Days 69-70
I hope this blog will be a way for family and friends to keep up to date on John Cadenhead's leukemia. I have been emailing news to a few people, but this approach is less intrusive and will give everyone the opportunity to check when it is convenient and they are comfortable dealing with the ups and downs of what is now the norm, if not normal, for John, Debbie and me.
Today is the 70th day since John was diagnosed with Acute Mylogenous Leukemia (AML), and he is currently in Emory University hospital recovering from complications following his first round of "consolidation" chemotherapy. I will try topost the previous updates, since some of them contain some medical information that might be useful going forward.
Friday night John called to say that the doctors had come in with cameras to take pictures of the lesions that remained on his skin from his reactions this week. They concluded that he had suffered a rare reaction to his chemo that they had never seen at Emory before in which the chemo drugs worked their way through his tissues and collected near the surface of his skin, or something bizarre like that, leading to the local reactions. Emory has been doing well for John this time, but this is just one more reason, I suppose, to think seriously about a clinic where they have seen everything and many times. There is a listserv for AML that I participate in and someone was asking yesterday if some unusual course of treatment was normal. It might or might have been the right treatment, but it was surely not the norm. Unfortunately, lay people she didn’t know from the internet was who she needed to turn to check.
By 10 or so Saturday morning the streets were passable enough from the night’s sleet for me to drive John’s Jeep over to the hospital. They were shorthanded, but managing well. John’s fever had been up and down in the night, as was he, but he did eat some of his breakfast. He was more up than usual, which was probably because they switched his antifungal medication to a new one, Cap-something, due to the hallucinations he was having from the newest one, and also started him on Prednisone, a steroid with a list of side effects that could fill a book. More on that in a moment.
Saturday was the 27th day in this round of chemotherapy. John was recovered enough to be out of the hospital by now during his first round. His white blood count today, however, was only at .2, which is still just above the “nadir” level that he was at 8 days ago when he was admitted. He’s nowhere near getting out this time (there is that formula they use, but .5 is roughly the goal), and we will have to postpone our trip to Seattle next week. That, in itself, is only a small setback, but still being in the hospital does make it seem worse.
Dr. Khoury was able to get in and handled the rounds without the usual team of specialists, PAs and such. He made a special effort to talk to John about his condition and the process they’ve been going through. When John was admitted 8 days ago, he had a strep infection in his blood. They gave him antibiotics and his fever came down, at least some, but then came back. They ran a new test every day, and narrowed things down to two possibilities, either a fungal infection (even athletes foot can take over without an immune system) or “drug fever” (think about what they’ve put in him). They switched him to the new antifungal still in trials to see if that helped, but it lead to hallucinations. Fungal infections are usually very severe, and John isn’t “that bad” off, but they couldn’t yet rule it out. They switched him to a different antifungal today and began using different antibiotics to see if they could find the problem through elimination.
That explains the fever, I suppose, and perhaps the headaches. The fact that his white blood count hasn’t come back yet is another story. The doctor says the infection probably set him back a two or three days. The fact that he has precancerous MDS cells may also be a part of the delay. Then there are a very few patient who have difficulty recovering after two or three rounds of chemo.
Since the double doses of growth hormones haven’t worked yet, today’s newest idea was to start John on Prednisone to break the fever and help stimulate white cell growth. Among the many side effects of this steroid are jitteriness, increased emotions, lowered temperature and sweating. John has gotten all of those. His temperature Saturday afternoon was somewhere below 95. I just looked and their Celsius chart doesn’t convert that low. I suppose part of the reason it is down is because he is dripping with sweat, which makes him miserable.
All this sounds just awful, but it does make some when you hear it and he is not all that miserable. In any event, progress is sometimes sideways, I suppose. After the doctor left, John broke down and cried for what I think was just the second time since all this started. I’m sure part of it was the Prednisone. He’s done everything just as he should through all this hospitalization and he’s no closer to getting out than he was the day he came in. It’s hard to imagine what he must feel like or understand how he can be so patient with all this. About all he says is, “I am so getting less thrilled about being here every day.”
I didn’t want him to go through the night being alone like that, so I decided to go out to get him some Italian and spend the night here. Debbie couldn’t get over to join us because of the ice. Emory sits on top of the highest point between Atlanta and Stone Mountain. From the hospital window, you can look out over the city skyline. The trees nearby glowed from the ice that covered them and the low clouds lit up randomly in green flashes as power lines shorted from falling branches.
John did pretty well in the night. He took nausea medicine and later a sleeping pill, which calmed him enough to sleep fitfully. It was good to be here to ground him a bit. His sheets were so damp at one point that he tried to find his sweatshirt to wear with its hood for his head. He was lost and confused until I helped find and put it on.
