Hope is the thing...: December 2004

Thursday, December 30, 2004

Day 39

We got the good news today that John’s latest bone marrow test showed his chemotherapy treatments resulted in a complete remission; that is they were not able to detect any leukemia cells. This is welcome news, since it gives him a fair chance of long-term success. The results did show that he continues to have precancerous cells in his bone marrow, which means that he will need to have a bone marrow transplant during the next few months if a reasonably good donor match can be found. This was what we expected to hear, but the process is anything but routine and has its own long list of complications. It also means that he will not be able to finish his last semester of college in the Spring, but he had already begun to accept that possibility.

John will start his next round of chemotherapy on Monday, January 3. As long as he stays healthy, he will be able to take the treatment on an outpatient basis, which means he will be able to stay at home overnight and you will see me behind my desk pretty much all the time. He will receive infusions twice a day at 8 and 4 on Monday, Wednesday and Friday. Afterwards, he will come back for blood tests regularly, while the donor search takes place – a process that takes 1 to 3 months in the best of circumstances.

There is a worldwide bone marrow donor network that should yield an acceptable donor for John. The chances are about one-in-a-million that any one person would be a match for John, but there are lots of victims out there who aren’t able to find a match. If anyone is interested in being tested as a potential donor for the network, visit http://www.marrow.org. The test is done simply by drawing blood, but there is a cost involved of less that $100. Many insurance companies will cover the cost of the test, less a co-pay amount.

We’ve agreed to let Emory begin the donor search, since all clinics use the same database of donors. Once the pool of potential donors is identified, we will seek a second opinion at either Fred Hutchinson in Seattle or M.D. Anderson in Houston, both of which have significantly more experience than Emory and much better success rates.

John plans right now to spend the rest of the week with his mom while she is off from work. His spirits are good and he seems to be adjusting to taking each day as it comes and with whatever needs it gives him to handle. Debbie and I are tired, but both of us find having time with him rewarding. Thanks to you and everyone for all their thoughts and kindness. Let’s hope for a good New Year.

9:48 AM | Permalink

Sunday, December 26, 2004

Day 35

Twas the day after Christmas, though dawn had not come, and the one creature stirring was still a bit numb.
Gift cards were laid by the front door with care, all ready for sales and new clothes to wear.
Both children are nestled here each in their room, while I sit here thinking Christmas ends too soon.

That might make a good start to a good poem for “Boxing Day”, but it sounds a bit familiar. Anyway, our house is filled with gifts, wrapping paper, confused dogs and a welcome moment of peace in our earth. Thanks to everyone for all the care and kindness. It is good to have the kids here, though they are as grown up now as any of us become. My wish is that next year will end with us all older, wiser and well.

John is feeling better now than before his month in the hospital and his blood counts are improving as they should. He seems to have learned to accept his new reality fairly well, even without any hair, living here and basically being “grounded.” For Christmas he got more than a few hats, and smaller sized clothes. Courtney took an old window from the shed out back and covered the glass in photographs for him. It made a nice gift. He also got a very much appreciated package of goodies from the Cartoon Network, his favorite TV station, including a Space Ghost hat. They passed by its building when Courtney drove him here yesterday and he joked that they should stop and bow down to the building to see if anyone was there and would notice.

Speaking of humor, John says that when he needs a favor from a friend, he occasionally now playfully uses the “Hey, after all, I’m dying” card on them. I think that is healthy, at least in the reality he is learning to live in.

We should receive the results of John’s last bone marrow test on Thursday, which will tell us if he is in remission and also whether his other white blood cells are healthy. The following Monday, he will start chemo again. As long as he remains “healthy”, he will be able to take it on an outpatient basis, which will be much more pleasant, I think. I will fill you in again after we hear from the doctors.

9:50 AM | Permalink

Wednesday, December 22, 2004

Day 31

We’ve had several “normal” days now, with John improving well. His blood counts have risen to the lower end of normal. He spent Saturday night through Monday night at Jill’s and is back once again and in good spirits. I ordered him an Andy Warhol costume wig, which came yesterday. It isn’t a bad look for him, especially since his hair had been every other color in the rainbow at some point.

