Tuesday, May 31, 2005 

Day 6

Memorial Day was quiet for us here in Seattle. I spent a good part of the day catching up on work projects. John spent the day trying out different kinds of pain killers - "experimenting with drugs" I suppose.

His various blood counts have reached the bottoming out level, with his neutrophils, or white cells, at .01, or barely registrable on any scale. This is all as it should be. His mucusitis, or mouth sores, is now making it hard to swallow, but he can breathe without assistance. His eyes are now sunken with black rings around them. All as it should be. I've said this before, but someday, I hope, doctors will look back on these kinds of treatment the way we do blood-letting.

For now, John will be getting all his medications and perhaps nourishment by IV. In terms of pain killers, the rejected morphine becauuse it makes him disoriented. The second alternative caused a mild allergic reaction and the third wasn't getting the job done when I last checked. Although he is miserable, he is taking it pretty well and the nurses are doing their best to help him cope. All this should last through the week and then start to get better. We carry on.

9:33 AM | |

Monday, May 30, 2005 

Day 5

It's Memorial Day and a quiet morning. A crane came from the backwaters and perched for a time outside the window in the attic here, perhaps to see why things seem so silent. The weather is back to cool and cloudy again. I visited a seasonal fair yesterday in the morning and John in the afternoon.

He is on track, in terms of his blood counts, which are trending down as they should be. Except for mouth sores, he is not too miserable and has been walking the halls with some purpose. He is not allowed outside right now, but they expect improvement in a few days. So far, he has come pretty far.

When I am not at the hospital, I can check on him via Instant Messaging, which I have taken up to understand how it can be used in the business world. You know you are old when you say, "I remember when...." In this case, it is when we would write memos by hand and have secretaries type them on typewriters and "Wite Out" was considered one of the top ten inventions of all time (courtesy of the mother of Mike Nesmith of the Monkees, by the way). Anyway, I can check and see when he is awake and online, ask how he is doing and if he needs anything. Food isn't on his list currently, for sure, but soon, I think.

10:54 AM | |

Saturday, May 28, 2005 

Day 2

On Thursday, the temperature in Seattle rose to near 90 (and remains there still today). The air conditioning in John's wing went out and made for an uncomfortable atmosphere on top of the aftereffects of chemo and the emotional letdown after the "excitement" around the transplant. By evening, he was agitated and depressed. It took a little time to get help for him, but they gave him Ativan and he rested most of the night.

I have to say I was quite impressed at how the staff responded Friday. They were all aware of the incident and spent time with him asking the right questions and explaining why it was important and up to him to be active in his own recovery. By afternoon, he actually got the motivation to walk outside briefly with Courtney. (Yes, they allow that here, as long as the patient stays away from others.) He may do the same today, but he is receiving blood transfusions at the moment.

Today is Courtney's 19th birthday. She seems stronger and more mature from her experiences and learning to help with John's. Tonight we will have a sushi dinner, followed by an ice cream pie. Debbie returns to Atlanta tomorrow for the week and Courtney goes back on Wednesday.

I have been riding my $20 mountain bike from Goodwill to and from the clinic and hospital daily, which is a nice 5 to 6 mile round trip. The exercise and shoreline view do a lot to help with the stress of what is mostly waiting for now.

3:12 PM | |

Friday, May 27, 2005 

Day 1

About 4 AM on Wednesday morning, several hours into his transplant, John's heart rate jumped to about 200. Apparently, "these things can happen" in a bone marrow transplant, and he settled back before any intervention was needed. It did confuse and scare him a bit, though.

We had gone back to the house to rest by then, and when I called in the morning, the staff refused to tell me anything. Apparently, in the handoff from clinic to hospital, my power of attorney was not discussed. We've dealt with at least that for now. I plan to check a few more things wiith them first thing tomorrow.

