Jackie Sue We Love You

Final Post

2011-12-28T22:52:00.003-06:00

One month ago, on November 30th, 2011 my beloved wife Jackie sucummbed to her illness. She was approximately 5.5 years post transplant. She was 53 years old at the time of her death.

From the time of the previous post until her death she faced a huge number of challenges due to advancing graft-versus-host (GvHD) disease. At the time of her death she was receiving weekly photopheresis treatments at the Mayo Clinic. She had become highly susceptible to pseudomonas infections due to the open wounds from the GvHD. She was hospitalized a number of times for sepsis requiring IV antibiotics.

In the end she died of probable sepsis from an infection, dehydration due to leakage of fluids from her GvHD wounds, and mostly from a lack of energy and will to continue a valiant fight. Not one person in one thousand could have fought the fight she fought. She leaves behind myself, and three children. She will be missed by all those who ever knew her.

It is my great hope that medical advances will soon make this terrible disease a thing of the past. To this end, I wish to thank Dr. Clive Zent of the Mayo Clinic for his faithful service over the past 7 years.

Rest in Peace Jackie Sue Taylor

A Kinder, Gentler Soul Never Walked This Earth.

Signed,

Your loving husband of 32 years

Bruce M. Taylor

Three and one half year update (Day +1281)

2009-10-17T09:13:00.003-05:00

Someone asked why I always list the number of days before and after transplant on the blog. It comes from the Vietnam era when men fighting in battle counted down the days until they could go home. At least that is the way this started. We counted days until the battle began prior to transplant. Now we count up the days from victory.

Jackie is doing reasonably well. I'm happy to report she has conquered the Shingles. Of all the things that took place in this long process Shingles was the most painful. It is not something you would wish on anyone! She still has some minor twinges but it seems to be mostly behind us.

We were at the Mayo a week ago for her monthly visit. While there we met with the usual battery of doctors. She also had her monthly photopheresis treatments (2 days, 2 treatments). These have become almost routine. They seem to be helping the GvHD but it is hard to know for certain.

It seems we have finally settled on a dosage for prednisone. She takes 50 mg on one day and 10 mg on the following day. Anything less than this causes her GvHD to flare. The docs would like to get her to a lower dose but it doesn't seem possible. The high steroid intake is causing her to suffer from osteoporosis. The steroids cause a drop in calcium and a decrease in bone density and an increase in her alkaline phosphatase levels. To counter this she takes vitamin D along with big doses of calcium. That still isn't doing the trick. They believe the GvHD in her gut doesn't allow for effective absorption so they will begin giving her IV calcium ever 3-6 months.

The biggest problems come from the skin cancers. Each month it seems that a new one pops up. All have been on her arms and hands. Each month she requires a biopsy or excision. This month she had two skin punch biopsies on her left arm and an excision of a previous biopsy on her right arm. The excision was about the size of a silver dollar coin. Because the layers of skin on her arms are so damaged from the GvHD it was not possible to close the wound. It simply would not pull together. Therefore, the docs were forced to leave it as an open wound to heal. This lengthens the healing time from days and weeks to months and leaves open the possibility of infection at the wound site.

The good news is that a lot of the sclerodermoid GvHD issues seem to be improving. The skin tightness continues but seems improved. The "plastic" patches have also improved. Perhaps this is due to the photopheresis.

The docs continue to tell us they expect the GvHD to eventually "burn out". There are very few patients in the world who are 5+ years out of mini allo transplant. The best data seems to come from Germany and suggests that after about 5 years the body learns to cope with the new stem cells and GvHD improves.

So, with this in mind....I'm wondering if it is time to begin counting DOWN again!

Until Later....

Bruce & Jackie from Pryor

Three Years and About 3 Months (+1207)

2009-08-02T08:20:00.003-05:00

It has been about 3 months since the last update. I don't do these very often because I doubt anyone reads them any more. But just in case there is someone out there still following I'll continue to update from time-to-time.

Over the past three months Jackie has continued to have a lot of ups and downs. Most of the problems have come from her GvHD. It continues to attack her skin and gut. To combat the problem she takes two-sessions-once-per-month of photopheresis at the Mayo Clinic. This seems to have helped her scleroderma symptoms with minor benefit to her GvHD skin issues. Her skin has become thinner and some of the splotchy patches have improved. It remains to be seen how long she will need to continue these treatments. She continues to have problems with small skin cancers and warts due to her weakened immune system. It seems that each month she needs some type of minor surgery to deal with these problems. It is amazing how fast something as simple as a wart will grow without a healthy immune system to keep it in check. Minor problems can become major problems in as little as one month.

Since the last update she was hospitalized for about one week due to a leakage from her stomach/gut into her bloodstream. This allowed e coli to pass into her bloodstream making her quite ill. Fortunately IV antibiotics put her on the road to recovery within about 24 hours. We were lucky we were able to get her to the doctor at the Mayo in short order. Within minutes of seeing her he diagnosed the problem and had her the antibiotics within the hour. I really think had we waited another 6-8 hours and the outcome might not have been good.

The latest hammer to drop has been a recent problem with shingles (Herpes zoster). About 6 weeks ago she was having an outbreak of GvHD. Without warning she began experiencing excruciating and debilitating pain. Of all the issues she has dealt with the shingles episode has been the most painful! The problem is slowly improving but there is still a lot of pain. It is not something to be taken lightly. The standard pain meds of Oxycontin and Oxycodone have little or no effect on the pain.

There continues to be no sign of the original disease; CLL. Her blood counts continue to be completely normal. Hopefully she will be able to decrease the steroid and anti rejection meds and still keep her GvHD under control. The big goal now is to get her on the smallest possible doses of immunosuppressive agents. The doctors say that over a period of five years GvHD usually improves naturally. At 3+ years post transplant we certainly this to be true. It continues to be a long road and a difficult journey.

Until Later,

Bruce and Jackie

Three Year Anniversary (Easter Sunday +1095)

2009-04-12T14:11:00.004-05:00

Today is Easter Sunday and it has been exactly three years since Jackie Sue's transplant. Three short years ago the doctors at the Mayo Clinic hung a small bag of red cells on a stainless steel pole and our transplant journey began. Jackie's blood counts were at ZERO and her life hung in the balance!

I haven't updated the blog in a long time as I didn't know how many (if any) were still reading about her progress. Somehow I couldn't not update at such an important time and date.

