Hope is the thing...: February 2005

Saturday, February 26, 2005

Day 100

Round numbers, if nothing else, are landmarks within troubled waters, markers to bouy a point in passage.

John's blood check today showed slow but consistent improvement. More than relapse, his greatest risk is from infection for now. I learned this weekend of one patient waiting for transplant who developed a fungal infection. It lodged in his liver and it took a year for him to recover. It should make you appreciate every day a bit more.

John has an appointment with Dr. Khoury on Friday afternoon, which ought to be the last step for him in his decision on transplants. I've been learning a lot about nuclear medicine and how iodine can be attached to and directed by antibodies. I still have a lot of digging to do to get a sense of this alternative to the standard treatments today.

So, today comes and ends quietly, but with no more certainty than any other. I suppose that is true for everyone, only we find a way to forget in order to assume that tomorrow will be like today and on from there on. As for me, I'm looking forward to 200 for now.

7:47 AM | Permalink |

Thursday, February 24, 2005

Day 96

It might be easiest to summarize today's visit at Fred Hutchinson here in Seattle by saying that I don't think John has his mind made up yet on whether to have his transplant here or at Emory. I understand, I think and it really is his call to make.

We had a remarkably well orchestrated greeting, consultation and tour at the Center this morning. It's really a world class as a facility, a touch like a hospital in the interior, but staffed with casual West Coast type people. I got the impression at times that this is where the best and brightest go to start their careers and where the Nobel winners and those who have procedures named after them come back. Oh, and it sits two blocks from the harbor, so...

I had three questions in my mind for the "intake" doctor that we met with for consultation. He had reviewed the file well, but Emory had not gotten him the truly important information on the potential donors, so we weren't able to discuss the merits of each. Debbie was able to call and put some pressure on Emory, but we will have to wait for the written report for that aspect of advice.

The discussion went through the course of treatment to date, with the same conclusion that Emory has come to; that is, that John had Myleodysplasia (MDS) for some time and that it developed into AML. The likely reason he has not bounced back from the first consolidation is the same, MDS - his stem cells aren't forming blood cells as they should. There was more about platelet abnormalities and other vagaries that seem like adjectives for describing wines, but the point was that my first question was answered. They agreed that, while MDS at his age is very rare (MDS is rare at any age), Emory's diagnosis seems validated.

The answer to my second question was whether to go through the "traditional" several rounds of consolidation chemo or, as Emory says, move to a transplant now. The answer, at least to that specific question, was clearly yes. He said that there isn't enough evidence that the extra chemo would help, at least in his case (it can cause tissue damage) and, most importantly, it extends the period that someone like John would be subject to potentially fatal infection.

Although not in sequence, it was interesting that the doctor was remarkably frank about John's chances. Other's have talked about "chances of successful treatment for a year or more" or even about "high likelihood of mortality", but he looked directly at John and said that only about 30% of patients with your condition, while generally older, survive. That is hard for anyone to hear, particularly at John's age. He followed by other statistics that were actually worse, but they don't bear repeating.

I took the time to talk about the most recent published statistics, both overall and by center, first of all hoping to brighten the outlook for John a bit. I suppose 50/50 survival for a year or more could be considered "the glass is half-way from being completely full" things, but the latest overall statistics are about even for John's situation, and probably better, given his age. Seattle's statistics are closer to 60%, and I found it interesting that neither this doctor nor the doctors at Emory have looked at that data. It may be because quantifying subtleties of cases can be hard. I know statistics for winning a legal case exist, but I tend to treat those as only one consideration in deciding how to handle it, so I shouldn't be surprised. Parents, though, probably want something concrete to hold on to at this point.

My third question was whether Seattle thought that Emory could do basically as good a job as they could. I've heard Emory's response, which is that both use the same protocols and Emory bills itself, according to one person, as "The Hutch East". The statistics don't bear that out, but I wanted to hear the answer from this side. What we got, however, was something of a curveball instead.