John has stopped eating and is headed "down" as his body deals with the effects of the chemo. Interestingly, they are still giving him doses of a mild chemotherapy drug to make sure the stem cells do not graft before they become accustomed to their new host. I am told that this helps avoid some of the acute graft vs host disease (GVHD - remember that term).

It was in the 80s here today in Seattle and the hospital had trouble with its air conditioning in the cancer wing. The heat added to John's discomfort. By around 6 PM, he was miserable and too confused to know to ask for help. The staff wasn't as observant as it should have been, perhaps due to the shift change taking place. I think I was able to deal with that lapse as well. They seem to have grasped the need, and he is sleeping much better for now, even if it is still too warm.

I think he may need 24/7 attention soon, as he deals with the chemo and to watch for GVHD symptons. This is a very good hospital, and usually has one nurse for everry two patients, but my confidence needs reassuring this evening.

We received a huge set of balloons today from the folks at Cox. It was a nice surprise and John laughed, which was a good reaction, particularly the way he feels.

1:43 AM | |

Thursday, May 26, 2005 

Day 0 Reprise

After we left John he apparently had a scare at about 4 AM this morning. His pulse jumped to about 200 and the whole hospital went on call. Apparently in some transplants the body reacts to the presence of something that doesn't belong in this way. The problem resolved itself and John is fine now, though he says he was confused and concerned at the time.

He has had bouts of nausea and has rested most of the day, but is otherwise doing very well. Tonight he receives a mild form of chemotherapy, intended to slow the "grafting" process in which the stem cells take their place and begin forming an immune system. The concept is that some "courtship" time is needed for his blood and his body to recognize each other. Interesting.

We are all tired and it is time to rest now.

12:32 AM | |

Wednesday, May 25, 2005 

Day "0"

This morning at 1:36 AM, John's nurse sang the best rendition of "Happy Birthday" I will ever hear, as she connected the first of two bags of bone marrow stem cells to John's IV line. It took a long time for all the tests on the 400 CCs of dark red fluid in the bags, but they were done and his transplant is now, as well. What's more, John is doing well.

I'm told that the day of a bone marrow transplant is called "Day Zero" and you count your new life from there in days, weeks, months and years until your reach the point that your chance of relapse is statistically no more than that of anyone else. The word "cure" is not a medical term they use, but in that sense, all of us are mortal, so I hope to be able to make and exception for John.

It has been a long 180 days and it was a long night, but it is a crisp, cloudless morning here in Seattle and a new day to appreciate. We are headed over to meet the doctor during rounds soon and I will report any news we receive, though I expect to be told that we now wait and see if the transplant takes over the next week or two.

All our thanks again for the thoughts, care and prayers.

12:27 PM | |

Tuesday, May 24, 2005 

Day 180 - Waiting

As a short update, we learned a short time ago that John's transplant should take place sometime near midnight. I don't know yet if the package has arrived for sure, but once it does the lab has to test the cells, which takes a while.

Sigh.

4:18 PM | |

 

Day 180

When it became clear that John would require a transplant, the doctors said it would take about six months to complete. Today is 180 days from the day John was diagnosed. Looking back, other than the infection he suffered in January, the slow recovery of his immune system from January's chemotherapy, and the ups and downs of finding and keeping a donor, the process has gone well. ("Other than that that Mrs. Lincoln, how was the play," so the joke goes.)

John had some digestive problems yesterday that are unpleasant but common. Otherwise, he has kept eating a bit, resting at times and has been otherwise alert enough to be bored. His hair won't start falling out for a few days, he will grow tired from the aftereffects of the chemo and will develop mouth sores. For now though, he looks like anyone else, or at least himself, except for the tubes coming out of his chest.

Today is special because it is the "big" day. The stem cells will arrive carried by a staff member of the clinic, serving as a courier, carrying a styrofoam cooler. We don't know the donor, other than that he is a 36 year old male with similar genetic makeup to John's - a generic Anglo-American.

