Journal History

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Thursday, January 09, 2003 at 01:57 PM (CST)

Sorry about the long silence. It has been difficult to provide meaningful reports. We thought everything was going well, but we weren't certain. We still are not 100% certain, but the results of Maureen's 1-year checkup were very positive.
On January 2, 2003, exactly 12 months after her transplant, Maureen went in for a series of tests; we got the results yesterday. A bone marrow test and a CAT scan of Maureen's chest and abdomen were clean, i.e., no indications of cancer. This was the best news Maureen has received in 5 years. It doesn't prove Maureen is completely cancer-free, but there are no tumors in her chest, abdomen or pelvic bone large enough to show up.
The only other place that one would logically look for lymphoma would be her neck. Unfortunately, the examination of Maureen's neck was another health-care fiasco. At Methodist and Mayo, where Maureen received treatment in the past, a single CAT scan provides data on chest and neck. At the U of M, they do a seperate test for the neck. For some reason, they were unable to schedule the neck scan on the 2nd, so they scheduled her for the 3rd. Both CAT scans require drinking "contrast," and the extremely painful bone marrow test requires anesthesia, typically with Demoral. During her 5 year battle, Maureen has taken both "contrast" and Demoral frequently.
Early afternoon on the 2nd, Maureen experienced a severe allergic reaction, turning bright red, itching and puking. The emergency room physician who treated Maureen that evening insisted she had reacted to the Demoral. The next day, when Maureen reported for her neck scan, they refused to give her "contrast," insisting that it had caused the allrgic reaction. Apparently there are other options for a CAT scan, but these have to be special ordered, so Maureen hasn't had her neck scanned yet. The unfortunate part of this is that Maureen's cancer first appeared in her neck 5 years ago, so we can't feel completely comfortable until this additional test is complete. (We promise to update this website as soon as we hear.)
And we still don't know what she is allergic to. It seems strange that she would be allergic to anything she was never allergic to before, but remember, biologically she is one year old. Maureen's doctor insists that it isn't unusual for BMT patients to develop allergies they never had before, or to no longer be allergic to things they used to be allergic to. And the reaction is a sign that her immune system is developing.

ADDITIONAL DETAIL REGARDING MAUREEN'S CURRENT CONDITION: Faithful readers may remember the ongoing discusion of the role of Prednizone, a powerful steroid which fights cancer and Graft-Versus-Host-Disease (GVHD), but has unpleasant side-effects and also inhibits the develing immune system. Last spring, the plan was to wean Maureen off of Prednizone. But everytime she tried, the GVHD (which can be fatal) flared up. So Maureen has remained on low-dose Prednizone (in the 4 months since Maureen last saw her doc, he forgot she was still on it). Now she is again scheduled to taper off.
Last July, Maureen nearly died from the return of Lymphoma on her lungs (not the same as lung cancer). A biopsy of her lung tissue showed the presence of a common fungus, a no-big-deal condition for most of us, but life-threatening for anyone with a compromised immune system. After they beat back the cancer, they put Maureen on an anti-fungal medication. This medication has one unpleasant side-effect; Maureen has had diarhea since July. Maureen will now be tapering off of the anti-fungal agent also.
The nerve damage to Maureen's feet, from the original chemo-therapy 5 years ago, is apparently irreversible.

NEWS OF THE FAMILY: Christmas was nice; uneventful. John, Tessa, and both Grammas are about the same. Sister Sheila is ill, perhaps seriously. Exchange student Masha is surviving the weird Trepp home.
Yesterday, Jan. 2, the same day we got the great test results, Ethan announced his engagement to Ashley Wagner, currently of Mpls and Tasks Unlimited, formerely of Davidson College in N. Carolina. Ethan and Ashley have been dating for 4 years since they met working in the Appalachian Service Project. We all love Ashley, and are thrilled by the news. They have not set a date yet.
Wandering Phoebe is the source of much concern. In October, she flew to Guatemala to do some sort of relief work. She wasn't connected to any organization, kind of a aid worker without portfolio. On arrival, she enrolled in a 4-week class to brush up on her pitiful high school Spanish. While studying Spanish, she met an American woman who runs a health care clinic up in the mountains. The clinic has various American sponsors including a church in New Ulm, MN. So for the last 60 days, Phoebe has been working at the clinic, weighing babies, repairing fences, painting things that need painting. She lives with a Mayan family (they don't speak Spanish either) and loves it. But she is apparently considering returning home to enroll at the University for Spring semester which begins in late Jan. Our concern relates to her travel plans: she considers plane travel dull and wants to travel alone by bus. The only possible bus route will take her through 2 dangerous areas: the Gautemalan/Mexican border which is reportedly a hotbed of drug activity, kidnapping and violence; and the Chiapas region of Mexico where a civil war continues to smolder. Phoebe says these reports are exaggerated.

Wednesday, October 02, 2002 at 06:31 PM (CDT)

Nothing much new, which is basically good news.
Although Maureen hasn't been "staged," i.e., given a battery of tests, lately, there are no symptoms of resurging lymphoma or agressive GVHD. Maureen continues to take low-dose Prednizone to control the GVHD, which keeps her bloated; and a fungicide to fight infection, which gives her continuing low-grade diarhea. She has low-level depression related to the bloating, the diarhea, her swollen knees, the cramps in her feet, and being tired all the time.
At least she is here to be depressed. This time a year ago, we weren't certain she would be. She is teaching full-time, and seems to have an activity of some sort after school, or in the evening, or both, every single day. Probably a lot of women her age with her schedule are tired all the time, without the lymphoma, the GVHD, or the medication side-effects. We try to get her to slow down, to skip an activity or two, to take a day off once in a while. Those readers who know Maureen well will appreciate how useless our suggestions are.
Maureen isn't enjoying life quite as much as the women her age on TV seem to. You know, the youngish millionaire widows with the even younger second husband, the great tan and the beautiful grandchildren. But she is doing okay.
FAMILY UPDATE:
John is the same, working at Tasks, coaching water polo at the U, trying to finish his autumn gardening before the weather turns nasty.
Tessa is back in seminary at Bethel, sub-teaching 2 days a week and slinging pizzas on the weekend.
Ethan is brewing corn-liquor, which he insists is an alternative fuel, for Gopher State Ethanol.
Phoebe is living at home, also slinging pizzas, talking about going to Guatemala.
And then there is Masha, our 16 yr-old Russian exchange student. A skilled artist, Masha takes a class at MCAD in addition to her day classes at Washburn, and spends most of her spare time either sketching or visiting art galleries. She recently learned to ride a bike and loves to explore Minneapolis on Maureen's bike.

Wednesday, September 11, 2002 at 02:46 PM (CDT)

GOOD NEWS, within the context of the bad news headlined above, from today's checkup: Maureen's lymphoma has again responded well to Retuxin. On July 3, Maureen had a baseball size tumor in her chest and multiple, olive sized tumors in her neck. The combination of Prednizone and Retuxin has been effective in shrinking these tumors. The neck tumors are no longer measureable (which means they are smaller than a grain of rice) and the chest tumor is now olive sized.
Maureen's doc describes this as a complete success and suggests that the lymphoma may not return for years --just what Maureen wants to hear, and possibly true. We receive this news with some skepticism, however, because Maureen has been here before, six times in the last 4 and 1/2 years; and every time, the lymphoma has returned quicker and more agressively than predicted. Maureen's doc points out that Maureen has a different immune system now than she did before; an immune system which is growing stronger every day. We remain slightly skeptical, but at least there is a logical scenario to base our hope upon. Another reason is to celebrate is that Maureen is still responding positively to Chemotherapy, which wasn't a sure thing going into her recent treatment. Even if she isn't cured, she is at least still alive, working even, and still fighting.
As Maureen has tapered off the Prednizone and Gengraft, the graft-versus-host-disease (GVHD) has returned. This also, is a good news/bad news kind of thing. The good news is that GVHD is an indication of a functioning immune system. The white cells which are attacking Maureen, especially her skin, are the same white cells we are counting on to attack the lymphoma.
The bad news is that GVHD remains a potentially life-threatening disease. Maureen's GVHD is now considered chronic (she has had it for 7 or 8 months now), and so far it has been merely annoying, so we have become somewhat complacent about it. But it remains a deadly disease, which has to be watched closely.
Management of the GVHD requires that Maureen go back on Prednizone. Maureen hates the Prednizone because it causes the bloating of her face. And it scares our family because John's father, Ken, died, essentially, from the effects of long-term (over 10 yrs) use of Prednizone for emphizeema. Maureen's doc says Maureen can avoid the loss of bone density which killed Ken by taking a medium dose of Prednizone everyother day versus a low daily dose; without compromising the treatment of the GVHD. Meanwhile, we need to watch the GVHD closely, and if it flares up Maureen can be treated with a one-shot mega-dose of Prednizone.
In the meantime, Maureen is teaching 5th and 6th grade, fulltime, at Field. Her medical team is amazed by this. And again, this is both good and bad. One bad thing is that she is surely exposed to more germs than she would be staying home, or even working in an office. A second bad thing is that teaching elementary school is physically demanding -- her fiftyish friends, even the lucky few without serious health problems, find themselves exhausted at the end of the day, and Maureen's stamina has not completely recovered.
The good thing is, Maureen loves teaching; she hates the politics and bureaucracy, finds parents annoying, etc., but she loves 11 and 12 year olds, and loves watching them learn. Plus, she's good at it. The opportunity to do what she loves and is good at is powerful medicine. We can't predict how long she can continue, but you can bet she will teach as long as she can.