I've read a lot of the literature, but I've only seen one mention of a different protocol, referred to as "1803", that the doctor suggested we consider. It involves a radioactive isotope of iodine attached to an antibody that is targeted to leukemia cells. This has allowed them to use a much lower dose of the final "ablasion" chemo and radiation to kill off the "old" bone marrow, without all the harmful, long and short term side effects. They call that "low dose conditioning." If all goes well, it is done basically on an outpatient basis, with only 3 to 5 days in the hospital. The transplant follows and can actually be done several days later outpatient, as well.

Prescription medicine ads have fine print and so does this. It has been tried mostly on older patients who have been too at risk to take high dose chemo and radiation. Of the 32 patients (a small number), 21 of whom have remained disease free (65%). The longest so far is only 15 months, but the mortality curve does start to settle out at about a year. That means it is fairly new, not widely used, pretty promising, but the long term results aren't known yet.

To add to the uncertainty, there have been only 3 younger patients tested. Two are alive and well and one died of an infection that seemed to be unrelated. Small numbers, but with similar percentages, but not for long periods. To go this route, or simply to come here and follow the strong conditioning approach, we might be a month or so before starting. Emory probably could start sooner, which is important for someone without an immune system and a risk of relapse. Either approach will require about the same period of time for treatment and recovery - 3 to 4 months of careful treatment and then response to whatever the level of graft versus host disease that follows, whether acute in the 6 month's range or chronic and long-term.

Apart from the considerations of location, Seattle versus home, and the known versus the unknown, there is a lot to weigh in a very short time. Timing is critical. Chemo and radiation have toxic effects and, paradoxically, often cause cancer over time, as was the case recently with Susan Sontag. Targeted radiation isn't proven, but the current massive dose approach isn't that successful to start with.

Anyway, there is a lot to think about. One interesting thing of note. The preferred means of delivering drugs and such these days is intraveneously through a "Hickman" line, which is plug put in your chest, rather than the port that John has currently in a vein in his arm. Dr. Hickman comes in regularly here and installs Hickman lines himself in patients. Impressive, but so are their three Nobel laureates.

I could go on and on and back and forth, but it is late and the plane will be early. I'll try to fill you in on more and on housing and such later. For now, I just think about how parents are supposed to know what the right thing to do is whenever there is a hard decision. I wish I knew and I wish I knew what to say to help John decide the right thing to do.

7:34 PM | Permalink |

Wednesday, February 23, 2005

Day 95

Debbie, John and I leave shortly for Seattle for a consultation at Fred Hutchinson, which is the leading center for bone marrow transplants. We will be back Friday and then have a session Monday with Emory again to schedule the transplant (if John is to have it here).

One thing we have not had to deal much with is insurance beaurocracy. In fact, I would do a testimonial for them, until today. John has a prescription for a brand new antifungal antibiotic. The mail order program for such things takes a minimum of 8 to 11 days, if you pay for overnight mailing. The cost for the prescription is $30. It is designed for medications that you take for long periods.

If you need something immediately, as is often the case, you have to go to a local pharmacy and pay whatever the charge is, although you can submit for a partial reimbursement later. John's one prescription, submitted this way, would cost over $2000.

The sad thing is that we are one of the lucky families.

12:42 PM | Permalink |

Monday, February 21, 2005

Day 93

Just for fun, and because there is little in the way of news today, I thought I might include the whole of Emily Dickenson's poem that I borrowed from for the title to this blog. She never titled any poem and wrote with unusual punctuation.

"Hope" is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I've heard it in the chillest land –
And on the strangest Sea –
Yet, never, in Extremity,
It asked a crumb – of Me.

#254 - Emily Dickenson

9:23 AM | Permalink |

Saturday, February 19, 2005

Day 91

Yesterday, I went with John for his regular blood test, and expected blood transfusion. We also expected a visit with the doctor to talk about progress toward a transplant. While we were waiting for the day's blood levels results, Dr. Khoury stopped by to talk.

He said that John's immune system continues to recover poorly and they theorize that it is because he has lapsed back into a chronic preleukemia state, not chronic myleomia because they aren't finding cancer cells, but more like an MDS patient. I think they draw lines in a spectrum of this disease from one end to the other and give names to the ranges based on what they see.

He said he thought the best thing to do now is to proceed directly to a transplant as soon as possible and without any more intermediate consolidation treatments. There are three "perfect" donors to choose from and all are willing. We could have John in transplant in 4 to 6 weeks.