Immune systems are complex and hereditary, so the closer the relationship the better the match. We were told that many donors for US patients come from Germany, because when a person needs a transplant there, the whole village volunteers to be tested to find a match. The pool of donors for minority or mixed race persons can be small, and a match harder to find, which is something to keep in mind if you might be of help to someone.

We don't know when the transplant will occur, but afternoon or later seems likely. I'm sure we will know when the hospital does. Unlike other transplants, it is not much of a show. The stem cells (someday when I need to rant, I might do it over stem cell research) that have been coaxed out of the donor's marrow and harvested arrive in a bag and will be infused into John's blood through the Hickman line in his chest. He will receive treatments to avoid conflicts between his current A positive blood type and the O negative type from the donor, John's blood type to be.

It will take two to three weeks for the stem cells to start making blood. Then the risk of infection that exists now reduces and the danger that his blood will reject his body arises. To borrow a line from Peggy Mitchell, "I'll worry about that tomorrow."

I will never win an Academy Award, and this prize is much bigger, but I think my acceptance speech would be much like the appreciation I feel now for "everyone who has helped make this possible." There are family members, friends, co-workers, thoughtful strangers and many I may never know by name. We have every hope that this will work out well and when it does, I plan to thank each and every one of you individually. The community of those who have made this possible is our family's own generous village.

10:39 AM | |

Monday, May 23, 2005 

Day 179

I should be able to give more details later today after the doctors make rounds, but it is worthwhile, as a quick update, to say that John had very good day yesterday. He slept well, had little nausea, enough energy to shower and walk briefly outside the room. He even ate some of the hospital food.

John had his last treatment of chemo yesterday and today he "rests', making tomorrow the big day. We will see the doctors for a status report late in the morning, so I should be able to say more then.

9:22 AM | |

Sunday, May 22, 2005 

Day 178

It is Sunday morning in Seattle, May and chilly with damp, low clouds blowing past, boosted by the Pacific current that runs off the coast. Weather like this in which the sky spits random drops is not considered "rain" to the "webfeet" who are used to living here. Seattle is the spittoon of the gods, I suppose.

I will head over to the hospital shortly to see how John handled his first night there. After we got him settled in, he spent most of the day napping. He ate a few bites of his meals and was able to have a few online conversations, but the chemotherapy he received yesterday, on top of the four days prior, made him justifiably worn.

The doctor for John's transplant made the rounds yesterday morning and had a good sense of John's background. He asked why we came all the way out to Seattle for a transplant when Emory was so nearby. I chose only one of the two answers that applied, that we wanted to do this only once, so we came to the best clinic in the world.

The nurses seem as good as they are kind. I feel confident about the transplant, though I do worry about how effective it will be in preventing recurrence of his leukemia and about the side effects so many have. A person John met online, who had AML followed by a transplant a year ago has apparently shown signs of problems that are worrisome. Living with a disease like this means you live in a different world where it is flat and you are always aware that you might be near the edge.

Friday night, the end of the world was on John's mind in a big way, and who could blame him. The reality of the transplant and all that it entails overwhelmed him and he melted down in tears for several hours. Courtney and I sat with him, but there was nothing to say. He was better by morning and ready to go. John has a real recognition of the fact that he will not be the "same person" after all this. That kind of awareness, on top of all that can go wrong, is a lot for someone so young to carry.

We have John connected by computer, but cell phones are forbidden on the floor, because of the delicate heart equipment needed for some patients. I don't think I ought to post his room phone number online, and he isn't up for much talking right now anyway. If you do want to give him a call, send me an email and I can pass it on.

Off now to bike over to the hospital.

11:36 AM | |

Friday, May 20, 2005 

Day 176

John has tolerated his outpatient chemotherapy relatively well overall and wraps it up during the night with a dose at 2 AM. Actually the "dose" is 26 pills. John suggested we count how many he takes in a day. It has to be nearly 125 right now.

