Growing During Isolation – And the smell of fresh baked bread!

Fear, uncertainty, disruption, crisis these are the words swirling around us these days. It’s hard not give in to despair. I can’t stop this virus, however I can share what I learned while caring for my son, Michael when he was stuck at home sick with cancer.

We are all being kept from our normal routines, the things we love to do and the people we love to do them with. That about sums up living with cancer, except for the harsh treatments, throwing up, and the other health affects which are legion.
But the setting is similar.

Here’s what Michael taught us:

Connection is key! Back in 2008, while we were living in Boston for Michael’s treatment, FaceTime and Zoom were not a thing. But a techie neighbor worked with our school district to set up Skype so Michael could see his friends and participate in class. After class Michael Skyped his brother, twin sister and best friends. “Being with” his people gave Michael some normalcy, which he craved. Laughing with his friends and continuing to learn gave this difficult time meaning and purpose.

Today, so many have access to technology and can use it to maintains some normalcy and keep from isolating in these “uncertain times.” For example, I’m planning Girl’s Night this weekend with Zoom Conference. Our group has been friends since elementary school. There will be wine, snacks (BYOB!), laughter and I’m sure some bellyaching and maybe some tears. It will be cathartic and something to look forward to.

The things Michael used to look forward to: gymnastics, baseball and basketball were all taken away from him. He still identified himself as an athlete and he couldn’t lose that as well. In junior high he started training to join the cross-country team. Running was excruciating for him, he was slow and weak and lamented how fast he used to be. But his drive and persistence kept him training. It got him outside, into the fresh air and gave him a sense of purpose.



While homebound at the end of his life, Michael took up drawing. Always busy with sports he’d never developed his artistic side. Forced to stay inside Michael found drawing to be fun and gratifying. People are meant to keep growing, keep learning and Michael knew he needed something to get out of bed for each day. Staying connected, running and drawing helped keep his life full.


How might we keep our lives full
in this time of isolation and scarcity?

Is now the time to take up yoga or train for a 5K? Like Michael, we can reframe this time as an opportunity. An opportunity to try new things, learn new things and make the best of a grim situation. Maybe you’ve always meant to read Moby Dick or learn to bake bread. You’ve got the time now. Buy some yeast, knead some dough and while the dough rises maybe get that run in! Your reward will be a quarantine space filled with the aroma of fresh baking bread instead of the stale air of despair.


Recent Publications from Centers of Excellence

Harmonization of Post-mortem Donations for Pediatric Brain Tumors and Molecular Characterization of Difuse Midline Gliomas

Children diagnosed with brain tumors have the lowest overall survival of all pediatric cancers.  To address the paucity of tissue for biological studies, we have established a comprehensive protocol for the coordination and processing of donated specimens at postmortem. Since 2010, 60 postmortem pediatric brain tumor donations from 26 institutions were coordinated and collected. Patient derived xenograft models and cell cultures were successfully created (76% and 44% of attempts respectively), irrespective of postmortem processing time. Histological analysis of mid-sagittal whole brain sections revealed evidence of treatment response, immune cell infiltration and the migratory path of infiltrating H3K27M DMG cells into other midline structures and cerebral lobes. Sequencing of primary and disseminated tumors confirmed the presence of oncogenic driver mutations and their obligate partners. Our findings highlight the importance of postmortem tissue donations as an invaluable resource to accelerate research, potentially leading to improved outcomes for children with aggressive brain tumors. Read Full Publication

Dr. Monje-Deisseroth and her team at Stanford University recently published a paper detailing how gliomas are able to “hijack” the brain's communication system.

Published in  Nature: High-grade gliomas are lethal brain cancers whose progression is robustly regulated by neuronal activity. Activity-regulated release of growth factors promotes glioma growth, but this alone is insufficient to explain the effect that neuronal activity exerts on glioma progression. Here we show that neuron and glioma interactions include electrochemical communication through bona fide AMPA receptor-dependent neuron–glioma synapses. Read More

Congratulations to two of our Center of Excellence teams lead by Dr Javad Nazarian and Dr. Michelle Monje on their recent groundbreaking research publication. Due in part to increased access to post-mortem tissuethe teams were able to study a larger sample of DIPG tumors.  Diffuse intrinsic pontine glioma is a lethal pediatric brain cancer characterized by H3K27M histone mutation. Nagaraja et al. characterize a large cohort of rare primary tumors and normal pontine tissue to reveal active regulatory element heterogeneity dependent upon the histone variant and cell context in which the mutation occurs. Read More

Research Breakthroughs Resulting from Autopsy Tissue

Why Autopsy Tissue is Needed to Empower Research

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