There have been a lot of ups and downs in the last few years. The first year after transplant was probably the best. She was weak but continued to see steady progress. She didn't have any significant GvHD issues and life seemed to be good. She lost 100 pounds through the transplant process and looked and felt like a different person.

Shortly after the first year anniversary she began to have issues with graft-versus-host disease. At first the GvHD was an annoyance. Over time it has become as big a problem as the original disease. As you may have read in previous posts she has experienced severe scleroderma-type effects. Over the last six months these have subsided but she has some damage and scaring from the process. The progression was stopped by high dose steroids (prednisone) and ECP (extra corporal photopheresis) treatments. She is on a 50-10 schedule of prednisone and and a two-treatments-once-per-month ECP schedule.

As part of the GvHD she has experienced skin lesions that are matched by lesions in her stomach and gut. As a result of the GI involvement she has experienced leakage of bacteria into her bloodstream. In the first case it was identified as e coli. In the current instance (just last week) the cause was not identified. Both required hospital stays and IV antibiotics followed by oral antibiotics. Recently we have spent a great deal of time at the Mayo Clinic dealing with these issues. The good news is the ECP treatments seem to be helping. Her skin and stomach lesions have improved and have allowed her to decrease steroid dosages from 50 mg/day to the current 50-10 dosage level. As a result of the steroids she has experienced a significant level of steroid side effects. She has puffiness of face, the classic "buffalo hump" at the top of her spine, and a redistribution of fat from hips and thighs along with weight gain.

In addition she has faced a number of small skin cancer problems. In one case it required a skin graft and Moh's surgery to eliminate a cancer that grew on the top of her hand. She has had a number of small cancers burned off. Each month there is always new biopsy or cancer to be dealt with by her docs at the Mayo. Naturally these open wounds are sources of infection and a constant source of worry for an immunosuppressed patient.

The good news is that she is completely free of the original CLL. There are no hints that it will ever return. In almost all respects her blood counts are entirely normal. A standard CBC never shows anything "out of range". This, of course, is a relief. The docs also tell us that given her level of GvHD it would be highly unlikely to see a relapse.

Finally the docs tell us that GvHD tends to get better with time. The "magic" time period seems to be 5 years. For whatever reason most people tend to improve with time. Their bodies learn to deal with the new, foreign stem cell invaders. In many cases the immunosuppression can be reduced to much lower levels and life becomes more normal. So...I hope to update this blog on the 5 year anniversary and report that things are dramatically improved and the GvHD we deal with is under control.

So, that's it for now. Have a Happy Easter!

Bruce & Jackie

From Pryor

Jackie's Surgery (Day +850)

2008-08-13T19:30:00.002-05:00

We arrived yesterday about noon. We transported the father of the lady who is the marketing manager for the building we stay in to Rochester as well. He lives in Wagoner and came along for the ride so he could visit his daughter.

We went to Jackie's appointment at about noon today. She was scheduled for 12:45 PM and they told us to arrive at least 30 minutes early. In the end it didn't matter as they were an hour late getting her in for surgery. She went in just before 2:00 PM. They finished at about 5:30.

It took two attempts to get the entire skin cancer. This is normal. Many of the people in the waiting room required at least three attempts. The surgeon takes as much tissue as he believes necessary to get the cancer. They then stain slides and have the lab examine them to see if they have a "clean edge". If not, they then take more tissue and re-examine to see the result. In Jackie's case they had to go really deep to get the entire growth. It exposed the tendons but it was not necessary to remove them. Naturally this is very good news. She should not lose any use of her hand. If we had waited another month for the surgery I think the result would have been very different.

Unfortunately the wound was large enough that a skin graft was required. They took the donor skin from her left upper chest. We return in the morning for an exam. We return again on August 25th for further examination and removal of the stitches and a consultation with the surgeon. All-in-all the result was about as good as could be expected.

She is currently asleep. The surgery was conducted under a local anesthetic only but they gave her some type of sedative that made her sleepy.

Sitting in the waiting room (which was VERY busy) it make you a firm believer in suntan lotion! Most (all?) of the people in the room were there as a result of exposure to the sun. I'll certainly use more lotion in the future.

Until Later....

Bruce and Jackie

From Rochester

Rochester in the Summertime (Day +844)

2008-08-07T21:06:00.002-05:00

We arrived back in Rochester this morning. We were supposed to arrive last night, but mechanical difficulties delayed our departure until very early this morning. The weather was great and we overflew Canadian airspace and the Great Lakes on the way over. The new Mayo Clinic Plaza has been finished and they have a lot of street vendors selling and displaying everything from jewelry to homemade pies. It lends a carnival atmosphere to downtown. Summer in Rochester certainly beats winter in Rochester!

This morning Jackie met with Dr. Zent. He is very pleased with her progress. I also learned a very important fact this morning. Jackie does not have Scleroderma! She has chronic graft-versus-host-disease (GvHD). Of course we already knew this, so why the confusion? It seems Scleroderma is the closest disease they can use to describe her situation. They don't really have another name to describe GvHD/Scleroderma. I'm thinking of coming up with with a fancy-sounding Latin name and giving Jackie a spot in history. How about.....Jackiecilius Epidermatosis. Maybe we can abbreviate it to JED ? Latin scholars are probably having heart attacks as they read my new name :) Why is a separate name necessary?

A separate name is needed because there are some serious differences between Jakiecilius and Scleroderma. Scleroderma is a disease that responds poorly to most treatments. As it progresses it often invades heart, lung, esophageal, gastrointestinal, and kidney tissues. While, this is certainly possible with JED, it is far less likely. It is also possible to reverse Jackie's disease by increasing her immunosuppression. So, why don't they do that? Because it is a balancing act. The immunosuppression can also lead to problems. The good news is that chronic GvHD tends to improve over the years. The body learns to live with the new immune system and immunosuppression can be lessened. The primary problem with JED is the potential for skin scarring. Like Sclerodera, it can cause changes to the skin that are irreversible. This is primarily limited to skin thickening and contractures which are limits on joint flexion and tension.

Jackie also had completely normal blood tests. Her hemoglobin was in the mid-12s. Her platelets were 260 (remember when they were 2!). Her lymphocytes were slightly elevated at 3.6 but remain stable from last September. All-in-all the counts are completely unremarkable.