This seemed like good news in an odd sort of way. We talked in more detail with Mary, the NP, who said that a relapse in the meantime was much less likely than an infection, particularly a viral or fungal one that could cause pneumonia. That's why moving forward quickly is critical.

I asked about the risks in skipping consolidation. She said they really don't know what is the best program, only that some work better than others. This program makes sense and has the benefit of avoiding the toxic effects of extra chemo. Given John's unusual reactions to chemo so far, that doctors mutter about and take pictures of, I tend to agree.

They want us to get our consultation in Seattle as soon as possible, which is planned for next week, and be prepared to make a decision on where to go forward as soon as we return. It's John's decision to make ultimately. Right now he wants to see Seattle, before he makes up his mind, which seems a ballanced attitude.

I asked Mary about statistics. She winced and said that, for someone like John, his odds were about 60%. It really is about 50/50 for someone in his age group with AML. They don't factor in the fact of his MDS like status, but MDS patients have similar outcomes from transplants.

Mary didn't say two things. Those survivial rates are for one year only. Time brings them somewhat lower, but at 3 years you can start to think about living in the world again and at 5 years your odds of getting cancer are statistically the same as ours, which they define as a cure.
I asked Mary about Emory's statistics and she said that was a discussion to have with Dr. Khoury. That's an appropriate answer, but the fourth time I've been put off when asking.

The National Bone Marrow Donor Program obtains detailed statistics from its participating centers. They track each center's survivial rates for transplants to treat each type of blood cancer and they factor in age and factors that affect risk. Since 1992 they report that Emory has done172 bone marrow transplants for blood cancers, 64 of which were for AML. Within John's age group, they appear to be 0 for 2 at surviving a year. Not so good, but the reason I've kept asking is to get behind the numbers. So far not so good on that. Overall, when you factor in risk, Emory has performed at a roughly 30% level, when it should have been about 40%.

I do know that some of Emory's transplant team moved to Northside in the 1990s and that Emory has gone through a couple of rounds of rebuilding its staff sice then. Dr. Khoury, has been there only about 4 months. Dr. Chi about the same. The others involved in transplants, we've not met at all.

Seattle has performed ove 1500 transplants, 347 of which were for AML. Their results overall and in John's age group were above 50%, well above the predicted results. Thus the reason for our trip next week.

Mary cautioned that getting John into a transplant quickly should be a top priority and we should check immediate availability out there. I also think that we should ask Seattle's opinion on the idea of moving straight to transplant now. I like it, but it might increase the risk of relapse.

Overrall, they've done these transplants 15,000 times and what they know is less than what they don't know. You can call it an "art", but poisoning a patient to fight a disease is not much more advanced than blood letting (whicht they still do, by the way). The transplant process itself remains close to trial and error. I think that's why experience is important.

While we were with Mary, she persuaded John to have a bone marrow biopsy test on the spot to get a status on what was going on in his bones. That was the 5th test so far. A nurse chided John for not being able to recite his various blood levels and where they have been at each visit. She said he would be doing this for the rest of his life and since it was his life, he should take charge of it. That was one of those remarks you get that remind you that all this is permanent - if you are lucky.

Comments liike that still leave one drained. Debbie has saidthat when she is away while travelling she is preoccupied with the need to be here. I feel the same way. People say I shold take a break, but unless it's doing something for John or nearby, it's of no use. I can sit here and type while I can't sleep, but there is a lot of lost sleep time to fill.

John did have several friends over for dinner, gifts an games last night. He has very good friends who treat him as normal, despite how he looks and the fact that he is tied to his room. They gave him a few gifts. His new computer is stil a week or so away from arriving. I'm tired now. I'll fill you in more later.

5:27 AM | Permalink |

Friday, February 18, 2005

Day 89

February 17, John's 22nd birthday. Wednesday night several friends of his dropped by, Jonas, Jackie and Dan, to hang out. We all had dinner and not long after John faded and went to bed. He seems a part of such things, but also somehow apart, uncomfortable if he thinks he is the center of attention, or if his disease is the elephant on the table that everyone sees, but won't mention.

