Bad week, Hopefully a better Birthday
Karl's birthday is tomorrow and we are trying to get him home to celebrate- He will be home for his bash on Saturday. Unfortunate news-Baylor Clinical Trials a no go and Karl is in the hospital.
Here's what happened- he had to be off the steroids in order to start the trial. Well, he was on a low dose and the latest brain scans showed no signs of major brain swelling so we got the green light to stop. That was last Friday. He seemed fine since then and even did some walking in the pool on Monday.
In the wee hours of Wed morning Karl was coming back from the bathroom to his study (he sleeps there because he gets up a lot and wakes me up) and fell- he couldn't get up and so just laid on the carpet and slept until I got up at 7 am and found him. I can't move all 212 pounds of him alone and he said he couldn't move his left leg at all- he said it "gave out on him". The day before it was no problem, he just complained of it being very heavy and rightly so as he has major edema in the leg making it hard to walk or wear shoes at all- Swollen like a balloon! Usually if I can get him sitting he can help lift himself up- not this time so I had to call 911 and take him in to the hospital.
His brain has swelled up again, blood is pooling in the spots where he had the cancer removed and on top of all that he has a superficial blood clot in his left leg. Oh did I mention his hemoglobin was down and he's anemic? He had a blood transfusion again yesterday. Scans have show growth and new cancer in his thigh lymph nodes on both legs. Yesterday he lost movement of his left arm and the left side of his mouth is not working (like when you have dental work). Doctors put him back on the steroids and are running tests but we've seen this before and a good 24 hrs on the steroids should have things working again! Blood clot is not a major threat and right now it's the least of our worries. His leg swelling is going down and he's not is as much pain as when they first brought him in.
Baylor was informed and we were turned down for their studies, Dr. Neumanitis said call him when Karl is off the steroids and assured me there would be a spot for him-they have around a dozen melanoma trials that should be open for a couple of months and new ones on the way. The problem is we don't know if he will ever be off the steroids. So we are back to searching for clinical trials that don't care if he's on steroids and trying to race the cancer clock- if he gets worse before we find something, it's going to get a lot harder.
Karl's in better spirits and can't wait to get home, turn 38- thank God for another year-celebrate with his dear friends-eat some cake and open his presents. Anika is bursting to tell him what she picked out!
Here's what happened- he had to be off the steroids in order to start the trial. Well, he was on a low dose and the latest brain scans showed no signs of major brain swelling so we got the green light to stop. That was last Friday. He seemed fine since then and even did some walking in the pool on Monday.
In the wee hours of Wed morning Karl was coming back from the bathroom to his study (he sleeps there because he gets up a lot and wakes me up) and fell- he couldn't get up and so just laid on the carpet and slept until I got up at 7 am and found him. I can't move all 212 pounds of him alone and he said he couldn't move his left leg at all- he said it "gave out on him". The day before it was no problem, he just complained of it being very heavy and rightly so as he has major edema in the leg making it hard to walk or wear shoes at all- Swollen like a balloon! Usually if I can get him sitting he can help lift himself up- not this time so I had to call 911 and take him in to the hospital.
His brain has swelled up again, blood is pooling in the spots where he had the cancer removed and on top of all that he has a superficial blood clot in his left leg. Oh did I mention his hemoglobin was down and he's anemic? He had a blood transfusion again yesterday. Scans have show growth and new cancer in his thigh lymph nodes on both legs. Yesterday he lost movement of his left arm and the left side of his mouth is not working (like when you have dental work). Doctors put him back on the steroids and are running tests but we've seen this before and a good 24 hrs on the steroids should have things working again! Blood clot is not a major threat and right now it's the least of our worries. His leg swelling is going down and he's not is as much pain as when they first brought him in.
Baylor was informed and we were turned down for their studies, Dr. Neumanitis said call him when Karl is off the steroids and assured me there would be a spot for him-they have around a dozen melanoma trials that should be open for a couple of months and new ones on the way. The problem is we don't know if he will ever be off the steroids. So we are back to searching for clinical trials that don't care if he's on steroids and trying to race the cancer clock- if he gets worse before we find something, it's going to get a lot harder.
Karl's in better spirits and can't wait to get home, turn 38- thank God for another year-celebrate with his dear friends-eat some cake and open his presents. Anika is bursting to tell him what she picked out!
posted by LivingStrong at
10:36 PM
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