Thursday, August 29, 2002 at 02:22 PM (CDT)

Thanks to all of you who continue to check in on Maureen's web page and to nag us about updating it. We haven't updated for a month because nothing is happening fast or dramatic. The Retuxin seems to have worked, at least for now. The observable signs of lymphoma have retreated. Maureen recently took some tests which will provide more detailed data, but we won't know the results until Sept. 11 -- look for another update on the 12th or so.
As discussed in previous updates, it is unlikely that the Retuxin will cure the lymphoma, but it buys some time.
Maureen has continued to taper on the Prednizone and the Gengraft. It is important to get off of these powerful drugs because they retard the development of her immune system. As she tapers, she is at increased risk of graft versus host disease (GVHD), but so far the GVHD has been manageable.
This past Monday, Aug 26, Maureen returned to work at Field in anticipation of teaching when school opens on Sept. 3. Her doctor was not very enthusiastic about her teaching, but he didn't say she couldn't. We aren't clear whether his acquiesence is because he thinks leading a normal life might be helpful in her fight against lymphoma, or whether he thinks it no longer matters. We encouraged Maureen to seek a non-classroom position within Mpls Pub Schools, but she refused as she really loves the classroom. When the parents of perspective students ask Maureen if she will be there all year, Maureen just shrugs.
Late last night, Aug 28th, we went to the airport to pick up the newest member of our family, Masha Krashinova(?). Masha is the 16 year old daughter of Maureen's long time pen-pal from Oriel, Russia. It will take some time before Masha is mistaken for a real member of our family because she is tiny and well-mannered. Masha will live with us until June and attend Washburn H.S. An accomplished artist, Masha will also take classes at the Mpls College of Art and Design.

Wednesday, July 24, 2002 at 10:47 AM (CDT)

First the facts; then an editorial about the health-care system. The bad news is that fast-growing lymphoma has spread pretty much throughout Maureen's body. It is particularly strong this time in her upper chest and neck.
The good news is that she has re-qualified as a candidate for Retuxin. Maureen was treated with Retuxin at Mayo in 1999, and had a good short-term response with few side-effects -- she didn't even lose her hair that time. She wasn't a candidate for more Retuxin before the BMT, but now she is. Retuxin did not cure her lymphoma in 1999, so it is unlikely to do so now. However, if it holds the lymphoma off for 6 months, as it did in 1999, that gives Maureen's immune system a chance to get stronger. A new immune system was the whole point of the BMT.
The large dark mass in Maureen's chest (referred to in our July 11 journal entry) was a combination of lymphoma and edema (i.e., swelling) caused by the lymphoma. The edema was life-threatening in the sense that it was constricting Maureen's breathing, so it had to be treated agressively. But, in another sense, the edema is a sign that Maureen's immune system is coming around. The high dose Prednizone took care of the edema, but didn't do much for the lymphoma. In fact, the Prednizone suppresses her immune system, so she continues to taper down on the Prednizone. This is also good from a quality-of-life standpoint, in that 90% of Maureen's current symptoms are side-effects of the Prednizone.
The battery of tests Maureen was given in response to the sudden appearance of the large mass revealed that she has a case of Aspirgyllis (we have no idea how to spell any of these latin terms). Aspirgyllis is apparently a common, wide-spread fungus. Some of us have it all the time, but our immune system keeps it under control. Maureen has no symptoms of a raging case -- they wouldn't have even known she had it if they hadn't done the lung biopsy. But, like many of these common low-grade bugs, it can be fatal in someone with a compromised immune system. So Maureen is now taking a fungiside also.
Now the editorial. We received several complaints over the past two weeks regarding our failure to update this web page. Had Maureen died? Had we forgotten about the page? Were we trying to milk the cliff-hanging suspense of the last journal entry?
It was none of the above. We didn't know anything and kept thinking we would know something the next day.
Dr. Slungaard was shaken by the July 3rd xray. He ordered tests for late that evening, and, unable to get any tests done on the holiday, several more for the morning of July 5. He ordered Maureen not to leave town for the weekend and not to work the following week. Though unspoken, we drew the inference that Maureen might have require hospitalization at any moment.
After the testing the morning of the 5th, we went to lunch (Maureen was not allowed to eat prior to the tests). We then returned to learn the results, only to find that the BMT clinic had closed for the holiday weekend. Paniced, we called the clinic's 24/7 on-call doc. This holiday weekend, the on-call doc was a "fellow" who didn't have access to Maureen's test results. After hearing our story, she recommended that we keep a close eye on Maureen and bring her to the ER if she stopped breathing. We spent a very nervous weekend waiting for the clinic to reopen on Monday morning.
We called the clinic repeatedly on Monday the 8th, but were still unable to reach anyone who knew anything. Finding herself still alive on Tuesday morning, Maureen went to work (at Macalester) and left the calling to John, who still couldn't get a response. Late Tuesday afternoon, Michelle called Maureen; the converstion went something like this:
Maureen: What are the results of my tests?
Michelle: They are inconclusive.
Maureen: What does that mean?
Michelle: They are not all back yet; the ones that are don't tell us anything we didn't already know. [The tests did tell them something we didn't know, that the mass was indeed lymphoma. It remains unclear whether they knew that on the 3rd, but they gave us the impression that day that they weren't certain.]
Maureen: When will the rest be back?
Michelle: Well, the lab was closed over the weekend, so it will be a few days yet. I'll call you.
On Friday the 12th, Michelle left a voicemail message that Maureen should contact the pharmacy about a new prescription for an infection (the aspirgyllis) the lab had found. Upon learning that the prescription was for a fungus, Maureen convinced herself that the large mass in her chest was a fungus which the new prescription would cure. She continued to believe this until this morning (the 24th).
Michelle called again on the 15th and told Maureen to come in for more tests. Michelle was annoyed to learn that Maureen was working, against medical advice. Maureen went in for the tests on the 24th. She was hoping to discuss with Slungaard the results of the earlier tests, but she didn't get to see him; Michelle said there wouldn't be any point until the new test results were available, and gave Maureen an appointment for today.
During today's appointment, we confronted Slungaard and Michelle about the poor communication. They said, "What poor communication?"

Thursday, July 11, 2002 at 03:44 PM (CDT)

We had a big scare last week, and we still don't know what's going on. Maureen seemed to get along okay on her road trip to Tennesee. The major event of the trip was that Janelle's car broke down and they had to rent a car to get home. Maureen identified that she got a little tired a few times, she had to use her anti-diarhia medication several times and she caught a cold "from sleeping in air-conditioning" (an activity not possible at the Trepp house).
On July 3, she went in for a routine checkup. As always, Maureen told doctor Slungard she was feeling great. John pointed out that she was coughing some. The doctor listened to her chest. He didn't seem terribly concerned, but ordered a chest xray, just to be safe. Maureen had the xray, we went to lunch and came back to hear the results. When the doctor pulled out the xray, he was visibly shaken, the first time we have seen a reaction like this in six months at the BMT clinic. He showed us the xray, which revealed a dark spot the size of a saucer in the center of her chest; something which hadn't been there on June 1.
He wasn't sure what it was, and offered 3 possible explanations: 1) massive, fast growing lymphoma, which untreated could be fatal within a week; 2) pneumonia, normally not fatal, but dangerous in a person with a compromised immune system; 3) some combination of the two.
He ordered several more tests for that night, and, unable to schedule any tests on July 4, for early on the 5th. He also called for a consultation from pulminary experts with special expertise reading such tests. He cancelled our annual trip to Pelican Lake for the 4th of July Boat Parade. He told Maureen she could not work the following week as planned. And he re-started Maureen on high-dose (higher than ever) Prednizone. Given previous discussions, we inquired how this would affect the long-term plan to stimulate the growth of Maureen's immune system. He said Maureen did not have the luxury of worrying about long-term solutions.
Shaken, we spent a very nervous July 4th and 5th. We anticipated getting some test results back by the afternoon of the 5th. Much to our dismay, the BMT unit closed for the holiday weekend. No one, not even the "24-7-365 on-call" doc returned our calls. We spent a very nervous 6th and 7th, dealing with the side-effects of high-dose Prednizone, and wondering if Maureen would live until the clinic opened on Monday.
On Monday the 8th, Maureen spoke by phone to Michelle, and later Slungard. They explained that if there had been the need for emergency procedures, they would have called Maureen on her cell. But they didn't call because the tests were "inconclusive." Maureen probably has some fast-growing lymphoma, and some pneumonia, but the Prednizone "might" solve the short-term problem. They started to schedule Maureen for more tests and another doctor appointment, but upon learning that Maureen had returned to work against doctor's orders, decided that she wasn't dying. She is scheduled to see Slungard on the 17th. We don't have a clue what's going on.

