Hope is the thing...

This seems like a good time for an update. John has passed his fourth "birthday" and, after four years and 19 days, is more concerned about thinning hair than an illness that seems, to him, from a lifetime ago. He is six foot three and grown wise, I think, with a good perspective on life that I appreciate in him.



Courtney just graduated from the Art Institute of Chicago, the Julliard of art schools. She and John have moved into a townhouse in Buckhead, here in Atlanta, and are settling into life on their own.




Our two American Eskimo dogs passed away of old age earlier this year and we have two sisters from the same breed on the way. There are puppy pictures on my webpage: http://www.randycadenhead.com.

As of today, John is 3 years, 7 months and 18 days post-transplant and remains wonderfully well. He has completed his Masters in Religious Studies at Georgia State and is taking some well-deserved time off before pursuing a teaching career, which he thinks is next for him.

With the New Year, I've launched my webpage at RandyCadenhead.com. It should serve as a place to share about a broader set of interests and topics, like my "fleet" of sailboats, our charitable interests and more.

Please stop by and check it out.

 

 

I have no bad news to report. I should begin, after three months absence, with that assurance. John remains well, and his stamina has continued to improve, but the passage of three months has left interesting things to share.

In the world of demographics, our home could be described as the "New Traditional Family":
A confused aging Baby Boomer father - that would be me.
The second wife, who is a celebrity of sorts with her own career and much more than my truest friend.
The twenty-something son, a professional student, living in the basement apartment and visited regularly by his girlfriend and other cast members - usually around dinner time.
The college student daughter who comes and goes, talking to friends in tow or by cellphone.
Two rather old dogs, one blind and forever running into things and the other overweight and grumpy.
Several placid goldfish, who don't seem to mind all the confusion as long as they get a little food and water now and then.

There is a backstory for each of us, including the nearly two years now that we spent with John in his treatment for leukemia and receipt of a bone marrow transplant. So with that bit of background, an update. There are a couple of photos that I've posted above because Blogger won't load them within a post today.

Next week, a dress Courtney designed will be part of a fashion competition. It was submitted by a professor from her Spring SCAD term, where she designed it for a class. She and Debbie decided to use the fashion show as an excuse to buy new outfits. A day of shopping to celebrate.

Courtney returns to SCAD, here in Atlanta, this Fall, and plans to stay in the dorm. Her living with us has been great fun for all, but especially for Debbie. The two of them have bonded closely, and I often find myself the comedic stereotype of the hapless father who is present, but clueless, in the midst of all the girl-talk.

Debbie, and her firm, will be featured next month in the Georgia Bar Journal for the pro bono work they did in response to Katrina. I went along with her to the ABA Annual Meeting in Hawaii last month.

John spent much of the Summer coping with a case of the Shingles, which is a painful return of the Chicken Pox virus that can happen to bone marrow transplant recipients because of their immature immune system. The dormant virus travels to nerve endings in the skin, where it surfaces in what looks like second degree burns that cover one side of the chest, neck and sometimes the face. The effect on the nerves is much more painful than the pox on the skin, and John spent weeks unable to go out or even wear a shirt.

It had to have been emotionally hard for John to have seen his life looking up after his successful one-year tests only then to be set back that way. He doesn't really complain, or even talk, much about such things though. Instead, he did something rather remarkable.

John spent most of the Summer writing a book. It is a "graphic novel" technically, which is in long-form to comic books as novels are to short stories. Anyway, the story is somewhere between Alice in Wonderland and The Wizard of Oz and is funnier than C.S. Lewis. He metions it in his Live Journal (http://johnvscancer.livejournal.com/) periodically.

The first draft took a month or so to write. He shared it with friends, who gave input. Then he went back and drew/wrote a second draft. Interestingly, it was the ending that he struggled with - how to bring the plot lines together without being obvious, rushed or trite - closing a song with a finished chord.

We all read the draft up to the last chapter, as John worked on it, and everyone talked through how it should end, with enough eager suggestions to "fill a book." Earlier this week during dinner, the four of us had a lively talk about the ending: the heroine goes home, she stays, the hero goes with her, she leaves and returns, she wakes up from a dream. There were plenty of suggestions, each of which John refuted based on his sense of the characters' personality and the curve of the plotlines.

Just before the conversation wound down, I said, "I think John knows how it will end. John will find it somewhere inside, but he has to figure it out himself." It was the kind of thing you say when you are absorbed in a play and caught up with the characters, only I was watching the story of John, rather than those in his book.

The next day, John told me he had stayed up late into the night and written the ending. It is good, and so is his own story - so far.

I had put this journal away, hoping to leave the pain of the past few years behind with it and move on. I bought that old wooden dream boat, had it shipped from the north and realized there is a LOT of work to do. I've been busy, but a melancholy shadow lingers and reflection can be enlightening.

I'm working on a new website as a fun project. I'll come back with some details. Life, fortunately, goes on, and perhaps so should these reports.

First, the headlines from John's one year evaluation. John's bone marrow shows no signs on leukemia. It is 100% donor DNA and he is not O negative. That is the news you want to hear.

