Monday, January 31, 2005 

Day 71

This link is to John's web journal. He hasn't updated it in a few days though, because of all that's going on. http://www.livejournal.com/users/johnvscancer/

John's temperature worked its way up to 97 by the end of the day. Most of his other vital signs seem adequate, but his blood pressure is trailing off, which can happen when your body isn't making blood cells to replace the old ones. He has tried to eat, but can't keep anything down. As much as he fought IV feeding last time he was here, he asked for it today to see if that might give him a boost.

His white blood count remained at .2 today and 10 days into this stay, they are still doing tests to rule out what his problem might be. They say they have ruled out a fungal infection now.

Today they called for three tests. The x-ray of his chest never happened, but it was to check again for pneumonia. He was to have an MRI on his head to look for what may be causing his dizziness and disorientation. He did have a bone marrow test to extract marrow from his hip. I think this was his fourth and you can still see the marks from the prior ones. This was the one test I worry most about, because it could show that his leukemia has returned and is what's keeping his white cells from reforming. They say they don't think that's the problem, but they also say they don't know what is wrong. There were no results as of tonight. Courtney did call and talked to John while he was coming out of anesthesia. He carried on something of a conversation, but I'm sure he won't recall.

He is sleeping well enough right now, with the benefit of medication. He is really a sick guy though. I'll be here with him again through the night and at least until the doctors come around tomorrow and we continue the elimination process.

Debbie coaxed him out of bed and once around the hall this morning. He got applause from the staff. I've not seen that before. She's a good and caring foil for him and he appreciates her lovingly straightforward but nonjudging way of helping him, sometimes in ways he doesn't quite know he needs.

We've rescheduled John's Seattle evaluation for February 24, which is the next available date. Hopefully, he will be better by then.

4:23 PM | |

Sunday, January 30, 2005 

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.


11:24 AM | |

Wednesday, January 26, 2005 

Day 66

Day 66
Today is John’s 6th day in the hospital for his fever. They had isolated a strep infection in his blood, but he’s pretty much had all the anti-anything medication, general and specific, I think they have and he is still having headaches and an up and down fever. They can’t find any infection in his blood now. We can add nausea again to his problems, since he threw up in the night. He is on oxygen now, because of fluid in his lungs. Oh, and he is getting inflamed spots on his skin that could be due to some of the antibiotics, or might be something else. Today’s new test will be a biopsy on one of these lesions. He’s already had one x-ray, two CAT scans, a heart test and daily blood exams.

Yesterday, John did have some good periods. He even explained to the doctor how he had figured a way to manage his pain and fever with a combination of oxycodone and Tylenol every 5 hours. I brought him a milkshake after his dinner, which he enjoyed while we set him up a new email account. (Emory will be dropping his old one shortly). Unfortunately, his fever spiked in the night and he threw up. This morning, he is half-sleeping, though we did spend some time looking online at a laptop to replace his computer, which doesn’t travel to hospitals well. He is using mine for now, but his needs are at another whole level.

We are still scheduled to fly to Seattle on Tuesday afternoon, but we will have to postpone his evaluation there if he doesn’t improve in a day or so. Currently, his white count is still around .1 or so, which is the low point they shoot for. It has been that way, however, since shortly after he was admitted. They have been giving him growth factor hormones to try and speed the process. Basically, they don’t really know what’s going on inside him. He’s not getting better, as he should, and, for some reason, could be getting a bit worse.

John is getting some hair back. I don’t know if it will fall out again or not, but it is a bit longer than peach fuzz. It could be an effect from the growth factor medication.

John started a weblog this week. He has been keeping a journal since this experience began and he decided to move to an online version, so people could stay informed and could also add their own comments. The site is

http://www.livejournal.com/users/johnvscancer

If you do respond on the blog, try not to embarrass him. I think I do enough of that as it is. There is also a link on the blog to his webcomic, Zorro and Esther.