He is wearing down from the treatments and has spent most of today half asleep. The anti-nausea drugs make him groggy. This morning once again, he worried the staff over his stupor and lack of balance. Under the circumstances, that is a nice way to be, I'd say. He has eaten well enough today, but he needs to get more liquids in him than he is able to drink.

I've helped him pack for the hospital this afternoon. We go over at 8 AM and check him in directly to his room. He will receive Cytoxin treatments tomorrow and Sunday. Courtney and John took photos of him last night, while he still has hair. Courtney spent the afternoon enjoying the town with her mom.

I don't know if its just me, but I've noticed a number of post transplant patients at the clinic over the past few days. Some of the common side effects from the "graft vs. host disease" and steroids and other things they do to deal with its effects are darkened, thick skin and puffiness. Some of the children look very sad in the eyes behind those swollen faces. Life can be unfair. I've told John that beating his disease will make him a bigger success than anything he might ever do.

John asked me today if I thought he would be able to "do things" when we return to Atlanta. I told him there would be doctor visits twice a week or thereabouts, but I thought he would be OK. He said he would probably have to live with us a while, but would like to see about getting a job before he returns to finish at Emory in January, which is his hope - to get back to life, a year or so later and not so much worse for the wear.

7:27 PM | |

Thursday, May 19, 2005 

Day 175

The effects of the chemotherapy began to show yesterday afternoon. Through the blur caused by the anti seizure and nausea prevention drugs, you could see John begin to tire and weaken somewhat. By the afternoon, it was nearly impossible to coax him to eat or to take a shower. All this is to be expected, but his will to make his own decisions remained strong, even though his judgment was weakened.

All this made everyone, John included, frustrated with him and each other. I think we may take John back and forth to the clinic today, rather than stay there between blood tests. Being able to rest while waiting may reduce the tedium and conserve his strength.

When I picked up John's next day's doses of chemo last night, I spoke to his nurse about John's state. She asked if we needed to admit him to the hospital early, which I said wasn't necessary. She mentioned then that they worried about the fact that John didn't show the kind of fighting spirit that helps many cope with what he has, is and will go through. It was a good observation I thought, but as with the physical disease, you take your patients in whatever mental state you find them. John is young and this experience will do more inside him than change his bone marrow. We all cope in our own way and thus far his has been to take the process as it comes to him. The whole process has been too much for him to cope with, but he has handled each day's challenges as they have come to him.

John's blood type will change after the transplant from A positive to O negative, an interesting fact and something they know how to cope with during the physical transition. That fact and the notion that the DNA of his blood will not match his tissue, has led to some interesting conversation. John has been thinking of giving a name to the alterego that will live inside him. He will have a more literal, if not true, excuse than "the devil made me do it" for misbehaving or the like. I suggested he consider a Mary Shelley character, such as Igor, as a name for his new inner identity or perhaps a character with an accent that he could affect for fun.

John's mother comes to town tonight to stay for a time while the transplant takes place. I haven't mentioned her much and really have very little to do with her. We don't communicate much and differ too much when we do. I expect she will be in town for a week or two, and I hope that will give some comfort to John. His past two hospitalizations conflicted with vacation trips she had scheduled, but her presence and support this time may give him an added boost.

It is early here, after a night of little sleep, but it is time now to take on another day.

8:32 AM | |

Wednesday, May 18, 2005 

Day 174

The first day of what we hope will be John's last round of chemotherapy was yesterday. He will have four days of Busulfin, given by pill, with regular blood tests to help control the amount of toxin in his body.

Other than some stomach upset, which was controlled with the addition of Ativan to what he is taking, he handled the first day well. In fact, the Zofran and Dilantin seem to make him a bit buzzed, like someone on a silly drunk. He was still up last night at 2 AM enjoing talking online with friends when I gave him another round of chemo drugs to take. It is good that he feels well now, because he is going to have the mother of all "hangovers" in a few days.