Friday, June 21, 2002 at 04:38 PM (CDT)

Maureen met with her doctor on June 19, and gained a little more insight regarding her prognosis. Since receiving the BMT on Jan. 2, Maureen has been taking two immune-supressing drugs: Prednizone and Gengraft. These drugs each slow the growth of her new immune system, to prevent graft versus host disease (GVHD). Her doctor had immediately begun tapering the Prednizone, and would have subsequently tapered the Gengraft also. The goal was to develop a healthy immune system which would not only protect Maureen from the common cold, but would also fight the Lymphoma when it (inevitably) returned.
Maureen's progress in tapering and immunizing had been slowed by two outbreaks of GVHD, both coinciding with the complete elimination of Prednizone. In the absence of Lymphoma, Maureen was restarted on a Prednizone taper -- but each time starting on less than the time before. Clearly, Maureen's doctor was more concerned about GVHD than Lymphoma.
The discovery, that the Lymphoma has returned, changes things dramatically. Despite the presence of GVHD, Maureen is not restarting the Prednizone and has begun tapering the Gengraft. Fighting the Lymphoma is suddenly the priority, and it is critical that Maureen's immune system beefs up. The plan seems to be to test how much GVHD Maureen can tolerate. But this is a risky plan; GVHD is not merely annoying, it can be fatal. Maureen's doctor says we are "playing with fire," but we have no choice.
GVHD occurs when Maureen's new blood producing bone marrow mistakenly identifies Maureen as an alien and attacks. The two most likely "fronts" are her skin and the lining of her stomach. During previous outbreaks, Maureen experienced a major rash and minor nausea. While an increase of Prednizone directly suppressed the GVHD, Maureen also used a topical oinment and anti-nausea drugs to fight the symptoms. The plan for now is to treat the GVHD symptoms, but let the GVHD go unchecked.
So far, it is working. Maureen's nausea has been manageable, and her rash has subsided in response to the oinment. The doctor says Maureen may have to increase the Gengraft or go back on the Prednizone if either symptom threatens to get out of control, but he has made no predictions as to how far Maureen can taper the Gengraft before this becomes necessary. (This whole treatment regime is so new, we don't think he has seen enough patients in Maureen's situation to know what to expect.)
Meanwhile, Maureen is going about her life with the usual frenzy. This past week she was teaching teachers at Macalester. On Sunday, she leaves for a road trip with her "home-girls," Linda, Janelle and Gloria. They are planning to visit the American Museum of Quilting in Paducah, Dollywood in Nashville, Phoebe Trepp at her ASP site in NE Tennessee, and Linda's ancestral farm in Mississippi. Upon return, its off to Pelican Lake for the 4th of J, and then three more weeks of teaching at Macalester. Maureen will be taking her anti-nausea drugs, her anti-rash oinment, and the anti-GVHD Prednizone and Gengraft along on her travels. Her plan is to monitor her own symptoms and discuss adjustments by phone with her doctor or the spectacularly blonde nurse Michelle. Both doctor and nurse roll their eyes at this plan, but didn't say no.

Friday, June 07, 2002 at 03:38 PM (CDT)

Maureen's 100 day checkup in early April came up "clean," i.e., the BMT had "taken" and there were no clear signs of the cancer returning -- a few ambiguous spots in her lungs which might have been scar tissue or dormant tumors. This was a significant milestone in that it was Maureen's first clean checkup in four years of battling lymphoma.
Earlier this week, Maureen had her 160 day checkup. Among other things, this checkup included a CAT-scan and a bone marrow biopsy. The results of the biopsy are not back yet, but the CAT-scan shows clear signs that the tumors on her lungs are growing rapidly. The course of treatment won't be clear until the biopsy results are in.
Needless to say, Maureen feels very discouraged by these developments.

TUESDAY JUNE 11
Maureen received the results from her bone marrow biopsy today, and the news was good -- her bone marrow is clean. Although clean bone marrow is a good thing, it leaves her doctor in the dark as to the exact nature of the tumors on her lungs. A biopsy of these tumors would answer much, but is difficult to perform. Another option is frequent CAT-scans to measure the growth rate.
And now that Maureen is off Prednizone, her new immune system should get stronger. There is a chance that it may attack and defeat the tumors without additional chemo. The down side here is that without the Prednizone, the GVHD will be a problem -- the balancing act continues.

Tuesday, May 14, 2002 at 01:08 PM (CDT)

Like most married couples, Maureen and John are in the habit of spending New Year's Eve together. Early in their married life, they usually spent NY eve at "BA" parties characterized by heavy drinking. Once, M and J and the Bey's tried to establish a record for the number of parties they could attend on one NY eve (9). On occasion they spent NY eve in exotic locations such as San Juan, Puerto Rico or Cancun. But most, and certainly their most cherished NY eves have been spent with their good friends the Hills, Callahans, and Koses. At the first few gatherings, putting all the kids to bed at one family's home was accomplished before serious celebrations began. As the kids grew, our group rented out various facilities, often with a gymnasium which was helpful in tiring out the adolscents. In recent years, we have struggled to stay awake long enough to celebrate as a group before each couple returned to their respective empty nests.
Ney Year's Eve 2001 was a strained celebration. Maureen and John spent the night in Maureen's hospital room, anticipating the BMT scheduled for Jan.2. Our only visitor was Carter Holmes, Maureen's volleyball referee (go figure) who stopped by during his traditional NY eve run. Other than visiting with Carter, the evening was spent crying, worrying, and watching cable (which we didn't have at home). We ended up watching a program about the Grand Canyon, which reminded Maureen that she had never been to the Grand Canyon.
Tearfully, Maureen requested that if she survived the transplant (remember the odds were 6 in 10) she wanted John to take her to the Grand Canyon. Figuring she probably wouldn't survive, John quickly agreed.
As you know by now, Maureen survived the BMT with flying colors. So on April 26, Maureen and John left in the Eldorado for a 9-day road trip, 3 days to the Canyon via Western Kansas, the Royal Gorge, and Northern New Mexico, 3 days at the Canyon, and 3 days back via Utah, Vail, Eastern Wyoming and the Black Hills.
Turns out, the Grand Canyon is a big hole in the ground! Maureen was disappointed to find it cluttered with buttes, mesas, and side canyons -- she wanted a cleaner hole. John saw the development potential - hotels and restuarants on the rim, shopping malls on the mesas, waterparks at the bottom, and upscale housing in the side canyons. Seems to be some sort of moratorium on development, but presumably George W. can clear this up.
We stayed at the only hotel currently on the rim, even had a thin view of the Canyon from our room. We went rafting, but due to time restrictions (the shortest white-water trip is 4 days) and Maureen's health, we took the one-day flat-water trip. Not much wildlife at the bottom of the Canyon, but from the rim we saw wild Condors, plus deer, elk, coyote, pronghorn, etc. Had a very nice time.
Maureen got along well generally, but she had trouble with the altitude passing through Colorado, as she is still quite anemic. She has fared so well with the transplant that it is tempting to think of Maureen as good as new, but this is not quite the case, and the anemia is one example.
Maureen has no symptoms from lymphoma; in fact, there is no evidence that she still has lymphoma (nor proof that she doesn't). The hope is that her new bone marrow will recognize and fight off the lymphoma if and when it returns.
She has a few symptoms directly related to the BMT: her new marrow is producing enough blood cells that she no longer requires transfusions, but she still "runs a quart low." This isn't always obvious, but it was very obvious when she tried to hike even short distances at higher than normal altitudes, and she doesn't have much stamina even in Mpls. Her doctor also says Maureen should expect chronic host versus graft disease (GVHD). She doesn't seem to have any symptoms of this right now, but it can come on fast, and apparently Maureen will get it off and on for the forseeable future. Untreated, GVHD can be fatal; fortunately it is easily treated.
Maureen's main physical problems these days are side-effects from the drugs she is taking to fight GVHD. Prednisone is a powerful and popular steroid which strengthens Maureen's overall vitality and fights GVHD. But, among other things, it causes water retention and weakens her bones. Maureen's dose of Prednisone changes constantly; when GVHD symptoms are present, the dose is increased, and when they are not she is tapering to reduce the side effects. Maureen's other major medication is a growth hormone to encourage her new marrow. This also requires constant adjustment because too much is toxic and too little ineffective. And even when the dose is perfect, it causes hair growth all over. Maureen finds the low energy, the weight gain, and the facial hair annoying, and she hates the lack of control associated with her doctor constantly adjusting her medication. But given the prognosis in November that she wouldn't be alive today without the BMT, it's not that bad.
Maureen would like to thank the many people, too many to name but you know who you are, who have called, written, or signed in on this website guestbook. The support she received from all of you was critical to maintaining her morale through the dark hours, and maintaining her morale was a key to surviving the BMT. She wants to thank all those who prayed for her, especially the gang at Minnehaha UMC. She thanks Cindy and Sara for keeping her family fed while she was in the hospital. She thanks her walking and socializing buddies: Marilyn, Janelle, Judy, Ashley, Bonnie, Dorothy, Diane, Susan, and Beth. Special thanks to Bonnie for the custom-made caps which kept Maureen's head warm when she had neither hair nor circulation (we think there is a big market here among the chemo-crowd, do you want to go into business?). And clearly, the greatest contribution to Maureen's mental health was made by her dear friend Katie, who came out of retirement to teach Maureen's class for six months. Maureen also thanks Sherry, John, and the kids for their unwaivering support, and the U of M BMT team for their medical expertise. Maureen did the heavy lifting, but she had a lot of help.

