Hope is the thing...

We will fly back "home" to Atlanta on Monday morning and, with packing, and all that must be done, I won't have the chance to post anything again for a few days.

At some point in the past week, the season began to change here - yes, in August. There are clouds again at times, and it has begun to turn cooler. This far north, a day's length changes perceptably, as it ebbs from 18 or more hours of light in June to probably next to none in December, if you consider the clouds and rain.

There is much to say and many to thank for our being here and John's success. Having seen the care elsewhere and seeing it here, I am pretty confident that having the chance to be here increased John's chances greatly. We won't ever know for certain, but it may have saved his life.

Each year during the television awards season, I imagine that if I was on the stage, I would say something heartfelt and profound, rather than rattle off the names to thank. I have too many to thank for the prized outcome here and nothing profound to say, except how much I do thank you.

I will post something in a few days and try to update things here regularly, because we are a long way from being done. Thanks again for giving us hope.

At some point you stop counting days and start living them.

That thought struck me as John and I ate pizza over a SciFi channel tv show this evening. I think it is harder, in its own way, to simply live life every day than it is to live simply to live on for another day. John mocks such koan "philosophy", but only in the sense that it is making too much sense out of too little.

This morning, John had his Hickman line pulled. It goes in the chest, runs beneath the skin and enters a vein where it stops at the heart. The whole thing is designed to deliver and disperse large quantities of blood and poisons so that they spread quickly, hurting and healing the whole body and not merely one spot. Ironically, it is easiest to pull the tubes out without painkillers, because you need an IV to do so and, yes, it is the IV that you are removing. Dr. Hickman put it in and he took it out. There will always be a pad for its entry that will stay under the skin in his chest.

This afternoon was "graduation." Pat was off today. She has been the one person pretty much there from start almost to the finish, and I brought my camera, but didn't have the chance to use it. John's send off, as a result, was more casual and cliched than caring, but that probably made him more comfortable.

I have a large package of papers to read and then to deliver to Dr. Khoury next Friday. We have enough medications for a few weeks and a lot still to pack. We also have a lot to be thankful for and a lot of people to thank. Now there will be time for that and time for John to grow. I'd like some time to rest now for a bit.

We met today with the head of long-term care. His assessment was good, actually "extraordinary" was the word, but doctors are good at making that into a cautious term. John has no signs of leukemia. The stem cells in his marrow are basically all donor cells and are healthy. His platelets remain low which is something to monitor, but there are plenty of patients that have to receive platelet infusions periodically for years. It's sort of like that tire that has a slow leak. You add air once a month or so, but don't need to fix it.

John's skin biopsy showed low signs of GVHD, which will be the long-term thing to monitor, and he will need to avoid things like the sun or anything that might affect his digestive system. Little things that we don't think about, could be significant for him. I asked a lot of questions, but in the course of an hour, there were no surprises. We are to return back next May for a follow-up and, in the meantime, the clinic here will receive regular reports and respond to questions from us or Emory. There is actually an entire floor of people here that do nothing but that.

John did agree to participate in a long-term clinical trial to help decide the best anti-viral medication for patients recovering from a transplant. I think that will be a good thing, because the clinic here will continue to get weekly blood samples to monitor.

My dad has seen to resurrecting our cars from months of sitting in the rain forest that is our driveway. John's needed a new battery, and it was a great help not to be greeted with problems like that when we get back. Debbie is living with the first wave of boxes that have returned and the next will arrive about the time I do.

Debbie's parents are on their way back to Florida and will spend a few days this week in Atlanta. They have been very caring through these months and I wish I could be there to say thanks. If the hurricane that is eyeing South Florida gets in the way, they just might be holed up in Atlanta still when we return.

Debbie and I have been living on adrenaline for nine months now. We are both tired, but she has been the first to sense and to struggle with the transition to a "normal" life, with a still half-sick son to watch after. The emotional after-effects of a long near-death experience are hard on everyone. In her case, a lot of the pain comes from caring too much. She was the first person to reach him in the doctor's office when he was first diagnosed and has done much more for him than any mother, even his own, to see that he received the best chance at a new life that anyone anywhere could receive.