He does show signs of chronic graft vs. host disease (GVH), which, if it doesn't require treatment, is a mixed blessing. On the one hand, it means that his immune system is on the watch for anything foreign, including its new host, but also any leukemia cells. On the other, John has to be alert for anything that might cause his immune system to overreact. That includes sunburn, colds and on and on ad nauseum (literally).

His GVH shows up now in his platelet count (which is below normal (100 instead of 150 to 350), his eyes (which don't make enough tears), his mouth (which has mild inflamation) and his skin (which tests positive and would burn easily). As time passes, and if nothing causes a flare-up, his GVH should diminish over the years. Seattle now has bone marrow transplants twenty years out and doing well.

John may need tear duct plugs to keep his eyes from draining and he isn't thrilled with that idea. Tears lubricate the cornea and prevent scarring and thus blindness, so he has to "watch" this issue. His hair may continue to come back a bit, but there are plenty his age with less to show and that is a common effect of the Busulfin he took before the transplant (the chemo that was so strong the pill bottles had to be burned).

The Fred Hutchinson Center to the right, as seen from our Residence Inn window, remains as impressive as I remembered it. Plenty of people there remembered him and he seemed to feel comfortable and "at home." His long-term follow up doctor was thoughtful enough not only to give him his report, but talk to him about adjusting to "life" again and the additional dimension that having been ill adds to the process of deciding what to do with your life.

As for life, John's odds have gone from one in five surviving to one in five recurring, and maybe better, since he went into remission on his first round of chemo, is young and received top notch care. At 18 months, his odds improve further and at five years, he has no more chance of having leukemia than anyone else.

While there, John got his first round of childhood immunizations and will need follow-up shots. He will need to establish an exercise program as well, which will be convenient here in the neighborhood with a "Y" nearby.

This is the view of the lake from Fred Hutchinson and of Queen Anne hill where we lived. Although it rained most of the week we were there, I did get an hour to sail at the Center for Wooden Boats, http://www.cwb.org/. Before we left on Thursday, we shopped at Pike's Market and ended up finding a great comic store for John and hat shop for me. I used the opportunity to persuade John to buy a sun hat of sorts.

John is proceeding toward the Masters idea from Georgia State, but also thinking of other options, including "sequential art" at SCAD here in Atlanta, which would be a natural for him.

Courtney has settled in with us and become rather good friends with Debbie. Courtney had a birthday party (her 20th) Friday night. Between parties, girlfriends, boyfriends, roommates and such, we seem to have a house full most of the time, although it never seems crowded, especially when we retreat to the attic.

Thinking about life after leukemia applies to everyone affected by it, and that includes me. I've had to scale back my volunteer and social things, what with plagues, wandering in the wilderness, and everything but locusts. I have in mind doing something for myself. There is a 50 year old wooden sloop in Salem, Mass. that I have found for sale. I've lined up a marine surveyor who grew up playing on Old Ironsides and who has owned wooden boats his entire life. If he approves, I have a transporter lined up who has moved old wooden America's Cup yachts over land.

Sounds expensive, but it's actually not. The real "cost" of yachts, especially wooden ones, is in time and upkeep. If it comes together in the next few weeks....

Life goes on, but the story for this blog has fortunately, just about run its course. I have perhaps one more post to make before long.

For now, I'm pleased to close this chapter with the hope that we will all live happily ever after.

A year ago, we waited for tomorrow. In some ways, some things do not change. This time it is not waiting for marrow to arrive, but marrow test results.

Still, this time differs and not just because a year has passed with life going on. John and I spent part of the day visiting shops and places from the past, this time less gingerly, knowing them and living them almost normally. Returning here is not just about medical tests. It is also about returning with some victory to life, and it seems good.

We have had some "early returns" from John's tests. His calcium and potassium levels are low. His colesterol is off balance. These involve fine tuning in the scheme of such things. His platelet levels are below 100 and ought to be 150 - a "quart low" in a phrase. OK, but something to watch. "Exit polls" are interesting, but tomorrow yields the news.

We will leave Seattle tomorrow before I can update, but there will be time over the weekend for more.

The dark energy cosmologists search endlessly for will someday be known as Irony. I offer this not quite mathmatic proof. The afternoon before we flew here to Seattle, Hope and her companion Grace both died in the pond. Delphic, no doubt, but the meaning? We may never know in this life, but still we carry on and carry what we can toward tomorrow.

It is Tuesday evening here in Seattle and, while there are many memories of a year ago that pop in and out of one's mind, the news from today seems pretty good.

We arrived Sunday afternoon after a long flight, checked in and ate a "Bloomin' Onion" at Outback, just as we did on our first evening, the first time around. Monday began, as before, with a long blood draw at 7:30 (10:30 Eastern though). There were PN and Dr visits all morning, and then three hours under sedation for a bone marrow biopsy and two skin biopsies. The nurse came out early and said they had decided to give John his immunizations while he was out. Ten needles all over his body and dozens of pages of paper explaining it all. When you are doing childhood things a second time, time is not something they waste. We relaxed overr pizza and "24's" final episode in the hotel room when the ordeal was over, sucessfully so.