Monday, April 17, 2002 at 12:00 PM (CST)

Maureen had her mcuh anticipated 100-day bone marrow biopsy last week; we got the results today. The news is wonderful! Maureen's bone marrow is cancer free for the first time in over 4 years. She is also 100% "engrafted," i.e., the transplanted bone marrow has completely eliminated her old marrow.

She had her torso CAT-scaned at the same time. The scan was negative for new tumors in her lymph system. There are some dense bodies in the vicinity where her lymphoma was the worst, but these may be just the remains of inert/dead tumors. A negative scan doesn't prove the lymphoma has been erradicated, there may be cancer so small and so slow-growing that it just doesn't show up yet. But this was the first negative follow-up scan in 4 years!

Maureen's immune system is still way below normal; so she must continue avoiding sick people, kids, animals, and dirt, for at least another six months. But other than that she can live a fairly normal life.

However, Maureen's graft versus host disease (GVHD) has returned in strength. Her doctor predicts she will have chronice bouts of GVHD for months and years to come -- perhaps for the rest of her life. GVHD is annoying, but the doctor feels it can be managed -- primarily with Prednizone. Maureen beat the first case of GVHD, in Feb., with Prednizone; she had been tapering off of this powerful steroid ever since. As soon as she reached zero, the GVHD returned. So she is back on Prednizone, but not nearly as much as in Feb. The next year is likely to be a yo-yo deal, on and off the Prednizone. Prednizone has nasty side effects, but it beats dying of lymphoma or GVHD.

Related to her positive prognosis, Maureen had her "double-Hickman" i.e., the tube in her chest, removed today. The Hickman was very handy when she was getting frequent transfusions, but she isn't likely to need any in the near future. She is still anemic, but not to the degree that she needs transfusions. Meanwhile, the Hickman was an infection risk. And with the tanktop and swimsuit season upon us, Maureen is glad not to have tubes sticking out of her chest.

Monday, March 25, 2002 at 07:15 PM (CST)

A detailed account of Maureen's Bone Marrow Transplant is available by reading through the collected journal entries beginning in Dec.2001. Just click on "past journal entries" at the bottom of this page.

When Maureen was in the hospital and things were happening fast, we were updating this journal every couple of days. Then we slowed down to once a week for a while, and this update covers three weeks. The reason for the slow down is that not much, which is observable, is happening; which, of course, is good news.
Maureen goes to the hospital once a week for tests, and she only sees a doctor every other week. In mid-April, she will have a more extensive (and more intrusive) test which will provide the first evidence as to whether her new bone marrow is any better at fighting the Lymphoma than her old marrow was, or whether the Lymphoma has recovered from the heavy chemo/radiation Maureen got just before the transplant. We will be sure to announce this news as soon as it becomes available.

In the meantime, Maureen's primary struggle is to maintain her extensive medication regime, and manage the side-effects thereof. She has some trouble with diarhea, reflux-indigestion, cramping, and a minor rash. Her biggest problem is low (for Maureen) energy. She has about half as much energy as she used to; i.e., she has about as much as most healthy people. And even that is growing; this morning she announced plans to redecorate the house in a California-Mission Style. Join the family in praying for a minor relapse, just until she gets over the Cal-Miss thing.

In fact, Maureen feels so good that she has resumed traveling. John was invited to speak at a U. of Wash. conference in suburban Seattle on March 20. After receiving a lukewarm okay from her doctor, Maureen decided to go along. John cashed in some vacation time, and they spent two extra days in Seattle. The first night in Seattle, the temprature dropped to 35F, an all-time low for that date. So many of the shops and resturants were closed, and those which remained open were half empty, which was perfect because Maureen is supposed to avoid people anyway. Maureen had a wonderful time and really enjoyed the change of scenery. The only problem was a 7hr layover (3hrs scheduled, 4hrs delayed) in Chicago.

One observation regarding airport "security:" One of Maureen's medications comes in an unusual mechanism which the nurses commonly refer to as a "bomb." The bomb is a translucent plastic sphere about the size of a large orange. It comes with about 6" of tubing attached. To administer the medication, Maureen opens the valve and connects the bomb tubing to the tubing implanted in her chest. Mysteriously, the bomb then contracts like a balloon with a slow leak, pumping the medication from the bomb into Maureen's heart. It takes about an hour and doesn't rely on gravity - she can hold it in her lap, below her heart. She needed to take several of these bombs to Seattle with her, and naturally she carried all of her medications on to the plane, distrustful of baggage handling. So she went through security wearing a surgical mask which obscured her face, a headwrap (she is sensitive about being bald), and carrying a cooler containing a dozen or so orange-sized spheres filled with an unidentifiable liquid. But, of course, no one looked in the cooler and no questions were asked. Meanwhile, John's carefully taped-for-shipping case of Lodge Magics, which he was checking, was cut open and each book inspected to see if it was hollowed out (and the box poorly resealed).

Wednesday, March 06, 2002 at 01:08 PM (CST)

We have been updating this journal approx. weekly since mid December. If this is your first visit to Maureen's web-site, you may want to see some of the earlier entires for a more complete description of Maureen's illness and treatment. Click on "past journal entries" at the bottom of this page.

The news continues to be good. Maureen is now 100% "engrafted," versus 95% last week. This means her old bone marrow has been completely replaced by the transplant. Along with her old bone marrow, her old immune system is also gone. This was the main objective -- her old immune system was fundamentally inadequate to fight the lymphoma, and it had been further compromised by four years of chemo-therapy. On the other hand, her old immune system had seen her through the mumps, measles, yeast infections and too many colds to count.

Now she has new bone marrow, grown from stem-cells harvested from a stranger's umbilical cord, and the immune system of a 60 day-old baby. This means she is again susceptable to mumps, measles and all the latent viruses which have accumulated in her 52 year-old body. Normally we think of babies as pretty resiliant, and we routinely expose them to the hands and faces of friends and relatives, where they acquire the low-level viruses which become the building blocks of an immune system. So why aren't we passing Maureen around and having strangers at the mall chuck her under the chin?

Maureen has the added complication of graft versus host disease (GVHD), a term describing the tendency of Maureen's new immune system to regard Maureen as a virus. Maureen had several classic symptoms of GVHD back in early Feb. This early GVHD was a confirmation that the graft was working, but it was also a significant threat -- people often die from GVHD. So Maureen was given steroids and anti-biotics to fight the GVHD, and it worked -- her GVHD seems under control.

The problem is that steroids and anti-biotics tend to slow the development of an immune system, which she will need before people start chucking her under the chin. So now, Maureen is cutting back on steroids and anti-biotics, in hopes that she can keep the GVHD under control while she builds an immune system. But she is producing her own blood now, so she rarely needs transfusions anymore, and her blood levels are more stable. Until very recently, Maureen had to go to the outpatient hospital clinic daily, but suddenly she only needs to go once a week. This could change if her GVHD gets worse, or if she gets an infection which her immature immune system cannot handle, but so-far, so-good. Hopefully, the next big event in Maureen's treatment won't occur until mid April when she is tested for a return of the lymohoma.

Maureen's first public outing was a couple of weeks ago when she attended the UM-Morris production of "The Vagina Monologues," in which Phoebe starred. Since then, she has visited the library and attended movies at off-peak hours -- avoiding crowds. Last night, she pushed her luck by attending her local DFL caucus -- we hadn't expected a crowd, but it was full. Maureen tried to stay off in a corner and kept her mask on.

The caucus was entertaining as always. After awarding district-delegate status to everyone who showed up, the 4th precinct of the 11th ward tackled an interesting variety of resolutions, including John's resolution promoting training the police not to shoot so many people (it passed). The highlight of the evening was a series of resolutions proposed by a man who had been assisned them by his union. Most were lengthy, complex and quickly passed. One of his proposals would have required coal-burning power plants to reduce emmisions of seven noxious substances, including mercury.

Another participant objected on the grounds that it wasn't practical to reduce mercury emmissions any further than the current standard. This led to a vigorous free-for-all discussion of stategies for reducing mercury emmissions from coal-burning plants, made all the more fun by the fact that no one in the room, including the proposer of the resolution and his main antagonist, knew anything about burning coal, emmitting mercury, or engineering in general. Eventually, an ammendment was proposed which would have stricken mercury from the list of emmissions in the resolution. When a voice vote on the amendment proved inconclusive, a man, who had not been particularly vocal regarding mercury emmissions, called for a division of the house.

A hand count seemed to result in the amendment passing 9 to 8, until the same man demanded a "DIVISION OF THE HOUSE." After several minutes of confusion, it developed that the demanding party held the view that a "DIVISION OF THE HOUSE" excluded the option of abstentions; counting 23 people in the room, he demanded that the other six people be required to take a side. A lengthy and passionate discussion of Robert's Rules of Order ensued, again made more interesting by the absence of expertise. Eventually (through mob-rule intimidation rather than any logical process) it was determined that the man's demand was absurd. As the amended resolution was being voted on, the man, accompanied by his wife, stormed out of the meeting lamenting the failure of democracy.