John, I think, is dealing with the unfairness of life, which manifests itself in a constant, brooding state of general anger. It puts those around him off, and at the slightest opportunity he lashes out, especially at those who are close, because they care. He did it to me tonight, first complaining about dinner being late, and then later refusing to eat, criticizing me and storming out. That was mild compared to the way he has treated others.

There are clinical and also old-fashioned names for that kind of behavior. I recognize too much of whatever it is from his other parent. Why does doing good for someone make him turn on you? It was around in Aesop's day. I've lived on hope this long, I hope now that he might grow up a bit.

Debbie returned to Atlanta this morning for the last time, and John and I have a busy week still to go. As she was on her way, our neighbor, who is a dean at Tech, called to ask if some students could come do a service project on our yard tomorrow. There is a house down the street that I call "Boo Radley's" because it is deserted and overgrown. I think ours might be reaching that point by now. Anyway, and of course, I said, "Yes, please, and thank you so much."

Being gone so long has taken its toll on so many things, and it is so nice to have kindness like that from a neighbor. Living in the city is a hard life. There are so many thing one may take for granted elsewhere. City services are only intermittent and things like police patrols require one to pay off duty officers to respond because - well, I suppose it would amount to bribery if it weren't sanctioned by a system that doesn't work. I lived for a short time in Mexico City and it was the same way there, only bribery seemed to work.

All that makes it all the more kind when you can answer the question, "Who then is my neighbor?" and point next door. So far I know we have one tree half down, another that looks like it belongs in Pisa, no grass in some places and a little shop of horrors elsewhere. The roof miraculously still doesn't leak, but we now have a swimming pool for a basement. I dread seeing what the storms and careless backers have done to Debbie's car. There will be a lot of the thngs I've taken for granted to put back together.

Among them, for me, will be tending to a growing need for some in-person management of staff and responsibilities at work. Some work is better done without quite all the interruptions of the office. Other things can't be done well from a continent away. All in all, I figure it has taken me an extra hour here for each office hour to continue to do a creditable job. Starting at 5:00 AM and working through to 5 or 6 here, with gaps now and then for clinic visits, has helped, but some things I am responsible for need personal attention as home.

Leukemia may reside in one body, but it affects a great many. I've been thinking about the many ways I've seen and experienced that. I've learned that,for me, sleep may be optional, and can be appeased with occasional winks. Cleaning, even beyond what might satisfy the harshest white-gloved mother-in-law, and cooking for the appetite challenged, have reminded me how so many working mothers live. A sailboat can travel faster than the calculus of wind, wake and water will allow in a broad reach if you work it like a board and ride with the surf. I've had many days when the chemistry of health and hope have had that effect for me here. One thing has mattered most here and it has helped my mind to be able to put that first. Having only one car has probably helped me in the physical sense. Afterr I dropped off Debbie at the airport, I put in almost 5 hours biking, and I still was able to cook up a late lunch for John.

This last week will be busy with packing, shipping, medical tests, exit meetings and - just possibly- removal of John's Hickman line. There is more to share, but not for tonight.

Still, at least and most of all, John is coming back and that is worth it all. Apart from getting back to life

This morning, Debbie and I dropped off some books and puzzles on the transplant floor John "lived on" at the University of Washington Hospital. As we entered, there was a sign announcing that it is rated the third best hospital in the country. We knew it was the best for AML transplants like John's, but that is a comforting addition to what we have known.

Today was the "written exam" portion of John's graduation tests. There was a class of three families this week, adding to the total of over 3500 living alumni. The "oldest" of the lot was "born again", so to speak, 35 years ago. Comforting numbers. Hey, I'd take that promise.

Graduation really will be more like parole. Johh will be followed closely for a year in conjunction with Emory. He has to see his parole doctor within a week of return to Atlanta for blood tests and weekly thereafter. He will be on at least one antibiotic for six months and one or more antivirals until May. At that time, he will be evaluated for vaccinations he may need and might tolerate. Some patients go on for years like that, many may go for days, weeks or more not even remembering all this, and some...