Today was less intrusive, with several sessions of X rays, pulmonary tests, nutrition reviews and such. What we know from these thus far is that his platelets are a "quart low", his tear ducts dry, his nutrition and exercise on the "couchy" side and all that puts him in the 99th percentile. He has mild GVH (grafted immune system rejection of its new host) symptoms, which (ironically) is a good thing, since that also means that stray leukemia cells get rejected too.

The serious news comes in the next two days. It should be basically as good. Also as good is that John has been leading the process here and I have been his caddy. Living through cancer is magical. Living beyond it is a miracle danced with God to a tune no one else should ever hear.

There is a list serv for AML patients and families that I follow at AML@LISTSERV.ACOR.ORG. Participants often ask about treatments, trials, and issues with GVH. I posted this today as "An Encouraging Word":

My son John was diagnosed with AML in November of 2004. He received a stem cell transplant a year ago next week. He graduated from Emory University this past Monday, a year late but only modestly handicapped thus far by his experience. He is thinking now about the future and life, perhaps a little more thoughtfully than most his age.

In the year and a half since our lives made this turn, we have known fear, pain and hope, moved across the country to Seattle and back again, and learned much about each other and ourselves. There have been good days and bad, and perhaps a few doubts about tomorrows. We return to Fred Hutchinson in Seattle next week for John's one year follow up, a success, so far, and genuinely so good.

Whatever your situation, it may help to know there are stories like John's that give a face to hope.

Randy Cadenhead
Father of John, age 23

Yesterday, John graduated from Emory.


It was a perfect day. The weather was clear and remarkably cool. Debbie, Courtney, Madison and I dressed up as if it were Easter morning, and in a way it was. The ceremony was something near 5 hours long and I took several opportunities to check and make sure that the sun and sitting were not wearing John down.

The other four of us entertained ourselves with knitting, video games, a new camera and Blackberry things. Eventually, we all went in search of Cokes and snacks, but we stayed through the Zubins and the second muttering of the alma mater.



The rest of John's family left before the ceremony was over, so the five of us went out for pizza for lunch (John's choice, but I'm not complaining).

Saturday night, most everyone in the family came over for dinner and we had a great time. It felt like we were all "home." There is still a lot of unpacking to do and a lot of life to attend to, but it is good to appreciate life in these good days.

The number of boxes that litter our new home is slowing beginning to fold. The pace has slowed for lack of any place to put things. Our house reflects the earth in the sense of being too crowded. Still, the three story "high rise" effect has proven enjoyable for all. We all live just far apart enough to allow enjoying being together. It certainly helps to be nearby to see that the kids are eating as they should and getting good and early medical care.

We had John's eyes checked and he needs glasses to read now, which explains the headaches. As with most chemo/transplant patients, his eyes are also dry and rough. He has a prescription for that, which may help some of the discomfort.

Little daily things that we take for granted, he cannot. Walking barefoot in the grass or digging in the dirt are dangerous for him. Going outside in the daylight without a hat risks GVH from the sun. Small things, but noticable when you live that way. Most of all, asking yourself, "Is it OK to do this?" time and again must be wearing, although probably also a lesson some of us could learn from.

Each of us is really going through much the same process here - learning to live again, testing and finding limits and needs to fill. It is good to have family able to share the process with.

I took up fish as pets when I lived alone and got into the hobby more when we moved to Midtown, where our house had a pond. I raised a koi named Moby and a dozen or more goldfish, some of which grew to as much as a pound. It became a miniature Japanese garden, with a bonsai bald cypress, dwarf bamboo and such.

For a year or so, I had a small fan-tail goldfish that I kept in a tank indoors. I named it Hope and two years ago put "her" out in the pond with the others because she had outgrown the tank. She held her own against the other fish, even though smaller and laughingly slow by staying out of the way. She could go weeks, particularly in the winter, without being seen, but it was fun to bring Debbie outside and show her that Hope was still alive.

The buyers of our house couldn't manage the fish, so I've arranged for all but one to be adopted. Hope though, I rescued in a bucket brought her to Decatur where I put her in a small pond on the patio. For the first week, she lay on her side against the quiet throb of the water pump and rarely moved. On a guess, I sought out another fan-tail goldfish that was about her size, named her Grace and brought her home. In minutes, they were both side-by-side back near the pump.

I've added some water hyacinth, sea fern and a few pets of their own and now Hope and Grace seem right at home. Chaucer would have the literary sense to have a moral to such a story as this, but it is just a little bit of, and perhaps about, life.

Today is the 20th "anniversary" of Chernobyl and yesterday was the day set aside to mark the Holocaust. Eliot was right when he began The Wasteland with, "April is the cruelest month." Still there enough beautiful, kind or good things here and there to keep one going.

A year ago we were waiting for John's marrow donation and learned we would have an additional week's delay. Now he is a week from finishing college. His latest post on http://johnvscancer.livejournal.com/ was asking what to do with his life. Like we ever figure that one out. Still, it is all the more important a question for someone like him.

If John asked me what to do, I'd be surprised, but I'd say find something you like to do, someone you like to do it with and then let life take care of itself. It may be cruel or kind and much of it is beyond more than prayer.