In most clinics, the amount of chemotherapy administered is determined by body weight. Here, and because of the toxicity of Busulfin, they take blood tests regularly, run the samples through a centrifuge and measure the speed the drug is metabolized in the body to keep the chemicals at a "safe" level. The results of yesterday's seven tests found that John's metabolism is slow and that he only needs two-thirds of what someone his size might be given. Too much chemotherapy can be toxic to organs, particularly the heart, kidneys and liver, leading in some cases to the need for organ transplants. If you needed tangible evidence that coming all the way out here was worthwhile, the extra monitoring of chemo done here serves well.

The weather was nice yesterday and Courtney walked the 2.5 miles from the house to the clinic late in the morning to join us for the afternoon. That's a sign that she is doing well. She and John have always been connected and being herer while he is ill has helped her. There is a door connecting John and Courtney's two rooms here in the house and it stays open most of the time now. Courtney got an Ipod similar to John's for her birthday and they spent the evening sitting on the floor (he was less dizzy there) loading songs from her computer onto hers.

Today, "we" start taking pills at 7 AM and continue blood tests at the clinic. I'm told John will begin to feel the effects of the Busulfin perhaps today. For now, though, things are going well.

9:03 AM | |

Tuesday, May 17, 2005 

Day 173

This afternoon we had "Chemo Teaching" class where John and I were instructed on the series of medications he will be taking this week, the precautions to take and what should transpire between now and Saturday when he enters the hospital.

The short version starts with him "loading" up on an anti epilepsy drug to stave off one effect of the drug that starts tomorrow - Busulfin, referred to as "radiation in a pill." In the morning at 7:00 he takes an anti-nausea drug and at 8:00 he takes (I'm not kidding) 40 Busulfin pills. the drug is meant to prevent stem cells from forming into mature cells . The drug is so strong that the pill are coated in capsule form and I'm still not allowed to touch them without gloves. Even the containers they come in have to be burned in special furnaces. He has blood drawn every half hour and run through a centrifuge and mass spectrometer to see how much he is processing over time.

This goes on for four days, although the testing fades over time. He can only eat at certain times, if he can eat. I won't mention what you have to do if he gets sick to his stomach. By Saturday, he is expected to be glad to be going to the hospital.

John has so many medications right now that we have a different daily spreadsheet of them and when they are taken. I took digital pictures of each type of pill next to its bottle, so I could identify them by name if I saw one out of context.

John coped, somewhat, with all of this information by turning to me and saying, "You got all that right? So, you will tell me what to do when the time comes?" He knew what was said, but I know it must help to be able to think only about the next step and not those that will follow.

At 7:00 in the morning, I give him an anti-nausea drug to take effect before he takes his first 40 Busulfin pills. He mentioned a couple of things this afternoon about the hospital that annoyed him, but never ventured beyond. I suppose the "big" things don't hurt in the way the smaller things do that you have the perspective to recognize as pain. Anyway, we are ready and everything else seems set as well.

One of Courtney's close High School friends was in town today and they got together for the afternoon and evening. Both seemed grown since I saw them last together.

Another of the many ironies that mark the days was the news report today of a study of Revlimid, a drug related to Thalidomide, that has been found to have a remarkable impact on MDS, the underlying disease behind John's leukemia. It would seem to be a false hope for John, because they haven't found the genetic cause of his form of AML to know if the drug might help. Also, it is only in early clinical studies at this point (sponsored by the manufacturer). I didn't find the time or purpose to mention the news to John. He has mentioned several times that the trials he is involved in will at least be of help to others in the future. Some hope, I suppose, is for others in another day and time.

It is late and tomorrow will begin early and be long.

12:18 AM | |

Sunday, May 15, 2005 

Day 172

It's early this Sunday morning and we are "Soaking in Seattle" here in the attic that serves as our law office, and home away from.... No home is where you find those that matter most. By the end of the week that place will be a room in the University of Washington Hospital acros the lake.