The general rules are that graduates should not work or go back to school for a year. I think part time work and a light college semester might be OK though. John will need to exercise some, which really means doing stretches while watching TV and must avoid crowds for as long as he is on immune suppressants. Lance Armstrong is just a superhero, we should all marvel over.

There is a long chart of don'ts that goes on for pages of fine print. One prohibits "spectator events and crowds", meaning 3 or more people, and seems to include church as a "spectator event." I told John they were probably afraid that someone might attend a snake-handling church.

I think John and I aren't yet together on how much parental (that is, cooking, cleaning and cash) care he will continue to need for a while. I can't say I blame him. Chemotherapy was probably less painful than living under the supervision of even someone as enlightened, caring and open-minded as me. I hope he doesn't happen to read this entry.

During class, we learned that John shouldn't have his teeth cleaned until May at the earliest. If he actually has to have dental care, a cross-country consultation of epic proportions will occur.

The list of chronic GVHD symptoms could have been read from some Poe novel, and half the patients develop one or more. Debbie started to slide down in her chair about half-way through the reading and since this blog could be seen by those of a tender age or fragile stomach, I won't offer the highlights. Even the list of things that could cause reactions is simply too long to relate. Just the rosy glow of a bit of sun could send "us" back to the hospital and set John back a long way.

One of the subtle things that occurs with some number of transplant patients is a change in skin color. Sometimes it fades and sometimes they will always have a "grey" sort of tan about them. I see it at least for now.

Of more concern to John than me is that GVHD sometimes causes hair loss. Unlike that which is cause by chemo, this kind is permanent. When John was young, I told him that his hair was his to do with as he wanted as long as he had it. Irony, I think, is the dark matter that the cosmologists search for to make the universe add up.

Talking about side effects and for anyone who might be in a family with a similar circumstance, there won't ever be another from my line to bear the name Cadenhead. I'm OK with that. We have more than enough people, good and bad, in this world as it is. I think John will be too, though he may not have focused on such questions yet. Besides, there are now adopted Cadenheads from all over the world, so he has more good examples than most to look to in what I hope will be a long life ahead.

I need to think about how to address it, but sometime soon it might be worth passing on some of the ups and free-fall downs that come with 21st Century families in sur-reality settings like ours. All this is a family disease and far too many suffer. Still, the sunset leaves a trail of stars and a promise for tomorrow, with the chance to make something more of it.

Shelley was more poetic, but no less pathetic. Still, there remains hope, tomorrow and life. GOOD night, for now.

The preliminary bone marrow test resultsfor John show NO leukemia. That's the news that matters. They took a skin biopsy in the process, which I've been tending to the care of. It shows some evidence of : "subclinical" GVHD. If you ask enough ignorant questions, that translates roughly to a potential for future chronic problems, but no symptoms to report for now. If you search the Internet for diseases with names and no symptoms, you might find that name along with some others with more humorous ones, all of which come down to something worth smiling, if not laughing over.

John's blood counts are mixed these days, which is mostly good as he transitions from the initial drug treatments to longer term watchfulness. Some are up, others down, none "normal" but all well, if you will. There is some evidence of bone density loss from the steroids, but nothing to worry over. His electrolytes remain low, but well enough along that John was able to strike a deal to stop IV fluids if he could increase his magnesium intake another 50%. If that works, they might be able to remove his Hickman line before we leave.

Next week, John should be able to start the 20 week process of tapering his FK 506 treatments, which supress his immune system and the risk of GVHD. We will have a class Wednesday on recognizing and treating chronic GVH. The symptoms are subtle - things like changes in appetite, weight loss, intolerance for some foods, hardening of skin, loss of joint flexibility, dry eyes and just about anything you can imagine. He will be on Acyclovir and some other drugs for a year and will have weekly blood and other tests. It is all very much the medical version of Martha Stewart's house arrest.

John's mother returned from vacation and attended today's session with the doctor. She ws intent on finding out when John would be able to swim in the lake again and didn't seem to get that he still has only half of an immune system and another person's at that. Having him under my care for this time has been something of a comfort that I will have to learn again to let go of, hopefully to one able to make good judgments for himself.