The precinct chair seemed unnerved by this display and never quite regained her composure. Later as the meeting was being adjourned, she inquired nervously as to how the minutes of the meeting would characterize the conflict over "THE DIVISION." It was then that it was discovered that the precinct secretary was the woman who had exited with her irate husband, taking the minutes with her.

Tuesday, February 26, 2002 at 04:06 PM (CST)

See previous entries (by clicking on "past journal entries," at the bottom of this page) for more info on Maureen's illness, treatment, and progress to this point.

Lots of good news! First, Maureen is fully "engrafted," i.e., the stem-cells from one of her transplants has taken over and is producing bone marrow. From an immunity perspective, she is a new person, born Jan.2, 2002.

Second, her GVHD is under control for now. When she had her initial experience with GVHD about 3 weeks ago, the doctors were pretty calm about it. Now they say it was pretty serious and they were worried. But the obvious symptoms of GVHD are gone, and they have begun tapering the Prednizone and the other anti-GVHD medications.

Third, due to the above developments and the absence of major infections, Maureen's schedule at the hospital has been cut from everyday to 2 to 3 times per week. Maureen is very happy about this!

This does not mean that Maureen is completely out of the woods. Basically, there were three hurdles. The first, least problematic hurdle, was the engraftment. She is engrafted; this hurdle is behind her. The second hurdle, which carries the largest risk of mortallity, is management of infection and GVHD. Initially, the docs said the first 30 days were the risky period; now they say the first 100 days. Maureen is currently on day-57 and looking good. The third hurdle is whether or not her new immune system will be more effective than her old one in fighting lymphoma. We won't know much about this until mid-summer. Maureen's doctor talks about "teaching" her new immune system to fight lymphoma, but we aren't clear what this means.

Maureen immediately celebrated her freedom from daily hospital visits by traveling with John to Morris to watch Phoebe star in "The Vagina Monologues," thus fulfilling one of Maureen's death-bed wishes -- to be able to watch her daughter talk to hundreds of strangers about her vagina.

Relieved of the daily routine of hospital visits, and with the Olympics over, Maureen is now more bored than ever. If you are a healthy adult, call first, and visit.

Friday February 15, 2002 3:44 PM CST

If this is your first visit to Maureen's web-site, you may want to check out some of the features offered at the bottom of this journal entry. "Past journal entries" contains all the journal entries since this web-site began. The entries for Dec.21, Jan.7, Jan11, and Jan.18 are particularly focused on the details of Maureen's illness and treatment. "Photos" has a picture of Maureen when she had hair. And please sign the "Guest Book," which also has a record of all the notes Maureen has received from her 2000 visitors. (Well, not all; we had to delete the one from Josh because he left his email address where Maureen's students could read it.)

Maureen has recovered from her second surgery to install a Double-Hickman (three, if you count the surgery to remove the first one). The DH sure makes things easier, some days Maureen is out of the hospital in under 3 hours. Everything seems to be on track; right now the transplant is growing without causing too much GVHD. Maureen's doc told her she could be the "poster-girl" for the U's BMT clinic (but she heard him tell another patient the same thing). This doesn't mean she is completely out of the woods, but she is doing as well as could be expected.

Maureen's primary problem right now is serious "acid-reflux" heartburn. Thanks to the heavy chemo back around New Years, the battle of the bone marrow for control of her blood supply, and the thirty-some pills she takes each day, her G.I. track is pretty chewed up. She is on the maximum doses of both Prilosec and Zantac, but some days it isn't enough. Heartburn isn't fatal, but it can be debilitating.

A problem to look forward to, in addition to keeping the GVHD under control, is when they begin to phase out the high-dose Prednizone. In previous chemo-therapies, Maureen had received 10 mgs of Prednizone for 3 days at a time, and had experienced serious withdrawal symptoms when they took her off. Maureen is currently on 105 mgs for 30 days.

When Maureen is feeling well, as she currently is, she starts to get stir-crazy. John and Ethan will both be out of town this weekend. Tessa and Phoebe will be around, but they have lives to lead also. If you are healthy, this would be a good weekend to visit (afternoons or evening, she is at the hospital every morning).

In other news, Team-Maureen raised $1200 at last week's Walk for Lymphoma-Luekemia. Phoebe was named one of 200 national finalists for a prestigious Truman Scholarship (check out www.Truman.gov). John's men's volleyball team's eight-year streak of winning the Mpls City championship was broken, 2 games to 1, in this year's finals, by Ethan's team -- at least the trophy stays in the family.

Tuesday February 12, 2002 2:47 PM CST

Additional detail regarding Maureen's disease and treatment is available by clicking on "past journal entries" at the bottom of this page. See especially the entries for Dec.21, Jan.7, Jan.11, and Jan.18.

Nothing real dramatic has occurred in the past week. Maureen is still living at home, still going to the hospital everyday, still battling graft versus host disease (GVHD). The big news was the replacement of her "Double-Hickman" (see Dec.21). Maureen had at least one infection (probably several). Apparantly, it is standard procedure to remove a DH whenever there is an infection, even though there is no evidence of the DH being responsible for the infection, because the DH tends to harbor infection, so it makes no sense to treat the infection with the DH in place. A temporary fill-in for the DH was a "pick-line" in Maureen's wrist. This was a big hassle, because whereas the DH was a double tube feeding into large veins just outside Maureen's heart, the pl fed into a single small vein. This creates a traffic jam. Suddenly, a blood transfusion and the IV administration of 4 or 5 meds took 6 hours instead of 90 min.. Maureen is not an especially patient person, but attempts to speed up the process were quite painful.

Finally, on Feb.11, a new DH was implanted. As you might guess, implanting a DH is major surgery, so Maureen is still recovering from that. But in another day or two, she should be back to baseline. Unfortunately, she is likely to get additional infections (see Feb.6), which may require the removal of her new DH. Her doc made some referrence to a limit on how many times she can get a DH, but we're not clear about that.

Otherwise, Maureen has had a lot of diahrea, and she is losing her muscle-tone, but her rash is gone. Her doc says that evrything is pretty much dead-center of what he expects to see. We interpret this remark as a good thing.

Wednesday February 6, 2002 5:50 PM CST

Maureen met with her primary doc today, and gathered new insight on her treatment; this update will focus on that news. For information regarding the "WALK FOR LEUKEMIA/LYMPHOMA" coming up this Sat., see the journal update from Feb.3. For a more complete description of Maureen's illness and treatment, see the journal updates of Dec.21, Jan.7, Jan.11, Jan.18 and Jan.30. All previous updates can be viewed by clicking on "past journal entries" at the bottom of this page.

Tests confirm that Maureen has graft versus host disease (GVHD), the obvious symptoms of which are a full-body rash and gastro-intestinal problems. This is not necessarily bad news; first, it confirms that the transplant has taken root and is producing new bone marrow, and second, GVHD is a standard development in the course of a BMT.

But GVHD is a problem; left untreated, it is fatal. Fortunately, the BMT docs have a lot of experience treating GVHD. Starting on Feb.4, Maureen has been receiving "high-dose" (110mgs/day, 10 to 20 mgs is a standard dose) Prednizone. Maureen's doc is confident this will stop the GVHD.

But it stops the GVHD by stopping the transplant from growing, which is a bad thing. It also suppresses her infantile immune system. (Remember, her native immune system, acquired the hard way over 50 years, was destroyed in preperation for the transplant.) Not only is she at risk to new infections (which is why she can't leave home without a mask), but she is also succeptible to every infection she has had since birth. Apparently, a person never completely gets rid of any cold; it fades into obscurity after being beaten by the person's immune system, but lies in wait for another opportunity, and the opportunity is here! (Does this remind anyone of America's "War on Terrorism?")

So in addition to the Prednizone, Maureen is receiving heavy doses of 3 different anyi-biotics. Again, her doc is confident the anti-biotics will prevent life-threatening infections, but the anti-biotics also slow the growth of the transplant. The prescription, then, is a delicate balancing act. Unless the transplant-graft eventually takes over Maureen's body, she will surely die from Lymphoma. If the transplant-graft takes over too fast, Maureen could die from GVHD. And if the whole process takes too long, Maureen could die from a cough she had when she was seven.

However, Maureen's doc doesn't think any of these things will happen. He is very pleased with her response so far, and optomistic that he can steer a middle course to health. If you are so inclined, pray that he is right.

Sunday February 3, 2002 10:04 PM CST

Click on "past journal entries"at the bottom of this page for more details of Maureen's treatment; see especially Dec.21, Jan.7 and Jan.11.

Maureen is still home, but she is starting to show the beginning signs of graft versus host disease (GVHD), mainly a full body rash. They gave her a cream for the rash and she will be starting on steroids soon. They also did some tests which will confirm the presence of GVHD. But the rash is typical of GVHD and the timing is right. We were halfway expecting GVHD to show up in early Feb.; most BMT patients get GVHD. The trick is to keep it under control.

Maureen has experienced nausea and diarhea off and on for the past week. This could be a lot of things, but most likely it is caused by the GVHD. Theoretically, her three different kinds of bone marrow are at war with each other. Many cells are killed in this war (presumeably some from each side). These dead cells have to be excreted, so they end up in Maureen's bowels. This unusual flow of dead cells causes diarhea and nausea.

