Hope is the thing...

No, no news remains simply, no news. John remains fair and well, and we remain in waiting. John's white cell counts have fallen slightly, enough to suggest that we catch "The Hitchhiker's Guide" in a matinee and not in the opening night crowd, but not any cause for greater concern. Beyond that, the layers of advice we have received concern how we might bide our time, only lacking the same sense that their forseeable tomorrows and ours might not be alike.

I found myself waiting in the clinic late today without a book, and John shared his latest "Greatest Book Ever." It was a comic, of course, by someone he has "met" in the virtual comic world, but it also turned out to be infinitely more deep and rich than any from the heart of Holden Caulfield. It was a short "life" story that captured a bit of hope in an artfully worded shade of self-doubt. Five stars and all thumbs up.

Private lines should not be crossed in the architecture of doubt and self-worth, but it is enough to know that sentience is a mixed, at best, blessing. In moments that are hard, presence can be all the more difficult to experience. Hope, I suppose, exists outside of and in spite of time and it waits patiently.

We learned more yesterday on the medical reasons for John's donor's delay, but not very much. The donor will be receiving a CT scan and a chest xray and it will be late next week before we are likely to learn more. That's all John or his doctors can know. The rights and morals of lives that become literally intertwined can raise unusual and interesting questions. The donor could have found reason to worry about his own health in getting ready for the transplant and has the right to address it privately. We wait for a transplant and wonder.

In the meantime, the doctors and the National Marrow Donor Registry are actively working through the next candidates to line up another donor. There is another matched donor with detailed HLA typing, which should avoid having to start over from scratch. If we have to change donors, however, we would likely have a delay of at least 2 weeks. Fortunately, John is in remission and otherwise well, so we are not as desperate as some patients might be.

John handle the news well enough, with a "Whatever" and a "What can you do." He spent most of the day working on publishing his comic zine and even walked almost 2 miles to Kinko's and back.

John mentioned yesterday that his old MP3 player was "dying" and added, "Have you noticed how many of my things that has happened to?" We attributed it to "bad Kharma", which we hope is being siphoned off into computers and game systems.

It's interesting that you can laugh at, and joke about death, when it is real to you and often in the back of your mind. I think we treat it like a deadline for a term paper or court filing - you know you might not make it if something goes wrong, but you just aren't going to let that happen. I think our daily thoughts are about getting well. It's the one's you don't let into your mind that keep you up at night.

It is still Monday here, but through the magic of time travel, it may not be where you are, or I should hope, when you read this. First, the headlines.

Minutes before we sat down with the doctors at 4 PM this afternoon, they received word that for medical reasons John's donor required another week's delay. Thanks to the mysteries of the laws of privacy, we can't know why, nor can John's doctors.

(The vagaries of blog formatting don't lend themselves to footnotes, but consider this one. Since the days of Aquinus and Anselm, only two further proofs of the existence of God have been offered up. One is the magic of what a baseball can do over the distance of sixty feet-six inches, which proves that God is a good sport. The other is that a "privacy lawyer" is not allowed to know why his son's bone marrow donor isn't well enough to donate, which proves that God enjoys a good lawyer joke .)

Although this delay is quite late in the process and neither we, nor the doctors, know the reason, we were assured that a week likely means that and is not the medical equivalent of an airline intercom announcement. What it means, however, is that John's schedule is set back for that period, and he will not be undergoing the preparatory steps scheduled for Tuesday that involved removal of the existing tubes in his arms and insertion (by Dr. Hickman) of the replacement "Hickman line" in his chest.

Fortunately, John's medical status remains as good as a leukemia patient could have, so a week's delay is only that. Still, we have seen two donors come and go and now his third is not so certain. If you add all the strike and outs in an inning, they add up to the chances of a cat with nine lives, but leukemia is neither a game nor a folk tale, so one is left to wonder.

John's response to this news was, "Well, whatever...", which was trustingly mature. When we left the session, he asked to pick up supplies to publish a print "zine" (if you have to ask, you are completely lame, trust me) of his 24 hour comic from the weekend. He is focused on building his publishing empire, and I'm using the perspective of distance to construct a better way to handle some of the privacy concerns at work.

Well, it's late, or perhaps early and time for tomorrow. After today's curveball, I'm hoping for a change-up, and maybe a smile from God.

I guess I must have been more tired than I thought, since it is now Sunday morning and I'm just now sitting down again to post. The past two days have been busy ones, filled with what passes these days for "normal" life. They have been good days. John is comfortable walking a mile or more and has found a few comic and music stores that fit his tastes. He does miss his friends, but he is able to stay in contact pretty well through instant messaging.