We got a call this evening from my Aunt Caroline, my mother's younger sister. She and her husband will be passing through this week and we are planning to connect on Thursday. It has been about 20 years since I have seen them. I've aged a lot, but I don't believe they have.

Debbie is working so hard at being strong through all of this, but living in neither of two worlds is taking its toll on her being. John has a year or more, perhaps a lifetime of recovery ahead. Anyone with a heart, and Debbie has a large one, will need possibly as long to find the pulse of a normal life again.

I read online that Amelia, one of John's online friends and an AML patient is having platelet problems, made worse by not tolerating transfusions. There is too much that hurts too many in what we try to call life to ever feel sorry for yourself and nothing ever seems - I was going to say fair - to even make sense.

All too often, posts come in on the ALL listserv from the family of a newly diagnosed patient. One come in tonight.

I'm the grandmother of a 3 year old, just diagnosed, desperately ill
little boy. He was diagnosed 36 hours ago, and typed last night. I
know this is an illness much more common with adults than kids. Are
there family members of other children on this list? Of course we're
devastated and because his counts are so wacky right now before any
treatment, just hope they can keep him going for the chemo to do its
work. He's in the children's hospital in Tulsa, and I'm in Alaska.

I don't know that what one says in response matters as much as that someone hears, and I answered as best I could.


If the doctors are able to act in time, you need to listen and learn quickly, care, hope and - as you are able - pray. AML is uncommon in children, but the resilience of youth can offset the statistics. My son is 22, not quite a year from diagnosis, has received a transplant and is doing well.
I have little to share that can help. Learn a lot quickly. There can be great success from superior care. MD Anderson in Houston is one of the best centers anywhere. I moved my family 3000 miles to be near the best of care.
Cancer resides in one body, but infects everyone who is close. Know that all need special care.
ALL has an 85% success rate today in treatment among children. AML is harder, but hope was the one thing that Pandora found when all the rest had escaped her box. Hope, at times, is all I have had. Thus far, it has given me the joy of knowing my son much more deeply than most fathers could ever experience.
Look for life, I suppose.

I will post again later on John's biopsy if I can. Good night/morning until then.

Tomorrow John will have his next bone marrow biopsy. If you are new to such things, it involves a thing the size of a first grade pencil that is pushed down into the hip from behind far enough to be able to suck out several vials of marrow. You can count the dark blue dents in his back. That one gets used to such things speaks a quiet lot.

It was cloudy here today, which prompted John to venture out with me for a trip to the grocery - he has to avoid the sun to keep GVHD from flaring up. Given all the drugs, the emotional ups and drains and the numbing boredom, it's hard to know how he keeps going along. There are moments and days when he is snappy and even surly, mind you, but when I was his age - no, there were also things to worry about, but then you can see what that kind of thing turns you into if you look at me.

But for the lack of hair, puffy cheeks, gray tint to his skin and the tubes that are occasionally visible, you might not realize that John was anything other than any other college student on the five year plan muddling along like the rest. You see worse at the clinic. The other day a woman who could have been 40 or 70 got off the elevator wearing elf shoes and ears. You had to look twice to realize she was well into chemo treatments. It was a good look for her. John mostly wears his Andy Warhol wig and a knit cap when he goes out. Sometimes he hides behind heavy rimmed glasses too. "Whatever gets you through the night", I think is the line from the song.

Lunch today for John was my special homemade nacho mix. It's not much, but it's hot food. Tonight I am cooking a tamale pie and some fresh salad, which he has been able to eat again for a bit.

There won't be much news from the biopsy until next week, but the results should be good, given the secondary reports from John's recent blood tests.

White blood count - 4.2 ("normal" is 4.3 to 10)
Hemacrit (red count) - 40% (38 to50%)
Platelets (in economics these would be "leading indicators") - 86 (150-400) Low, but rising
Neutrophils (the immune cells) - 2.89 (1.8-7)

Some of John's electrolytes remain low, mostly due to immune supressants, which will be reduced shortly. If we can pick those up, he can get off daily fluids and just might get rid of his Hickman line before we are gone.