The primary concern at this point is the skin cancer on her hand. She is currently scheduled for surgery in early September. Tomorrow we see the dermatologist. Dr. Zent believes they may want to schedule surgery sooner. The growth has been quite rapid. We will know more tomorrow. The surgery will be a Mohs surgery which is a highly precise surgery conducted using a microscope. The surgery will likely last all day due to the fact they will excise small samples of tissue, stain, and examine under a microscope before making another incision. They will also need to do some reconstructive surgery due to the size. The actual lesion is approximately the size of a quarter and protrudes approximately .25" above the surface. Skin cancers are a common problem after transplants due to the amount of immunosuppression.

That's all for now.

Until later

Bruce and Jackie

From Rochester

Visit to Mayo and Chemo Results (Day +823)

2008-07-15T21:43:00.002-05:00

We returned to the Mayo Clinic about a week ago. While there Jackie had her last infusion of Rituxan. They also performed a biopsy on a spot on her hand. In addition they increased her Cyclosporine and CellCept in order to better get the scleroderma under control. There were discussion as to whether to begin UVA-1 light treatments immediately. A decision was made to wait one month to see if she improves.

I'm happy to report that she has seen some improvement in the scleroderma. Her skin is less "tight" and the opens sores and lesions have subsided. She is still a long way from normal but there are signs of improvement. We have no way of knowing if it is due to the chemo or the increase in immunosuppression. In either case we will gladly take the improvement!

The docs did note an increase in her lymphocyte counts. They felt this was due to reactive T-cells and planned to perform a flow cytometry test to make certain this is the case. Her other blood counts continue to be very normal and still improving.

The results from her hand biopsy confirmed that she has a squamous cell carcinoma. This will be removed during our September Mayo visit.

Jackie is feeling well enough to return to Nantucket. We plan to leave on Thursday of this week and hope to stay until her next visit in early August to the Mayo Clinic.

So, all-in-all things have improved somewhat since the last report. She still requires several pain pills each day to get through the day. The pain seems to be subsiding, however and we hope the pills won't be needed much longer.

Until next time.....

Bruce and Jackie

from Pryor (but not for long!)

More Chemo (Day +791)

2008-06-13T23:45:00.013-05:00

Jackie's scleroderma continues to progress. It is still very painful. Fortunately her local doc is very understanding with regard to her pain meds and she is now getting enough to help make her comfortable.

After consulting with the Mayo docs it was decided to try a course of Rituxamab (Rituxan) chemotherapy. Some of you may recall Jackie received about 10-12 doses of Rituxan to help get her platelets back under control prior to transplant and to help condition her for the transplant. Now we will try to reverse the process; but only partially.

She took her first course of treatment on Thursday of this week. As some of you may recall Rituxan is created using cells from mice. It is often referred to as "mouse juice" around the hospital. As a result of the way it is created it often causes a severe antibody reaction when first administered. It is a peanut allergy type of reaction. This was the case when Jackie received her first treatment. Her blood pressure dropped, heart rate went through the roof, etc. In some cases the people die from shock. It is a very dangerous thing to do the first time. One the body begins to recognize the mouse cells it learns to get along with them and subsequent transfusions are usually a non-event. That was the case with Jackie.

In this case nobody could tell me if the antibodies still existed in her body. Did the stem cell transplant kill them? It should have! She has a completely new immune system. Well....it didn't! The transfusion was a non-event. Not even a blip on the blood pressure gauge. So for anybody who would ever happen to follow us on this crazy journey you now have the answer. Rituxan antibodies survive the transplant.

Jackie will get four transfusions over four weeks. As best I can tell there is one clinical study in existence for this situation. It consisted of three people. All three saw improvement. One person saw minor improvement, one fair improvement, and one dramatic improvement. This was over the course of one year.

The disease has progressed very rapidly. In the course of a few months it has affected most of the skin on her body. Her arms, legs, thighs, back, are all involved. It is beginning to show on her face and scalp. She may also have some organ involvement as she seems to have some nausea. She will have to be "scoped" to see if there is any GI involvement. She is beginning to have problems with stiffening joints and walking. We can only hope the Rituxan begins to reverse the process soon.

Should the Rituxan not work she could try long-wave ECP (extracorporeal photopheresis). ECP would require a 6 week (minimum) stay at the Mayo Clinic as they are only one of 5 sites in the world that can conduct the therapy. We will know much more when we return to the Mayo on July 7th. For more info on regular ECP click HERE

I should take the time to once again remind EVERYONE that Jackie is highly immunosuppressed. The Rituxan will make things much worse in this regard. She is highly susceptible to disease and infection and will have no way to fight this off when the Rituxan kicks in. DO NOT come around if you are sick or if you've been around anyone that has been sick! Do not be offended if I ask to leave our presence, refuse to shake your hand, or give you a hug while this takes place. We simply cannot take any chances while she is so suppressed!

Hopefully the next post will be more positive.

Bruce and Jackie

From Nantucket

Back in ACK (Day +779)

2008-05-31T19:40:00.003-05:00

We are back in Nantucket (ACK, is the airport designator; like DFW or LAX). We flew up yesterday.

We were back at the Mayo about a week ago for Jackie's monthly checkup. Her blood counts are all within normal ranges. There is no sign whatsoever of CLL. That is the good news. As I have done all along I've shared the good news with the bad.

The bad news is that her GvHD continues to progress. It has turned into scleroderma. You can learn more about the disease here. In a nutshell it is a disease with no cure. The disease causes problems with the connective tissues within the skin due to excess collagen production. The skin thickens and feels like plastic. The sweat glands and hair follicles are choked off.

In Jackie's case the change has occurred very rapidly. The process began some months ago as the GvHD attacked her arms first, then her legs. The scleroderma is rapidly advancing and is beginning to attack her upper legs and thighs as well as her back. It is extremely painful. It is limiting her mobility. She has difficulty tying her shoes, walking, and climbing stairs. Wearing clothes is painful. She says it "feels like she is wearing a suit of armor and if she bends her arms or legs they will burst open". There is also a great deal of itching. She slathers herself in various creams and ointments including hydrocortisone cream; all with little or no benefit. She soldiers on but it is not a pleasant time for her. Due to the over prescribing of pain medications the doctors are hesitant to supply here with something to relieve her pain. I'm certain if they had to live one hour in her condition their views would be quite different! On Monday we will contact her doctor and beg for pain meds for relief. Tonight she took another one of the precious few tablets she has left.

