Skip to main content

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!"
Labels:

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
Post a Comment

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
23 comments
Read more

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...
27 comments
Read more

it ain't sexy livin' on an island...

Especially when you have to cross bridges to get ANYWHERE. Very LARGE bridges. The crests of which I inevitably get stuck at. Speaking of...why is it that at the tippity tops of our bridges...the railings always open up? To reveal an eagle's eye view of the white capped depths below? I HATE that. And sure enough...in route to Dr. Pedi yesterday...they must have seen me coming cause traffic ground to a halt at the top of the Mt. Hope Bridge. Where I felt less than Hope-ish. My palms gushing my nerves onto the steering wheel for a good 15 (felt like forever) minutes. Not just things medical bring out my cowardly lion. Heights do too! Anyway... Grabbed an iced coffee and chocolate cream filled to settle my nerves on the way. And we arrived on time...in one piece. Of course. Dr. Sick-Visit-Pedi breezed in chart in hand. Glanced down. Then at Trevy. Then said... "He has a history of Infantile Spasms?" Surprise and speculation in her voice. We get that a lot. It...
13 comments
Read more