Earlier in the week, a friend, whom I'll call Ted because that is his real name, said that the board of a corporate counsel group I've been a part of wanted to do something for John. I've resisted offers of charity for the most part since all this with John started for the reasons you might expect and more than a few others. Certainly there is that touch of pride, but it has had a lot more to do with being overwhelmed with the outpouring of kindness and not knowing what to say.

Our physical needs have been remarkably few and the flexibility we have needed in our jobs and in being able to travel has been given without condition. Other than having a donor and being able to receive a transplant here, that freedom has been our greatest gift. Sometimes though, the many "small" things have been particularly helpful. A ride to the airport, keeping the yard, the gift of a car (not so small), housesitting (priceless), each and all matter more than we can say thanks for. Pretty much every day, we receive a call, email or letter from someone saying he or she is thinking of us. Each is a breath of air, and sometimes seemingly little things have made a big diference, all of which takes me back to Ted.

John has at least one of nearly every video game system ever sold, but he hadn't purchased the newest Sony PlayStation Portable that came out recently. The "study" of video games is an academic pursuit for John and not just a time filler, but even then they are a good way to fill weeks of time in semi-isolation. This time, perhaps because Ted is too good and giving a person to say no to, I mentioned the new game system.

Friday morning, it arrived in a box. John got up while I was eating breakfast, found it and was really overwhelmed. That kind of kindness can't be taken for granted. His spirits have been the best I've seen them in a long time since then.

Having said that, if anyone out there feels moved to send John more games or the like, remember that one can have too much of a good thing and there is only so much dragon bashing and skateboard crashing that a parent can take.

With so much time on his hands, John has been expanding his web world to include a new comic and a new host page for his websites. You can find it at http://www.angelfire.com/comics/ihatethisgame/main.html.

I think the underlying purpose for the page is to raise money for John to buy a Vespa, which is a small motorcycle. This is pretty clearly a sign that all the drugs he has had to take have taken over his mind. I did, however, donate $1 to his fund, mostly to see if it really worked. Unfortunately, it did. Why is it that children seem to end up doing the same stupid things their parents did? If it doesn't make you question evolution, it certainly proves there is no intelligent life on this planet.

For 24 hours on Saturday, John participated in an internet comicathon, where thousands of virtual Charles Shultz types conceive, draw and complete 24 page comics. They are then published online. I will get the site, and post it, although I'm sure he will post it on his sites. It took as much energy and effort as writing a term paper in 24 hours, although, of couse, I've never done anything like that.

Debbie flew home last night for a couple of weeks of work and work-related travel. Becoming a step-parent was a breeze for her compared to the roller coaster car that our family has been riding. There isn't any way to describe what a help she has been.

This week begins the lead up to the process of killing off John's bone marrow and the transplant, which still looks like it will take place around May 5. Tuesday of this week, John has his "port" tubes removed from his arm and replaced with a "Hickman" line in his chest. It is all "minor" surgery, but it is too weird to describe. If you want to know more, you can research it on the Internet or watch a Star Trek movie about the "Borg."

On a personal note, late Friday John had time off and work quieted down, so Debbie and I went down the hill to Lake Union, rented an old wooden sloop and spent a little time sailing. The lake is the home of the Center for Wooden Boats and is a mini-version of Mystic Seaport. They publish the magazine "Wooden Boat" from the Center, have a nice collection of small wooden sailboats and build and maintain others. Web Chiles wrote that "a sailor is an artist whose medium is the wind." It was good to brush the waters for a time.

It is late, at least on the east coast and relatively so here, so a quick interim post is all I can muster.

John's biopsy reports were excellent. No sign of recurrence and no evidence of invasion into the brain. He remains slow to recover from a marrow standpoint, but that is, in balance, a good thing. We remain on track with everything pretty much as good as it can be for him.

His spirits are such that he has developed a feisty edginess that amounts to testing those around him. I know the signs and recognize them as part of the emotional side of all of this.

I'll fill in more tomorrow. For now, it's time for me to rest a bit.

The spinal tap had its predicted effect on John. He spent Friday afternoon and the entire weekend on his back to reduce the pain from his headache. I gather that in extracting fluid from the spine, the balance of pressure in the brain is thrown off, blood vessels expand and one gets "the mother of all" migraines.

John didn't want to go in over the weekend, but did take some painkillers that were prescribed and I picked up Friday night. Monday morning, I took him in and he threw up while they were doing his blood test. He spent the rest of the day in the clinic's triage getting (I'm not kidding here) a "caffeine drip". The idea is that caffeine consricts the blood vessels in the brain, restoring the balance and reducing the pain. Think of all the work one could get done if you had a permanent IV and could get a caffeine drip direct to the blood anytime you wanted! I had to sit there drinking coffee the old fashioned way.

