Wednesday, July 12, 2006
A new challenge
We just got back from the kind of idyllic vacation in Hawaii you only dream about - but as the days went by it was clear that Jacob wasn't okay, and we were terrified.
His gait was getting progressively more unsteady, his balance off. He has double vision. He was sleeping more and more of the time, sometimes only rousing a few hours a day, and becoming exhausted by things he usually wouldn't even notice. A week ago he started noticing that his left hand was numb.
We'd been calling the docs at Packard from Hawaii regularly, and at the point the numbness began to extend up his arm, they had us take him to the emergency room at Lihue for an MRI. The docs there conferred with the ones at home and decided we should cut our vacation short and go home.
It was a wrench to leave our friends, the Frykbergs and that beautiful island, but by then we were so scared it was a relief to do something about it. The best I could do rescheduling our flight was a red eye, but trip back went very smoothly - Alex was there to pick us up (at 5:40 in the morning!) and were we ever glad to see him.
Young took a cab straight to Packard and delivered a CD of the MRI in time for the tumor board at 7:30 am. Alex, Jacob and I went out to breakfast (never mind we landed at 2:40 am Hawaii time). Jacob really brightened up around Alex.
The docs all looked at the MRI and agreed there is NO sign of tumor, new or old. The symptoms are from radiation damage to the thalamus and/or basal ganglia, and they decided to treat them with ....steroids. So Jacob's on a hefty dose of decadron - not so high as when he was first diagnosed, but still pretty high. We are going to have to really watch the eating behaviors, something that will be very good for all of us.
Already, Jacob is more alert, and we hope that the numbness will begin to go away within a week or two. It's all uncharted territory.
More about Kauai soon.
His gait was getting progressively more unsteady, his balance off. He has double vision. He was sleeping more and more of the time, sometimes only rousing a few hours a day, and becoming exhausted by things he usually wouldn't even notice. A week ago he started noticing that his left hand was numb.
We'd been calling the docs at Packard from Hawaii regularly, and at the point the numbness began to extend up his arm, they had us take him to the emergency room at Lihue for an MRI. The docs there conferred with the ones at home and decided we should cut our vacation short and go home.
It was a wrench to leave our friends, the Frykbergs and that beautiful island, but by then we were so scared it was a relief to do something about it. The best I could do rescheduling our flight was a red eye, but trip back went very smoothly - Alex was there to pick us up (at 5:40 in the morning!) and were we ever glad to see him.
Young took a cab straight to Packard and delivered a CD of the MRI in time for the tumor board at 7:30 am. Alex, Jacob and I went out to breakfast (never mind we landed at 2:40 am Hawaii time). Jacob really brightened up around Alex.
The docs all looked at the MRI and agreed there is NO sign of tumor, new or old. The symptoms are from radiation damage to the thalamus and/or basal ganglia, and they decided to treat them with ....steroids. So Jacob's on a hefty dose of decadron - not so high as when he was first diagnosed, but still pretty high. We are going to have to really watch the eating behaviors, something that will be very good for all of us.
Already, Jacob is more alert, and we hope that the numbness will begin to go away within a week or two. It's all uncharted territory.
More about Kauai soon.
# posted by Ann @ 9:47 PM 