Monday afternoon, John's chemotherapy starts with a meeting with the doctors for "chemo teaching", outlining the next few days. He starts with Dilantin to counter the seizures some suffer from the high doses of toxins John will recieve. Tuesday morning he begins receiving Busulfan in carefully monitored doses for four days to kill off his existing bone marrow, both good and bad and, we hope, any leukemia blasts hiding in his body.

On Saturday, we should check John in to the hospital, where he will stay for about three weeks. There will be more chemotherapy that day and Sunday, followed by a day of "rest" on Monday. His transplant should finally take place on Tuesday, May 24, as soon as his marrow cells arrive from wherever his donor is located.

John has been writing and preloading entries for his webcomic because he won't have the energy to keep it up to date for a while. I've been doing my best to see that he is well and well fed for the ordeal. Being emotionally prepared has to be his own job, but he does have plenty of support, which means a great deal to him and all of us.

Yesterday, John and Courtney went to the Seattle Art Museum. For dinner, they walked up the street and picked up some Asian food. There seems to be a competition "on" Queen Anne", as they refer to the area just north of the city center, to see how many coffee shops and Thai restaurants can be fit on the head of this hill. They came back and watched a five hour cartoon marathon of some kind. John knows the names and work of all the artists and writers, the way some older folk know the interweavings among the Byrds, Buffalo Springfield, the Hollies, CSNY and other echoes we recall.

We had our first visitor yesterday, a friend from New Hampshire, out this way for other reasons. I rode my bike in the morning around Lake Union - an interesting hour and a half ride.

Sunday afternoons in Seattle are centered around outdoor markets that mushroom in the morning in streets lined with shops. If the rain clears, we may visit a few. Debbie and Courtney have taken up making a blanket for John. It may not come out looking anything like a blanket, but the project seems another way to knit together our small, odd family here in this place that, for now, is home.

11:28 AM | |

Thursday, May 12, 2005 

Day 169

One of the first things we were told was that the schedules you are given will change and that, for sure, is true. As of this afternoon, John has tomorrow and the weekend "off". Monday, he has blood work done and begins a drug to prevent seizures (the thought alone coud cause one) from the chemotherapy that comes. Beginning Tuesday morning, he is given busulfin, which is apparently so toxic that he must have blood tests every two hours to measure its ingestion. This goes on for four days. On Saturday, the 21st he goes into the hospital for two days of inpatient chemo. Monday is a "day of rest". His transplant takes place on Tuesday, May 24.

We met John's new rotational doctor today and learned this latest schedule, which seems pretty secure. John seems more comfortable with what is to come now. His only open concern is the itching from where his chest was shaved for his port. He is handling the rest within his zone of acceptance, if not comfort. Anyone with any sense would know how immense and complex "the rest" can be.

It is a great comfort to him, us and herself to have Courtney here in this time. Her presence is a gift and a help to her as well.

Our nights end early here, because Debbie and I start the day on Eastern time each morning.
The distraction of work is a blessing. We both get pleasure out of our work, but these days, work is a gift to enjoy and we do.

Whenever I visit an island somewhere, I leave looking back and memorize how it looks, thinking I might never come back. Every day here and now is like that. I suppose that is how all ought to all live, only without the lingering lens some of us see through.

John has been enjoying online polls recently about where you fit in various odd categories. We all took one I found today on religion. I consider such things the deepest and most personal of topics, but it was fun to compare where we fell in the uneducated online world: open, caring, sincere and intelligent spanned the range we all fell within. I suppose the rest is, and should be, between you and "God". This is a valuable time to find those answers.

11:51 PM | |

Tuesday, May 10, 2005 

Day 167

Yesterday, John had his "Hickman line" put in. Delivering chemotheraphy "poisons" and all the months of blood and platelet infusions by IV would wear out all the veins you could find in a patient. To prevent that and simplify the process of delivery, they now install semi-permanent IV lines into the body with specially designed plugs to connect up with instead of using needles.