We go this morning for his third bone marrow test. We will get the results on the 30th. They will be looking for AML blast cells – stem cells that turn cancerous, rather than into proper white cells. Five % or less is supposed to mean remission. Cure is not a word they use. They will also look for dysplased white cells – ones that look precancerous. If those are still present, a bone marrow transplant, after two or more rounds of chemo, is the only option. We’ve already discussed the steps needed to seek a second and possibly third opinion in Seattle and at MD Anderson in Houston.

There’s not much other news for now, just time for work and enjoying the holidays.

9:52 AM | Permalink

Friday, December 17, 2004

Day 28

John’s platelets are improving on their own and his white blood count is slowly rising, though it is at 180 and has to get to 500 in order to start consolidation.
He continues to eat well and has found most of his personality again.

The better news is that his schedule will have him back briefly on Monday for a blood test. Wednesday he will have an important bone marrow test to see what the level of remaining leukemia cells are and also to assess the myleodysplasia in the remaining stem cells. If he has much of the latter, a transplant is almost a certainty (unless they can’t find a match). If not, a transplant becomes a judgment call in a case like his. We will find out the results of that test on the 30th when we meet with Dr. Khoury again.

In any event, he remains healthy enough that he may be able to have his first consolidation chemotheraphy beginning on January 3 and he may be able to receive it as an outpatient, which will allow him to spend his nights at home. That will make him happy and also allow me to be at the office more.
As long as John stays “healthy”, he should be able to be with us for Christmas and possibly New Years. It also means that he will be able to be a part of Christmas Eve with the family, at least for a time.

In the meantime, we have the opportunity to really enjoy the moments we have. It is a privilege too many don’t sense at the time they have the chance to appreciate.

9:56 AM | Permalink |

Thursday, December 16, 2004

Day 27

It was a really nice day Saturday with both John and Courtney here. Everyone slept late and it was good to have them all under one roof together. In the afternoon, we all spent some time shopping in Little Five Points. John enjoyed the chance to be out, though we kept him away from others.

Everything looks good at this point for Christmas Eve with the family.

9:54 AM | Permalink |

Wednesday, December 15, 2004

Day 25

After 25 days in the hospital, John should be able to come home today. His blood counts are improving (you take the neurophils and multiply by the number of dips and bands or something). He is quietly excited about leaving, but he also seems a little pensive at the same time. It’s hard to say all he has to be thinking, but he won’t come out the same person – bald, six foot three and barely 160 pounds. On the inside, though he has to be adjusting even more. Debbie and I will have to resist hovering and let him be free to live his own life for the few days he will be out.

Normally, a patient in induction chemotherapy takes about 28 days from the start of treatment to leave the hospital. The key factor is how quickly (and in some cases whether) the patient’s blood counts bounce back. John is ahead of schedule at this point, but as soon as his numbers rise enough, he goes back in for six days of the first consolidation chemotherapy. If he has no infections or complications, he will be able to recover at home, with clinic visits every other day.

We plan to meet with Dr. Khoury on Friday to talk about the plan for what follows. He has already said that a lot will depend on the results of his next bone marrow test, which should be taken just before he starts his first consolidation. Chemotherapy kills fast growing cells, sort of like “weed and feed” fertilizer kills crabgrass, I suppose. Leukemia (and hair) cells die off, but with AML, they tend to come back, particularly if the patient has one of two characteristics. They have identified, so far, several types of DNA mutations in bone marrow stem cells that can’t be changed my chemotherapy. Some of them are markers for recurrence and some are actually good signs. John shows none of those in his “cytogenic” tests. The second characteristic for AML recurrence is myleodysplasia, in which the mylogenous white blood cells that aren’t cancerous still appear dysfunctional. It shows that something wrong is still going on with white blood cell formation that isn’t right. Basically, dysplased cells are pre-cancerous.

John’s first bone marrow test showed this problem. The first doctor on duty described his dysplasia as “multi-lineal.” The second was vague and the third used the more general term of “myleodysplasia.” John’s second bone marrow test, while showing some remaining leukemia cells, couldn’t test for dysplasia because you have to wait for the dust to settle in the tissue. That is why the next test will be important. If whatever caused the dysplasia was affected, his outlook will be better. If not, a bone marrow transplant will be necessary.