This isn't about me, but today was a hard one for me. Work went badly, with someone actually refusing to do work, and no one to handle some priority needs, but at least those that earned it were able to receive a well deserved award for the company.

I made it home feeling sorry for myself and a bit shaken by a semi that tried to change lanes with me in his blind spot. Debbie was out of town. John was there at his computer, quietly working away on Zorro and Ester. We sat and talked about geeky things for an hour or so. I introduced him to BoingBoing, a top blog that I use to sense what Internet and Privacy issues are on the minds of the early user set. He pointed out PennyArcade, which is the informal publishing house for Internet comics and those aspiring to be.

We ordered pizza, the closest thing to a cake, pie or any dessert he cares for, and used it to celebrate his birthday. John and I talked about the history of his comic characters, how he has evolved them, others he might add and whether he should start something new at #300, which comes up soon.

The two of us celebrated his birthday at the kitchen table that way. For most of the time, we didn't even notice the elephantine question there of whether we would see 23.

He has another round of the usual tests Friday and will probably spend the day getting blood and such. We plan to see the doctors in the morning to discuss his transplant and get a sense of timing. There should be some news to report from that.

For now, it's just a hard day that I wanted to be special. Adrennalin (spell check isn't working), which is what I live on, doesn't work well against the small indignities that wear you down.

6:23 AM | Permalink |

Monday, February 14, 2005

Day 86

John's white count actually dropped in his blood test on Sunday. He thinks it's just some thing where the rounded up before and down now and nothing to note, but I'm sure its frustrating to him. He is a lot more patient than I would be though.

He goes back on Tuesday for another test and perhaps blood or platelets. On Friday, we have a second session with the doctors on the transplant status. I guess we won't hear anything from Sarah until then.

John and I had dinner with Dad and Dottie Saturday, which was very nice and a chance for John to get out. Other than going to the clinic and one or two stealth trips out, he's pretty much still confined.

Oh, we did order him a new laptop yesterday for his birthday. That will keep him busy when it arrives in a week or two. John's birthday is Thursday. I can't really think of what he would want as gifts, other than that. There is always the idea of a gift certificate to Gamestop, I guess.

Anyway, that's the news for now.

9:01 AM | Permalink |

Saturday, February 12, 2005

Day 84

This numbering of days has devolved from counting out the time of a crisis to numbering the many days now since the world, or at least our world, completely changed. Such is the long and the short of it, I suppose, but it does add a sense of perspective.

John's white blood count yesterday was .6 (or 600), still low, but finally past the point where he actually should be home. He goes back Sunday again and twice more during the week. Friday, we will meet with the doctors again to discuss the status of his donor matching and the rough timing for a transplant. I haven't heard from Sarah, the nurse who is handling the process, in two weeks now, but she said then that he could end up with a choice of three possible donors, which is about as fortunate as one gets, I think.

We are mulling over the merits of Emory for the transplant, but I think I will save all that for another day.

7:19 AM | Permalink |

Friday, February 11, 2005

Day 83

John's most recent blood test was Wednesday and his white count remained at .4 (or 400), but some of his other counts did improve. Given his lack of immunity and the current flu season, he's stayed quite isolated. Debbie and I carry a bottle of Purel and are as compulsive about using it on our hands as Monk is on the TV show. I wipe down the kitchen and bath three times a day, because I don't want John to end up back in the hospital again. Technically, though he should still be there, given his blood counts.

Debbie is headed to visit her parents this weekend for her mother's 75th birthday. I had to drop out because John needs someone around.

I heard an interview of an author of a new book on the working poor the other day. He said they could not afford the "luxury of rage." Something resonated from that phrase, and I mentioned it to a friend who also has a child with long-term, major problems. He translated the thought to me by saying we couldn't afford the "luxury of just falling apart" over helping a child face all this. The thought probably doesn't make as much sense to anyone who hasn't faced such things, but it did to me.

Debbie, whose balance is as level as the sea and as predictable as the tides, is working hard to cope with all this too. You just want to be able to "do something" about it and there isn't much that can be done that we aren't doing. Patience, care, good food and encouragement is about it most of the time.