The triage floor at the Center is a valuable half-way house solution. Elsewhere, they might be able to prescribe painkillers or admit someone into the hospital, but having a bed for a day and some intensive care can be all that is needed. John certainly did feel like a new person when we left.

Interestingly, the clinic was orgainized so that all the people he had appointments with were notified where he was and came to him. We had a session with the dietician, who will allow him to have fresh fruit and vegetables if they are carefully washed.

The transplant coordinator also came by and we were able to meet her. She says that the donor has checked out well physically and is scheduled to have the 5 days of shots, followed by a full day of stem cell filtering. She will have a special courier wherever the donor is standing by with a cooler. He or she will personally deliver the stem cells that day. Pretty cool (literally).

I'm being very sensitive to any physical or emotional signs from John that might signal changes in his condition. His appetite has been down a bit in the past several days, but that could be from the headache. Yesterday he had stomach pains, but there are lots of reasons for that sort of thing. His spirits were much improved late in the day. What worries me though is that he has been complaining of bone pain, which is pretty unique to leukemia and might hint at a relapse. We will know that question when his marrow biopsy comes back later this week.

Today, John has various appointments in the morning and then I have a caregiver training session for part of the afternoon.

It's raining in Seattle - not the passing cloud we have known so far, but a hard, cold rain from low scudding clouds that promise more of the same for days. John will be content, most likely, to rest on the mattress he pulled out into the living room in front of the TV and Play Station. Lying down, he says, eases the soreness from his various tests. Both he and Debbie will sleep late, a talent I never developed. She will get cabin fever, perhaps later in the day, and we might brave the weather to visit one of the many places here worth seeing, but John won't want to go.

Some things you can predict, but others, like John's future, are hard to know. We are here with hope where he will have the best chance of success by far, and we are vastly more fortunate than even most other patients that are here, because of all those who have allowed and helped us be able to drop so much of everything and come. Even the smallest kindnesses, have been and are invaluable.

While the rain was sweeping in yesterday, John had a CAT scan and a heart exam, a fairly light day, which was a relief for him, because of the soreness from his biopsies of Thursday. As just one example of how good this center is, the duty nurse called us after hours to report that the lung spots from his last scan in Atlanta had cleared (fluid that could lead to incurable fungal infection). She adjusted his medications accordingly, asked about his discomfort and prescribed a painkiller. We were able to drive over to the clinic and pick it up that evening.

We should get the results of John's tests back next week and can only hope that he remains in remission. His type of leukemia doesn't usually last that way for long without repeated chemotherapy. Because he has been slow to recover, they haven't been able to continue the treatments as often as most, so timing the transplant to be soon is important. His seeming current good health is thus a mixed blessing.

One thing John would really like is to find a friend somwhere here. The clinic assigns a volunteer to each patient and that may help, but he still misses his friends in Atlanta. Yesterday morning he told me he "married" one by long distance call the night before.

For now, it is back to the rain and some breakfast.

We have been through three days of meetings and tests at this point, culminating this afternoon with a spinal tap, to test whether leukemia has penetrated the brain, and John's seventh bone marrow test. We should get the results of both in 7 to 10 days. He has had blood drawn, platelets received, two dental exams, xrays, pulmonary and heart exams, a psychological study and will have a CAT scan and heart ultrasound in the morning.
We have now met with most of his team of doctors and nurses and I'm quite impressed. We spent an hour yesterday with the attending physician who will be in place up to the time of John's transplant. He was optomistic about John's prognosis. He used most of the same statistics others have recited: 8-10% of young recipients die during the first few months from failure of the transplant, acute graft-versus-host disease, infection or other complications. 20 to 30 % suffer relapse and don't recover, and so on. He said John had all the indicators of being in the ones left and he needed to do his part to make sure he was. 50/50 is all about the glass beingt half full or half empty.
We discussed chronic GVHD and its complications, as well as others, such as cataracts and secondary cancer caused by the chemotherapy. He added that if John is well in 18 to 24 months, he should consider himself as close to being "cured" as they use the term.
We were able to find John a new version of the Play Station 2 today, so he is sitting carefully on his bandages and playing games now. The Internet is up and Comcast is working simultaneously, so this is a good time to post recent news. Debbie and I are leaving shortly to handle dinner.
There is usually too much that needs doing to stop and realize how tired you are, but once in the morning and again at night, "reality" surfaces again. I got a mental boost yesterday from an article published concerning an informal survey of attention to privacy in businesses with an online presence. Cox was rated in the top 20. We probably would have been in the top 10, except for the fact that we lacked any seal of approval on our website from an independent rating group. The irony is that our standards were so high that the rating group couldn't figure out how to fit us within its qualifications.
Off now to deal with dinner.