Chemo does not fix the underlying cause of dysplasia. They don’t know what causes it, but sometimes it can go simply away. I gather that reading for dysplased cells is like reading tea leaves – a guess, but in which experience matters. From that, you take the success level achieved in eliminating leukemic cells, the presence of any of the known genetic mutations and figure the likelihood the cancer will return. You then have to balance that against the risks that come with a bone marrow transplant. Even with a perfect match from within the family, failures occur. That is why the test for Courtney was important (and also why I was upset with the hospital over the way they handled its results). Preliminarily, they have identified a couple of likely “good” matches from the national bone marrow database, but each will need to be retested to check the 200 or so characteristics they currently have found in matching. Then the health of the donor and other nuances have to be considered.

Unrelated donors are rarely perfect matches, so success rates for transplants go down. John won’t have a perfect match. The process of weighing risks will be an important one for him. That’s also why getting a second or third opinion from the best clinics matters. Different clinics have significant differences in results. It’s a lot more important than whether you would “buy a used car from this person”, but the comparison fits.

John will probably be back in the hospital for Christmas, but we won’t know the exact days until later. I should be able to begin spending more time at work after today, which will be nice, because there are actually answers to the problems you work on there. Also, you have to be grateful to work for a company with the heart to be as helpful as Cox has been.

10:03 AM | Permalink

Day 26

It’s great to have John home. We were able to leave the hospital about 1:30 after all the lessons on flushing his PICC line (the IV tube from his arm to his heart) and going through the four sets of antibiotics he has to take. He had to have some platelets before he left the hospital, but they said he has begun to create his own again. They also said that the next round of chemo should not seem as bad because his body isn’t suffering from the effects of the leukemia as badly.

I took John by Target on the way home to buy him some pants that fit and a new knit hat. He has about 0 percent body fat and not hair. He insisted on going by Oxford books for several new comics that had come out from his favorite graphic artists. He rested some and then spent time organizing his things in his new room. It is great to have him here and it has to be even better for him to be out of the hospital and in a space that belongs to him. I really appreciate all the thoughts and help he’s received from everyone. It still puzzles him though how so many have reached out to him.

I think John is going to take it easy for most of today, though he is supposed to walk some if it is warm enough. Two of his friends plan to come by in the afternoon to watch a movie with him for a time. I plan to work for most of the day, since Debbie’s office is so close, but I have to call to remind him to take his pills on time and such. It’s funny how I had worked to help him graduate and get out on his own and how great it is now just to have him around.

10:00 AM | Permalink

Tuesday, December 14, 2004

Day 24

John’s blood count was up to .9 today, and he was allowed to go outside for ½ hour during the day. We used the time to walk the campus and also to pick up a painting of his that had been on display. Of course, he had to wear a mask the whole time, which embarrassed him, but he did relish the freedom of being outside of the hospital floor for the first time.
One of the clearest signs that John is recovering is his seeing how anxious he is to be released. Dr. Chai said that John would be able to leave sometime this week, but that meant he would need to return for his first round of consolidation chemotherapy during Christmas.
After not receiving the results of John and Courtney’s HLA typing tests, I made a bit of a fuss – well, actually one people don’t tend to forget. I told the doctor it was time for a second opinion from Seattle (he studied there, and agreed that that was where he would take his child). I went through the hospital records process and ended up being told I couldn’t have or see the records, though they were willing to fax them to another doctor. Seeing this coming, I’d prepared a General Power of Attorney for Health Care, but all that did was confuse them more. Still, it helps to be a privacy lawyer and having done my share of estate work.
I wanted to see the details of John’s reports myself mostly because of the series of communications failures at the hospital, but also so that I could have a meaningful conversation with Dr. Radich in Seattle. After 5 hours of stern conversation, they agreed to fax the records and allow me to look at them with the doctor here. As it turned out, I wasn’t able to do that.
Apparently, word reached the head of the Department, Dr. Khoury, because he came to see us about 5:30. He spent a long time explaining the transplant process to John, talking about the chances of him being able to take classes next term and answering his questions. The doctor, Jill (who stopped by after her trip to Utah) and I then talked for close to an hour about John’s case and my concerns with the hospital. He is an impressive and sincere person, the kind of seasoned and caring doctor you might expect to see on television (perhaps not “Scrubs”). The only problem is that he has only been in charge there for 3 months. Dr. Chai, who trained in Seattle and who also seems very good, has only been there 6 months.
Dr. Khoury explained that most patients and families aren’t prepared to look ahead to a transplant until after they have recovered from the initial treatment, nor do they understand enough to ask the kind of questions I’ve had. He also said that medicine is an art, and he wanted to see John’s next bone marrow test results and the details on donor candidates before recommending further. In a kind enough way that I wasn’t offended, he said that I should “hurry a little slower.” Of course I won’t, mostly because I don’t trust the hospital’s system to work, but I do now have access to the head of the Department and know that he will be keeping a close eye on John’s case.
We also talked about success rates for transplants. He didn’t give Emory’s, but acknowledged that they were better elsewhere and that the odds went down significantly if the first transplant doesn’t take. He did say that generally, the odds for success in an AML patient with a perfect donor were about 60%. They went down to 30% if the patient has dysplasia or other pre-cancerous conditions. Debbie had a conversation with someone at the American Cancer Society who knows the landscape on these things. His comment was that you wanted to get out of Atlanta if you wanted good treatment.
John hasn’t yet had a doctor talk to him with this kind of information, but Dr. Khoury agreed to schedule a consultation with John and the rest of us after he is released. I think he will do a good job of explaining it in a way that he can handle.

