For family and friends

Thursday, July 24, 2008

Saturday we spent 7 hours in the emergency room. Adam woke up with a fever of 101.6 and Dr. Cloughesy wanted us to take him to the ER. Most of his test results were good although he showed a slight elevation for a lung infection that is common in brain cancer patients. He is on daily antibiotics and he's had just a low grade fever the last couple of days.

Wednesday we went to LA. First we saw the leukopheresis unit to see if Adam's veins were good enough to do leukopheresis. They are! He will probably donate the white blood cells next week. They will use the white blood cells to make the vaccine. After that we saw Dr. Cloughesy. Adam has thrush and we got some medicine for that. Adam is confident that in a few days his tongue and throat will feel much better and then he will be able to eat more. He definitely could use some more weight. Adam was able to do two of his chemo drugs yesterday but the other two will have to wait until after he donates white blood cells.

Our goal now is to try to get weight on Adam. I am meeting with the nutrtionist later this week to see if there are any ways to improve on what we are doing for Adam.

Monday, July 14, 2008

A lot has happened since last Tuesday. Adam had a feeding tube put in last Friday. He fought getting a tube until the minute they put him under. He has fought harder against the feeding tube than anything in the last two years. He is still complaining about the tube today. We are already getting more calories in him. He only weighed 122 pounds today but I'm sure he weighed less than that last Friday. He had about 1400 calories yesterday and by the time he goes to bed tonight he should have about 1800 calories. We are trying to get him on a schedule so that we can maximize the number of calories he gets. The tube is actually good as we can wake him up do a tube feeding and then he can go right back to sleep. Today he was already bugging the doctor about when he could get the tube out. The doctor told him that it's too early to bug him. After he gains some weight he can start bugging the doctor.

The mri today showed that the brain tumor has grown a little but the doctor said he was pleased that it wasn't bigger given that he hasn't had chemo in several weeks. He will probably be able to do avastin (chemo for his brain tumor) next week. He may have to wait a little longer for the other chemo drugs but we will work hard to get weight on him so he can get back to a chemo routine.

Dr. Cloughesy said that we are almost through all the hoops for Adam to get the brain cancer vaccine. Adam will have to undergo cytapheresis two different times to gather white blood cells to make the vaccine. This is something that Adam desparately wants so we will use this to get him to eat. Once the vaccine is made he will have to get a series of injections. This will be a piece of cake for Adam.

Adam has to go to the eye doctor tomorrow. His eyelid is looking much better but his vision is still not very good. We will have a better idea of how he's doing after tomorrow.

Tuesday, July 08, 2008

We went to UCLA yesterday and Adam still weighs 125 lbs. He has agreed (grudgingly) to get a feeding tube. I am working on getting him his appointment and surgery set up for that this morning. Due to his low weight he was unable to do chemo yesterday. He only got glucose due to his dehydration. His dehydration is causing some tachycardia so the doctor is anxious to get the feeding tube surgery going.

Adam is at the eye doctor right now. His eyelid has severe radiation burn so he is getting that looked at. His vision also seems to be affected so he will have that tested as well.

He is still feeling tired due to his lack of nutrition. Once he gets his feeding tube and he starts eating more he should start to feel more energetic.

Adam had a great time this past weekend with all of his friends that came down from Santa Cruz. There were twenty people here at dinner on Saturday night. He has great friends.

I will try to update everyone as soon as Adam has his feeding tube put in.

Tuesday, July 01, 2008

It was not a good day for Adam. He is feeling miserable and has not been eating much at all. He lost 13 pounds over the last week, down to 125 pounds. His face is badly burned from radiation and his tongue is raw. The doctor upped his pain killers so he can try to eat more. Adam has to gain weight by next Monday or he has to get a feeding tube. He is adamantly against it, but it was the compromise. The doctor would have done it yesterday. They didn't do chemo yesterday because of his weight but they sent him to the chemo room and pumped him full of glucose. This was to help get him less dehydrated and to hopefully get him started on a weight gaining path. He has eaten a little more today, all in the form of smoothies. Bill has been making him smoothies with whole fat yogurt, ice cream, tofu, protein powder, Boost, whole milk, and various other things. Adam has great incentive to gain weight. We also got a little good news, the FDA has approved the vaccine for Adam (after Dr. Cloughesy jumps through a few more hoops.) Adam has to donate blood two seperate times in order for them to make the vaccine. The doctor told him he can't do that right now because he's too thin. This is huge incentive for Adam to gain weight! We will keep pushing the high calorie smoothies!

Adam saw the radiation oncologist today and he said no more radiation for Adam. This was fine as Adam had already said that he would not do any more radiation. They had stopped doing radiation over a week ago and thought maybe they would continue after a week break but Adam says he's never doing radiation again. We got a new cream to help with the burn. Hopefully this will give him some relief.

Adam has to go to the ENT on Thursday just to make sure there is nothing seriously wrong with his mouth and throat. Hopefully there will be nothing serious.