Anyway, my life has lots of boxes still in it from the move, no where to unpack them and lots of small house problems to deal with. Later.

It's been more than a few days, but it is hard to update when so much is happening.

John remains well and has tolerated Debbie and I moving into the rest of the house. He has been strong enough to research and write a 20 page paper for his major religion class on the social life of monks in the middle ages. It was a different kind of hard work for him now than it was for him in the past and for most of us now. Writing is a mental, and sometimes physical act of juggling and constructing ideas into words, sentences and a message.

Many post-chemo patients have problems with short term memory and focus, which would make things like writing papers tougher. I don't see those signs in John, but I do think he tires more easily, which means he has to start earlier and work harder than I used to see in him.

He is using the same approach in working toward graduate school. Starting early, planning and such. He will take the GRE in the next few weeks and is getting recommendations and his application together for Georgia State.

Until all this happened, I would never have encouraged John to go to graduate school, but now it is the best of all choices for him. The mental exercise and discipline will be good for him. The academic environment is a place he is comfortable in. He doesn't have the stamina for a full time job and he is still at the stage where relapse, GVHD or both are as possible as not. Fortunately, I will be able to keep John's health insurance in place for several more years, which for too many turns out to be the difference between life and not. The following was part of an AML list serv posting yesterday:

There is a 15 year old
boy in Atlanta who is in desperate need of a bone
marrow transplant, they have a match, however he has
no insurance and Medicaid has refused coverage of
the treatment. He has been told he needs to raise
$500,000. We have been working very diligently to
raise the money for him and to date have collected
$185,000. They have told him that once he reaches
$250,000 they will begin surgery and then give the
family 6 months to pay the rest. The donations have
been going through the www.childrenscancercenter.org
and can be made online at
www.active.com/donate/childrenscc for non profit or
to www.active.com/donate/danyal - At this rate, we
are about $70,000 short for Danyal right now and he
needs help or one more child will die from this
terrible disease. Ultimately, the family will have
to pay the entire amount. They are giving him two -
three weeks without the transplant.

Amid all the moving into our new house, Courtney made her way back home from Peru. There were conflicts in her flight reservations, but we got her home and mostly in one piece. The scar above her eye is healing cleanly, and we will see how it settles over time. The immediate problem though was that she came back suffering again from stomach problems. They were bad enough that she spend part of her first day back in the hospital getting fluids. By Tuesday, the tests showed a bacterial parasite, which she is not getting treatment for. She is still a bit week and needs to get some strength back. Courtney is working for a few weeks in the afternoon with the children of a family from work, covering the after school hours. It is not "heavy lifting" and she seems to like it.

I am with Debbie at the Greenbriar where her firm is meeting for several days. With so much going on, it was hard to get away, but the distance may help me recover from all that is swirling about.

When the children were young, I drove them to school each day, a brief time we three had together free of other influences. Out of design, I would engage them in conversation about one thing or another with the hope it might pass on some point about the joy of learning something new or about getting along in life. Even though I was often sad, I enjoyed making it fun. We dealt in humor, irony, science, trivial bits of literature, honesty and feelings. They seemed to enjoy being accepted as if adults and, if they didn't appreciate the time, they played along because I enjoyed the moments.

Often on the drives, I had some message I wanted to convey. On the first day of school each year, it was the same one. There would be new kids in their classes and they should be sure to talk to each one because they wouldn't know anyone and would be afraid. On the second day, I would tell the kids that the easiest way to get good grades was to start the year working hard and showing lots of interest in class. This would fool the teachers into thinking they were good students and lead to better grades. I was honest about the risk that they might actually get interested and continue to learn because they enjoyed it, but that was a risk worth taking.
Kids, at least today, understand irony and can respond in kind. By the second grade, Courtney had dubbed that lesson, "Lecture 1" and enjoyed cutting me off before I had begun with just those two words.

All of that is to say that Courtney's latest post on her travel journal at http://www.getjealous.com/getjealous.php?go=Corchita7 is a stream of semiconsciousness on a most unfortunate lesson she learned this week in Peru. I won't give it away, but when she called to tell me about it, she began with that line parents hate to hear (no, not "Dad, can you send money") but "First, I just want you to know that I'm OK."
When I sent Debbie to read her post, her response was, "It sounds like lecture 40,235." I'm pretty sure I never taught that lesson on the way to school.

Let's see. And in other news, we have a firm contract on the house in Midtown, close on April 28 and move on April 12. Unfortunately, that is Passover, but it doesn't actually start until sundown. There is a Jewish tradition derived from the Passover story in which you place a decorative container containing a small scroll on your door frame as a sign, this time of welcome. We will get to move ours to our new home on Passover.

There is a lesson in there somewhere.

Yesterday, we finished negotiating a contract to sell our Midtown house, so we should be able to join John in Decatur in mid-April. Nice news. The housing market has been slowing - after we bought and increasingly as we have been selling. Still, we had a good amount of traffic through our house. I called them tourists, because they seemed more interested in seeing a true Arts & Crafts home in vintage condition than in buying. So much for another phase of life and on to the next. Maybe there will be time for some rest when it arrives.