10:04 AM | Permalink

Sunday, December 12, 2004

Day 22

Exhaustion and frustration pretty much caught up with me yesterday, but John showed more signs of improving. His blood count reached “.8” which indicates that his immune system looks like it will bounce back, though we still can’t get any real answer of what levels it needs to reach. The recent blood transfusions have given him energy. He is doing some work on his website and walking a good bit more. The only sign of any infection remains the sniffles, though his feet still need watching, if you can stand to look at them. Debbie cooked John a chicken dish that he had asked for, and he cleaned his plate for the first time in quite a while.

Debbie ran into a family in the hallway voicing some of the same concerns I have had about communications with doctors and timeliness by the hospital. I contacted the General Counsel of the University, Debbie works with his father and I’ve worked with him for some years. He said he would make some contacts, but did not offer much encouragement in terms of communications or care.

John continues to think he can take classes this next semester. He thinks he will have to miss only 6 days of classes a month while he is hospitalized for chemotherapy. I suggested we wait a while, work on his incompletes and see, but after chemo he has to be isolated for two more weeks, which means, barring any complications, at best he would get to class 1 week a month. More importantly, as soon as his transplant is arranged, he will be completely cut off from any schooling. Setting goals like his are a positive part of the healing process and encouraging in important ways. I worry though that he is not getting good information from his doctors, who have yet to even mention that he has a potentially fatal disease and the risks of and effort required for a transplant. His mother, who remains on vacation, tells him that once he is in remission, he will be cured and all the rest is just outpatient follow-up.

I’m sure you can tell that I am tired and frustrated. Most of what I have done for a living for 25 or so years has been to solve problems that no one else could fix. There have been a few like this that you can only do your best and then hope and pray for the best. Those are hard and sometimes don’t work out.

I think that John is up for a few visitors now. We will be with him this morning and early afternoon.

10:07 AM | Permalink

Day 23

Today was a busy day for all concerned. John’s counts were down to .6, but there was serious talk of releasing him around Wednesday or Thursday of this week. The downside of his early “parole” is that he would have to be back for about 6 days of his first “consolidation” chemo for the Christmas holidays. After that and assuming no complications, he would expect to be back every 3 to 4 weeks for chemo until his transplant could take place. More on all that in a moment.

Dan and Barry visited with John this morning and gave him a paint by numbers set. Actually, the advanced version of such things is one of the latest cool things to do and John jumped right in, because the opportunity for artistry without enormous creative effort was just what he needed. Elizabeth and Saba came a bit later and John commented later how much he appreciated their visit.

Elizabeth teaches international nursing at Emory and has been a helpful resource for us, so it was particularly timely that she was with us when Dr. Chai (rhymes with “Thai”) came in. We had been waiting for him from mid-morning until 3, when he responded to a page we finally had sent, but you get used to a lot of things in the hospital.