8:06 AM |

Saturday, January 22, 2005 

Day 62

Well, John is back in Emory, the hospital that is. He woke up Thursday with a headache but chose drive himself to the clinic for his scheduled blood test. I met him there in the afternoon. He was asleep and the nurses said that he had spiked a fever of 101.5. Any fever for a person without an immune system is a serious thing, so they admitted him. Except for a few hours, I’ve been there with him until now.
The doctors have identified the cause of his fever as a blood infection. (No, he did not get sick from my cooking.) They have been watching him closely and giving him the strongest antibiotics they have. His fever has been up to 104 and down again, but averages about 101-102. Because of the headaches they may do a CAT scan today and perhaps a spinal tap to check for cancer cells in its fluid.
John has been half conscious most of the time and too worn out to hurt that much, I think. He was worried that he wouldn’t get to finish and post his cartoon yesterday, but outside of that, he’s just been resting.
Dr. Khoury is the duty doctor now, which is very good. He says that John will probably be in through next week if things go well. His immune system should have returned enough then to give him some protection and to allow him to travel for a quick trip to Seattle the following week.
That’s about where it stands for now. Not much to do but sit and give it all some time. Thanks for keeping us in mind.

9:21 AM | |

Monday, January 17, 2005 

Day 56

It’s been a week now since I last filled you in, and John has been handling the effects off his chemo well. He has been eating well, perhaps even gaining a bit of weight. He has had no signs of infection, which would mean immediate hospitalization. The only sign of the effects he has shown is occasional irritableness and some desire to get out a bit, both of which hint at some fighting back going on inside.

John’s blood pressure remains good. His white count is now down to 500, mostly lymphocytes, which is the low goal they desire from the treatment. His platelets were low and he had to have some infused Friday. He had two pints of blood on Sunday, which took most of the day at the hospital.

We met Friday with Dr. Cai (“Chi”) at Emory to discuss the possibility for a bone marrow transplant there. He was part of the team that treated John when he was hospitalized. He described John’s diagnosis as “AML from MDS” (Acute Myeloid Leukemia from Multi-Dysplasia Syndrome). That means that his precancerous white cells had probably been present for some time and had turned into AML, probably about the time he began to have stomach problems in the early Fall. AML is fairly rare. It is unusual in young people, and MDS is even rarer in someone of John’s age. In a sense, this should give John the best shot at successful treatment, because he is strong and otherwise healthy with no organs damaged by age or disease. On the other hand, he will get the only treatments they have to give, which don’t work a lot of the time and have long-term side effects he will have to live with, though we hope for a lot longer than most patients survive. Cai added that John has normal chromosomes and his platelets do not look misformed.

The MDS means that John cannot have an “autologous” transplant, where they filter his own bone marrow stem cells to try and remove the leukemic ones, because they would be putting back his own precancerous ones. Since Courtney is not a match, his only alternative is an “allogenic” transplant from an unrelated donor. Cai said that John has a 90 percent chance of finding an acceptable donor, and they have identified 28 likely candidates from the national bone marrow donor database, six of whom they have “activated”, or asked that the national center contact. One of the group had already been contacted and had to be ruled out as a donor. He had gotten a tattoo recently.

According to Dr. Cai, about 60% of unrelated bone marrow donor recipients develop some degree of GVHD. The chief problem with bone marrow transplants is GVHD, or Graft versus Host Disease, where the new immune system rejects the body it is put in. Suppressing it, at least too much, defeats the purpose of the transplant. They rate the disease on a scale of 1 (chronic with dry eyes, skin thickening, etc.) to 4 (acute with rashes, extreme diarrhea and organ damage). Patients with mild GVHD actually have better outcomes than those who have none, apparently because the new white blood cells finish the work of the chemotherapy by killing off any remaining leukemia cells. Fortunately, relatively few patients have severe GVHD, about 20%, because the treatment given is harsh and their “mortality” rate is high.