"Everyone who is anyone" at the Clinic has one and the lucky ones get theirs installed by Dr. Hickman, the inventor of the leading method. Dr. Hickman is maybe 70 and comes in one day a week to install his ports. He has a humorous bedside manner and took the time to show John how the port works. (Reader Alert - Anyone with a weak stomach should skip the next paragraph.)

A tube is inserted under the skin in the chest and threaded up to the neck, where it is inserted into an artery and run down to the opening of the heart. At the point where the tube exits the chest, it divides into two lines with twist-on plugs for connecting to whatever the clinic needs to give you. The lines have special failsafe clamps and are kept from dangling by a lanyard around the neck. After a week or two, the entry point heals over and you just have these tubes hanging out of you. Apart from things like lines opening up by accident or shifting around in the body, the biggest risk is from infection that can enter through the port or collect there. The reason that it leads to the heart is to be able to infuse chemotherapy to the point where it can be most quickly dispersed without collecting in one place and damaging the area. I should have mentioned that this is done under partial anesthesia.

Today we go for training in the care and use of the port. It has to have anti-coagulant shot into it daily and other treatments that are administered outside of the clinic. I did the Heparin anti-coagulants for John's arm port for several months, until he took them over for himself.

It looks like John will have radiation treatments on Monday. Otherwise, his schedule is about the same. Debbie is back and halfway over her jet lag, and Courtney is participating well with John's medical schedule.

Ted Kingsley included a thoughtful news item on John in his monthly ACC news article in the Fulton County Daily Report. He mentioned the good that can be accomplished by being tested as a potential donor. It's a nice feeling to find that people you know or have worked with can be so caring and thoughtful. It's one of those things that is always a surprise and that you never really get used to. I could mention a number of others who have passed on kind thoughts, but they deserve their privacy. We all appreciate them though.

11:07 AM | |

Sunday, May 08, 2005 

Day 165

Once a transplant is set, things begin to happen rapidly. John will receive platelets today to give his blood the ability to clot on Monday when he has his existing port removed and the Hickman port placed in his chest. On Tuesday through Thursday, in addition to daily tests, we are both trained on the care of his port and on his chemotherapy. Friday will be the first day of chemo, which will be on an outpatient basis. By Sunday, he will be in the hospital for more chemotherapy and the transplant, which will be around Tuesday, we think.

John has continued to feel a little ill, but he has eaten well and his spirits have improved with Courtney around. I hope that his problems are just due to "bad" blood and not anything worse. If so, the platelets may help.

Courtney has been doing well. I'm sure it helps to be here and not have to worry about John from a distance. She seems to be taking good care of herself and eating well too. She and John spent a good part of the day shopping. Yesterday was "free comic day" at the comic book shops. We also made a trip to Barnes and Noble.

Last night, we watched Pepperdine win the national men's volleyball championship, or at least they did because I fell asleep halfway through. Courtney has walked down to one of the local street markets this morning for a bit of shopping. John is playing video games and I am trying to clean house because Debbie returns tomorrow and four people in one small house will not leave room for any mess.

11:50 AM | |

Friday, May 06, 2005 

Day 163 again

About 4 PM, after several calls from me for any news and a misdirectional response from the clinic to John that they would call when they knew something, we learned that John's donor has been cleared. Subject to some paperwork we can go forward with the transplant. Monday he will have his infusion port replaced and his chemotherapy could start on Thursday. If all goes well, we will have lost one or two weeks and a few more hairs from my head.

Now our most recent worries have been replaced with those that were scheduled for this point - will the transplant "work." At least those are better things to be concerned over.

So much for the news flash. We are all watching John's stomach problems, which were the first sign of leukemia before. At least now we are closer to a possible solution. Tomorrow will bring its own worries and plenty of planning around the new schedule. Tonight there is time to breathe All three of us are relieved and grateful.