The doctor never actually apologized for yesterday’s problems, but he did genuinely try to answer as many questions as he could, and we asked a lot. An unrelated bone marrow donor transplant is a complicated process that they are still trying to understand (I wish I could say perfect). There are four classes of antigens (A,B,C, and D) with about 200 subcategories of proteins that are currently assessed. Few candidates have had the current full analysis done, so the likely donors will need an up-to-date “HSA” analysis performed to see if they match John’s profile. They learn about more things to check all the time. In any event, the process is still largely and art practiced with your fingers crossed, but John’s case seems to be among the most hopeful within this realm of AML. His cytogenic (DNA) tests showed none of the known abnormalities (positive or negative), which is basically good, though it basically means they haven’t identified his specific mutation yet. In assessing risks of reoccurrence, they also consider the state of one’s non-cancerous white blood cells. John’s have been described, or diagnosed, as abnormal, though with differing labels. Chemotherapy does not affect these problems, and the “dysplasia” found to date makes it important that we proceed to transplant as soon as possible.

Dr Chai has a genuinely helpful demeanor and is the first person we have found willing to discuss the complexities of leukemia and its treatment, even though he has been practicing here only about 6 months. He explained that only about 60% of unrelated BMT’s (bone marrow transplants) are successful today. Patients with John’s current diagnosis would very clearly need to undertake a transplant. If his dysplasia were to disappear, and given his lack of known genetic mutations, his need might be less clear.

Dr Chai trained in Seattle and said that it was the best place, by far, to have an unrelated BMT. He even said that he would go there if he were in John’s shoes. He listened to our concerns over John’s treatment to date, commented with sincerity, but ultimately did not offer much comfort that Emory would satisfy our needs.

John has received mixed messages, since he entered the hospital, on the severity of his leukemia. His mother has said that his is the easiest form of cancer to cure. His doctors have each avoided talking about likely outcomes, other than to say that a transplant is probably going to be needed. Today was the first time that anyone but me ever raised the possibility that John might die. Dr. Chai used the word “mortality” several times.

As Dad and Dottie know, Debbie and I had intended to go to the Cox legal holiday party this evening. We were dressed to go when one of John’s friends called and said he was worried about John, explaining that he had talked to John on the phone and he seemed to be crying. Debbie and I went straight to the hospital. Fortunately Dad and Dottie had gotten there before us and their presence seemed to have helped calm John. Debbie and I stayed until late, sat and talked with John. He has been remarkable about dealing with each day and has mostly left to me the process of planning ahead. He is uncomfortable with the idea of traveling for treatment, but has begun to understand that there are large differences in the outcome of cases from clinic to clinic. We agreed that the best thing to do was to learn as much as we could before we made any decisions.

After a long time, we were able to calm John enough for him to sleep. I’m sure there was more that occurred today, but it is late and I should sleep as well.

10:05 AM | Permalink

Friday, December 10, 2004

Day 20

Thursday was a pretty positive day and John’s health seems to be improving. He does, understandably, seem a little tentative about the steps in his treatment that remain, not really wanting to hear too much of the whole process.

Although his feet are still blue, the rest of his color has returned to John’s skin. His blood count is “.5”, but the neutrophil portion has to reach that level before he is considered to have his own immune system again. A nurse testing his blood said she guessed he could go home early, before December 21 as scheduled. His doctor said everything remains day to day. When he gets out, he should be able to drive and have other activities until he returns about a week later for 6 days of his first “consolidation” chemotherapy. He did develop a runny nose during the day, but no other signs of infection, which is a good sign.

I spent a remarkable 20 minutes in the morning on the phone with the Aetna transplant case manager. She knows John by name already, asked how he was doing, told me about children she knows with cases like his, said that she had already precertified John for transplant evaluation, had talked to the Emory coordinator about the status of Courtney’s blood test and even asked how I was doing. She is comfortable with Emory, but agreed that we should evaluate other clinics, and mentioned several.

John was able to draw a bit during the day, but was exhausted by evening. His website now has guest artists and Bo Coker is coordinating game reviews. It is http://www.ihatethisgame.com. You should take a look.

I will be at the hospital Friday morning for a while and Debbie and I will take John dinner Friday night. I’m not sure what my schedule for Saturday is yet, but he should be able to have some visitors this weekend. I will be with him Sunday morning through much of the day.