There are problems other than GVHD that happen with bone marrow transplants. All in all, the best clinics have outcomes of around 50 percent. Dr. Cai said Emory uses the same protocols as in Seattle, but he did note that the outcomes there have been as high as 70%. The national bone marrow center publishes detailed statistics on outcomes from various clinics, through 2002, and they are revealing. They suggest that patients request updated statistics from clinics they are considering. Unfortunately, Emory says they don’t have any updates. I do know that they have had a near complete turnover in staff in the past year or two and have some doctors that seem very good. The published statistics for Emory, however, were mediocre overall and poor in cases like John’s. Emory won’t do a second transplant if the first fails or if there is a relapse. They also won’t do some high risk transplants.

When they find a donor, they get an updated medical history and check a blood sample using the most recent techniques. They make sure the person is healthy and then notify the donor’s clinic. It takes a week of treatment for the recipient to be prepared. The chemo and radiation treatments are more severe and are meant to cause a bone marrow “ablasion” that completely kills off the its cells. The donation takes place during that time and is flown to the clinic where the transplant takes place. The patient stays in the hospital for about 3 weeks while the marrow “engrafts” and then has to stay nearby and be observed closely for 6 months or so. After a year the patient can sometimes go off some or all of the steroids and other immune suppressants. A normal life though is unlikely.

We will fly to Seattle on February 2 and meet with the Fred Hutchinson staff there the next day for John’s evaluation. The next week, John will start his next round of chemotherapy. He will probably need one or two more after that before his transplant.

I’m tired but glad to be taking care of John. Debbie and I are able right now to go to work and carry on life pretty well. If John is lucky, he could be able to begin thinking, but not much more, about life again somewhere beginning a year from now. It’s easier to think about the day and to do what is needed then. The time and the risks between now and then are weighty thoughts to bear.

Courtney is back at school. She went with a group skiing last weekend and ended up snowbound for an extra day. Fortunately, she said Pepperdine declared last Monday a “rain day” and called off classes. No wonder she likes life in Southern California!

Thanks to each and all for your care.

9:24 AM |

 

Day 56

It’s been a week now since I last filled you in, and John has been handling the effects off his chemo well. He has been eating well, perhaps even gaining a bit of weight. He has had no signs of infection, which would mean immediate hospitalization. The only sign of the effects he has shown is occasional irritableness and some desire to get out a bit, both of which hint at some fighting back going on inside.

John’s blood pressure remains good. His white count is now down to 500, mostly lymphocytes, which is the low goal they desire from the treatment. His platelets were low and he had to have some infused Friday. He had two pints of blood on Sunday, which took most of the day at the hospital.

We met Friday with Dr. Cai (“Chi”) at Emory to discuss the possibility for a bone marrow transplant there. He was part of the team that treated John when he was hospitalized. He described John’s diagnosis as “AML from MDS” (Acute Myeloid Leukemia from Multi-Dysplasia Syndrome). That means that his precancerous white cells had probably been present for some time and had turned into AML, probably about the time he began to have stomach problems in the early Fall. AML is fairly rare. It is unusual in young people, and MDS is even rarer in someone of John’s age. In a sense, this should give John the best shot at successful treatment, because he is strong and otherwise healthy with no organs damaged by age or disease. On the other hand, he will get the only treatments they have to give, which don’t work a lot of the time and have long-term side effects he will have to live with, though we hope for a lot longer than most patients survive. Cai added that John has normal chromosomes and his platelets do not look misformed.

The MDS means that John cannot have an “autologous” transplant, where they filter his own bone marrow stem cells to try and remove the leukemic ones, because they would be putting back his own precancerous ones. Since Courtney is not a match, his only alternative is an “allogenic” transplant from an unrelated donor. Cai said that John has a 90 percent chance of finding an acceptable donor, and they have identified 28 likely candidates from the national bone marrow donor database, six of whom they have “activated”, or asked that the national center contact. One of the group had already been contacted and had to be ruled out as a donor. He had gotten a tattoo recently.

