Hope is the thing...

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.