Wednesday, June 29, 2005 

Day 32

Today is my 51st birthday and, all in all, it's all I could ask for. I received a few gifts - a bamboo bonsai, some fun jigsaw puzzles and a print of three golden maple-planked Beetle Cat sailboats I know from the dock down the hill at the Wooden Boat Center. I cooked dinner for thekids and carried a plate up to Debbie, who is still in quarantine with her cold (well, that I could do without that, for sure).

The best gift though was a moment in the kitchen when I heard John laugh out loud spontaneously from the other room. He was watching TV, but it was a sound I hadn't heard in a very long time, and it caused me to look across the dining room at him and smile. When you get a little old, little things seem to matter a little more.

Courtney is reading a novel about the history of philosophy. (I am not making this up.) At dinner she mentioned the story, and I said the book must end up in some existential way, (stick with me here) because that is the way so many existentialists presented their views - ironically, by observing life in the third person. John, who is much more observant than his age, answered with a question, "Isn't that how everyone lives?" I said that I am living this time now for all it is worth.

That is definitely not the way to keep a conversation going at the dinner table, so now I'm upstairs updating this blog with whatever, because I am glad to say that things continue to improve. We may have some preliminary word on John's bone marrow biopsy tomorrow, and I really expect good news, and another good day to come.

11:47 PM | |

Monday, June 27, 2005 

Day 31

The Prednisone seems to have helped John. Since Saturday, he has improved overall, with something of a appetite, less nausea, and more of a human's energy level, rather than that of a slug on sedatives. We even took an hour out Sunday afternoon to go to the bookstore, which is the adventures around the town. That was actually the first trip out he has taken since he was released from the hospital. He has developed, um, what would be a polite term, a hurried need for quiet time alone, which, apart from being unpleasant, could be a sign of GVHD, a digestive infection or just bad cooking. Mostly though, John is better, and that is good.

Tomorrow John has his first post-transplant bone marrow biopsy. That's when they stick a needle the size of a first grade pencil into your hip bone and then suck the insides out. John's actually gotten "used to" that and can now grade both the nurses and the anesthesiologists on their skills. He should have one more before we go home.

The purpose of the test is to look directly into where the leukemia began, rather than indirectly, through the blood cells the marrow forms. Anything less than 5% "blast" or malformed cells is considered remission. Detecting none is even better, but "Cure" is only used by people in this business who happen to like the rock group of the same name. John's engraftment seems strong, so I really expect good results from this test, even though there are plenty of patients who relapse.

One of the odd things about transplants is that a little GVHD can be a good thing, because it means the new immune system is able to attack things it deems foreign, including blast or leukemia cells. A little bad can be good, which seems to be a footnoted exception to the rule that two wrongs don't...

Debbie arrived back today from her ABA meetings with hints of a sore throat. She has been quarantined upstairs and I disinfect myself anytime I pass between floors. Courtney returns Tuesday night, which will be a treat for everyone, but especially John.

Over the weekend on Saturday and Sunday mornings, I rode my $20 ten speed bike on two hour
Not bad for being 50 and 363 days old. The interesting thing is that, as long as you are peddling fast enough, you can stay ahead of all the things that life tries to load onto your back.

Today was the last day of the Supreme Court's term and there were two big cases that the court saved until the end to decide. One had an indirect effect on a lot of the customers that I "work for", so to speak. It would have been good to be able to address what happened from the office, but I'm hopeful that I will be back for good soon.

8:37 PM | |

Saturday, June 25, 2005 

Day 29

John seemed better for most of Friday, well enough watch episodes of Buffy the Vampire Slayer and spend a little time online. The account he wrote (http://www.livejournal.com/users/johnvscancer/) of Thurday's experience with the doctor was hard to read, but voicing it probably helped him cope. I called patient relations at the clinic and asked for their help in working with this doctor or a physician change. While the person I talked to was sympathetic, nothing came of it Friday.

John had a platelet infusion in the afternoon on the triage floor at the clinic. As they were preparing to start, John's current PA nurse made a point of coming by to check and spend some time talking. It was a thoughtful gesture and it was clear that he, the PA, felt for John and was trying to help. In a few days, he will rotate out and John will have a new PA. The doctor will rotate out a week later, unless we do something about his assignment to John earlier.