We were driving my an overpass and saw some people with a sign that said, "Bush talk to Cindy". Cindy Sheehan is from around here and is the mother of a reserve soldier killed 5 days into the war. She is sitting on the side of the road 5 miles from Crawford, Texas because she wants to talk to the President. According to reports from all sides, her vigil is personal and not political and if so, I think I have some sense of the hurt, grief and helplessness she must feel. There is so much of life that is wrong and so little that can be done. Occasionally, one gets a chance to do try while there is time.

The best laid plans can take on a life of their own, to mix cliches. With the move of John's tests forward, came the word today that John will be released on Friday, August 29. We celebrated by making reservations on the morning of the 31st to fly back to Atlanta in time for John to have a burrito at Willy's before it closes for the day. I spent a couple of late hours packing boxes and carrying them down to UPS as the initial shipment of boxes home to celebrate.

Tomorrow, with the sun, will bring with it more than the one day's troubles to tend to, and there rarely is time to appreciate "life", but this evening even the Seattle sky dared not scare up a cloud on it horizon.

The next several weeks will have their warnings, as all the tests for chronic GVHD are done, and statistically, there is still is still a long way to go. Tonight though, I am thankful that a bit of hope, a lot of kindness, good care and hard work now shows promise.

The best laid plans are still eggs that can crack, and so it is with next week. Debbie and I had planned to tag team, so that I could be in Atlanta in the office for a few days again. John's 80 day tests, however, have been moved up, will start Wednesday and will include another bone marrow biopsy on Friday, which I have to be here for. Of course, that is all positive in terms of John's progress. Debbie also has need to be in Atlanta because of sick dogs and a bit of good old exhaustion as well.

Air conditioning hasn't been invented in Seattle yet and so the occasional days when it reaches the 80s can cause you to seek out some shade and a breeze. It's not bad, especially compared to the monsoons in Atlanta, which have formed an indoor pool in my basement, but we have to be sure John doesn't overheat from it. Although he is bored with the semi-isolation, the lack of good company and my cooking, John is quite aware of how fortunate he is to be recovering so well, so far. It was just about now a year ago that he started showing symptoms that led to his diagnosis.

I shared the following from http://www.ethicalwill.com, which I recommend, with Debbie to help with a particularly bad day, and it is so good that I want to post it here for anyone else who happens by. I found the website through this week's Newsweek. The article caught my eye perhaps because I've had occasion to think a little about mortality recently.

If you don't have a will, as a lawyer I can say you should. If you are at all human, which would exclude lawyers, you ought to pass on the things that should matter to you most - your values, a term co-opted by some but meant to be broader than simply right and wrong. I had the humbling experience not too long ago of drafting a will for John, while wondering if he might well need it. I guess some lawyers are human, after all. This one clearly was.


This will was written in the earlier part of the 20th Century. It has a very interesting history.
In the pocket of an old ragged coat belonging to one of the insane patients at the Chicago poorhouse, there was found, after his death, a will. According to Barbara Boyd, in the Washington Law Reporter, the man had been an lawyer, and the will was written in a firm clear hand on a few scraps of paper. So unusual was it, that it was sent to another attorney; and so impressed was he with it's contents, that he read it before the Chicago Bar Association and a resolution was passed ordering it probated. It is now on records of Cook County Illinois.