They give Maureen fluids or platelets almost everyday, now. Maureen struggles to eat and to keep food and her enormous regimen of medication down. If she can't eat or swallow pills, she will have to be re-hospitalized so she can be fed and medicated intravenously.

Although Maureen goes to the hospital everyday, she doesn't always see a doctor. She is scheduled to see her primary doc on Feb.6, and the results of some of the recent tests should be available by then.

Many of you have asked, "is there anything I can do?" Giving blood is always good. You don't have to designate it for Maureen; just go to your local blood bank and donate.

There is also a "Walk for Leukemia/Lymphoma," sponsored by the Leukemia/Lymphoma Society coming up on Sat., Feb.9 at the Mall of America. Registration is from 7:00 to 7:45am, the walk from 8:00 to 9:00. You can also register online at www.leukemia-lymphoma.org.

This is the standard sort of fund-raiser where you get sponsors and the money goes to the LLsociety. Maureen's colleague, Mary Catherine Halasz-Black, has already registered "Team-Trepp" and organized Maureen's students from Field School. Presumably, anyone could join "Team-Trepp." If you don't want to walk, but you would like to help sponsor one of the student members of "Team Trepp," you could send Mary Catherine a check made out to the Leukemia/Lymphoma Society in care of:
South House
Field School
4645 4th ave so
Mpls, MN, 55409

Wednesday January 30, 2002 8:41 AM CST

Click on "past journal entries" at the bottom of this page for more info regarding Maureen's treatment. We recommend the entries from Dec.21, Jan.7 and Jan.11.

We haven't updated for a while because the "LAN" link from Tasks was down, but nothing dramatic has happened. Maureen is still home, still going to the hospital everyday, still getting transfusions every third day or so. She needs the transfusions because she doesn't have enough active bone marrow to produce her own. She recently got the results of a test concerning her blood. The results showed that 81% of her blood was native or transfused, 16% was from one of her donated "cords" and 3% from the other donated "cord." The test was done on blood drawn the 13th day after her transplant and it proves that both of her "cords" were successful in taking root. The idea now is for the stronger of the two transplants to grow and defeat both the native marrow and the other transplant. This can take a long time, even up to six months. You may recall from previous journals that Maureen is expected to become ill as the battle heats up -- "graft versus host" disease (GVHD). This is most likely to occur during February or March, and may require re-hospitalization. The doctors have advised us not to panic if this occurs, a liitle GVHD is considered a good thing. Too much GVHD, of course, can be fatal. Anyway, there is nothing to do now but wait and pray,

Maureen has had only a few bad days, and even then, not too bad. She was puking a lot one day, and really weak (from low red count) another. Her bone marrow test last week (no results yet) was predictably painful, even more so because the U of M is a "teaching" hospital which insists on having procedures performed by rookies, and she was very tender for several days. But mostly her problems have been fatigue, boredom, and fear of what's to come. Other than that, she is eating normally, crotcheting hats, watching Gopher basketall, playing the family's new game "Settlers of Cataan," and enjoying the guestbook entries on this site. One day last week, she and John even took a drive, down Wisc. 35 as far as Alma (John thinks they should buy property for a retirement home down there, so they poked around on back roads). Last night, Maureen attended her "circle" meeting, her first social outing since the transplant. However, she failed to keep her mask on despite her doctor's warnings to do so. She also got very tired very quickly. Despite being tired, she doesn't sleep well, or perhaps she is always tired because she doesn't sleep well. The family will have to increase our efforts to keep her under wraps.

Friday January 18, 2002 2:12 PM CST

Maureen is doing well. This journal entry focuses on her past week. Background information regarding her treatment is available by clicking on "past journal entries" at the bottom of this page; see especially the entries for Dec.21, Jan.7, Jan.9 and Jan.11.

Maureen came home one week ago today, and things have been fairly uneventful. She goes to the hospital everyday for a checkup. Since her bone marrow is not strong yet, she often needs transfusions, usually red blood or platelets -- kind of like having your fluids topped off at the garage. Except they don't fill her all the way up to full; they keep her a quart low to stimulate the bone marrow to get to work. As a result of being a quart short of normal, she is a little run down, a little tired, a little pale. Of course, a little slow by Maureen's standards is about average for the rest of the world.
The next big hurdle is to verify that the transplant has taken hold. She will have a sample of her bone marrow taken (this is a very painful procedure, Maureen's least favorite thing) on Jan.23. It takes about a week to get the results. The results should show 3 different strains of marrow: the strain she was born with, and one from each of the umbilical cords she got stem-cells from.
Ultimately, Maureen can only have one strain of marrow, so sometime during February or March, the War of the Marrow is expected to break out. This will make her sick; how sick, we aren't sure. It could be barely noticable, or it could be fatal. The important thing is that one of the new strains wins, the stronger of the two. The whole point is that after the winner kicks Maureen's old marrow and the weaker interloper off the island, it will be ready to take on Maureen's lymphoma, which will have recovered from her Christmas-to-New Years chemo about then. If all works right, the outcome of this ultimate conflict will be measurable by mid-summer.
The other big news is that the Trepp's have given in and decided to purchase in-home internet access. It should be installed sometime next week. Obviously, this violates several basic principles that Maureen and John have always lived by, but it will give Maureen access to the world (and to you) during her convalescence. And, horror of horrors, it even comes with cable TV (although the kids have already noted that the most basic package, which Maureen and John selected, does not really qualify as "having cable"). Since Ethan gave Maureen a cell phone last Mother's Day, and she now has internet and cable, can an SUV be far behind?

Friday, January 11, 2002 at 01:38 PM (CST)

Journal entries from Dec.21, Jan.7, and Jan.9 have additional detail regarding Maureen's treatment. You can view these by clicking on "past journal entries" at the bottom of this page.

The headline above is slightly premature. Maureen is not quite home as this is being written, but she is scheduled for discharge later this afternoon. (We are aware that Maureen's discharge is inconsistent with previous journal entries; more about that below.)
Obviously, it is good to have Maureen home, and it is an indication that her treatment is going well. It does not mean that she is out of the woods, cancer-free, or likely to return to work anytime soon. She isn't really sick, she just needs to be very careful about avoiding infection, and must be monitored closely to see if she is getting sick. For the next couple of weeks, she will get daily checkups at the outpatient BMT clinic at the U. If they see anything they don't like, she may be hospitalized immediately. These emergency hospitalizations may last a day or a month. If Maureen continues to do well, she may not have to go everyday.
Until Maureen gets sick, she will have relatively few restrictions, mainly to avoid sick people. This means she can't go into stores, restuarants, theaters, etc. She can go outside, but needs to wear a mask. She cannot vacuum, or be in a room that is being vacuumed. Much to Maureen's dismay, she can do laundry. She cannot garden.
The current thinking is that Maureen is unlikely to get a life-threatening infection. The other big threat is "graft versus host" disease (GVHD). Some GVHD is normal with a BMT, even desireable - no GVHD means the graft isn't working. Too much GVHD could be fatal. Maureen is expected to get GVHD sometime in Feb. or March.
There is always a possibility that the graft doesn't take, but Maureen's doctors don't seem especially worried about that. A test scheduled for Jan. 23 will answer this question.
The last question is how effective will the new bone marrow be in fighting Maureen's lymphoma. It will be at least mid-summer before we have an answer to this one.

Frequent visitors to this web-site may wonder why past entries have been so misleading regarding Maureen's treatment. Good question.
Bone marrow transplants have been performed at the U of M for about 30yrs. Transplants from the cord-blood of unrelated donors have been done for about 5yrs, but with poor results for patients over 35. A new variation of the cord-blood transplant, referred to by the BMT docs as a "mini-prep," was initiated recently. Maureen was apparently the 5th patient to receive a "mini-prep" at the U.
The procedure is so new that no one knows what to expect. Maureen was hospitalized for 16 days, and had a catheter inserted into her heart, on the expectation that she would get sick (and need 24hr care, be unable to take oral meds.). But Maureen hasn't been sick. Her doctor admitted yesterday that Maureen should never have been hospitalized. (Which explains why many of Maureen's visitors were disappointed to find a bored prisoner instead of a sick person.) She still may get sick, but no one knows when. Her doctor says it is silly to keep someone in the hospital waiting for her to get sick, especially when she lives 15min. away. (Some of the U's patients are from out of state, including one Packer fan.)
Maureen's family is slightly annoyed about the pre-admission conference. We believe Maureen should have been told that she was agreeing to a treatment that no one knew much about. Instead, she and her family were given a detailed description of what happens to people who recieve a substantially different treatment. (There was one brief reference to the fact that some changes had been made, but this was understated.) We were told that Maureen would be hospitalized a minimum of 45days. Maureen's questions regarding possible activities while in the hospital (e.g., playing a electronic keyboard, conjugal visits, etc.) were dismissed with the answer, "you'll be too sick to even think about it." We were told the "danger period" would be mid-January, which instead turned out to be her discharge date. And speaking of "danger," Maureen was told that the mortality rate from infection was around 30 to 40%, but it was worth the risk because the chance of complete victory over cancer was around 25%. Obviously, Maureen spent several difficult days and nights pondering her decision to proceed. But as far as we can tell, "mini-preps" haven't produced any deaths,or even life-threatening infections at the U, and they are now admitting that the prospects for complete victory are probably substantially less. Maureen would surely have chosen to proceed, and is obviously grateful for the improvements which were made. The annoying part is that Maureen experienced the fear and the anxiety of the $100 table when she was actually playing at the $2 table, all because the BMT team was reluctant to convey how little they knew.