Fortunately, John hasn't succumbed to the luxury of rage, though he, most of all, has the right to that sense. He does what he needs to each day and copes pretty well that way, I think. He goes back for a blood check again today.

8:07 AM | Permalink |

Tuesday, February 08, 2005

Day 79

Days without much news are generally good days. Yesterday was pretty much one of those days. John drove himself over to Emory for his regular blood check, and received a blood transfusion and platelets.

His white blood count is still at .4 (400, without the decimal). Technically, he should still be in the hospital, because he is still "neutropenic" (a fancy word for low white blood count). If he can stay away from anyone whose been either sick or who has been near someone who is, he is certainly better off and happier at home though. What a way to have to live.

John's been creating a history card game for fun. It's creative and really pretty funny. Who says you can't do anything with a History degree?

8:53 AM | Permalink |

Sunday, February 06, 2005

Day 78

The hardest thing about being a parent is knowing when to be what and never knowing if you are who you need to be then. Sometimes you push, other times you pull, and often you just try to be there to break a fall. There is no script to this sitcom known as life, there are no retakes, and you have know idea wen the show will be canceled.

John has been back for three days now. Saturday, I took him to Target to buy jeans another size smaller - 32 waist now (6 foot 3 and 158 pounds). I put another notch in his belt as well - smaller. Jonas and Dan came over for the evening to play video games and watch DVDs. That's a lot of activity for someone who has spent most of the last 77 days in a hospital bed.

Earlier Sunday, he met them at ComicCon, a local convention for comic book traders. Being well enough to go was a goal of his, and even though he wasn't strong, he went. I chose just to say, "Be very careful" and then I went out warm his car and wipe its interior down with Lysol.

He came back with a bag of comics, and was exhausted, so he rested most of the rest of the day. He's eating, but not nearly enough to gain his strength back. There are horses and water, chickens and eggs, rabbits and hares, but there are no pigs that fly and no comparison to measure what life is like learning to care for a nearly grown child with a will of his own who is also learning how to cope with a life-threatening disease.

I'm sure every half-decent parent wonders half of the time whether to push a child to succeed or let the child find himself in his own time. It's harder when it's not "success", but life that is the choice. For someone with, at best, a 50/50 chance, you want to shelter, protect and push with all your will to give him a chance to live, but for whatever side the coin lands on for him, what would all that do to prepare him to deal with life or the other side.

I said something not quite so direct to John last evening about my own uncertainty; that is, that I wasn't sure how to be the best help for him. I told him I probably didn't push him as much as some might, but I did want him to want to be better and to work for what was best for him. If it's hard for me to know what to do, it has to be so much more so for him. It's his own life, his future and he has his own 21 year-old uncertainties.

I have always been one to say, "I can do that" and then, like Roethke, I would "learn by going where I have to go." John has always been one to hold back until he was comfortable that he knew what to do. Now I am learning to wait, while I hope he will learn where he has to go. I guess, as for me, wherever that is, I will go there with him as far, and as long, as I can.

10:20 PM | Permalink |

Friday, February 04, 2005

Day 75

"Normal" isn't a word with much meaning anymore, but here we are, back again and well enough. I took John in for an outpatient check this afternoon. His white count was still .4, but he seems much better otherwise. His humor, color and appetite are improved and he seems much more at home. If you are competing with a hospital, it's not all that hard to look good. He had platelets infused this afternoon next to a guy who drove 2.5 hours to get her at 7:30 this morning and left to go home at 5:00. He comes back on Sunday.

John will be back for a check on Monday afternoon. His progress is slow enough that he will be weeks before he is likely to have his next chemotherapy. He decided today that he needs new pants, because he needs to drop another size to a 32 waist (6 foot,3 inches and 158 pounds), so we will need to get him some new jeans. All things considered, that's pretty good.

7:55 PM | Permalink |

Thursday, February 03, 2005

Day 74

Some days are better even than baseball diamonds. John's white blood counts today were .4 (or 400, if you move the decimal), the same as yesterday, but he persuaded the willing team of doctors to let him go home.

John is back in the world he has created in his room after eating (and hopefully, holding) his dinner. I think I'm a respectable cook, but compared to hospital food, I'm Cordon Bleu.