The doctors have no idea of what will happen with regard to this problem. There is just too little data. They are not very optimistic about an improvement in the condition. It is possible that Jackie's hybrid immune system will eventually adjust and things will improve or return to a more normal state. It is also possible the scleroderma may progress further; only time will tell. I have to admit this is one possibility that I (we) never considered when we began the transplant. I suppose it beats the alternative of dealing with CLL. Almost certainly Jackie would not be alive today had the stem cell transplant not been performed. Hopefully this is just another bump in a very long road. The doctors tell us that over time GvHD has a tendency to subside and improve. Hopefully this is true of side effects such as scleroderma as well.

I assume that anyone still following this blog will be familiar with PC and Chaya Venkrat's CLLtopics site. Chaya's husband PC has recently undergone a double cord blood stem cell transplant. PC's progress is being blogged as "Harvey's Journal". It will provide some insight into the similarities and differences between a mini-allo transplant (like Jackie's procedure) and PC's double cord blood transplant.

Until Later...

Bruce and Jackie

From ACK

Clink Update (Day +747)

2008-04-29T10:41:00.002-05:00

Jackie was discharged on Monday. We are headed for home today (Tuesday). I can tell she will be "down" on her non-Prednisone days. They have changed her Prednisone dosage to a total of 30 mg every other day. On her "off" days her body will attempt to make natural steroids. At least this is the hope. On the off days we will probably see her GvHD flare as well. They tell us it will be at least a couple of weeks before the CelCept will kick in and begin to make a difference. Until then she will continue with the moist (wet!) pajama wraps. The warmer climate of OK will probably make this a little easier than MN.

Until Later...

Bruce and Jackie

From Rochester (but for only about another 30 minutes!)

Clink Update (Day +745)

2008-04-27T15:03:00.005-05:00

The full-body moisture wraps have dramatically improved the GvHD rash on Jackie's arms and legs. They are still red, itchy, and somewhat inflamed, but they don't burn and cause constant pain. She has gone from a 24 hour per day full wrap schedule to a 3-a-day schedule. The newest routine consists of completely covering herself in hydrocortisone (Triam) cream and then getting into wet cotton pajamas. She then puts on a sweatshirt and sweatpants. She keeps this on for 90 minutes. This routine will continue on a taper-off schedule over the next several weeks while the CelCept begins to kick in.

On our first day here at the Mayo they performed a skin biopsy on her arm. This biopsy turned out to be a small pre-cancerous spot. We are still waiting for the full pathology report to see if it will be left alone or if a small area will need to be burned off. The docs don't seem terribly concerned.

We hope to be sprung from the hospital tomorrow. Since we don't know the exact time we plan to stay overnight on Monday for a departure home on Tuesday. We'll both be glad to a warmer climate. It snowed here on Friday night and during the day on Saturday. While we got only a dusting in Rochester, over a foot of snow fell in northern MN. And these people think it is Spring???

Until Later....

Bruce and Jackie

From Rochester

Back in the Clink

2008-04-25T11:35:00.002-05:00

Jackie is back in the hospital. Nothing serious! Her graft versus host disease (GvHD) gradually became worse. It finally got to the point it was very painful. We flew up for our usual 3 month checkup and the docs felt the best course of action was to get her into a hospital environment to treat the painful skin rash. The rash had gotten to the point of causing blistering. Due to the inflammation Jackie was also running a low-grade fever much of the time.

The good news is that her blood counts are normal in all respects and there is no sign of CLL. This is likely a thing of the past. After two years with no relapse she has a very good statistical chance of being cured of her original disease. Of course the GvHD is no fun and needs to be taken seriously. The docs tell us they see the average patient needing three years of immunosuppression after transplant. They tell us that most patients with chronic GvHD tend to see gradual improvement. We certainly hope this is the case with Jackie. At this point there seems to be no involvement of GvHD with other organs. They performed a pulmonary function test this morning. We don't have results, but I don't think anything of concern will be found.

They are changing Jackie's meds. She will continue with Prednisone at a slightly reduced level. She will alternate days on and days off. One day she will take 30 mg the next day she will take nothing. They hope to get her body to produce more natural steroids. In addition they will be decreasing her Cyclosporine level to 50 mg per day and replacing this immunosuppressant with CellCept. CellCept is newer and far more expensive. They believe it will work better. If this doesn't work there are several other treatments that are possible. It is possible they can treat the GvHD with some of the same chemo agent they used prior to transplant (Rituxan and Pentostatin). They also have a UV light treatment that is only available at the Mayo Clinic (UVA 1B). Finally they have something called Extracorporeal Photochemotherapy (ECP). This involves removing your blood and passing it through an apheresis machine and shinning a UV light on the cells as they pass by. It somehow improves GvHD response. I'll have to research the issue further if this becomes an option to better understand how it works.

In any case, Jackie is doing well. Hot oil baths with full body wrap moisturizing treatments sounds like a spa treatment to me! I asked the nurse when they had scheduled the Asian hot stone message:)

Until Later...

Bruce and Jackie

From The Mayo Clinic

Two Years And A Day (+731)

2008-04-13T19:22:00.002-05:00

Well, it has been two years since the transplant. It seems like it was a thousand years ago. We have had a lot of ups and downs along the way. Initially we dealt with the fear of the disease and then the fear of the treatment and the cure. In the beginning it seems we dealt with nothing but fear. From the beginning I've covered the good as well as the bad parts of the ordeal. That is still the case today.

We still deal with some fear. Jackie is still having problems with GvHD. The fear is that it will become worse. She has progressed from a simple irritating skin rash to Stage II GvHD with painful lesions on her arms and legs. The increase in GvHD has taken place over the preceding six months; most in the past three months. We thought we had escaped any major transplant problems but it seems there are still some challenges before us.

To keep the disease at bay she is on a 20 - 25 mg of Prednisone regimen. One day she takes 25 mg and the next day she takes 20 mg. This is supplemented by a 100 (temporarily 200) mg per day intake of Cyclosporine. Over the last few days we have increased this to 200 mg to try and get the disease further under control. It is too early to say how effective the doubling of the Cyclosporine will be. One year ago she was taking only 5 mg of Prednisone every other day and 50 mg of Cyclosporine. As her new immune system kicks into high gear problems with GvHD pop up. The good news is that even with the compromised immune system she has been able to fight off (rather quickly) several bouts of common colds and a minor case of flu. I'll bet if she gets back to a minimal amount of suppression her new immune system will stomp out any germ or bug that comes along in record time.