John's triage nurse examined John carefully (spending more time than the combined time his doctor had to date) and became concerned over rashes he had begun to have, which can be signs of GVHD. As John talked with the PA, he began to develop blotches of rashes all over his body, which came and went randomly for the next two hours. His nurse was concerned enough that she essentially never left the room and finally gave him a dose of Benadryl direct into his blood stream. This, of course, put him to sleep for several hours, but I was able to get him home in the process and he was much better when he woke up in time to go back to bed. He slept well through the night.

His nurse had several others examine John and took blood cultures to check for any infection, so we may learn more by Monday. You have to hope that John doesn't have a problem taking steroids, because there isn't much of anything else that can be done to deal with GVHD.

Today's project will be to work on finding foods that John will be willing to eat. He has most of his taste back, but no interest in eating. At times he says he feels worse than he did in the hospital, but hopefully we will see improvement soon.

9:57 AM | |

Friday, June 24, 2005 

Day 28

I don't know what day or time it is wherever, but it is late Thursday here. We received the results of John's endoscopic biopsy this afternoon and it shows a still mild case of GVHD. He starts prednisone in the morning to supress his new immune system, including the early signs of rejecting its new host. These steroids have side effects that can be worse than the disease, but there is no known, or at least proven, alternative, so there isn't much of a choice. Among the "side effects" are an increased risk of infection, emotional ups and downs, brittle bones, muscle loss, significant weight gain, and diabetes. There may have been more, but John and I had passed out by the time the list reached that point.

The conceptual problem with GVHD is the "do no harm" concern. You have replaced one potentially terminal disease, leukemia, with another. The only treatment is to supress the new immune system at the risk of relapse of the leukemia or infection. It is easy to understand why doctors with any heart might struggle with the issue. It is the extreme version of the country cure for a headache: Hit your thumb with a hammer until that hurts more (It's my Dad's joke, but Debbie will tell you I've tried it.)

The really sad thing from today is the way John was treated by his current doctor. John is only officially an adult, and one in a vulnerable situation, not to mention feeling pretty sick. His current doctor, who will remain nameless only because he hasn't bothered to introduce himself, spent about five minutes with John, asked a few questions and then said:
  1. Your biopsy shows signs of GVHD
  2. The physical pain you "apparently" have isn't consitent with the GVHD numbers,

so we are going to only half treat the GVHD and see if it changes how you feel.

Now, I admit that I am John's dad, but when the doctor then turned and left the room, John was the one who started crying, thinking he had been told he was lying. It was a hard and sad afternoon and evening trying to console my son over being hurt by his own doctor. I still have a lot of work to do to mend that wound.

12:52 AM | |

Wednesday, June 22, 2005 

Day 27

John received two rounds of platelet transfusions from 8:30 this morning until 1:00 PM. As soon as they had the risks of bleeding reduced, they put him under for an endoscopy. His "day off" ended at 4:30, and we celebrated with an unauthorized side trip to the comic store for the week's new issues.


Last night was worse in terms of pain than any before, but I persuaded John and the clinic that I could manage him and the pain without admiting him to the hospital. It took some work, but his nausea and the pain in his right side subsided enough for him to sleep for most of the night, discounting time out for IV changes and pills.

After John's endoscopy, I asked the (very good) nurse who assisted what they had found. John was asleep, but she responed by staring at me and answering a different question, adding a minute later that the doctor would be by soon. I can't count the ways of saying how crazy that makes me.

This particular doctor is the one that John describes as "crazy" because he seems nervous when asking questions and responds to each answer with, "I see, I see." All that aside, he is also very good. Anyway, he said that John's stomach was red and inflamed (it is supposed to be white inside). They took biposies that will need testing, but what they found was consitent with the signs from yesterday of GVHD. That was when he gave me the same look that I got from the nurse. It makes me wonder if I'm the crazy one.

The doctor added that John's blood counts and liver numbers continue to be healthy, which I think means that we are looking at some serious troubles ahead, but that his body is capable of fighting back. The biopsy results should be back tomorrow, but I expect that John will start a steroid regimine and stronger drugs to supress his immune system. Roller coasters like this one are beyond the wickedest of engineer's minds.