According to Dr. Cai, about 60% of unrelated bone marrow donor recipients develop some degree of GVHD. The chief problem with bone marrow transplants is GVHD, or Graft versus Host Disease, where the new immune system rejects the body it is put in. Suppressing it, at least too much, defeats the purpose of the transplant. They rate the disease on a scale of 1 (chronic with dry eyes, skin thickening, etc.) to 4 (acute with rashes, extreme diarrhea and organ damage). Patients with mild GVHD actually have better outcomes than those who have none, apparently because the new white blood cells finish the work of the chemotherapy by killing off any remaining leukemia cells. Fortunately, relatively few patients have severe GVHD, about 20%, because the treatment given is harsh and their “mortality” rate is high.

There are problems other than GVHD that happen with bone marrow transplants. All in all, the best clinics have outcomes of around 50 percent. Dr. Cai said Emory uses the same protocols as in Seattle, but he did note that the outcomes there have been as high as 70%. The national bone marrow center publishes detailed statistics on outcomes from various clinics, through 2002, and they are revealing. They suggest that patients request updated statistics from clinics they are considering. Unfortunately, Emory says they don’t have any updates. I do know that they have had a near complete turnover in staff in the past year or two and have some doctors that seem very good. The published statistics for Emory, however, were mediocre overall and poor in cases like John’s. Emory won’t do a second transplant if the first fails or if there is a relapse. They also won’t do some high risk transplants.

When they find a donor, they get an updated medical history and check a blood sample using the most recent techniques. They make sure the person is healthy and then notify the donor’s clinic. It takes a week of treatment for the recipient to be prepared. The chemo and radiation treatments are more severe and are meant to cause a bone marrow “ablasion” that completely kills off the its cells. The donation takes place during that time and is flown to the clinic where the transplant takes place. The patient stays in the hospital for about 3 weeks while the marrow “engrafts” and then has to stay nearby and be observed closely for 6 months or so. After a year the patient can sometimes go off some or all of the steroids and other immune suppressants. A normal life though is unlikely.

We will fly to Seattle on February 2 and meet with the Fred Hutchinson staff there the next day for John’s evaluation. The next week, John will start his next round of chemotherapy. He will probably need one or two more after that before his transplant.

I’m tired but glad to be taking care of John. Debbie and I are able right now to go to work and carry on life pretty well. If John is lucky, he could be able to begin thinking, but not much more, about life again somewhere beginning a year from now. It’s easier to think about the day and to do what is needed then. The time and the risks between now and then are weighty thoughts to bear.

Courtney is back at school. She went with a group skiing last weekend and ended up snowbound for an extra day. Fortunately, she said Pepperdine declared last Monday a “rain day” and called off classes. No wonder she likes life in Southern California!

Thanks to each and all for your care.

9:23 AM | |

Monday, January 10, 2005 

Day 50

Since it has been several days, I thought I might give you an update on John. Given what he has, he is doing as well as anyone could. He finished his first round of “consolidation” chemotherapy Friday evening and so far has suffered only one bad bout of nausea - one I might add that was not attributable to my cooking! He has none of the rashes that covered his body the last time and no swelling in his feet. His heart test was fine and we see no evidence that the chemo has damaged any organs. They make every patient write his name and try to pat his head and rub his stomach on each visit to see if motor skills have been affected. For John, they just ask how his drawing is going.

There are other long-term effects from chemotherapy that can occur. You may have read that Susan Sontag died of AML this past week. Hers was an aftereffect from chemotherapy she took back in the 1970s.

John continues to take each day at a time with patience. He is occasionally a bit irritable, but who wouldn’t be with the things going on inside him. He spent much of the weekend updating his website and adding a chat room feature. While everyone else has been headed back to school, he and a friend have been creating a card game to use in teaching history to students. Each card has a picture of a famous person and a use in the game that is based on what the person is famous for. It is really very funny and quite creative.