Finally she is taking PUVA light treatments. This consists of taking Psoralen which makes the body more receptive to UV long-wave ultraviolet radiation. A pill is taken and then you spend a few minutes in a special tanning booth. The treatment is often used to treat psoriasis. It has been used with some effectiveness against GvHD. It is difficult to tell if the PUVA treatment is helping. Her skin is very raw and seems to be sunburned. All-in-all it is a fairly painful experience. The Cyclosporine causes her feet to be numb and she experiences muscle spasms. The Prednisone has caused weight gain and she is experiencing the "moon" face that is often seen with steroid usage. Through the initial transplant she lost 100 pounds. She has regained about half that weight. All this in spite of the fact she doesn't eat a great deal and gets a lot of exercise. Again, the Prednisone is the culprit.

The doctors tell us the GvHD should improve. They warn it will take a lot of time. They talk about years. We return to the Mayo in about a week. We will see what, if any, changes will be made in the treatment plan.

In spite of the somewhat negative report Jackie has no signs of CLL. I believe it is a thing of the past. In spite of the pain she is living a more or less normal life. She isn't able to do as many things as she would like and she does have a lot of frequent pain that is controlled by use of standard pain medications. She is able to work part time. I know this is a contradiction; living in pain - but living a fairly normal life; but this is the best way I can describe her situation. Post transplant life certainly beats pre transplant life. I remind her the GvHD is also providing GvL effect.

So how normal is life? What can you expect if you decide on the mini BMT? Tonight she is in the kitchen making Cakelettes for an upcoming food show next weekend. That is NOT something she would have been doing 3 months prior to transplant! So...as bad as things sometimes seem it beats the alternative. This is just another bump in a very long road.

Until Later...

Bruce and Jackie

From Pryor

Wednesday, January 23rd 2008 (Day +658)

2008-01-23T19:07:00.000-06:00

We are back at the Mayo Clinic for our 3 month checkup. We left Pryor at 6:00 AM this morning in the Pilatus PC12 and made the trip in 1:56. We had a tiny bit of a tail wind and saw speeds of over 300 mph at times. It sure beats driving 11 hours! The new plane shaves nearly an hour off the Cirrus SR22 trip times. The trip home should be even faster due to stronger north winds. In less than 2 hours we went from 50 degree temperatures to below zero temperatures. Brrrr....it is cold in MN in January!

We are over a month late for our checkup due to the fact that Jackie's mother had some health issues.

Today we met with Dr. Zent and learned the result of Jackie's latest blood tests. Everything is NORMAL! I don't believe she had a single component that was above or below normal. Wow, what a change over 2 years ago at this time. Dr. Zent declared Jackie to be "in complete remission" for her CLL. Of course this is what we expected, but it is a relief to hear the doctor make an official proclamation!

She is experiencing some Stage 1 graft-versus-host-disease (GvHD) on her forearms. This is somewhat painful, but largely annoying. We meet with a dermatologist tomorrow to plot a strategy to see if we can improve her situation. They are considering a pill which will help her skin absorb ultraviolet sunlight. Of course it is necessary not to get too much sunlight due to the possibility of skin cancer.

We've found that her GvHD is greatly helped by the use of aloe vera. She is using the actual plant, splitting the leaves, and rubbing the gel on her skin. It has made quite a difference. Prior the the aloe vera she was using various skin moisturizers with little effect.

Not very many people read this blog anymore - and that is good! It means that Jackie's life is no longer in imminent danger. I know a few pre-transplant CLL patients will read this so I wanted to once again point out how good the Mayo Clinic is with regard to patients. You simply cannot believe how good the medicine here can be. If you are considering a transplant you owe it to yourself to come to Rochester, MN to see for yourself. It is as close to having your own private doctor as you can get!

We will be back in Rochester in April or May for a scheduled checkup. I'm sure the weather will be much improved. With luck I'll be dodging Spring thunderstorms instead of Winter snow showers:)

Sunday, October 14th (Day +557)

2007-10-14T18:43:00.000-05:00

It has been nearly a month since the last report. Jackie continues to do well. She has some minor (compared to CLL) GvHD issues. Her skin has thinned on her hands and feet. She has problems with blistering on her feet due to the thinning. The problem is fairly minor and she deals with it easily by wearing socks and comfortable shoes. She definitely has minor GvHD most of the time. It presents as a rash on her forearms. She has also experienced some GvHD in her esophagus, stomach, and gut. This has resulted in about 3-4 episodes of intense (10 on a scale of 1-10) pain in her stomach that radiates to her back. It is controlled by use of large amounts of liquid antacid and oxycodone. Fortunately it only last for about an hour. Onset is very rapid and relief is also rapid.

After her last visit to the Mayo Clinic here prednisone dosage as changed to 5 mg on one day and 15 mg on the second day. The thinking is that on the "off" day her body will produce some of its own steroids to help battle the minor amount of GvHD. Dr. Zent says recent studies of long-term GvHD patients show that most patients improve over time and that GvHD becomes less of a problem. The process can take years, however.

Now the really good news....during her last visit to the Mayo a flow cytometry test was conducted and CLL is undetected at any level!

Some of you must be asking yourself, "Yeah, but how is her life? With these problems how close is she to a 'normal' life?" I am happy to answer that her life is really pretty normal. Yes, she has some problems but they are very manageable! She has returned to work. She is able to do her housework. She actually LOOKS better than she has in 20 years. Through the process she lost a lot of weight (upwards of 100 pounds). That weight has stayed off. Not because she isn't eating, but because her overall metabolism has changed. This may sound strange, but she received stem cells donated by a 29 year old male. Those cells have changed things that defy logic and should be studied! No, she isn't growing male reproductive organs but there are (in my opinion) certain Fountain of Youth properties that are hard to explain. Prior to transplant she could not keep her weight in check. Now it is not a problem. I will say that the cryptic changes I describe are all good in nature! Something takes place that has yet to be investigated by modern science!

We return to the Mayo in another 2 or 3 months.