The doctor confirmed again the presence of fluids in John's "gut" and said that the inflamation in his liver could be causing the pain in John's side. He has mild rashes and constant itching to add to the hints of GVHD.
I have seen children being treated with steroids as they passed by in wheelchairs in the clinic. Their eyes catch yours, but the rest of their bodies look bloated and grey, almost like balloons and nothing like Jose Canseco claims.
Figuring that John didn't need any more liver challenges, I put him on a diet of carbs and low to no fat delivered in small and frequent snacks. He seemed to tolerate it well and is sleeping well enough for now. I'll be up often to change his IV and see...
well, so much for that, I guess. He's up and sick.

11:04 PM | |

Tuesday, June 21, 2005 

Day 26, not quite yet or perhaps early.

The solstice in Washington - the sun never seems to set on the worries that seem to shadow the day and what passes for the night. My call this morning was really welcome, first for the chance to be part of the conversation of work and also because it was light by then anyway. Actually, I really like where I work and what I get to do. That pleasure is one of those things you can count on one hand as mattering most in life, at least for me.

Only this is not really about me, so this morning John's temperature was down enough that I was able to let him sleep until the clinic could see him at 11:30. He was otherwise not really better, and, after a lot of medical waffling, the doctor came in and ordered a series of tests. In a sense, all that may sound less than sincere, but the fact is that John's counts continue to rise well (with the exception of platelets, which can be quirky leading indicators). It is his qualitative signs that don't seem so good.

I had left a message for John's lead nurse in the evening, before our hospital trip, mentioning my concerns over John's malaise and the fact that he hadn't been seen by a doctor for more than five minutes since he got out of the hospital or (more importantly) by any one nurse more than twice. We went in at 11:30, John got a serious going over, and hen they found an opportunity to bring in the doctor. The doctors and PAs work here, as at Emory, on monthly rotations. This particular one, seems as good as any, but equally and more about decisiveness than bedside manner - not a criticism, mind you.

They quickly decided to start with an ultrasound test, followed by an endoscopy. Within minutes, they found the gastro doctors somewhere on the floor and John had an initial exam by them. Blood tests followed shortly and then the ultrasound test at 3:30. John and I joked about seeing if he was pregnant, but he ended up spending 40 minutes on the screen, while I sat in the lobby watching that rarest of Seattle weather, a thunderstorm, roll in.

The lead gastro doctor eventually came through the door, looked me in the eye from across the room, took one step my way, then turned and rushed oiff to the elevator. I'm not kidding. There are moments when there is nothing richer than being a father and then, for some, those that leave you in the kind of void that is all the worse for knowing what it seems to say.

The doctor had mentioned to John that he should check with the transplant team before leaving. After an hour or so of waiting, John, feeling badly anyway, decided maybe we should leave. I insisted on not leaving and eventually and after a number of pages, the PA nurse, who was either busy or not so keen on delivering news, came by. Ultrasound isn't supposed to be all that much help here, but he said that they found some fluid in John's abdomen, what appeared to be liver inflamation and possibly his spleen. He also mentioned something about needing to look more at the pancreas.

John has been aware and watchful over GVHD risks, but I don't think he was willing to hear the things I heard or read into what I heard. Being the "optomist", I added that his blood counts continued to improve quite well, which was a good sign, although I understand that too quick or strong an engraftment can result in the transplanted immune system attacking its new host.

Not to wander off into whatever, but fathers and sons seem to need to build the kind of wall between them that Robert Frost felt make good neighbors. There are things you just don't discuss across whatever divides a generation. Whatever there may have been between us of that distance, has narrowed over the past few months, but John rightfully still has a place of his own reserved to cope and I can sense him working that soil.

I'm not sure what I meant made it through that mixture of metaphors, but I think we are both wondering if all this is a bad sign, a mixed signal or nothing at all. So, tomorrow John gets platelets before his procedure and his bone marrow biopsy will wait until Tuesday. Hopefully, he will rest well enough to avoid another trip to the hospital. I could certainly use the sleep.

Well, perhaps not. Courtney called as I was finishing up. As we talked, she said that John was on the phone with mom and mentioned that he felt worse. The message got to me upstairs via 7000 miles, I checked and he was feeling much worse. I hate to leave things hanging, but I'm signing off to check with the doctors again.

10:44 PM | |

 

Day 25 - Updated

I've updated this entry below:

I'm sure there is no written language that can capture in script the sound of worry, frustration, patience and doubt in the sigh that I feel. I'm sure that it is not my cooking, but John remains and is again, sick for another night. Last night he threw up the tastefully bland pasta dish I prepared and tonight, the hamburger and tater tots alternative led to pains in his side. One of the places that GVHD attacks is in the "gut." So I worry.