11:40 AM | Permalink |

Day 21

John held his own well today, the end of the third week that he has been hospitalized, but the transplant news we ultimately got will complicate things. His blood count slipped, his weight is down to 165 and he shaved his head because his hair is now noticeably patchy. The doctors say, however, that he is on track, and he certainly hasn’t suffered any infections, complications or setbacks, which affect so many patients.
Debbie and I visited with him during the day and then brought him a dinner of turkey, a baked potato and broccoli, all of which he ate about half of. His roommate Dan spent a long time there and asked if John wanted him and their friends to shave their heads. He declined, since he already had my scalp to look at. John and I did decide, however, to order him an Andy Warhol costume wig just for fun.
A new doctor began a two week shift of rounds today. He apparently also performs bone marrow transplants and seemed comfortable with John’s progress. He indicated, however, that the bone marrow test from a week ago, while good, did show the presence of some “blast” or leukemia cells. My readings indicate that this is not unusual, but his report was not what we were told earlier by the prior doctor. I followed up with a question and was told that his risk of recurrence was high because John showed “myleodysplasia” in his white blood cells. Both the risk level and the diagnosis were different from what we had been told for the past three weeks. These descriptions are probably merely labels assigned to differences seen under a microscope, but hearing them did cause me to press for the results from John and Courtney’s HLA compatibility tests. I’d lost count of the number of times and people I’d asked for the status of the tests, which normally take two weeks to complete. Once again, they promised to check.
This evening, I stopped the doctor again and asked about the results. He said he hadn’t gotten them from the lab and he couldn’t say when he might. That was it. This evening, however, a transplant coordinator called John and told him that she had the results. Courtney is not a match, but she has found a couple of potential donors who appear to be good matches and others that might be close. Using an unrelated donor requires a 4 to 6 month process, plus an equal amount of time for the transplant and recovery. It will also mean that he will likely require four or more rounds of chemo to stave off recurrence while all this takes place.
None of this is bad news, just an indication of the direction we will be going, the time it will take to get there and the risks along the way. I’m personally disappointed in the hospital for the way they handled the process, but it is better to know their standard of care now, rather than later. Still, it hurts to have to fight for attention from the hospital while fighting the disease.

10:09 AM | Permalink |

Thursday, December 09, 2004

Day 19

I seem to have lost track of time, but Wednesday was John’s 19th day in the hospital, two days into the recovery of his immune system. He continues to receive antibiotics and platelets, but he persuaded the doctors to stop feeding him by IV, which means he isn’t tied to his IV rack all the time. His weight has stabilized, but his interest in food is not where it needs to be yet. He asked Debbie to make up a chicken dish of hers he likes, which is a nice compliment of sorts.

John’s face is beginning to return to one color, though is feet still look foreign. He was able to walk about a dozen laps around the floor yesterday, which would amount to about a half a mile. That is a big step up from a wheelchair. His hair is thinning, but he has grown accustomed to the idea. John isn’t up to much mental activity yet, but he did send an email out on his webpage forum explaining the lack of updates and asking for volunteers to act as guest cartoonists for the webcomic section. He said he got a number of responses.

I’ve been unpacking the things from his dorm room at night and trying to turn the guest room into “his” space. It’s quite an adjustment for a small two person – two dog household, but this is the 21st Century and the “average” family today statistically does resemble ours.

There are many great rewards for working for a good company, and health insurance is one of them. Between the Cox insurance and what I have from my first career, our out-of-pocket costs for John’s expenses will amount to pocket change. There are many people that aren’t that fortunate. It has also been a great help to be able to come and go during the day and even work some from the hospital. I’ve always enjoyed going to work at Cox, but the caring and covering for me through this is a great gift.

John is still restricted in terms of visitors but he does like having someone with him to help out and break the boredom. I was there in the morning, hoping to get the day going for him and he came up with reasons for me to need to stay until Debbie came after lunch for a time. John’s mom is leaving for a four day vacation, so he will probably be alone a bit more over the next few days. I will see what he may need in terms of visitors and pass it on.