Wednesday, January 09, 2002 at 05:42 PM (CST)

Two previous journal entries, Dec.21 and Jan.7, provide additional detail about bone marrow transplants. You can view these (and other previous updates) by clicking on "past journal entries" at the bottom of this page.

Maureen continues to do surprisingly well.
Prior to the beginning of treatment on Dec.26, there was a lengthy family conference to explain the expected course of treatment. During this conference, there was a brief reference to the fact that Maureen would receive a protocol which had been changed slightly, and somethings might be different than the under the old protocol. This was emphasized only with respect to the mortality rate of the transplant: "We think the mortality rate is around 30 or 40%, but we aren't sure because this protocol is new."
Our sense now is that the new protocol used on Maureen has a substantially lower mortality rate. A major cause of mortality (they are now admitting to 50 to 60%) under the old protocol was the total elimination of the patient's white-cells (see Jan.7 for more detail). But even the day after radiation and the last chemo, Maureen had a white-cell count of 100 (100 what per what, we're not sure). And it has grown since then, reaching 1,000 today. And apparently this is consistent with the response of other "new-protocol" patients.
Today, we were stunned to learn that they plan to send her home when her count reaches 1500, and that could be as early as Sat., Jan.12! This is quite a shock given the pre-treatment advise that she would be hospitalized for a minimum of 45 days. When we asked if it was safe to send her home at the beginning of what had been described as the "danger period" (see Dec.21), her doctor said, "Well, that doesn't really apply to the new protocol." So, if things continue to go well, Maureen will be home soon.
This doesn't mean she is completely out of the woods, and certainly not through with treatment. Once discharged, she will attend the outpatient BMT clinic every day (at first). They are promising to rehospitalize her at the first sign of complications. There will be certain restrictions on her activities (more about these another time).
After digesting our joy and gratitude for the new protocol, two scary questions emerge from the fear in our hearts. First, if the pre-transplant chemo did not eliminate all of Maureen's marrow, does this mean an increased risk for "graft versus host" disease? "No," said her doctor, "it seems to be about the same." Second, does it mean a reduced likelihood of complete victory over cancer? "We expect that the percentage of survivors who are cancer-free will be less," said her doctor, "but remember that under the old protocol, a majority of our patients weren't surviving the transplant."
In some sense, percentages don't matter much anyway, we only have one Maureen.

Monday, January 07, 2002 at 11:19 AM (CST)

Additional details regarding Maureen's treatment are available by clicking on "past journal entries" at the bottom of this page. See especially Dec. 21.

It has been 5 days now since Maureen's transplant and things are going very well. She isn't sick yet and is still receiving visitors with a few limitations:
* Nobody sick with a cold.
* No kids.
* Handwashing (with the special soap available right outside her room) required.
* Only three people can remain in the room at a time. (Feel free to peak in, if any of Maureen's immediate family is there, we are often eager to take a walk or get something to eat, etc.)

Modern Bone Marrow Transplants (BMT) do not phyiscally involve marrow, but rather blood containing stem-cells with the potential to produce marrow. Maureen was given stem-cells from unrelated umbilical cords (her mother forgot to save hers). This procedure is only about 5 years old and still in development. So far, there has been a relatively high mortality rate among recipients over the age of 35.
The two main culprits are secondary infections and "graft" (the white cells produced by the marrow produced by the imported stem-cells) versus "host" (Maureen) disease. Secondary infections have been a huge problem because until very recently, pre-transplant procedures involved enough chemo and radiation to kill all of the patients own marrow. It takes at least 10 days for the imported stem-cells to produce enough new marrow to produce blood in significant quantities (thats where blood comes from). Patients typically needed frequent transfusions of red-cells and platelets. But it is impractical to transfuse white-cells because white-cells have a very short life span. So the procedure left the patient with a gap of at least 10 days without infection-fighting white-cells.
Maureen's treatment involves a new protocol. She received chemo in higher doses than she had received over the past four years, and radiation for the first time, but both in lower doses than previous cord-blood recipients. As a result, not all of her marrow was destroyed, and she continues to produce blood, though obviously at a reduced rate. In 5 days, Maureen has needed only one transfusion each of red-cells and platelets, and samples of her blood continue to reveal measureable numbers of white-cells.
The staff of the BMT unit are accustomed to patients who are quite ill by the second or third day after transplant, but Maureen remains healthy. There is one other recipient of this new protocol on the ward, and she/he remains healthy also. (Apparently, Maureen and this other patient were only the 4th and 5th patients to receive this new protocol at U of M.) The plan is for the old marrow to keep Maureen healthy until the new marrow kicks in, and it seems to be working.

Sunday, January 06, 2002 at 05:41 PM (CST)

For a complete description of Maureen's treatment, click on "past journal entries" at the bottom of this page, and see the entry for Dec.21.

Maureen continues to do well. "Very well" her new doctor says. Maureen and one other patient are receieving a new protocol, and the treatment team seems thrilled with how well it is working for both of them.

Wednesday, January 02, 2002 at 02:26 PM (CST)

For a complete description of Maureen's proposed treatment, click on "past journal entries" at the bottom of this page, and see the entry for Dec. 21.

Things continue to go well, as far as we can tell. Maureen had her radiation this morning (more about that later) and her transplant this afternoon. The transplant took all of 10min. We held a religious ceremony, which Tessa wrote, to celebrate Maureen's rebirth.
Maureen experienced a little nausea after the radiation, which is perfectly normal. They gave her an anti-nausea med, and it seemed to help. She also received an anti-allergy med with the transplant. Both the anti-nausea med and the anti-allergy med are mildly sedating, so she is kind of groggy for a while -- not sure how long this will last.
Maureen had many visitors over the holiday/weekend, and her spirits seem good.
There was a slight glitch in Maureen's treatment related to the radiation. The schedule she was given said she would get the radiation on Jan. 1. At the family conference back on Dec 21, we inquired if that would really happen if Jan. 1 is a holiday. We were assured that the "protocol" would be followed regardless of holidays. The protocol calls for radiation on the sixth day of treatment and the transplant on the seventh day, and nothing interferes with the "protocol." As recently as New Year's Eve, the staff was telling Maureen she would get radiation on Jan.1.
It turned out that Jan. 1 was a holiday, and naturally the radiation department is closed on holidays. Maureen's radiation was rescheduled for this morning and the transplant for this afternoon. We were assured that the proximity of the radiation to the transplant is a trivial matter which will have no affect on Maureen's chance of success.
The most troublesome piece was that when we questioned this change (naturally we were a little surprised by it), the "Attending Physician" scolded Maureen for doing so. The "A.P." explained that success rates are affected by the level of trust and confidence the patient has in her doctor -- the more trust, the better the chances. It seems Maureen was hurting her own chances by questioning the "A.P.'s" judgement. John suggested that if trust* was really important, the staff might focus more on accurate communication, and less on scolding the patient, but the doctor dismissed this as revealing a lack of understanding of how to deal with people, a skill of hers in which she takes pride. As it turns out, Jan. 1 was the last day of this paricular doc's turn to play "A.P." A new "A.P." starts today; no doubt he is looking forward to meeting the Trepps.
In the meantime, this issue is a banned topic in front of Maureen. In case the doc is right about this trust deal, the family is supporting the notion that both the rescheduling and the manner in which it was communicated to Maureen are trivial matters unworthy of further discussion.

*We aren't certain about this concept. It sounds intuitive, but we remember readng about a study of nursing home patients that said the crankiest patients live the longest. It could be that the "trusting patients do better" is: 1)a scam to make the staff's jobs easier; 2)an unproven theory based on circumstantial evidence; or 3) an actual scientific fact based on double-blind research. It is also possible that the effect of trust is greater or less great with bone marrow transplants than with other procedures. If anyone knows anything about either of these questions, drop us a line.

Monday, December 31, 2001 at 11:06 AM (CST)

This journal entry will focus on Maureen's treatment from Dec.26 to Dec.31. For a complete description of Maureen's treatment plan, click on "past journal entries" at the bottom of this page and see the entry for Dec.21.
So far, things have gone pretty well. Maureen has tolerated the chemo well. Her appetite is fading slightly, but she is still eating. She is using her treadmill daily. She is bored, of course.
She has had many visitors, and can continue to have visitors for a while. Right now, there are only three restrictions: 1) a limit of three visitors in the room at one time; 2) visitors must wash their hands before entering; and 3) no one who is sick allowed.
As her treatment progresses, there will be additional restrictions such as gown and masks. Eventually, only her immediate family will be allowed. We will try to keep this website up to date so that you don't make a wasted trip.
So far, Maureen has had company almost 24 hours a day. Phoebe (mostly) and John (some) have slept over on a chair that folds out. She tries hard to not show how scared she is, but on Sunday afternoon, when John got disgusted with the Vikings and prepared to leave before the next shift arrived, Maureen's courage faltered temporarily.
There is talk among the staff that Maureen may be transfered accross the hall to a bigger room with a better view. We will post the news here if that happens.