The PA and team nurse prescribed another antinausea drug today because John seemed to show signs of increasing discomfort and lack of energy (even for him). They don't seem seriously concerned, but then he has not had consistent treatment from the same people since he left the hospital. In the 10 days, he has been seen by one doctor for less than three minutes and I don't remember his name, because he never even introduced himself. Only one person has actually seen him twice in that time. John is young and he bounced back quickly at first, but that is not reason enough for second rate attention from a world class place. Of course, I'm not an independent judge, being a bit biased, so....

I have to check John's temperature again - it was 101 a few minutes ago - and I have a conference call in a short time from now, so....

Update of sorts. About 11:30 PM, John began having sharp pains in his side and more nausea. He developed a fever of 101.5, which is above the level at which we have to call in to the hospital. When John was last released, I hoped that we might never be back, but as it turned out, we went in and stayed until 1:30 AM. The duty doctor and charge nurse ran various tests, took x-rays and poked and scoped his entire body.

I had a conference call at 6:00 AM, Seattle time, but I got enough sleep to handle the morning call and to revise a 20 page contract, all without falling back asleep - proof enough, if it was needed, that I love what I do for a living. On the otherhand, maybe I'm delirious.

It's already noon in Atlanta, but most of the world here is just getting started for the day. I'm sure we will be over at the clinic before long for most of the day. At least John was able to sleep once we got back.

1:21 AM | |

Saturday, June 18, 2005 

Day 22

There isn't much to report concerning John, I'm glad to say. He is doing well by all measures. His white blood count is now 4.8, which is right at the low side of normal. Despite his nosebleeds, which have stopped, his platelet count looks good. John's energy level is poor, but he has enough to play video games and doesn't need nausea or pain medication most of the time. He doesn't have much of an appetite, but he did eat most of a steak and potato dinner last night. Finding things that taste normal to him is no easy project.

Debbie flew back to Atlanta this morning for the week. Yesterday afternoon, she and I took an hour or so and sailed on Lake Union. The lake serves as a seaplane landing strip and I realized as a dozen or more took off, landed and taxied around us that there may be no right of way rules for an encounter between a seaplane and a sailboat. One plane chose to "dock" at the spot where we planned, though it was impossible to tell and we circled each other for a time in what had to be a bizarre appearing dance.

Looking forward to next week, John will have a bone marrow biopsy on Wednesday, which will give a good picture of the success of his transplant and indicate whether any leukemia blast cells remain. Based on all the indications we have at this point, we expect to hear good news, although it will take perhaps a week for the full results to come in.

11:58 AM | |

Thursday, June 16, 2005 

Day 20

One day has stretched into two and so I've added below to my earlier report.

I am happy to say that today has come and passed with little to say. On a good day from where I sit you can see Mount Baker to the north, the Olympic and Cascade mountains to the west and the east and the angular white face of Ranier to the south. Today was a good day with one round of nausea, one eye still tearing and the early weariness that comes when there is healing going on inside. When the worst you hear is "I am so over this", it means the clouds are far enough away to get some perspective on where you are.

John's picture, so far, is good. He even has rather peach fuzz on his head, although the color for some reason is white. He was able to shop a while with Debbie and continues to manage his own IV, though he allows me to manage his pharmacy of pills. Having John out of the hospital has allowed Debbie and me to put in full days of work, even if via telecommuting. Tomorrow we will get the first blood tests since Monday, so we are looking for more progress to pass and another good day.
. . . . . . .
I wrote all the above rather late, at what seems was actually Thursday on the East Coast. No sooner had I fallen asleep than John woke me saying that he had a nosebleed. As it turned out, blood was running out his nose and mouth about as bad as I've ever seen on anyone. He was scared, but I went into first aid mode, laying him back with his head resting but elevated and so on. After about 45 minutes of ice, pressure on the blood vessel and calming down, we got it stopped for the night. He had a similar, but milder incident during the day.

We had John's routine visit this afternoon and they said these things can happen - not comforting at all if you are the one bleeding or who has to stop it. John is still well ahead in terms of his recovery from their point of view. "Patience" and fluids are their suggestions at this point.

