Scott & Sunny

Scott & Sunny

Wednesday, August 29, 2007

Today's latest

I got my clarification from my middle of the night post. Technically what has happened to Scott is a form of stroke. Sinusodial Thrombosus I believe. We've still not sat down with the neurology folks, but we have talked with 3 or the 4 oncs in the group this morning. The problem exists in a "sinus" (cavity) in the middle of his brain, between the two lobes. It is creating a problem due to pressure against areas, as well as decreased blood flow to areas.

What has happened is scary. There is no other word to describe the situation. His motors skills seem mostly normal. He can stand. He can walk. He's a bit wobbly, but he's also been in a bed for most of the last 10 days.

The problem is communication or understanding. He can hear, as he'll squeeze hands or shake his head. But he can't process what folks or saying. Either that, or he simply can't coordinate the words within his mind and speak. He will protest the shots in his belly. He just told us "wait" when we went to do them. Earlier he was up and said "I have to pee really bad".

Our onc group says he is the third kid they've seen this with in about 8 months. Doc Tebbi is digging through the histories to see if there is a common drug link or time period in each kid's treatment. He also thinks a genetic factor could be involved, as Stephanie has had a blood clot in her lung before.

The news hit us hard and Stephanie had to go downstairs and have a good cry and meltdown. She's okay, and just needed to vent some of the steam and pressure from all of this. We both just needed some expectations from the doctors as well.

This is distressing to say the least. Talking to your kid and not knowing what he hears and what he understands is terrible. Not knowing if he truly realizes who you are is even worse.

The doctors say the truly expect complete recovery, but it will take time. When I pressed Doc Tebbi for some type of timeframe, he stated the previous two kids were back to what he thought "normal" in around 6 months. While that sounds bad, if it takes 6 months of work to get Scott back to "Scott", that's okay. Right now, he's just not "there," or can't convey himself to us.

Very, very distressed is the best way to describe us. Either that, or scared to death. Thinking this could be something that came along independent of the leukemia and it's treatment makes one wonder just what else can get tossed at us?


Staci said...

All I can think to say is I'm so so sorry that Scott is having to go through this. We are all thinking of you. Hugs from Maine.

Laura said...

David and Stephanie I just don't know what to say. I'm hoping some kind of good news will be brought to you soon. This is just too much for any family to be handling. You guys have been so strong - I am so proud of Stephanie for sticking with her gut. She's supermom. I'm thinking of Scott and sending you all big hugs.
Angel Laura

Dawn said...

What can we say, this is heartbreaking. It must be so scary for both you and for Scott if he can't communicate.

Now you know the cause of the problem it doesn't matter if it takes time. You've been supermum up to now Steph, and you'll carry on doing it. You'll keep fighting, bullying the docs when necessary etc. What's 6 months or so? You'll all get Scott through this with a lot of love and help from the professionals. And I bet Derry will be worth his weight in gold to his brother soon.

We're all thinking of you and sending you our love. Dawn.

Sandie said...

I hate this for all of you. And I too am so sorry that Scott is going through this.

I believe with every ounce of my being that the even when the mind cannot efficiently send the message to the lips, the words are there. He knows who you are and he knows how very much you both love him and all that you are doing for him. Please believe that it's simply a matter of the transmitter needing to be fixed, not the beautiful boy who is still very much in there.

Stephanie... one breath at a time. Just get through one breath at a time.

Sending you lots of love, a big ole bear hug and a wish that it won't be long before we'll be singing.


Becki Cooper said...

Hi Stephanie,

Mum's just updated me on the situation with Scott - I hadn't checked the blog for a while.

I'm so sorry to hear of this recent development. As a mother myself, I can only try to understand how you are all feeling - although I'm sure what I'm imagining doesn't even come close.

I just wanted to send my love and let you know that we are all thinking of you - Beth has fond memories of Scott (& Derry!) prancing around the hotel garden on the Isle of Wight, doing hilarious ballet routines! Tell Scott we want to see a repeat performance! Keep strong.

Love Becki, Darren, Beth and Maddie in UK