I Love You Always, Mom

Dear Silas,

I want you to know your very last wish is happening right now. There is a team of researchers, doctors, and specialists who have assembled. They are working to make a difference in the world of brain cancer. I don’t think any of us could have imagined the impact your donation will have. I am still trying to understand all Dr. Rubin and I discussed this afternoon.

You should know that there are others on the team besides Dr. Rubin who love you so much. Dr. King and Dr. Limbrick are there as well. At the first team meeting, the three of them made certain the entire team knew they weren’t dealing with just any young man. They shared some of your antics, your jokes, your idiosyncrasies. Then they shared what an extraordinary person you were. I’m sure they chatted about your love of life, and how you just kept proving the medical community wrong time and again.

We know you had a rare type of brain cancer, but let me tell you why it was so rare. You had NF1, which you knew. Patients with NF1 often get brain tumors. Many of these tumors are gliomas, which you have had several in the past. Few are cancerous. Even fewer are aggressive. It is mind-bogglingly rare that you had a PNET tumor, of the worst variety. It was so aggressive it was trying to grow out of your brain! From the time of your surgery September 10, 2014 for removal of the recurrent PNET tumor, it was trying to take over your brain. Even as you went through chemotherapy to combat more growth, it was multiplying in size. I am looking at a printout of an MRI taken after you donated your brain to Dr. Rubin’s research. It appears to me the tumor was roughly the size of my fist.

Part of what they are studying is using MRI scans in a much different way. Dr. Rubin was so kind to point out to me all the different shades of gray, bright spots, bright rings, dark spots, and more. All of this indicates you had several different “varieties” of tumor cells growing up there. They are going to be able to compare your “plain” brain cells to those in the tumor, factor in your genetics, and try to answer many questions. They will be looking at treatments, and what combinations of therapies might work on part of the tumor, but not on another, and figure out why. They are looking at the blood samples Daddy and Shobi and I donated, and using them, along with samples of your blood, to answer even more questions.

There are some very famous people on this team. (Other than you, I mean…)
I remember when Dr. King told you the tumor had recurred. You chose surgery and treatment afterwards. You always reasoned that, even if it didn’t cure your cancer, the results of your decisions might someday help other children with brain cancer. I also remember your conviction when, faced with the possibility of not surviving the surgery, you said, “All I care about is donating my brain to Dr. Rubin.” He finally has your brain, Silas. So much good is going to come from this.

I did ask some hard questions today, Silas. I asked Dr. Rubin to show me the parts of the brain affected by the tumor, and the functions of them. Now I know why you lost any mobility you had regained on your left side. Now I know why you might have struggled to communicate toward the end. Now I know why you fell asleep a week before you left us, never to open your eyes again. Now that I have seen the size of your tumor, I cannot imagine how much pain you were in. I am so thankful for hospice and the medications that kept you comfortable.
I promise you I will follow along, and watch over the research. I am so proud of you and your selfless attitude. I have heard people describe you as unique. After today, I realize there will never be a word strong enough to describe just how unique you were.

I love you always,

Watch a short video from Gloria, Silas’ Mom

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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