John's White Blood Count is now 4.86, which is actually within the normal range for the first time this year. His ANC or neutrophils, which are the specific disease fighting cells are now up to the level that he had before he went into the hospital for the transplant.

It has been a long 24 hours for it to be the same day, so I am going to try to rest.

12:51 AM | |

 

Day 20

I am happy to say that today has come and passed with little to say. On a good day from where I sit you can see Mount Baker to the north, the Olympic and Cascade mountains to the west and the east and the angular white face of Ranier to the south. Today was a good day with one round of nausea, one eye still tearing and the early weariness that comes when there is healing going on inside. When the worst you hear is "I am so over this", it means the clouds are far enough away to get some perspective on where you are.

John's picture, so far, is good. He even has rather peach fuzz on his head, although the color for some reason is white. He was able to shop a while with Debbie and continues to manage his own IV, though he allows me to manage his pharmacy of pills. Having John out of the hospital has allowed Debbie and me to put in full days of work, even if via telecommuting. Tomorrow we will get the first blood tests since Monday, so we are looking for more progress to pass and another good day.

12:51 AM | |

Tuesday, June 14, 2005 

Day 19

It's 1:00 AM in Atlanta and it is only evening here in Seattle. This near the solstice and this far north, sunset lasts close enough to dawn that even shadows find little time to sleep. John has finished his IV fluids, taken his various pills and settled into his evening with video games for company.

John's numbers have settled into an acceptable plane for now and his doctors are cautiously encouraged. We met with them today and were told to watch for manu small signs of GVHD - many small changes in eating, digestion, energy, skin condition - this cure is a hypochondriac's dream. Hearing such suggestions, rather than having them treated though is not all that bad.

We spent half the day at the clinic today, but they gave "us" tomorrow and Wednesday "off". John even got perrmission to drive a bit. He also received instructions on how to get the most out of what appetite he has at this point.

When John was a child, I installed one of the first wireless baby monitors in his room. Yesterday, I gave him a two-way radio to page me if he needs something in the night. For what there is of night and what time there is for rest, I will sleep a bit better knowing he is well and can wake me.

No sooner had I typed that line than I heard, "Um, Dad. I'm feeling sick and I think I may throw up." A damp towel and half an hour or conversation about what CDs are coming out tomorrow and whether BitTorrent is OK to download seemed to help, so now I'm back and signing off again for the night.

12:47 AM | |

Sunday, June 12, 2005 

Day 18

We seemed to have a good day today. John went with me to the grocery so he could look for things he might feel comfortable eating. We now have a dozen types of lemonade and as many different pastas. Nothing tastes right to John and least of all, water, which he needs to drink constantly. He drove the car back from the store, which is technically against the "rules," but being able to drive is a level of freedom that means something.

John now has this amazing portable IV pump. It is about the size of a portable CD player and fits in a "camel-type" pack, along with a liter of fluids. He has to use it 5 hours or more a day. I learned how to operate it, but he handles it all himself. He even walked around the block wearing it. With his Andy Warhol wig and a hat, you would never know that he wasn't just another University of Washington student around town.

By the end of the day, he was pretty worn, but he is showing good progress and talking about things he wants to do when he gets back to Atlanta.

It's getting on in the day and we start work here on Eastern time (Debbie has a conference call at 5:00 AM), so that's enough for today.

11:48 PM | |

Saturday, June 11, 2005 

Day 17

Yesterday was too busy to write, but it is now early Saturday and John is asleep in his bed again here in what passes for home for now. Sixteen days from transplant is pretty close to a record for release from the hospital, but he was ready. John's key counts (WBC 3.27 and ANC 1.89) almost doubled from the day before. He is managing nausea, taking pills and eating adequately, even though everything tastes like tinfoil.

Terry Fike is a cousin who lives in eastern Washington. He and his wife Nancy drove to Seattle yesterday to visit a friend whose child was recently born with spina bifida. We were able to connect via cell phone and the two of them, through traffic and determination, met us at the hospital entrance for John's "graduation." John doesn't warm to new people quickly, but he did to them, which tells you what good people they are. It was great fun to share the moment with them. Terry may be able to connect with us again in early July.

Debbie stocked the kitchen with soft, bland foods and John ate some egg noodle pasta for dinner. He wants to graze the grocery today to see what he can find that he might be interested in eating. We have a clinic visit this morning and then a home visit from a nurse who will teach us how to use his new portable IV pump. It comes with its own backpack, so he will have mobility and maybe the freedom to go out, looking perhaps like a skinhead with black sunken eyes for added effect.