11:21 PM | |

 

Day 163

Today was the day John was to have had his transplant - in the parlance of the doctors, "Day 1", which is a way of counting rich with meanings. As it was, we went to the clinic for an early appointment hoping to at least learn the outcome of the donor's medical tests.

Each of the nurses came in followed in time by the doctor. Each said he or she had calls in to the National Center, but had heard nothing. They didn't try to explain the delay or interpret it, though there is nothing favorable that can be read from a continued lack of news. I tried to probe about why their calls weren't being returned and got no explanation. When I asked about the status of the search for an alternate donor, theyreplied that they didn't know.

Some of the gap in communication might be related to the change over in staff that has been taking place. Two members of the "Tan" team that John is assigned to have had substitutes in place for the past week. The rotating PA changed this week and his doctor changes this Saturday. Since one was new and the other is finishing his month of duty, I suppose that their follow-up might not have been as persistent as I would expect. It is hard to know, but we were disappointed, and I was disappointed in more than the "answer."

John was pretty down about the situation for most of the day. For that matter, I was too. We talked about it at several points thought over how hard it must be for those waiting for organ transplants - waiting without knowing for how long and waiting for someone to die. We are "fortunate" not to have quite the same kind or waiting to do. It is hard though for both of us to be here and isolated from the rest of our lives, some 4000 miles away.

Courtney's presence has helped in dealing with the wait and the news. She seems to have benefitted herself by being here and seeing John otherwise himself. She and I visited Pike's Market late in the day and I took her to thrift shop at the Goodwill "superstore" here in town. (Thrift shopping is apparently the latest in-thing to do.)

I could go on and feel sorry for myself, but there isn't much point to it. Tomorrow, I hope, is another day and one more to face and look for some hope in.

1:19 AM | |

Wednesday, May 04, 2005 

Day 162

Courtney flew in yesterday afternoon from LA after finishing her year at Pepperdine. She has fought against her own troubles during the year and, while she has suffered and prevailed, she has a lot still to overcome. I think she is relieved to find John here and "well." We did a bit of touring and shopping both yesterday and late today and each seemed renewed from being together. The layer of comfort that offers may help each of the three of us deal with what, I hope, has to be a period few have to live through.
Anyway, we went up to Capitol Hill and shopped late in the afternoon. We then picked up some food and make dinner. John's stamina seemed to fade as the day progressed, and he seemed like he might be feeling ill, or at least tired. He and I are both carefull about the slightest hint of concern. You get to this point in the day and somehow realize how tiring it is to.... What else or more might anyone ever want to do?

12:26 AM | |

Sunday, May 01, 2005 

Day 160

Yesterday's highlight for John and me was seeing "The Hitchhiker's Guide to the Galaxy." We are goth fans of Douglas Adams' sense of humor and his books. Afterwards, we found an authentic Mexican restaurant. Otherwise, it has been quiet here.

Work helps to bide time, but even with that, cooking and keeping anything John might come in contact with clean, there is too much time left to wait and to worry. I've taken up jigsaw puzzles to fill the gaps in time and distract my thoughts. John stays busy with drawing and website projects. This past week, he was guest writer for another webcomic. Creating and now distributing his print "zine" has been a new distraction for him. He is also enjoying is new Playstation Portable gift. With that, his cellphone and his new Ipod, he is as wired as anyone his age can get.

Courtney arrives for a visit on Monday. That will be good for John, as it will for her. It has had to add to her own needs to be away with John ill. She also deserves the reward of a "vacation" for the hard personal and academic work she has put in over the past semester. I'm learning that children are yours for life and that they never really go away. I guess I should add, "I hope not", although I do hope the circumstances change for the better.

I received a kind note yesterday in the mail from another lawyer, once a co-worker. It was thoughtfully written, sincere and very much a surprise. It also came on a day when worry had been harder than usual to manage. That was really the highlight of the day.

12:05 PM | |

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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