For "Spring Break" John moved into his basement apartment in our new Decatur house. Some of the decorating is temporary, since we still have most of our furniture in Midtown, but he is staying there overnight now, so that makes the move official to me.

I dropped some boxes off there last night and it was great to see how excited John is about it all. He has been at the mercy of his own sickness and doctors and living in hospitals, spare bedroom and such for so long that having a place of his own is a marker of sorts that shows in his eyes and in his energy. It is good to see again.

Of course, he is coming back over for dinner, so I'd better be off and tend to that!

I'm back from one trip and about to take two quick ones this week. I'm speaking at the annual meeting of the International Association of Privacy Professionals on responding to subpoenas. It's a dry topic in some respects, but it is also quite current, since it there is so much in the news about warrantless surveillance, the Patriot Act's renewal, the government wanting to know what your Google searches are and so forth.

John starts midterms today. He is trying very hard to prepare, and I can see how hard it is to summon the mental energy he needs. Some of the difficulty is having been away from school for a year, but I can tell he is also not fully back in terms of energy and maybe concentration. I am glad to be able to handle cleaning and such for him and Debbie has been cooking every night, all of which helps a lot.

Next week John has Spring Break, and we plan to get him moved over to the new house. We have his space clean and about set up.

It was sad to learn about Dana Reeves passing from lung cancer. Irony can be as sad as life at times, and I feel for their son and the rest of the family.

I'm away in Phoenix for a few days. I have a moment to update, but not that much to report. Moving John into the new house has been slowed a bit by hot water heater problems. We hope that will be finished this weekend.

Spring has begun early in Atlanta. We have fresh grass coming up and flowers coming out, which means that home buyers may begin to venture out more often.

Courtney is travelling during her Spring Break with a friend. While in Blackberry range today, she sent this report:

Hey dadio! Yes, so far the travelimg has been awesome! We watched some carnaval festivals in pisac, then made our way to puno, spent the night with an awesome family on the island of amantani, and now we're off to copacabana and the isla del sol. Its been so wonderful, and I even found a bonsai shop (you would put them to shame).

I don't know where all those places are, but it does sound like the ultimate Spring Break trip.

"He also serves who also stands and waits" is often quoted in military contexts, or long checkout lines, but it was written by Milton in a lamentation over his blindness, which required that his daughters read to him and made writing a struggle.

Our wait remains over the sale of our Midtown house, which has us in limbo (another term made famous by Milton) between two homes. I'll be in Phoenix most of next week, so let's hope for developments this weekend. We will be working to set up John's space in the basement so that he can begin moving in.

Courtney says her stomach is doing better, but perhaps we can be more sure if we stand and wait a bit longer.

John's report card from his doctor's visit yesterday turned out to be better than I thought. His doctor said that he is pretty much "fully recovered." (They never use the word cured with a cancer patient.) The doctor even asked if John would be willing to come answer questions from his medical school class, which pleased John a lot.

After the last trial test next week, John will move to MONTHLY doctor's visits, unless something starts to bother him. I'm sure there was more, but I couldn't hear because my smile was even wider than my ears.

We had the house walk through today and John got to scope out his space downstairs. These pictures are the two entrances to his space at "232 1/3 Superior Avenue." He is wanting to move already. Afterwards, we went shopping at IKEA for bedroom furniture for him. All in all, for a cold and windy winter day, it has felt pretty warm inside.

I realized that it was this time last year that I began using this blog to update everyone on John. There has been a lot to cover in that time and plenty ahead, I'm glad to say.

John will soon end his participation in the anti-fungal medication trial, successfully no less. He will then be down to blood tests every other week. More markers of progress. He did have a bad day yesterday, when he had to take Elvis, his cat, to the vet to be put to sleep. I was sad too. Elvis lived his full nine lives and never took orders from anyone, although he was partial to Bonnie, loved to spend the day under Courtney's quilt and was best friends with John. After the past year, I'm sure we all think a bit longer and deeper when a friend is gone.

As I was dealing with the effects of a stomach virus yesterday, Courtney reported that she has been suffering from what seems like dyspepsia for a while. When she first arrived in Peru, she was served guinea pig and ended up with the "Revenge." This seems (to Dr. Dad) to be a chronic version of the same bacteria. Courtney went to the doctor yesterday and was told it was nothing, which is probably true to someone born in Peru.

I spent time online and on the phone with medical types here getting the test and treatment information and then finding Spanish translations to email. I haven't heard anything more sense. I feel better anyway, being able to do something.

We close on the new house on Wednesday. Nothing to report on the sale of ours in Midtown yet. It's a beautiful old house though, so we get lots of traffic coming through. More like tourists perhaps. I know, I'm going to put up velvet ropes and charge admission!

It's hard to imagine in one sense and it seems like forever in another, but the time has come to schedule John's one year post-transplant evaluation. A year ago he was in Emory hospital recovering from chemotherapy and an infection and now we are looking forward toward a year's transplant anniversary.

We will be going to Seattle May 21 for five days of tests and evaluation, which will be a week after John's graduation. Quite a lot to celebrate.