Bruce & Jackie

From Pryor, OK

PS. As I write this she is out for a brisk walk and she just finished washing 2 cars. Thank God for those male stem cells:)

Saturday, September 15, 2007 (+527 days)

2007-09-15T12:27:00.001-05:00

Well, it has been a long time since I updated the blog. That is always a good thing!

Just after the last post was submitted we made a return trip to Oklahoma. Jackie was a bit weak due to problems with GvHD. As some of you may recall, I bought an airplane so Jackie no longer had to travel by commercial (can you say Germ Factory) airlines. While stopping for fuel in Coshocton, OH Jackie slipped and fell while trying to board the airplane. She landed on her head. The fall, although not far was very severe and was precipitated by her weak condition. The fall resulted in:

An ambulance trip to the hospital.

An overnight stay in the ICU.

A severe concussion.

A not-so-fun flight back to OK the following day.

More than a month's worth of dizziness!

I am happy to report she is fully recovered. In fact, once she recovered we altered some of her meds and she has done quite well. Her level of Cyclosporine has remained the same at 50 mg/day. Her Prednisone has been increased to 10 mg/day. At one point she was only taking 5 mg every other day and this resulted in an increased level of GvHD.

Given her current dosages she is experiencing almost no GvHD complications. One exception seems to be thinning of her skin (likely due to the steroids on board). This causes problems with blistering on her feet. Other than this issue she is leading what most people would consider a perfectly normal life. She still tires a little easier than prior to transplant and she still has some difficulty in sleeping (again due to the steroids) but all-in-all she is almost back to normal. Last week she completed a 6 mile walk/run. Her only problem was some blisters due to the factors mentioned above.

We return to The Mayo Clinic in 10 days for a routine exam and follow-up. We will remain in OK for the winter. So...all is well for know. Let's hope the trend continues!

Monday, July 9th, 2007 (+454)

2007-07-09T17:56:00.000-05:00

Well, it has been more than a month since I last posted. For those who still read the blog I thought I should probably provide an update.

We are now in Nantucket. We arrived here about a month ago. Since our arrival Jackie has struggled with some graft-versus-host disease (GvHD) issues. As you may recall from my last post she was doing well and the decision was made during our last Mayo Clinic visit to taper her steroid usage to zero. Although during our last visit her steroid usage was not that high, the goal is to reduce all meds to zero. We were able to get Jackie to a 5Mg dose of Prednisone every other day. At this level she began experiencing some of the classic GvHD symptoms. She began to develop rashes on her arms and especially her hands. She also began to experience gastrointestinal difficulties which we believe to be a case of GvHD in her stomach/gut. She also began to experience FUO (fevers of unknown origin). These typically ranged up to 100.8, but below the Mayo Clinic threshold of 101.6 which often spells more serious trouble. For the last week she has not felt well at all.

She has, however, improved a bit after upping her Prednisone dosage from 5Mg every other day to 5Mg daily. This is still a very tiny dosage and is on the order of what he body produces on a daily basis. We are still considering whether to reintroduce her Entrocort meds which are typically used to treat Chrohn's Disease. In the past it was very effective at helping with her gut/stomach GvHD. While at the Mayo Clinic they restarted her Penicillin as well as one of her anti-fungal meds. It is possible the Penicillin has wiped out some of the "good" bacteria that normally lives in the gut.

For anyone else facing GvHD it might be interesting not note a couple of CBC blood tests taken 5 days apart. The first CBC showed an elevated WBC count of 15.7, a RBC count of 3.65, Hemoglobin of 11.4, Platelet count of 284, and a total Lymphocyte count of 43.6. This CBC was taken while she was experiencing FOU and bad rashes. After upping the Prednisone dosage a small amount her counts 5 days later have returned to a more normal WBC count of 9.4 (withing normal range of 4.8-10.8), RBC count of 3.78 (normal above 4.8), Hemoglobin of 11.6 (normal 12-16), Platelets of 264 (normal 150-400), and Lymphocytes count of 34.1 (normal 20-45). The first test showed eight CBC components "out of whack" and the most recent test showed only four components "out of whack" - and only by a small amount. So a slight amount of steroids has helped make a big difference.

So...the process continues. Still some ups and downs, but overall still some very slow improvement with no sign of the original disease reoccurring. We return to the Mayo Clinic at the end of September

Until next time....

Bruce and Jackie
From Nantucket, MA

Wednesday +414 (Evening) Kicked Out!

2007-05-30T18:20:00.000-05:00

Well, it has been almost a month since my last posting. We are back at the Mayo Clinic for a three month checkup. We flew up yesterday in the plane. The trip was 2:21 from wheels up to wheels down. That sure beats and 11+ hour drive! We had a tailwind and our top speed at one point was 274 mph. Most of the trip was above 230 mph.

Jackie had the usual round of appointments today. Bloodwork early this morning followed by a Pentamidine breathing treatment followed by a CT scan and then finally the visits with the doctors. I would like to point out one of the amazing things about the Mayo Clinic at this juncture. Jackie had her CT scan done at about 12 noon. Our first visit with the doctor was at 1:30. They already had the CT scan results back and analyzed upon our arrival. One and one half hours from scan to result in the doctor's hands! In Tulsa (or many other places) this would be a 3-4 day process!

Our first visit was with the transplant team and Dr. Hogan. He felt that she was doing so well it was time to "kick her out of the nest" and move her back to the hematology side of the clinic. We then went to visit with Dr. Clive Zent. Dr. Zent was the first person we met with upon our original arrival at the Mayo Clinic. It seems like years ago, but in reality it has been slightly less than two years. During our chat with Dr. Zent we learned that Jackie was the first "mini-allo" or "reduced intensity" transplant done at the Mayo Clinic. It is still far from common but they do about one per month. Prior to the mini transplants the patients got massive doses of both chemo and full body radiation. A great many died as a result.

Both Dr. Zent and Dr. Hogan are very pleased with Jackie's progress. Both hesitate to call her cured, but they are optimistic that she will not have to deal with full-blown CLL again.

Jackie quit most of her steroid usage about a week ago. She is still taking Cyclosporine, but only in small doses. They will be tapering her completely off her small steroid usage over the next several months. If she is able to tolerate no steroids she will begin to taper the Cyclosporine. They did place her back on penicillin as well as an anti-fungal as prophylaxis against infection. They continue to stress that she avoid being around sick people while her system is immunosuppressed. They also stressed that she should avoid any exposure to the sun. CLL patients are far more likely to develop skin cancer.