His temp is 93.8 this morning, but his heart rate is down from the 130s to 76. His white blood count remains the same though. The doctors came by and said they want to stay the course for another day, which means more of the same misery for now.
Today is the 70th day since John was diagnosed with Acute Mylogenous Leukemia (AML), and he is currently in Emory University hospital recovering from complications following his first round of "consolidation" chemotherapy. I will try topost the previous updates, since some of them contain some medical information that might be useful going forward.
Friday night John called to say that the doctors had come in with cameras to take pictures of the lesions that remained on his skin from his reactions this week. They concluded that he had suffered a rare reaction to his chemo that they had never seen at Emory before in which the chemo drugs worked their way through his tissues and collected near the surface of his skin, or something bizarre like that, leading to the local reactions. Emory has been doing well for John this time, but this is just one more reason, I suppose, to think seriously about a clinic where they have seen everything and many times. There is a listserv for AML that I participate in and someone was asking yesterday if some unusual course of treatment was normal. It might or might have been the right treatment, but it was surely not the norm. Unfortunately, lay people she didn’t know from the internet was who she needed to turn to check.
By 10 or so Saturday morning the streets were passable enough from the night’s sleet for me to drive John’s Jeep over to the hospital. They were shorthanded, but managing well. John’s fever had been up and down in the night, as was he, but he did eat some of his breakfast. He was more up than usual, which was probably because they switched his antifungal medication to a new one, Cap-something, due to the hallucinations he was having from the newest one, and also started him on Prednisone, a steroid with a list of side effects that could fill a book. More on that in a moment.
Saturday was the 27th day in this round of chemotherapy. John was recovered enough to be out of the hospital by now during his first round. His white blood count today, however, was only at .2, which is still just above the “nadir” level that he was at 8 days ago when he was admitted. He’s nowhere near getting out this time (there is that formula they use, but .5 is roughly the goal), and we will have to postpone our trip to Seattle next week. That, in itself, is only a small setback, but still being in the hospital does make it seem worse.
Dr. Khoury was able to get in and handled the rounds without the usual team of specialists, PAs and such. He made a special effort to talk to John about his condition and the process they’ve been going through. When John was admitted 8 days ago, he had a strep infection in his blood. They gave him antibiotics and his fever came down, at least some, but then came back. They ran a new test every day, and narrowed things down to two possibilities, either a fungal infection (even athletes foot can take over without an immune system) or “drug fever” (think about what they’ve put in him). They switched him to the new antifungal still in trials to see if that helped, but it lead to hallucinations. Fungal infections are usually very severe, and John isn’t “that bad” off, but they couldn’t yet rule it out. They switched him to a different antifungal today and began using different antibiotics to see if they could find the problem through elimination.
That explains the fever, I suppose, and perhaps the headaches. The fact that his white blood count hasn’t come back yet is another story. The doctor says the infection probably set him back a two or three days. The fact that he has precancerous MDS cells may also be a part of the delay. Then there are a very few patient who have difficulty recovering after two or three rounds of chemo.
Since the double doses of growth hormones haven’t worked yet, today’s newest idea was to start John on Prednisone to break the fever and help stimulate white cell growth. Among the many side effects of this steroid are jitteriness, increased emotions, lowered temperature and sweating. John has gotten all of those. His temperature Saturday afternoon was somewhere below 95. I just looked and their Celsius chart doesn’t convert that low. I suppose part of the reason it is down is because he is dripping with sweat, which makes him miserable.
All this sounds just awful, but it does make some when you hear it and he is not all that miserable. In any event, progress is sometimes sideways, I suppose. After the doctor left, John broke down and cried for what I think was just the second time since all this started. I’m sure part of it was the Prednisone. He’s done everything just as he should through all this hospitalization and he’s no closer to getting out than he was the day he came in. It’s hard to imagine what he must feel like or understand how he can be so patient with all this. About all he says is, “I am so getting less thrilled about being here every day.”
I didn’t want him to go through the night being alone like that, so I decided to go out to get him some Italian and spend the night here. Debbie couldn’t get over to join us because of the ice. Emory sits on top of the highest point between Atlanta and Stone Mountain. From the hospital window, you can look out over the city skyline. The trees nearby glowed from the ice that covered them and the low clouds lit up randomly in green flashes as power lines shorted from falling branches.
John did pretty well in the night. He took nausea medicine and later a sleeping pill, which calmed him enough to sleep fitfully. It was good to be here to ground him a bit. His sheets were so damp at one point that he tried to find his sweatshirt to wear with its hood for his head. He was lost and confused until I helped find and put it on.
His temp is 93.8 this morning, but his heart rate is down from the 130s to 76. His white blood count remains the same though. The doctors came by and said they want to stay the course for another day, which means more of the same misery for now.