Wednesday, December 26, 2001 at 03:16 PM (CST)

Maureen entered the hospital today. This journal entry will focus on her Christmas weekend. A detailed description of Maureen's treatment plan/schedule is available by clicking on "past journal entries" at the bottom of this page -- see the entry for Dec.21.
Maureen spent most of Friday, 12/21, in the hospital as an outpatient. Her whole family was there to meet with her doctor, then she got poked, proded and transfused. That evening, she and John went to see "Lord of the Rings." (They didn't like it much; imagine a three hour version of that Marine Corps recruitment commercial.)
Maureen spent most of Saturday shopping, decorating and wrapping presents, and packing for the hospital. In the evening, she and John attended a party at Michelle Brooks', an annual event. A couple of her good friends were there.
Sunday, Maureen and the kids attended church at Walker, followed by more wrapping and decorating. She, John and John's mother, Doris went out for dinner with old friends, the Callahans and Hills.
Monday was Xmas eve, and the plan had been for the family to go to John's sister's house for dinner, gift-exchanging and church. But Sherry had called on Sunday to say that she and her fiance, Nick were ill; Nick was very ill. So the family met Monday morning to consider alternatives. It was decided that the kids would go to Sherry's as planned; John and Maureen stayed home. While the kids were gone, John and Maureen worked on her "Living Will/Advance Directive." The kids brought dinner for John and Maureen, and then Maureen, John, Ethan and Phoebe jumped into the hot-tub for about an hour. Afterwards, everyone, including Tessa went to the 11pm service at Walker. It was nearly 1am when we got home, but everyone agreed it had been a wonderful xmas eve.
Early xmas morning, Tessa picked up Maureen's mother Dorothy, while Maureen cooked up a huge breakfast. After breakfast, the huge pile of presents were opened. No sooner were we finished than Maureen, with help from Tessa and Phoebe, began work on dinner for her extended family. Maureen described the affair as "pot-luck" because everyone brought something, but naturally Maureen, as hostess, did twice as much as everyone else combined. Besides her immediate family, Maureen's hungry relatives included mother Dorothy, mother-in-law Doris, sister Sheila, brother-in law Bill, niece Lisa and her girls Cloe and Kayla, brother Darrell, sister-in-law Kathy, niece Stephanie and her husband Tim, niece Jenny and fiance Pietro, cousin Burch and wife Audrey, daughter Sara and husband Chris, Burch's son Paul, wife Debra, and their kids Laura and Joeseph. Plus Ethan's friend Karl was hungry and had no place to go, so we fed him too; a total of 27. After they all left, Tessa helped Maureen clean up while Ethan and Phoebe took Dorothy home. When they returned, about 9pm, Ethan was eager to try out one of the new games the family had received, so the five of us sat down to play "Settlers of Cataan." At 11pm, Maureen quit the game to have her last meal at home. At 11:30 she and John went to bed (the kids played on); a full day by anyone's standards.
Wed. morning, Maureen checked in to the hospital. She was hustled into surgery where a "double-Hickman" catheter was inserted through her chest and into her heart. We assume that this was done to make the administration of blood and drugs easier. In some sense, the was the most physically invasive portion of Maureen's treatment; everything else will be just a matter of changing the bag on the I.V. pole.
It was barely noticable to Maureen's friends and extended family, but Maureen is terribly frightened about the upcoming procedures. She described a frequent tightening of her chest which made it hard to breathe; not a symptom of lymphoma, just old-fashioned fear. This morning she got up, showered, and dressed for the hospital as though it were a normal work day. She was certainly aware that she may never return home, but she showed no sign of it.

Friday, December 21, 2001 at 03:47 PM (CST)

Winter Solstice: The whole family met this morning with Maureen's new outpatient BMT (bone marrow transplant) doc, Hematologist Ian Okazaki. It seems that Maureen's care is primarily in the hands of Nurse-Coordinator Michelle O'Brian*, but this is the medical world so her doctor of record today was Okazaki. Okazaki mostly repeated what we already knew, but as we get closer, it seems more real.
Maureen needs a BMT because her bone marrow is full of lymphoma, lymphoma is a fatal disease, and chemotherapy has only produced temporary results. The new bone marrow might work better and it might not, but she has little to lose in trying.
She will enter U. hospital on Dec.26, and begin receiving heavy doses (stronger, but otherwise similar to previous treatments) of chemo. On Jan. 1, she will receive radiation (she has not had this before). The purpose of the chemo and radiation will be to kill off most (exactly how much to kill is an art rather than a science, the UofM leans toward killing more than other, more conservative programs) of her existing bone marrow.
On January 2, she will receive a transfusion of blood from two or more umbilical cords (they can't get enough blood out of just one). This cord blood will contain immature stems-cells. The advantage of immaturity is that they will be less likely to attack Maureen than mature cells would be (it turns out there is less risk of Maureen's compromised immune system rejecting the new cells than of the new cells rejecting Maureen). Hopefully, these new stem-cells will take root and produce new, healthy bone marrow, which will attack the remaining lymphoma.
Although this transfusion is the epic event, it won't seem very dramatic -- just a new bag on the I.V. pole. Nor will anything obvious happen for several days. The critical period seems to be 10-21 days out, or roughly Jan.12 to Jan.23. This is when the new marrow should start working.
Maureen will receive frequent transfusions of both red blood cells and platelets, but the technology to transfuse white cells does not exist, the new marrow will have to produce these. Until her white cell count comes up, she will be at great risk of infection. Like a newborn, she will be vulnerable to infection until she develops new immunities, which can take a year or more, but 10-21 days is the highest risk.
If all goes well, Maureen could be home by early February, but she is unlikely to regain her strength until mid-summer.
Dr. Okazaki stressed the importance of a positive attitude and good humor, but we suspect the good humor part is more for the nurses' benefit than Maureen's. Anyway, visitors and phone calls will be encouraged. She may be pretty tired; not her usual self. We will try to keep this updated so that when you speak to Maureen, you can focus on everything but her condition. During the danger period, visitors will need to scrub and wear a mask, and no animals or plants (including marijuana, in case you were wondering) will be allowed. But like a newborn, she needs to get ready for a world full of germs, so she won't be a bubble-girl.
We will post her room and phone # after she is admitted.


*Michelle has fantastic hair (think Farrah Fawcett in her prime): John and Ethan are enthralled by it; Maureen feels that hair like this should be against the rules for staff in a chemotherapy unit.

Monday, December 17, 2001 at 09:41 AM (CST)

Last Friday, Dec. 14, was Maureen's last day of teaching, at least for the 2001-2002 school year. The wrap up was difficult for her as she is uncertain whether she will ever teach again. She has been a teacher for thirty years; the transition to cancer patient is tough.
Today, she starts her outpatient treatment at the bonemarrow transplant program at UofM hospital. One of todays events will be a meeting with John, Tessa, Ethan, and the hospital social worker to discuss the upcoming transplant. We will update this journal based on that information. In the mean time, see the history section for a description of the proposed treatment.
Maureen's co-workers took her out to dinner on Friday night and she received many thoughtful gifts from staff and students. Saturday, she taught a day-long class at Macalester. Late afternoon, she attended the annual Tasks Unlimited client xmas party, where she received an especially nice gift from her friend Bonnie.
Accustomed to having a lot of hair, Maureen's head gets cold at night. Regular hats and wraps are not comfortable to sleep in, so Bonnie gave her an assortment of light-weight sleeping caps which she had sewn.
Sunday, Maureen attended church, a neighbor's college graduation party, and the xmas "gala" at the historic Ramsey House, featuring a pagent Maureen acted in the past several years. Tessa has taken Maureen's place in the pagent. Afterwards, the family and friends went out to dinner.
Phoebe is still off at college, but will be returning for xmas and will be here for the transplant.

Tuesday, December 11, 2001 at 01:05 PM (CST)

Maureen is feeling pretty well right now. She is still teaching through the end of this week (12/14/1). She is scheduled to begin the outpatient phase of the bonemarrow transplant program next Mon. (12/17/1). This will involve extensive testing and conferencing, but should not interfere with her plans to host the family xmas.
She is scheduled to enter the inpatient on Dec. 26. First, Maureen will receive heavy-duty chemotherapy and radiation designed to eliminate as much of her cancer as possible.
Then, on "day zero," she will receive a blood transfusion containing bone marrow stem-cells from a umbilical cord. These stem-cells are expected to produce healthy new bone marrow.
The next few weeks (i.e., January) are a critical period in that Maureen will be vulnerable to both tissue rejection and infection. But by late January, the new bone marrow should be working.
The umbilical cord transplant is the riskiest of three possible transplants. The safest, where they remove her own marrow and clean it up, won't work because her marrow is too diseased. The second safest is a transplant from a sibling, but Maureen has no biological siblings (her children are not considered a close enough match). In spite of the risks, Maureen's doctors have recommended the transplant because her lymphoma has continued to progress in spite of all the chemo she has had.
The umbilical cord cell transplant has proven effective with young children, a little less so with young adults. It hasn't been tried much on people in their fifties. However, Maureen's doctors feel she is a better risk than most because of her robust general health. The upside is that the transplant has the potential to restore Maureen to full health and the expectation of a long life to come.

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----End of History----