When we got home yesterday, the realization of having responsibility for a transplant patient home from the hospital became real to me and pretty overrwhelming. There are medication schedules, doctor schedules, constant observation for the most subtle changes and also the need to give John room to be himself without anyone hovering about. He closed the door to his room for an hour or two and I wanted to make sure he was OK, but (with Debbie's good guidance) let him settle back into his space again.

I'll soon have to wake him to take him for his clinic visit, so it's back to the routine from before for a while.

9:26 AM | |

Thursday, June 09, 2005 

Day 15

There is a good chance that John will be released tomorrow afternoon. Sixteen days is remarkably early and evidence that he is doing very well. We had a long discussion with the discharge nurse about the IV pump he will have and the things we will have to do, medical and practical, for his care. The list is long, but we will figure it all out. If I went into detail, I'd just be overrwhelmed.

I disinfected the house this morning and Debbie has picked up some bland foods, because nausea is still a problem for John. While I was cleaning I got a call from my cousin Terry Fike who lives several hours away. He will be in Seattle tomorrow, so I'm hoping we will be able to get together.

If you are keeping track, here are today's numbers:

WBC 1.88
HCT 32
ANC .94
Plts 150 (His transplant has engrafted enough to bring his platelets up to the low side of the normal range. These are some of the last things to "come in" on most patients.)

It's good to have a slow news day.

7:33 PM | |

Wednesday, June 08, 2005 

Day 14

First, the numbers.

WBC 1.75
HCT 32
ANC .94
Plts 106

Basically, John has doubled his blood levels and it shows in his eyes and his being. The doctors made their rounds and had next to nothing to say, which is the best thing to "hear" from a doctor. We have a meeting tomorrow with the discharge nurse, which is even better news (at least for John) though it scares me.

When I came over this morning, John had eaten most of a bowl of (I am not kidding) Fruit Loops. He swallowed pills and had an interesting debate with his nurse over cream of wheat versus grits late in the day. That has to say a lot on a lot of levels.

I should be disinfecting the world here in the house, but I need a moment to breathe in all the senses of the term.

Laura and Mike are on the way back to Atlanta. John really enjoyed their being here and the fresh humor they brought. Carson came too for a time that John enjoyed.

There is more, but there is also much to clean here and much to prepare within for the transition to come. It is late or early, but time for some rest.

11:46 PM | |

Tuesday, June 07, 2005 

Day 13

This morning, the doctors (they travel in herds from room to room) hinted that John might be able to leave the hospital by the weekend - good news, but scary if you are to be his personal hospital staff. John's numbers improved remarkably:
WBC - 1.25
HCT - 32
ANC - .54
Plts - 66

He was able to sip for the first time in over a week and the doctors started discussing with him what things he might be able to eat before long. They don't expect him to eat solid food until perhaps next week. The better he feels, the more worried I get over how I will take care of him, food, sanitation, transportation, and medication (including IV fluids).

I'm sitting in the family lounge writing this and half-mockingly feeling sorry for myself among family members of several other patients try to carry on the basics of life. There is a washer/dryer available for cleaning clothes, a refrigerator and a shower for those who stay overnight. The wife of one man catches catnaps by the window. Three Japanese children are roaming the room half-watching the Cartoon Network, which is loud enough to rattle the furniture. I caught one saying that the show has some Japanese words, but she can't understand them. Their father arrived recently enough that he still has his hair. I find it interesting how "we" find ways to deal with life with so much awareness of how fragile it can be. I don't believe I've seen a tear from anyone since I arrived.

Courtney's car broke down in the rain in Atlanta this afternoon and I dealt with it by long distance. I'ts raining here right now and I have to watch for a break in the weather to ride my bike back to the house.

As a rule, we are "at work" every morning about 5:30, Pacific time. I ride over to the hospital about mid-morning and then work by computer and the hospital phone until about 6 pm. (Cell phones must be off.) The downside of not being in the office is that "drop in" business can't be done and attending meetings by phone is necessary. The upside is that I have time for projects that are hard to finish with the interruptions that come with an office. It takes discipline though to keep at it and can get tiring. One has to be thankful though for the tolerance of co-workers in helping work around a 3000 mile telecommute.