I, Charles Lounsberry, being of sound and disposing mind and memory, do hereby make and publish this my Last Will and Testament, in order, as justly as may be, to distribute my interests in the world among succeeding men.
That part of my interests which is known in law and recognized in the sheep-bound volumes as my property, being inconsiderable and of no account, I make no disposition of in this, my Will. My right to live, being but a life estate, is not at my disposal, but, these things excepted, all else in the world I now proceed to devise and bequeath.
ITEM: I give to good fathers and mothers, in trust to their children, all good little words of praise and encouragement, and all quaint pet names and endearments; and I charge said parents to use them justly, but generously, as the deeds of their children shall require.
ITEM: I leave to children inclusively, but only for the term of their childhood, all, and every, the flowers of the field, and the blossoms of the woods, with the right to play among them freely according to the custom of children, warning them at the same time against the thistles and the thorns. And I devise to the children the banks of the brooks and the golden sands beneath the waters thereof, and the odors of the willows that dip therein, and the white clouds that float high over the giant trees.
And I leave the children the long, long days to be merry in a thousand ways, and the night and the moon and the train of the Milky Way to wonder at, but subject, nevertheless, to the rights hereinafter given to lovers.
ITEM: I devise to boys jointly all the idle fields and commons where ball may be played, all pleasant waters where one may swim, all snow-clad hills where one may coast, and all streams and ponds where one may fish, or where, when grim winter comes, one may skate, to have and to hold the same for the period of their boyhood. And all meadows, with the clover-blossoms and butterflies thereof; the woods with their appurtenances; the squirrels and birds and echoes and strange noises, and all distant places, which may be visited, together with the adventures there to be found. And I give to said boys, each his own place at the fireside at night, with all pictures that may be seen in the burning wood, to enjoy without hindrance and without any incumbrance of care.
ITEM: To lovers, I devise their imaginary world, with whatever they may need, as the stars of the sky, the red roses by the wall, the bloom of the hawthorn, the sweet strains of music, and aught else they may desire to figure to each other the lastingness and beauty of their love.
ITEM: To young men jointly, I devise and bequeath all boisterous inspiring sports of rivalry, and I give to them the disdain of weakness and undaunted confidence in their own strength. Though they are rude, I leave them to the powers to make lasting friendships, and of possessing companions, and to them exclusively I give all merry songs and brave choruses to sing with lusty voices.
ITEM: And to those who are no longer children, or youths, or lovers, I leave memory, and bequeath to them the volumes of the poems of Burns and Shakespeare, and of other poets, if there be any, to the end that they may live the old days over again, freely and fully without tithe or diminution.
ITEM: To the loved ones with snowy crowns, I bequeath the happiness of old age, the love and gratitude of their children until they fall asleep.

You can find this and more at the website I mentioned above.

I'ts been a few days, it seems, but John, at least, is well. I have a bit of a stomach thing and have been isolating myself for a few days. You have to be careful with germs even when you are well, so I'm now a walking ad for Purell, which actually works, by the way. Then too, there are the Clorox wipes that I have been using twice daily on anything John touches, but now I just carry around.

The clinic is switching into a more active mode with John, in terms of reducing various drugs. He is on the last days of Prednisone and no real signs of GVHD have recurred. His color has taken on a bit of the gray shade that transplant patients often get, but they say it will go away in time. He still has some of the hand tremors, but those may be drug induced. His last antiviral medications stop tomorrow and the Cipro ends today. The second immune supressant, FK506, will be reduced next week.

All that is really, really good and the clinic folks are thrilled with how he's doing. If you think about how he might be at this point without the treatment, it's even more to be thankful for. It's best not to spend too much time thinking about "what if" though.

In other news, Courtney has gone through a really hard decision-making process about college this year. I tried to help, but the best I could offer was that she is adult enough now to make the call and adult enough now to know that grown-ups sometimes don't know what the best decision would be any more than anyone else. Anyway, she made a prudent and well thought out choice to stay in Atlanta this Fall and attend the new SCAD college branch in Midtown. She has visited the campus and is working on the application process. She is thinking of living in the dorm that is nearby. Anyway, she's made a full glass of lemonade from a half of a lemon. I've enjoyed the six weeks or so she has spent here this Summer and it will be fun to have her nearby in Atlanta for a while.

This just in - Debbie, who was to leave today from Atlanta for her ABA convention duties, has been dealing day and night with sick dogs (you don't even want to know). She had them at the vet yesterday, but they were even sicker in the night. Of course, it stormed at the same time, the power went out, lightening struck a tree that fell in the yard scratching her car. She got the car out and got backed into by someone, took the dogs to the vet for IV treatments (no, they still don't know what it is), was told she had to monitor them closely for several days, and so is busy finding others to cover for her in Chicago, while rescheduling flights for herself and me, since I had reservations to be in Atlanta a few days while she was out here.

Did you ever just have one of those lives?