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?