Chandler’s Story

Site created on March 30, 2021

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Niki Tatum

Hi friends and family. 
 
I thought I would use this platform to reach more people…
 
May is Brain Cancer Awareness month.  A big part of raising awareness is through sharing stories.  Below is a short version of our journey. There is also an EASY way to advocate for those diagnosed with brain cancer, and for their caregivers.
 
Chandler was diagnosed with Glioblastoma on March 29, 2021 and passed away in June of 2022, 14 1/2 months after diagnosis.  Chandler had an amazing team of doctors and went through the following treatments: 
 
*A successful craniotomy on April 6th
*6 weeks of daily radiation, coupled with chemo
*Continued chemotherapy after radiation
*Steroids to help with inflammation 
*4 months of wearing the Optune device ~ a huge commitment and one of the few treatments for GBM
*Regular MRIs to watch for tumor growth
*A clinical trial
*Infusions to help reduce brain swelling
*PT and OT to manage neurological challenges, due to the brain tumor
 
Here is how you can help advocate:  Urge policy makers to address critical issues affecting the brain tumor community.
 
Why?  This communicates to the government on behalf of both those diagnosed and their caregivers. The federal government is the largest funder of brain tumor research in the country. Advocating for continued funding ensures support for promising research and affordable access to life saving treatments. 
 
Two of the bills address government financial support and access to healthcare. Chandler and I were so fortunate to have good health insurance and an amazing support system. I am acutely aware of how important both of these are when you are hit with a brain tumor diagnosis - especially GBM.
 
Just click the following link. All you need to do is fill out a SHORT form and click “Submit”. It’s that easy. 
 
***After doing this, look for the “Action Alert” tab. There are specific legislative items listed and it will e-mail your representatives to take action. ***
 
https://braintumor.org/advocacy/action-alerts/become-an-advocate
 
We continue to lean on our love for Chandler and his love for us.  If you made it this far, thanks for reading. 
 
Love always protects, always trusts, always hopes, always perserveres.  1 Corinthians 13:7
 
#gograyinmay #Novocure #optune #utsw
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