All-in-all, a very good report! We report back to the Mayo Clinic in two months. Jackie is already talking about asking the next visit be extended to three months since it has been three months since our last visit.

Until next time.....

Bruce and Jackie
From The Mayo Clinic
Rochester, MN

Thursday +387

2007-05-03T21:31:00.000-05:00

Just a quick note to update the blog for anyone still following Jackie's progress....

Jackie continues to do well. She just passed one of the first true tests of her constitution after the transplant - she caught a cold! She had the sniffles and some chest congestion just like everyone else; and she cleared the cold in about 5 days - like everybody else.

Her blood counts continue to do well. Essentially all the counts are within normal ranges. The few fractional portions of the CBC are only slightly out of range. She continues to reduce medication. She is still taking more steroids than we would like, but they are being slowly tapered. Her appetite has come roaring back. She is hitting the home gym for 1 hour-per-day workouts.

We return to the Mayo Clinic in late May for a checkup. If all is well we will be headed back to Nantucket for the summer. For those who know us and for those who have followed the blog since the beginning you will remember that Jackie first "crashed" 2 years ago while on Nantucket. We haven't been back since. We are certainly looking forward to the return.

Until later....

Bruce and Jackie
From Pryor

One Year Anniversary +365

2007-04-11T22:08:00.000-05:00

Well, one year ago today Jackie received her transplant! It has been a long year for all involved, but a lot of progress has been made. If she makes as much progress in the next year she will be doing great!

Jackie has been doing reasonably well. Her lack of appetite is gone. She now wants to eat everything in the house. I suspect this is due to the steroids she is taking. It seems that she probably has (or had) a small amount of graft-versus-host-disease (GvHD) in her stomach. The steroids have helped alleviate the problem. She is beginning to taper her steroid usage. We will see what happens with the GvHD as this happens.

She continues to have some overall pain and malaise. This is helped a great deal by a daily (small) dose of Oxycodone. She has tried to forego the pain medication, but it certainly helps her get through the day.

All-in-all she is doing well. She is able to do many of her daily house chores and is even spending some time in our home gym on the treadmill and weight machine.

The most recent tests still indicate no indication of CLL! We are scheduled to return to The Mayo Clinic in early July. They are beginning to transition her from Dr. Hogan's transplant department back to Dr. Zent's hematology department.

We/she still worry about infection. As I write this she is running a minor fever. We aren't certain why...It has happened before and nothing happened. In fact, a few weeks ago she was running a low-grade fever for several weeks but nothing materialized. Still, things like this are always a concern.

So...we hope that in another year I will be reporting on the blog that another year has passed and we hope there is even less to report. For those who read this and are facing a potential transplant let this serve as notice the while the process is not easy, it CAN be done and the outcome CAN be good!

Until Later....

Bruce and Jackie
From Pryor

Sunday +342 (Evening)

2007-03-25T22:05:00.000-05:00

Well it has been almost a month since my last post to the blog. Jackie has been doing reasonably well. Her blood counts have returned to near normal. She continues to have some difficulty with her stomach/gut/bowel. The problem creates quite a bit of pain, but her prescribed pain pills do a good job of making things manageable.

We thought she might be facing a reoccurrence of C-Diff but the tests (3 so far, a 4th pending) continue to come back negative. We've seen this before. The tests for C-Diff are not very accurate. It may also be some GvHD in her stomach, etc causing the problem. She is taking a form of steroid that is normally used for Crohn's Disease. It keeps her awake at night and causes large mood swings, but she seems to be getting better. Upon return from our last visit to Rochester she felt "normal" for about a week. I think if she can get this stomach pain worked out she will do quite well. Her appetite has returned to normal - or even above normal. Less than a month ago she was eating nothing and now she is craving everything in sight!

In just a few weeks we will pass the one year anniversary of her transplant. For anyone reading this blog and considering a transplant you must realize it is a very long process.

Until later...

Bruce and Jackie
From Pryor, OK

Thursday +318 (Evening) In Rochester

2007-03-01T20:11:00.000-06:00

Today we met with the doctor to go over Jackie's most recent test results. All results were good. Having performed an examination of both her upper and lower GI tract they can find no discernible traces of graft-versus-host (GvHD) disease. Her endocrinology tests were also normal. Most importantly her flow cytometry tests were fine. This is the test that would indicate the presence of any CLL cells. Her flow cytometry test indicated only a high presence of T-cells. Normally this would indicate an infection or inflammation. There is no indication any infection exists. It IS possible that Jackie has a low level of GvHD that is present in the small intestine that could not be examined by traditional means. Her CT scans also showed improvement in her lungs with a minor decrease in the size of her lymph nodes. This is also a good indication that no CLL cells are present. A FISH (fluorescent in-situ hybridization) test is still pending. This, too, will test for any residual CLL.

So...if Jackie is doing so well why does she feel so bad? The short answer is, "they don't know". It is possible that a minor amount of GvHD exists that is undetected. They are giving her a new steroid that is absorbed locally and is used the treat Crohn's disease. If she some GvHD this should be an effective treatment. They have also changed her pain medication to a longer lasting form - Oxycontin, Rush Limbaugh's drug of choice. Given the fact that no GvHD was detected they are inclined to further taper her anti-rejection drugs in the near future. Her current level is now very low, but the goal is to eliminate them entirely. They've also given her a new, nasty tasting solution that is supposed to help with her appetite. Her total weight loss is now about 100 pounds. She has lost another 10 pounds since our last visit in December and about 2 pounds just this week. I don't think she ever dreamed she would be taking two separate drugs to improve her appetite!

Lastly the doctor mentioned that new data was revealing that transplant patients who had experienced a high level of eosinophils after transplant were found to have higher levels of transplant success and long term survival rates. As you may remember, Jackie experienced a rare form of pneumonia several months ago - eosinophilic pneumonia. Scientists believe that a high level of eosinophils are somehow related to a "good" form of GvHD. They have no idea why a high level translates to a better result, they just know that it does.

We had hoped to head home either late today or tomorrow with our new satchel full of potions, pills, and salves but we now have a raging snow storm and blizzard taking place in MN and IA. The road we take home through Iowa is now closed and we have no idea when it will reopen (I-35). The weather is so bad in northern Iowa that they closed the new Diamond Jo Casino. Now THAT'S bad weather!

Until later....