The new reality is, and may always be, that any sign of illness will set off alarms. The other night, John suffered a bout of something that turned his stomach inside out. It would have been unpleasant, but in his case, it had the whole house up until it subsided.

There is progress to report though. John has been off Prednisone for a while and has now stopped taking his last anti-rejection drug. In fact, he now takes fewer medications than me, and I'm in pretty good health.

Just one other thing to note. My website at http://www.randycadenhead.com now redirects you here, in case it is an easier URL to remember.

I decided it was time for a make over of sorts and this is it. The new format seems brighter and easier to read, and it has space for links to places like John's website and his journal. Anyway, I actually did some HTML editing on the template to boot. Coolest of all is that I added a picture of me - and working no less.

While I am mentioning links, Courtney's "Perusing" journal has lots of photos and is full of funny stories. Her Blackberry works perfectly there and you can email her at cadenpiper@gmail.com. It works so well, in fact, that I just got her first month's bill and it nearly had a comma in it.

Before classes started back, John reworked the story line from his Emo webcomic and published a bound compilation called "Half a Mind". You can order one from his website. Beware though, the language is rough in places. This is actually his second "book." The first is still also on his website.

I'll save what other news there is for the moment.

Pardon my progress, but I'm working on a new format and it's not quite working yet. Stay "tooned."

One year ago tomorrow, John returned to Emory hospital with an infection that took weeks to recover from. Two days ago, he returned to Emory University for his final semester of classes. That's a marker worth celebrating, but I think the transition has also been exhausting to John.
It takes a very long time to recover from all he has been through, both physically and mentally, and yesterday, as I drove with him after leaving his car for repairs, I could sense signs of both. The moment validated the need for him to live at home and our decision to move in order to make that easier for him and all. We have no buyer for our house as yet, and we close on the Decatur house on February 15.

John published a softcover book version of his Emo comic, which you should soon find on his webpage: http://www.angelfire.com/comics/ihatethisgame/main.html. It's his second book of the type. They call them "graphic novels"and they are a growing genre unto themselves.

Courtney is now living with her local family, eating guinea pig, taking classes and will be working on the group water development project this weekend. Her website is full of funny stories and great photos. http://www.getjealous.com/getjealous.php?go=Corchita7

Courtney asked for another photo from our sailing trip. The two above are from the day we spent sailing 12 Meter boats from the 1987 America's Cup.

This is a scene from St. Barts, one of the islands Debbie and I sailed to this past week - our first vacation of any sort in the past year and change. It looks beautiful and peaceful, and while it was all of the first, it was less of the second. We had 30 plus knot winds and 10 to 12 foot seas at times. A great trip in both respects.

John returns for his last semester at Emory this week, which is a significant step and worthy of noting. A year ago, if we had been able to see through the shock, this time would have been doubtful. Now, every day is as full of more than this picture can express.
Courtney's postings on her site are worth checking, even though she has fallen prey for the moment to those things that go "barf" in the night. So much for there; we are back to again....

Through the magic of the Internet, we have photos of Courtney's first full day in Peru. Somehow she acquired a child, at least for a photo-op. I've also included a scene of the Cusco Plaza. There are more on her travel blog at http://www.getjealous.com/getjealous.php?go=Corchita7

John's cold seems to be passing without incident and, as of yesterday, his doctors continue positive reports. It is good to be able to say that "no news is good news", I think.

Our house in Midtown is on the market and has had a little traffic. I am still recovering from the efforts of the past several weekends of getting it ready to sell.

Debbie and I will be in the Islands sailing next week - our first break of any kind in well over a year. While it is much needed, the process of getting ready to go is exhausting. I still have a room to paint, so...

It has been a few days since my last update, but they have been busy ones. John spent several days leading up to the New Years in Dalton with his girlfriend's family. Courtney has been packing, saying her goodbyes and dating one particular guy, while Debbie and I have been manically preparing the house to go on sale. Our tasks (mostly mine) have been to paint, refinish floors, make the yard look "low maintenance" and toss or store mountains of miscellany that have filled too many corners of our home. Debbie is not a neatnik, andI am a pack rat, so we have been more than busy. John is a messy pack rat, but he has been the most dedicated of all to the process of making our hundred year home look clean and new.

John has come down with a mild cold, which we are watching with care. He is now off Prednisone comepletly again and so we are watching his stomach and such for any signs of rejection. So far, much more than good.

I took Courtney to the airport yesterday for her Peru trip. I couldn't tell who was more nervous between us, but she arrived in Lima and she was able to email me from her Blackberry that all is well thus far. She is now on a plane to Cusco where she will attend classes and live. Cusco is supposed to be one of the most scenic cities in the world and is about 45 miles along the Incan Trail to Machu Pichu.

She has set up a travel blog at http://www.getjealous.com/getjealous.php?go=Corchita7
Her first entry is in Spanish, but there is a rough Internet translator at http://babelfish.altavista.com/ which was helpful enough for me to see that it mentions the really neat squeeze bottle portable water purifier that I bought for her. Bookmark her blog (and maybe the translator) to keep up with her on this remarkable adventure.

