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May 05-11

This Week

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I feel like this update is well overdue! Thank you to everyone who continues to read these updates and pray for Noah and our family.  I have been better at updating Facebook on my personal page, but for those who do not have FB, here's a monthly recap on Noah.

  • Following his admittance into the hospital on his one year anniversary of diagnosis and brain surgery, Noah underwent 10 more radiation treatments to help with the symptoms of the brain tumors.  He was also given infusion Avastin, which he will continue on every 2 weeks while enrolled in the study.  
  • We traveled to Duke University and enrolled him in an immunotherapy trial that will officially kick off with his first vaccine on Tuesday, November 10th.  He already did a 5 day round of oral Temozolomide for the trial, which is the same chemo he took last year during his first round of radiation.  
  • Noah will have vaccine injections every 2 weeks for the first 6 weeks at Duke, then if tolerated well, he will have one vaccine/month at Duke and Avastin every 2 weeks (once at Duke while there for vaccine injection and once at Vandy on off weeks) .  
  • After we left Duke, we went to Disney for a vacation that had originally been planned in July, but due to Covid was rescheduled for the first week in October, which was rescheduled due to radiation.  We are incredibly thankful that he received symptom relief and was able to enjoy Disney World.  
  • Since we've been home he has been getting better and better, all glory to God.  His vision has improved, his balance and coordination has improved, and he is not having any symptoms!! We are praying for this to miraculously continue in Jesus' name.  
  •  We received the final donations for the NoahBRAVE 5K race weekend and thanks to the amazing generosity of friends, family, and others following Noah's journey, we were able to give over $6,600 to The Chad Tough Foundation.  The Chad Tough Foundation is responsible for funding research and Noah's clinical trial at the University of Michigan that he was on from December 2019 - August 2020.
  • The NoahBRAVE 5K race team launched the sale of #NoahBRAVE stickers that you can check out here: https://www.etsy.com/shop/NoahBRAVEstickers
  • We celebrated my 40th birthday last week and for my birthday we hosted a fundraiser for The {unofficial} NoahBRAVE Foundation.  You can read more about the heart of the foundation and the fundraiser by clicking here: https://www.gofundme.com/f/noahbrave-foundation
  • Noah has been enjoying building Legos each morning and spending quality time with family and friends everyday.  We are incredibly THANKFUL to the LORD for His continued provision and healing.  

THANK YOU for continuing to pray, believe, and hope for the earthly miracle to come for Noah and our family.  
We couldn't make this journey without you! 
Love, 
Tom and Lori 
Nathan, Noah, and Elijah 
#NoahBRAVE 

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