11:44 AM | Permalink

Tuesday, December 07, 2004

Day 17

It needn’t have taken the prodding of two motivated lawyers, but be were told this afternoon that John’s second bone marrow test results were good. The doctor didn’t have time for us for quite some time, but a thoughtful nurse explained that the “induction” chemo was successful enough that they were unable to detect cancer, or any other, form of cells, which they explained is the desired result: sort of a “ground zero” effect.
The meaning of that is significant, because it puts him in the group of AML patients that have the “best” chance of success, somewhere between 20 and 50 percent, depending on things like successful follow-up “consolidation” chemo, finding a matching marrow donor and tolerating the transplant. The selection of the transplant center also has a lot to do with the results.
John’s tentative schedule could allow him to leave the hospital and move here before Christmas. He would need to remain somewhat sheltered, but that has been a goal of his. He would be back in the hospital for about 6 days the next week for another round of chemo and then would rest again at home for several weeks with regular clinic checks. As soon as he is able to travel, we would probably take him to Seattle for consultation concerning a transplant there.
John had me go out and buy him a turkey and swiss sandwich for dinner, so he wouldn’t haves to eat the hospital’s embarrassing attempt at the most basic of foods. He is trying to eat, his face has begun to resemble his own and his feet have taken something resembling human form again.
Suddenly, I am now tired and looking forward to the chance to work on problems with four paper corners, in black and white and made of words for a while.

11:45 AM | Permalink |

Sunday, December 05, 2004

Day 16

One step forward! This morning, I took John on a wheelchair ride around the floor. It was the first time he had been out of his room in several days. We ran into Larry, the 300 pound puppy of a guy who had been doing laps in sets of 23 (a mile) a week ago. Today he was shuffling, but on his feet. John wheeled himself for a time as they compared notes. John looks much worse, by far, but Larry tried to “cheer him up” by talking about how they were going to have to tap into his veins through his skull to provide treatment. It sounded like a scene from MASH when he made the obligatory joke about having a “hole in his head.”

John got out of the wheelchair and “walked” the length of the hall. I suppose it was a bit biblical, as if he was almost walking on water, at least to me. Of course, a few minutes later, he paid the price by throwing up, but it takes a lot of basic human courage to do what he’s doing.

Debbie and I took his cue and went to his dorm room this afternoon to take most of his things home. Parents always worry these days about children moving back in. Having to do the moving yourself adds insult to the idea. Doing it all when your child is sick is complicated. You may be grown up, but you never stop learning. Laura and Mike were thoughtful enough to help out and Dad made room for some of the things.

Debbie has made room for a lot more than just things through this. She made a pot of chicken soup – Jewish penicillin – for John and he had some this evening. He is learning to be grateful for all the thoughts and help he is given. That is actually a talent that is hard to master, as I am finding myself.
Tomorrow is John’s second bone marrow test and we should see the results on Tuesday. We will work from there.

11:50 AM | Permalink |

Saturday, December 04, 2004

Day 14

It dawned on Debbie and me today that only two weeks has gone by since our world has changed. I was hosting a meeting at work today and, for a brief moment, actually did not have John completely on my mind. I’m sure to one degree or another, you understand how different it seems.

Dad helped out with John for much of today and was with him for what was a very difficult morning. John said to him at one point that he wasn’t sure all this was worth it. John described the pain later as if it had no center, but that every part of him was sick. By afternoon, his “chemo hangover”, as I described it, abated and he seemed a good bit better. The nurses say that these are the hardest days, and he should feel better soon. John’s awful rash is still there, but so is his hair, or his Mohawk anyway.

The nutritionist visited John today and worked with him on what to eat and how to count his intake. John has lost at least 6 pounds since he entered the hospital, not bad, but in the wrong direction. Two weeks seems like such a long time for the team to have waited to help him with this.

I set up a call for Tuesday with a doctor in the Seattle center. The intake nurse asked all the right questions, which was encouraging.

We’ve had many people ask what they can do to help. Beyond thoughts and prayers, there isn’t all that much for now. John mentioned how strange it was that people he hardly knew seemed so concerned and tried to do so much for him. The best I could do was laugh and say that he had just never been sick before. It’s funny, but it is true that he has never had much wrong with him before. Even more, he is just a good, shy, well-meaning “kid”. I suppose it is beyond us to understand life.

I’m sure I’ve left things out, but thanks to Dad for being there for John on a tough day. So long for tonight.

11:55 AM | Permalink

Day 15

Well, these are supposed to be the hard days, as John’s white blood count drops as close to zero as they can get it, and this was a hard day. He has dropped even further to 170 pounds, his face and feet are terribly swollen, his eyes have saucer circles around them and the word they use for the red blotches that cover his body, a “rash” would better be called a lie, except that it’s not technically a lie if they don’t know what it is. (OK, I’m entitled to rant.)

