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out with a bang

12/30/2007
So, Trevor, your first year is going out with a bang! Last night we were rushed to the ER (again) because of a fever. We didn't get home til' after midnight - which totally lets us off the hook for staying up tonight! Then I checked email to find a response from Dr. Chugani - I took his news with alarming calmness. He says you have one of two things. The good thing - a benign brain tumor. The bad thing - cortical dysplasia which is a malformation of the brain that comes with the wonderful attachment of retardation and a dollop of developmental delays. Both require surgery as treatment. You're not even a year old yet and we're already talking about brain surgery!
It's crazy when our prayers for you are
"please, God, let him have a brain tumor!"
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Comments

JSmith5780 said…
Danielle- really, you would prefer the cortical dysplasia. Both require surgery, but only one could require chemo. If you are going to have the surgery either go to Boston or go to Chugani. Both are fabulous! A few on the group have had surgery with Chugani.

No matter, be so thankful he is SF!
January 3, 2008 at 10:57 AM
JSmith5780 said…
oops, just read the benign part!

Isn't it scary that at any part in this journey you can say, PLEASE let brain surgery be an option?

We did the whole week long surgical testing at Boston. They did a 5 day VEEG, an MRI, a PET, an ictal and an interictal SPECT and a BEAM. It made for a long week but it was worth it to get a clear picture of what was happening. Plus for us, it ruled out Rasmussen's completely. They did do a brain biopsy about a month after this and even that was amazingly easy. He was realeased from the ICU less than 24 hours after surgery. This ruled out a tumor.

What a journey we have had! I hope Trevor remains SF!
January 3, 2008 at 11:01 AM
Danielle said…
Hey...a brain tumor is a brain tumor!
This whole thing blows our minds! We are thrilled that Trev's seizures are still in remission. But somehow it doesn't "feel" easier!
I've been mulling over heading to Boston for awhile now. Even tho we're very happy with our neuro...we can't help but wonder if B is the better choice when it comes to epilespy?! I'm glad you shared your experience...I've heard some negetive things about B and have been investigating the Ronald McDonald House in Detroit just in case. We're still up in the air...if we can get approval for Chugani we'll probably head there.
Anyway...
Thanks Jen...for sharing...and the comraderie!
...danielle
January 3, 2008 at 4:25 PM
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