Elijah has a “diffuse hemispheric glioma with a G-34 mutation”, commonly called a “high grade glioma”. Typically the prognosis is 1-1 1/2 years to live. It’s been just over 13 months since diagnosis.

Last Sept he had surgery to do a partial resection of the tennis ball sized tumor. But they are unable to remove it all due to the finger like infiltrations into parts of the brain. From Nov-Dec he did 33 rounds of proton radiation and an oral chemo called temozolomide. From Jan-Aug he did 5 rounds of oral chemo at home within scans every 3 months. The tumor was stable during this time until in August, right before he was set to take his 6th and final round of the oral chemo, he had to go to the ER, which revealed his tumor had new growth.

A new plan was made and at the end of Sept he completed 10 rounds of photon radiation on the new growth, and is now traveling to St Jude every other Friday for up to a year to do his new chemo treatment, Avastin, through his port. This chemo is not meant to kill it or shrink it, but just to “hold it at bay” and “give him more time”.  This chemo has side effects such as high blood pressure and kidney issues.

We have scans on the Thursday & Friday before Thanksgiving break (Nov 21 & 22, 2024) to see if this last set of radiation and his current chemo is doing what they hope. The “scanxiety” is already setting in.

He is eligible for the CAR T-cell clinical trial and is on the wait list for it. But they will not jump straight to the trial if this current treatment plan is doing what they hope because it is a complicated process that is very dangerous and still in Phase 1 (which is safety protocols). Clinical trials are literally just experiments that they are monitoring and adjusting to see what works with it and what doesn’t.

pe is in the Lord! Completely and totally!

So as Elijah’s scans approach right before Thanksgiving 2024, this is our verse:

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” Philippians 4:6

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