We have an appointment in Seattle on Wednesday, February 2 with the Fred Hutchinson Cancer Center. It is the leading bone marrow transplant clinic in the world and the one with the best record for success. John should be able to travel again by then if he stays “healthy.” In the meantime, he has two checkups next week and we will meet with Emory’s bone marrow transplant team on Friday.

Emory has started the donor search process, though the results are transferable to wherever we have the transplant done. They have chosen 6 candidates from the computer search of the database. All are males from the US and the oldest is 42. The protocols are that the national center contacts the local center where the candidate is, which then locates the candidate and obtains a fresh blood sample to retest and to check for any other diseases. All this means that we are at least a month or so away, but we are fortunate that John has responded to his treatments, so time is not as critical for him as it is for some.

Please keep us in your thoughts.

9:32 AM | |

Saturday, January 08, 2005 

Day 48

Laura asked how things are going with John, so I owe you an update, I think. Given what he has, he is doing as well as anyone could be. He finished his first round of “consolidation” chemotherapy yesterday evening and so far has suffered only one bad bout of nausea - one I might add that was not attributable to my cooking! He has none of the rashes that covered his body the last time and no swelling in his feet. His heart test was fine and we see no evidence that the chemo has damaged any organs. They make every patient write his name and try to pat his head and rub his stomach on each visit to see if motor skills have been affected. For John, they just ask how his drawing is going. There are other long-term effects from chemotherapy that can occur. You may have read that Susan Sontag died of AML this past week. Hers was an aftereffect from chemotherapy she took back in the 1970s.

I can’t help but think of the treatments they have for cancer as today’s equivalent of the bloodletting they practiced hundreds of years ago. (That’s what killed George Washington). They send you to the brink of death on purpose, thinking the cancer will die first. Although it sometimes works, you have to hope they will find a better way.

Dad, John wants to come out maybe today with me and get his boxes of comics from upstairs. Let me know your schedule. We plan to keep him isolated here pretty much for the next couple of weeks, as his immune system dies and returns again. He is getting just a bit stir crazy, but is much happier here than in the hospital. He also thinks that our food is better – though that’s not saying much. Still, he is gaining weight back.

We have an appointment in Seattle on Wednesday, February 2 with the Fred Hutchinson Cancer Center. It is the leading bone marrow transplant clinic in the world and the one with the best record for success. John should be able to travel again by then if he stays “healthy.” In the meantime, he has two checkups next week and we will meet with Emory’s bone marrow transplant team on Friday. Emory has started the search process, though the results are transferable to wherever we have the transplant done. They have chosen 6 candidates from the computer search of the database. All are males from the US and the oldest is 42. The protocols are that the national center contacts the local center where the candidate is, which then locates the candidate and obtains a fresh blood sample to retest and to check for any other diseases. All this means that we are at least a month or so away, but we are fortunate that John has responded to his treatments, so time is not as critical for him as it is for some.

The neighbor’s puppy leaves this morning, which is a relief! They had to travel to a funeral on short notice, so we kept their hyperactive, unhouse-trained mutt who hadn’t completed all her shots and so had to stay isolated.

Last night, as we were washing dishes, we heard screaming from the street beside the house. I ran out and found a girl from the neighborhood lying in the side of the street bleeding from having been hit in the head by someone who stole her purse and then jumped in a waiting car. Debbie called 911 and then her boyfriend and another friend, while I held her and the neighbors searched the area. She is going to be fine, but it was the worst incident we’ve seen in this part of Midtown since we’ve been here and another reminder of how quickly life can change. I know I really value and enjoy every day with John now in ways that are much more real and less caught up in unimportant things.

I’ll keep you posted more often.

9:33 AM |

About me

  • I'm Randy Cadenhead
  • From Atlanta, Georgia
  • My son John was diagnosed in November of 2004 with Acute Myelogenous Leukemia (AML). Since then, he underwent three rounds of chemotherapy and received a bone marrow transplant in Seattle. This site is about his experience, as seen through his father's eyes. Links to John's website and to his own live journal are below.
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