Long, long ago in a life far, far away, an evil, sadistic sister of the hero of this tale decreed that her siblings and all the grandchildren must give the family's patriarch a Christmas story each Yule that he could treasure in a book to read throughout the year. This form of cruelty that only a mother could conceive was inflicted on each, every Christmas Eve since, with regular reminders to all to write rising, as the number of days before Christmas waned.

Children, and even those who pass for adults, when reminded to write would moan and postpone the exercise, often until the morning of that eve, finally stopping their shopping to reflect on something worth sharing that each had made themselves. Then on Christmas Eve, before exchanging presents, each was called on by the Christmas Queen of Cruelty to read aloud his or her creation. The sister relished these moments of torture and often captured each on video, no doubt so she could relive over and again the pleasure of each standing before the others to read his or her creation.

Traditions, like sores, persist because they are picked at again and again, and so it continued in this story of stories. There were tales told of crossing the country in a 16 foot sardine can, of being so poor that three children had to share a single cookie, apocryphal tales of mean tricks the brother played on his sisters, imaginative weavings of children's whimsy and, once in a while, apologies for having forgotten.

The stories grew to be a tapestry made of paper that captured images from the hearts of those woven together by the fact that they were family. In time, the book, the family and the the individuals grew older, which time has a way with, and also closer from sharing something made by hand from the heart for the head of the family each Christmas Eve.

And so your hero writes these thoughts to share, for himself and this year for all of his family. The star of Bethlehem appeared in the night, and genuine goodness is shared when one is most in need. We have seen our share, and a bit more, of dim days and dark nights this year. There was one person who was there during it all, my dad - by phone, in person, to listen, to help and, when needed,to be present.

Fathers and sons often don't share things about each other's heart that stories read aloud at Christmas capture. The hero of this story, which is me, learned a lifetime of lessons this year about a dad's love and about how to be as good a father himself: that there is strength in humility, wisdom in listening, and hope in helping.

As as for that sister, thanks for the tradition, but beware, for next year that brother may write about you.

And most things these days cost more than coins. We have decided to move to a place that will fit our not so traditional family. We ran across this house while driving through Decatur (Debbie's old haunt), which is an "intown" city/suburb next to Emory University and east of Atlanta proper.

The house was built in 1930, and is thus a comparably "new" house. It has been nicely renovated so that Debbie and I can live in the attic and John in a very livable basement with its own entrance. The original space on the main floor has two bedrooms and will accomodate Courtney and guests. We think we can complete a contract on it and close in February.

Moving, with all the work involved, is not what we would have considered, especially from our 100 year old Craftsman, but change can be good. John is excited about having a "place" of his own and Courtney, who has been in the house may like it enough to want to join us, I fear.

We currently have workmen in the house refinishing woodwork, and I've refurbished the attic and basement. Currier and Ives never pictured a Christmas the way we seem to live them. On the other hand, I don't suppose I've ever been happier than I am these days. "Bedlam" was a home in England to which the insane were commited long ago. It might be a good name for our new home.

Last weekend Debbie and I were able to attend Dad and Dottie's Christmas music program, which was beautifully staged and performed. Afterwards, we were introduced to a number of folks who have prayed for John religiously (in every sense) for the past year. There is no one word for how that opportunity felt. If John ever meets his donor, he may have the same feelings of wonder and thanks. Both amount to gifts of life;

John is adjusting to several more medication fine tunings. He will start taking an antibiotic inhalation treatment once a month instead of Bactrim. His antirejection drug is now down to 5 mg a day and will reduce the magnesium he takes as a supplement. He remains at a low level of Prednisone, but he may be able to try without it soon.

His face has grown puffy from the steroids, and his hair is completely different from before - straight, fine and thin. Except for various scars from tests and tubes, he would pass for a normal person though.

We skipped Christmas and Hanukah completely last year. This year, a tree, a Menorah and a few other things will be all the decorating we (I) do. There will be four of us here and well though, and that is a houseful of holidays that tinsel can't replace.

A year ago, John was in the hospital at Emory and in what was (and I hope will always be) the worst days of his disease. I've been trying to get a sense of how level his plateau is going to be as he settles into what will have to do for "normality". I hope and expect a slow strengthening for him and occasional bumps, but hopefully not much more. Still, I've come to hate, or at least fear, the sound of the telephone because any call could bring bad news. The ocean is pretty flat when you look at it from the shore, but when you are at sea, ups and down are all you feel. I suspect that is what we will learn to live with.

John participates in a trial with Seattle on anti-fungal medication which requires him to FedEx blood samples weekly to the clinic there. Although they follow closely his results and care at Emory, the trial means that they are also regularly testing his blood themselves.

Yesterday, he received a call from Seattle asking that he go in today for additional blood samples and send them out. Me mentioned that they thought his neutrophils (the working antibodies in the white blood cells) looked low. Probably nothing other than an example of what it is like with this kind of life. I don't get sea sick, but the emotional ups and downs from such little things still cause me to react with similar symptoms. John remains cautious, appropriately so, but he doesn't seem to worry or dwell, which is good.

