diagnosis don’t have a choice, they are forced in the trenches because of bad luck. These professionals made a conscious decision to get in the trench with us. And I could not be more grateful.
So, on Sunday before I flew out, I went to the conference to try to share my gratitude with those that chose to be there and dedicate their lives to helping children.
I feel very fortunate to have been able to attend for a few days and I am grateful to the Morgan Adams Foundation for providing a travel scholarship to support my attendance. There are a lot of hard things in the world right now. Some days it makes you wonder if there is more bad than good out there. If you want some hope, go to an international pediatric brain tumor meeting.
Thank you to all those at ISPNO 2018. This Dad is pulling for you. You give me hope.