John had his first visitor of his own today, a girl he has known for a number of years, who is in town for a wedding. It perked him up quite a bit, as you might imagine. He has also spend over two hours on the phone with another girl he knows who is off in France, all of which is why I am here watching cartoons and waiting for the rain to stop.

7:41 PM | |

Monday, June 06, 2005 

Day 12

John had a rough night, throwing up twice, but he has shown signs of improvement as the day progressed. When the drugs wear off and he wakes, he is alert and wanting to do things. That has been about half the time today.

John's "numbers" are starting to come up and the doctors say that he is showing signs that the transplanted stem cells are engrafting. They track four types of measures daily:

White Blood Count (WBC): a measure of the number of white cells in the blood. These go down to near zero as the chemotherapy takes effect and should move back up toward a range of 4 to 10. He was at 3.78 when he entered the hospital, dropped to .08 on Day 6 and has risen to .95 for the past two days.

Hematocrit (HCT): the percentage of red cells in the blood. These need to be between 38 and 50. John has ranged fro 28 when he went in the hospital to a low of 25 on Day 6 and is now back up to 30 without having had any transfusions since that low point, which seems to mean that he may be starting to make blood cells again.

Absolute Neutrophil Count (ANC): This is a subset of the white count that measures the types of blood cells that are most important in disease fighting and the ones that became cancerous before. John's numbers never returned to normal after his second chemo in January. He needs to be around 7.5 and entered the hospital at 3.33. On Days 7, 8 and 9, he was at 0. Today he was at .29, which is a good sign.

Platelets (PLTS): These are the cells that cause the blood to clot. They tend to be slow to come back and need to get to between 150 and 400. John entered the hospital at 55, dropped to 6 on Day 5, came back up with the help of transfusions around Days 8 and 10 and is now at 44.

They also measure liver functions to watch for organ damage. Those numbers have been steady and moderate. He also shows no signs of damage to any other organs at this point.

We are all looking forward to the next few days.

6:16 PM | |

Sunday, June 05, 2005 

Day 11

Finally, a day with not much to say. John had a pretty good night, for being in a hospital anyway, and has been alert and maybe just a bit bored. He is able to swallow occasionally and was able to take a bite of Jello and a sip of Gatorade. He is giving thought at times to things he wants to work on when he can, all of which are positive signs.

Laura and Mike came over with Debbie and visited for a while, which John enjoyed. I'm going to join them for dinner later.

Today was John's last suppression shot and he should begin to improve soon. He asked about how GVHD might feel and what it might do to him. He is a bit anxious about it, but the severe examples are really pretty rare, which I explained. All in all, I think he is doing pretty well at this point.

7:31 PM | |

Saturday, June 04, 2005 

Day 10

Yesterday seemed to be John's worst day since the transplant, although I have seen him worse off during his prior hospitalizations. A mild fever returned and he coughed up blood in the night, which sounds worse than it was.

In trying to adjust his pain medication, they added a new drug that caused him to be confused and anxious, but did nothing for the pain. By the end of the day, we got that out of his system and a newer pain and nausea medication in him. "Zofran" is the drug that he took when he started this round of chemotherapy. It is hard to believe, but it costs about $100 a pill (or in this case a shot). He hasn't eaten anything in about a week now, but still throws up when his medication levels drop, which happened during the evening. Despite all that and other ickier things, the fact that all this is a part of a transplant makes it easier to handle. This is, after all, treatment to make him better. Also, the confidence and attention that comes from the staff gives John an added boost.

This morning, Saturday, John seemed better. He sat in a chair, read and talked some. When he dozed, he would see and hear things, but that is due to the drugs. Interestingly, he receives a cognitive test almost every day as a part of a study going on. The whole thing takes about 10 minutes and starts with "Do you know your name." They ask him to repeat numbers in sequence and backwards and at the end ask if he remembers the first set of numbers. (Yes, he did better than me). They also ask questions to see if he is seeing or hearing things, is in pain and if he thinks someone is trying to hurt him. (It's not paranoia if they really are out to get you.) A study was published yesterday that followed 400 sets of twins in Sweden in which one sibling had come down with cancer. The results showed that, either due to treatments or cancer, the twin with cancer tended to develop more and earlier mental impairment. That would be a small tradeoff if it is true in John's case.