Debbie found a house in Decatur that would fit our needs well. Naturally, it costs too much, but John, for the time being and always potentially again, would have a whole floor to himself in the daylight basement, with room to park and an entrance of his own. It's just a thought for now, but one to consider. We are working on our house, and having it worked on, in the meantime - insulation, stripping and painting, gutter covers and lots more.

Courtney returns Sunday from a few days in California, and we have lots to do for her before she leaves for school in Peru. It will be a different and better Holiday season this year - perhaps as busy, but more our new norm for life.

There is no better way to relate good news than to just say it. John's bone marrow test results came back Friday and he shows no signs of leukemia. More importantly, his stem cells appear to be 100% those of his donor.

The best tests might miss some leukemia cells and can't determine what cells will "go bad." His stem cells are all those of his donor now, rather than the ones with "dysplasia" from before that turned cancerous. That means he has good reason to hope for a long life with no relapse.

Except for some mild GVHD of the stomach that low doses of Prednisone are handling and low immunity still, he is in as good a shape as anyone could be for all he has been through. Time should help with those issues, and it seems that he may have lots of time now.

That's plenty for the moment. It's raining outside, but it's a good day inside.

It will be next week when we hear back from John's bone marrow test, but they expect no signs of leukemia and are more interested in how much of his "old" DNA shows up and how much is of his donor's healthy cells. He will be reducing his anti-rejection medicine this week and is also tapering his Prednisone. Good things to be thankful for.

I ran across a web article on "Letting Go of Hope" that caught my eye. I need to read it again but it is thoughtful, even if political. http://www.commondreams.org/views05/1122-21.htm

Courtney will be staying with us now that SCAD is over for the quarter. Four people and two dogs in an old three bedroom, two bath home. It will be fun, though she will be in California visiting friends for part of the time.

We are off to Florida for the holiday and will be back Saturday. We've realized that it has been a year and a half since I've seen my in-laws. Time is relative and you can't catch up on it, but you need to with your relatives. Tis the season to do that.

It has been a year today, November 19, since John called from the doctor that Friday afternoon, so shocked and confused that he had the doctor explain that he had leukemia. Debbie was closer and got there first. The three of us heard the diagnosis of AML.

There was the month in the hospital that followed. We moved John in with us. The infection came in January and there were weeks more in the hospital. He didn't come back from chemo as he should, so we skipped further consolidation treatments and planned for a bone marrow transplant.

In April, we moved to Seattle. On May 26, John had a second birthday, of sorts. We returned then to a hurricane On September 1. Our small house seems like a hurricane at times, with two hairy, barking dogs (one blind no less) two working old people, painters and all, the noise of the city and with John, his girlfriend and others passing through at odd hours.

To celebrate 180 days post transplant, John had a bone marrow biopsy yesterday. The results will take a week, but other signs remain good. His GVHD has been limited to chronic stomach upsets that are being treated with low doses of Prednisone. His blood counts are reasonably good, but he hasn't needed any additional blood at all, which is excellent.

John's energy level is low. I think part of that is simply who he is, a 20ish guy without a lot of direction in life. Some relates to the fact that he has to think twice about things we ignore, like going outdoors in the daylight and going into a public place where he might be exposed to something.

I am tired inside and working to make my life smaller, though without much success so far.

Life is different now, but it is life, and, with all that comes with it, life is good. We are glad for it to go on, and we hope, on and on. That is my hope for you.

Musings before morning to begin.

Most people count years. I have come to appreciate days and we've been back from Seattle now for 77 pretty good ones. When you realize how fragile life can be, it matters that much more, or at least it does to me. I think most prefer not to think about it because it would be hard to live a normal life, and, as I think about it, that's quite true. The sun will come up in the morning is sure enough, but will one's world be like?


My assistant at work has been out of the office for most of several weeks helping her mother who has had stomach surgery for cancer. There are no medical studies on the subject, but I'm sure that the cause has to be children. I've been able to hire a temporary person to help with related work. She came to Atlanta after Katrina. She was to have started at a law firm there the day of the flood. Good people and families, all learning to cope.

And in other news, Courtney has been accepted to attend a semester in Peru beginning in January. She will be in Cuzco, up in the Andes about 40 miles from the Incan ruins of Machu Picchu. That's a long way away.

John continues to do well. He will have his next bone marrow biopsy next Friday, which will be 180 days from his transplant, half a year, if you will.

Pay checks pay the rent, but the real reward for work is health insurance. That's the truth and most with it take it for granted. They shouldn't because those without health insurance do not. I happen to be the rarest when it comes to such things, having two sets of coverage.

John will drop off my employer's policy when he turns 23 in February. My early retirement policy, however, continues until he is 25 if he remains a full-time student. John has hinted at graduate school - two majors and a minor aren't enough - and it looks like that might be in the cards.

After he reaches 25, I can purchase up to 36 months of the same coverage for him under the COBRA laws. Somewhere then, before he is 28, John will have to get a real job, with his own insurance. That will be just over 5 years and if he has had no relapse, he should be covered, even if preexisting conditions are excluded. Days become years, if all goes well, but health insurance needs to be there every morning.