"Perfect Strangers" turns out to have a unique and literal meaning, it seems. Several weeks ago, Debbie called a fellow lawyer here in Seattle to see if there might be a way to find someone with a reliable car that we might buy or rent here. In two days, a friend of a friend of a friend offered to give us a 93 Volvo wagon with a dent and dangling side mirror. Debbie offered to buy it, but they insisted, although they did agree they would take it back if that was the best way for us to dispose of it when we leave.

Last night, we drove out to their house. It was modest, but well cared for, like many homes here. We sat in their living room, which had no ceiling because they were renovating, with two children under five climbing over everyone and everything and got to know some of the kindest people there may be. They are fairly young and not wealthy, but charity has little to do with how much one has to give.

We took them some roses, a modest gesture at best, and the five year old took them, saying, "These are for me, because my middle name is Rose." We talked about how we got connected, how John was doing, their lives and made new friends in a half hour's time.

There is a grace to accepting charity that is hard to learn, and difficult to express, but I've found reasons to thank many in recent months. If any happen to read this, you know who you are.

We had our first appointment yesterday at "the Hutch." It was a combination of efficiency and attention that was reassuring. There was an hour of questions, an exam, lab work, an xray, a tour and a dressing change for John's port, all of which ended up taking the afternoon. The people, place and even the patients have an air of confidence, which is reassuring.

We were given his schedule, which may change due to the substitute donor's schedule. Currently, John will go into the hospital around May 2 and have his transplant on May 5. He will then stay in the hospital for 3 to 4 weeks for the new marrow cells "to take."

They think are minor differences in outcome between stem cell transplants and marrow transplants, but it seems to be a slight trade off between timing, and aftereffects. His transplant will be of stem cells, because of the donor's preference for the process. In the end, it is two ways to the same result.

Today is a long day of tests, ending in a session with the attending physician. John has adjusted well enough to Seattle, despite the chill and rain. He has settled into his room, and basically has a floor of the house to himself. He ordered a new Sony PS2 video game player, which should arrive today. He has talked to his friends by phone and plans to post photos of things on his web blog.

It would be easy to be completely absorbed by all these goings on, but others in the family have suffered their own losses and have their own struggles. They are sad and difficult to share from this far away, but we do.

This is the news from Seattle for Sunday, before John and Debbie arrive:

Nomadic life in the 21st Century is every bit as hard as it always has been. Still, I'm farther along than God was on the third day, but he had a lot more to do than me.
Things are unpacked, the house is cleaner than a hosptal could hope to bean and I'm getting electronics wired today.
Seattle is a really great town - clean, green, with a hint of salt in the air, room to walk and shops along the way, interesting and nice people (occasionally one or the other, but mostly both in one).
So much for now. The camels need food, the tent work and the goats are everywhere.

Late yesterday, I got word that the first choice as a donor for John is"unavailable" until October. In the wisdom of those that broker life and death, that is all one needs to know, though the age of the donor and sex led to the gratuitous mention that he may be on military duty.

An acceptable match can be found for 80% of those like John. In his case, they have two more still "perfect" matches to seek out, and so, they are rushing a request on the availability of the 35 year old US male, who is the next choice. Somewhere in all this, I feel fortunate because he is lucky enough for yet another chance.

There is the chance of some delay from the switch of donors for any number of reasons, but particularly because Seattle requires that its donors be HLA typed in their own labs. If you are the best, you have that right. We have decided though to get John out there as planned.

It took three weeks to get an initial appointment for him and we can't let that happen again. If he needs an interim consolidation round of chemo due to any delay or recurrence, it needs to occur there, if only because he might be too ill to travel again for months. So, I leave to set things up Friday and John and Debbie follow on Monday.

Every time you flip a coin, the odds are the same, even if you have hit tails again and again. Fate has not let up on our family in some time. Those things are personal to others and not to be shared here. If you happen to be one affected, then I hope you know that, just as there is always room for more love, so too it is with sadness and its sharing. Bless you.

When things are well, as thankfully they are for now, you try to return to some normalcy. The daily routine returns, but it is not as real as the worry that colors all that makes up everyday life. We have been able to return to some form of routine, with John being well enough to get out, but not well enough to return to chemo. His needing less care leaves time free again, but the mind seems to fill it with worry for both John and Courtney.

All that goes into moving more than fills most of the time that is open, but anxiety still insists on its place, most often sometime before what most thing of as morning. Worry accomplishes little, but it doesn't seem to care, only demanding your attention. We certainly have plenty to worry over these days.