Not sure where to start so I'll just jump right in:
April 2007
Grand mal seizure
December 2007
Grand mal seizure
January 2008
Dx with abnormality in right frontal lobe (brain tumor)
Craniotomy with partial resection of tumor at Baylor Dallas
*pathology showed grade 2 astrocytoma
"Awake" Craniotomy with partial resection of tumor at MD Anderson in Houston
Regular MRI's every 3 months to monitor growth
1-year Chemo & 32 treatments of radiation Oct 2009 due to minimal growth
Continued MRI's from 3 to 6 to 9 month checkups for the next several years
March 2016 slight growth shown from scans
Oct 2016 seizures return from partial to full blown grand mal
April 2017 MRI shows stability in tumor growth
October 2017 grand mal seizures return
Here I am sitting at Baylor waiting on my neuro-oncologist to show up and tell me the next plan of action. When we ask the on-call neurologist for answers after looking at my MRI from Friday we get "what did your doctor say?" No answers. She did tell me that she has shared the notes with the Dallas surgeon and the Houston surgeon, and believes a 3rd surgery may be in my future...and I WILL go back to MD Anderson if that's the case.
I should find out more today when the neuro-oncologist gets here. My wife is on the laptop filling out/updating additional info for Dr Rao in Houston since I have not seen him since '08.
I am 39 and have 3 beautiful kids (13 yo girl, 10 yo girl, & 8 yo future MLB for the Fightin' Texas Ags. My girls were junior bridesmaids in a wedding last weekend and broke rule #1 of being in a wedding = prettier than the bride. Now I'm scared that I will not be here to walk them down the isle. I'm fücking scared I won't see my kids grow up to be young adults.
I know I'm in a position better than some and worse than others. I'm not asking for anything from AY other than your prayers and therapeutic ways of lighting up the board.
I'm not as good with words as Marco or ISP, but I know when this community comes together it is a powerful thing.
Thanks and Gig'em!
Casey
******************UPDATE**********************
I've always been one to prepare for the worst and hope for the best...and Wednesday night / Thursday morning I was scared. Around 7pm last night the surgeon from my first surgery (Jan '08) came in and gave some promising news. I'm not out of the woods yet, and I will update after talking to a couple of more Dr's this Friday (neuro-oncologist) & next Friday (MD Anderson surgeon). Continued prayers are appreciated, not just for me, but my family! I've seen my kids only once in 5 days. My wife is a true badass. She hasn't left my side.
There is a chance I go home today on 3 anti-seizure meds in pill form, but no guarantee they will eliminate the seizures, even though I have not had one in almost 2 days with the same meds through IV.
Thank you, AY for your prayers!
============UPDATE 2============
Just met with surgeon at MD Anderson for consult
I’ll have a 3rd surgery December 7th, or sooner if there are any more seizures, to remove small amount of growth and scar tissue from previous surgeries and radiation
April 2007
Grand mal seizure
December 2007
Grand mal seizure
January 2008
Dx with abnormality in right frontal lobe (brain tumor)
Craniotomy with partial resection of tumor at Baylor Dallas
*pathology showed grade 2 astrocytoma
"Awake" Craniotomy with partial resection of tumor at MD Anderson in Houston
Regular MRI's every 3 months to monitor growth
1-year Chemo & 32 treatments of radiation Oct 2009 due to minimal growth
Continued MRI's from 3 to 6 to 9 month checkups for the next several years
March 2016 slight growth shown from scans
Oct 2016 seizures return from partial to full blown grand mal
April 2017 MRI shows stability in tumor growth
October 2017 grand mal seizures return
Here I am sitting at Baylor waiting on my neuro-oncologist to show up and tell me the next plan of action. When we ask the on-call neurologist for answers after looking at my MRI from Friday we get "what did your doctor say?" No answers. She did tell me that she has shared the notes with the Dallas surgeon and the Houston surgeon, and believes a 3rd surgery may be in my future...and I WILL go back to MD Anderson if that's the case.
I should find out more today when the neuro-oncologist gets here. My wife is on the laptop filling out/updating additional info for Dr Rao in Houston since I have not seen him since '08.
I am 39 and have 3 beautiful kids (13 yo girl, 10 yo girl, & 8 yo future MLB for the Fightin' Texas Ags. My girls were junior bridesmaids in a wedding last weekend and broke rule #1 of being in a wedding = prettier than the bride. Now I'm scared that I will not be here to walk them down the isle. I'm fücking scared I won't see my kids grow up to be young adults.
I know I'm in a position better than some and worse than others. I'm not asking for anything from AY other than your prayers and therapeutic ways of lighting up the board.
I'm not as good with words as Marco or ISP, but I know when this community comes together it is a powerful thing.
Thanks and Gig'em!
Casey
******************UPDATE**********************
I've always been one to prepare for the worst and hope for the best...and Wednesday night / Thursday morning I was scared. Around 7pm last night the surgeon from my first surgery (Jan '08) came in and gave some promising news. I'm not out of the woods yet, and I will update after talking to a couple of more Dr's this Friday (neuro-oncologist) & next Friday (MD Anderson surgeon). Continued prayers are appreciated, not just for me, but my family! I've seen my kids only once in 5 days. My wife is a true badass. She hasn't left my side.
There is a chance I go home today on 3 anti-seizure meds in pill form, but no guarantee they will eliminate the seizures, even though I have not had one in almost 2 days with the same meds through IV.
Thank you, AY for your prayers!
============UPDATE 2============
Just met with surgeon at MD Anderson for consult
I’ll have a 3rd surgery December 7th, or sooner if there are any more seizures, to remove small amount of growth and scar tissue from previous surgeries and radiation
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