Today, John’s mom felt it was time to tell him he wasn’t going to be able to go back to school next term. That is becoming more and more certain, but…. That prompted a lot of questions that he and I talked through as best we could for a long time. It was the first time through all of this that John has cried. It was a hard conversation that no parent, or anyone, deserves to have with anyone, and I will leave it at that. He said he wants to come stay with Debbie and me when he is released, which makes some sense. He asked me to go clean out his dorm room, which is another of those things a parent hates to do. Actually, no parent wants to clean any child’s room, but I am entitled to think that it’s even worse in this case.

John is only pretending to eat and will need to go on IV feeding by tomorrow. He isn’t allowed visitors until he starts to recover. I have a telephone meeting with a doctor in Seattle on Tuesday and am more and more inclined to see that as our best option.

Debbie is suffering as much or more as any of us through this. Those with the best hearts also hurt the most. Still, she is a comfort to John and to me, as she is to all.

11:53 AM | Permalink

Thursday, December 02, 2004

Day 13

Today’s update on John is, like the weather, improving today but unclear for the long-term. I actually recognized a smile when I saw him this morning, even though it was masked by a gaunt face and two very swollen reddish-black eyes. He had eaten his breakfast and he ate and drank well all day. His white blood counts are dropping as they should, but his sense of well-being seems to be improving. As the day progressed, that continued, but the dad in me worried that he hasn’t yet grasped a lot of what he may have yet to deal with.

Lots of people have reached out to all of us in caring ways. A law school classmate gave me a mint condition Fred Hutchinson baseball card as a good luck charm for John. Fred Hutchinson was an obscure baseball player, but his cancer center in Seattle is by far the world’s leading leukemia and bone marrow transplant center, with three Nobel laureates. Joe, my classmate and fellow Cox lawyer, has given two such cards to people like John and they are batting 1000. Everyone’s prayers, thoughts, and patience, though quiet, are all equally gracious and appreciated, even if we can’t answer back in person.

John’s palms and the bottoms of his feet are swollen from a chemotherapy rash. His approach to this, like everything he is confronting, is to make a joke and deal with the moment, rather than allow the compilation to be overwhelming. He told me that I had to be a good dad today and cater to him, since he couldn’t walk for himself. When I was slow in getting a Coke, he said I was the worst dad in the world, until I suggested he refrain from criticizing until I actually got him what he wanted.

The doctor did indicate that the DNA testing on his leukemia cells showed, so far, no abnormalities. This is basically neutral news, but can be rightfully considered good, at least in context. His case is still very much considered one for bone marrow transplant, but his smile and this news were welcome.

Debbie and I have read everything in print and on the Internet that might relate to John’s case. I have a mind-numbing print of the abstracts from all AML studies since the acronym was formed. We met for an hour today with an Emory exec. whose daughter had John’s diagnosis and who had a successful outcome. She gave us a lot of information and reasons for hope. Still, it was difficult to balance the conversation with John’s comment from earlier in the day, asking what all the worry and fuss was, “Aren’t people pretty much supposed to get over leukemia?”

Next Monday, John has his second bone marrow test to see if he is in remission. In about 25% of cases, it takes a second round of chemo to reach a 5% or less leukemia cell count. Once in remission, he will need to start the “BMT” (bone marrow transplant) process, which takes 4 to 6 months to arrange and 4 to 6 months more to complete. There have been successful cases where none of these things worked the first time, but the patient prevailed. I’ve learned you don’t say “cured”, but, if you reach 5 years without recurrence, you have the same chances as the rest of us of contracting (or not) leukemia. There are plenty of other statistics, but we have learned that hope, whether big or small, for your one case is the most valuable thing you have to hold and to share.

John got a basket today from two friends of ours. He reacted by saying it was weird for all these people he didn’t really know to do things for him. We laughed and I said, “The problem is you’ve never really been sick before have you?”

So far, John has had nothing more than his rash from his white blood cell “nadir” process and we continue to await next week, when the various results come back, which will give us direction for the next steps to take. Like so many things, John is a little shy talking about his personal beliefs, though he respects everyone else’s. I know he would respect and appreciate your thoughts and prayers. I think we all would as well.

11:56 AM | Permalink

Hope is the thing...

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