Tomorrow will be John's last shot to slow the engraftment process. After that, he should start to improve and feel better, unless acute "graft vs. host disease" sets in. He shows no signs of that at this point, but for those in whom it does occur, the new immune system attacks its new host organ by organ. That would be a valid reason to be paranoid. His various blood counts have remained supressed and low now for a week, but all the doctors are worried about is treating his various side effects.

Laura (my sister) and Mike (her husband) came to town yesterday to visit us, some friends and to ride bicycles around town. We had lunch with them today and the visited with John in the hospital. They apparently have donated to John's "Vespa fund" (please don't), because he awarded them a copy of his comic book.

We sat and talked about how John will be living with someone elses blood and immune system and whether that constituted justifiable schizophrenia. He seemed to really enjoy their visit and perked up for quite a while.

This hospital and staff is great, but the one thing they couldn't seem to find or provide has been a razor to cut a patient's hair when it begins to fall out. After asking every day, I bought one at the drug store, cleaned it with alcohol and shaved John's head. Afterwards, I donated it to the University of Washington Medical Center in John's name. Now he looks more like my son.

1:58 PM | |

Friday, June 03, 2005 

Day 9

Whatever it was that caused John's fever moved on and with it that concern. Although he has plenty to complain about, he seems to sense that he has seen worse before and is taking it well enough to talk about when he may be able to eat again and such. During the Wednesday night/Thursday morning hours, what little of nothing he had in his stomach reversed course, which was unpleasant to his raw throat and mouth. There are many much more sick than John here. Still, he gets attention and encouragement.

I cut what is left of John's hair today, but the touch of the scissors caused more to fall out than it cut. His head has the look of a mangey dog. Talk about a bad hair day. The one thing you would think the best cancer hospital floor in the world would have is an electric razor, but they are out. Maybe tomorrow.

Today was the day this holiday week for new comics to come out. I was the person entrusted this task, which is an honor and great responsibility. On the other hand, when John decided to walk the halls for his required exercise, I became his spitoon carrier - nothing like what I figured being a father would lead to at this point 22 years down the road. One can never quite fill the place in the soul where humility belongs.

1:15 AM | |

Thursday, June 02, 2005 

Day 8

John developed a fever yesterday of about 101. They have changed his antibiotics and say that these things happen. He is keeping his head above it all pretty well, even though the burns to his throat and mouth and all the rest hurts a lot. He is showing bruises and his hair is falling out in clumps. I've seen him physically, and certainly emotionally worse, and there are patients that suffer more and come back whole. Those who race sailboats would say he has his "eyes outside the boat." Those who don't I'm sure would say that is the kind of thing those who race turtles might say.

I've noticed that John's skin shows hints of "that musty color" of some transplant patients. He mentioned tonight that the tips of his fingers hurt like after being burned by an iron or stove. The staff notes all these things, but seems comfortable with his state, and it seems to show in John's confidence as well.

I dropped Courtney off at the airport tonight for her flight to Atlanta. I realized on the way, that the several weeks she has stayed here is the most time I've spent with her in at least five years. Irving and others of the existential ilk measure life in "defining moments." I've had a cat's lives full of such times, and, I suppose I look - or at least feel - a bit like Bill the cat from it all. John's time now, in that sense, will be a part of what defines, or at least refines, both children and wherever it is they might sail.

1:02 AM | |

Wednesday, June 01, 2005 

Day 7

John is now seven days post-transplant and on track, which means as miserable as expected, mostly from the sores in his mouth and throat. They are taking very good care of him though and all the signs are good. His attitude is pretty good, perhaps in part because the confidence of the staff is contagious. He did have a bit of fever for a time yesterday, and is now being given food and liquids by IV. This should last about4 or 5 more days, they say. Courtney gave John a mohawk haircut yesterday, since his hair will soon fall out. Clearly, he still has his sense of humor.

They ask him a series of questions every day like, “What is your name? Who is the President? Etc.” Yesterday they added, “Do you feel like what is happening isn’t real?” I wanted to answer that one myself ;)

Courtney flies back to Atlanta tonight for a time. She has decided, if all goes well for her and John, to go to Scripps College, one of several related schools in Claremont California. It is technically a women's school, and they serve afternoon tea still to this day. I think those are things they advertise for the benefit of parents. I'm thinking they probably don't have a football team. It might make you wonder if the school is real as well. Ah, kids. What can one say!

9:53 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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