I hope we are back on track now. We have an examination in Seattle in three weeks, a solid outlook for donors and a reasonably well off patient. We are still on the roller coaster, but at least we are driving again.

For some reason, Super Bowl weekend ended up being one of those time when the hospital cleared out - a lot more than Christmas, actually. Figure that. There were more than a few patients on the floor released yesterday and today. Larry, bald and with the scar from the port in his head, bloated from steroids, but still with that kind bulldog look in his eyes was back and walking the halls, determined to be released for the game. The only visitor I saw with Wes was someone from the hospital, making arrangements.

This afternoon, John emailed in the final paper for one of his incompletes from last semester. That's a real sign of fighting back in my book, but it's funny how little grades and such matter now. Every kid with bad grades should come home and say, "Hey dad, I don't have leukemia. Oh, and can you sign my report card?"

Life can't be measured in karats every day, but you wouldn't trade the Hope Diamond for days like today.

8:12 PM | Permalink |

Wednesday, February 02, 2005

Day 73

Often days run together in the muddled routine that we pretend to call life. Only now and then, even if someone finds a way to snatch it away, the sun steals in and one sees something that matters, even if it can only be glimpsed and not quite felt. Today was one of those days.

A nurse wrote ".4" on the board in John's room early today, as if she and everyone there had a part in his reaching K2. John took the bait, with the help of a bag of glucose and an IV (Atkin's nightmare, I suppose), turned the corner and came nearly back.

The team of doctors and all was larger than usual today and saved John for last. It was clear that they had wanted for him, had struggled with him and chose to be a part of his success. He wasn't out of the woods, but they thought he was close enough to find the way himself now.

There's a chance, 50/50 I'd say, that we might get John home tomorrow, but soon now, for sure. It was a rich relief and one that should be savored a bit.

There were other troubles of a sort to temper, well to scar, the sense that something good was, for a moment, right with the world, but only hurt rivals joy, and hope is the rock to their paper and scissors.

I learned late today that the donor search had found several likely "perfect" matches to John's HLA type. One is a 47 year old man, whose chromosomes match his, at least to the moderate level that Emory examines for. There is also a 36 year old man whose type matches, although one factor has not yet been finalized. The third is a 23 year old male, but his final results aren't yet final. Still, that's winning the lottery three times in a row, and the prize is a chance at life. It's more than a lot of people get and more than most people take advantage of when they have it.

I tried to explain to someone today that there would never be another day without the risk that John would soon be back where he is now. This is pretty much as good as it gets, for as long as it can last. Is it sad or is it rich - no, the rich and the poor are both happy and sad. Some are only given a smaller glass than others. It's night now, but it is a good night.

9:25 PM | Permalink |

Tuesday, February 01, 2005

Day 72

It took all day for the results of John's bone marrow biopsy to return, which worried me more and more, but the report is that his marrow has a few normal cells and no sign that the leukemia has returned. All night and through the day, a boy John's age named Wes down the hall had large numbers of visitors going to see him and leaving crying. He has ALL. We've seen him and his family on the floor and in the clinic for some time. They've apparently given up treatment and he will be finishing his time before long. Sort of makes waiting for John's test harder.

I got John up to walk a couple of times today and he said he noticed what was going on with Wes. He thought that maybe the people were saying goodbye. I started to suggest that maybe he was leaving for a transplant and then just gave up and let the topic go.

John has made what has to be an enormous effort, given his state, to fight back today. He's walked twice and we wheeled our way up to the 7th floor where they handle transplant patients. He tried to eat again and again, but kept only a little down. They will start IV feeding tonight, which may help give him more strength. You can see that his eyes are less distant and show some fight in them.

He asked if Debbie would make some of his favorite chicken dish for him and said he wanted to try sleeping alone tonight. He said he thought he could handle that and my snooring seemed to be a distraction too.

Patience for now and a sense of relief, which would seem odd to anyone else with a child in the hospital. The scientists have been trying to figure out what the "dark matter" is that seems to make up most of the universe. I know now that it's a combination of irony and hope.

4:16 PM | Permalink |

Hope is the thing...

Hope is the thing with feathers, that perches in the soul... Emily Dickinson