Bruce and Jackie
From Rochester, MN

Tuesday +316 (Evening) In Rochester

2007-02-27T19:27:00.000-06:00

Well it has been a couple of weeks since I last updated the blog. We are back in Rochester for a routine checkup. We will be here through Thursday and return home on Friday.

Jackie has not felt particularly well for the past several weeks. There is no good reason why she hasn't felt good but we believe she may have some minor graft versus host disease in her stomach and gut. Today she had blood tests and the results were excellent. Her WBC count was 12.8. This is a little high but the doctor doesn't seem too concerned and says that a slightly elevated WBC count is normal after transplant. Of course for a long time her WBC count was below normal and we would have dreamed for a count this high. Jackie's hemoglobin is 11.4. This is slightly low, but still very good. Her platelets are at 232 which is excellent. Her neutrophils are above 2000 (23%), which is also good, but slightly below a normal of around 40%.

Today Jackie received here Pentamadine breathing treatment. This helps protect her from pneumonia.

The doctor has decided to perform a couple of tests to see if we can determine Jackie's lack of energy and lack of appetite. They will perform a series of CT imaging test tomorrow of her stomach and gut. They will also "scope" both ends to test for GvHD. This should give the doctors a definitive answer about GvHD. If no GvHD is found they will continue to taper her anti-rejection medications. They will also conduct a flow cytometry test of her peripheral blood to once again check for any traces of CLL. They don't expect to find anything, but her elevated WBC count gives them cause to perform the test. They will also perform an endocrinology test to make certain she is producing the levels of hormones necessary. We will meet with the doctor on Thursday afternoon to obtain test results.

So, all-in-all it should be a boring week in Rochester. They had a snow storm over the weekend and Rochester was left with a dusting of snow (15 inches). They expect another blizzard beginning tomorrow afternoon/night. It should make driving back on Friday fun!

Until Later,

Bruce and Jackie
From Rochester

Thursday +290 (Morning)

2007-02-01T11:44:00.000-06:00

It has been a few weeks since I last updated the blog. I suppose that is a good thing. That means there has been no significant news to report!

Jackie has been doing better. She continues to have issues with morning pain and requires a daily pain pill to get started. She has had some minor rashes so we feel she is having some minor GvHD issues. She continues to struggle with her diet. Her weight seems to have stabilized but she isn't gaining any weight. Once she takes her pain pill she does reasonably well for the remainder of the day. Her energy level is still low, but she is able to perform light housework.

Her most recent blood counts continue to improve. Her WBC count has risen to 9.2 with a neutrophil level of 3.1. The neutrophil level is still a little low given the higher white blood cell count. Her lymphocytes are normal at 5.1. Her RBC count is a little low at only 3.89 (normal 4.2-5.4). Her hemoglobin is still a little low at 11.8 (normal 12-16). Platlets are once again normal at 137.

So as we continue to approach the 1 year anniversary of the transplant Jackie continues to slowly improve. We return to the Mayo Clinic at the end of this month for follow up. Assuming the weather is good I will be flying and the trip will be about 2.5 hours versus the drive of about 11!

Until Later...

Bruce and Jackie
From Pryor

Thursday +283 (Evening)

2007-01-18T19:51:00.000-06:00

A quick note to update the blog. The past week has been horrible in Oklahoma. For those that might not be aware, we had a major ice storm. Pryor experienced more than 2 inches of ice accumulation. While ice storms are somewhat common, we've never seen one this bad. Every house in town experienced downed tree limbs. Most homes have been without power for one week. We are lucky in that our house is the first house to be fed by the city's power system. We only lost power for about 24 hours. We still have tens-of-thousands of people without power. Even people with generators were without luck due to the fact that the gas stations had no power and gasoline could not be pumped. Surprising as it might seem, the roads improved rather quickly. I've been to Tulsa nearly everyday since the storm. The forecast for this weekend is calling for 2-10 inches of snow. Oh joy!

Today Jackie had her weekly CBC blood test. The results continue to improve. Given her improving counts she should feel better but she really doesn't. She continues to have severe bone pain at various times of the day. A pain pill gets her through the rough spots but they seem to occur everyday at slightly different times. She also has a general lack of energy. The medications may cause some or all of these symptoms.

Many of her blood counts are now within normal ranges. For those counts outside normal ranges the variation is not great. Her WBC count is 7.6. This is dead middle of "normal". Her neutrophils have improved to 2.4 which is 31.4% of the total WBC count. This is slightly below the low level of a normal 40%. Her lymphocyte percentage is 60.5% which is above the high end of a normal 48% (total lymphocytes are 4.6). This improved from a too-high 70.5% last week. Jackie's RBC count is 3.96 which is a bit low of a normal 4.2-5.4. Her hemoglobin (Hgl/Hgb) is now a normal 12.2. This is her "energy meter" and normal ranges for her age and sex are (12-16). Her platelets continue to decline. They are still within near normal ranges, however. Current platelet count is 129. Normal range is 130-400. Platelets have been as high as 240+ within the last 4-6 weeks.

Jackie continues to run a minor fever. Over the last few days it has spiked up a little. It was at 100 degrees yesterday. Since fever is a good indication of infections or problems we hope this isn't something new. Her temperature hasn't been normal since her last bout with C-Diff. Her normal temperature is about 1 degree below normal; or about 97.6. This isn't new. She has always indicated a lower-than-normal body temperature.

Well that is all the news that is fit to report for now. The days are getting longer and Spring cannot be far away. Well....at least that is what we tell ourselves.

Until Later....

Bruce and Jackie
From Pryor

Wednesday +275 (Evening)

2007-01-10T18:06:00.000-06:00

Just a quick note to let everyone know that Jackie is slowly improving. She is still having bouts of pain, but it isn't as severe. She is still having problems eating, but it is better. She continues to lose weight. She still has a significant lack of energy, but it seems better. On a scale of 1-10 in terms of well-being she is at about a 5.

She had her weekly blood word completed yesterday. Her counts continue to improve. Her WBC count was 7.6 up from 5.2 last week. This is within normal ranges. Her neutrophils are still low at 1.1, but up from 1.0 last week. Lymphocytes are still a bit high at 5.9. Her RBC (HGL-hemoglobin) is still a bit low at 3.57 and 11.3 respectively. Normal ranges are 4.2 to 5.4 and 12.0-16.0 respectively. Her platelets have declined from last week's 163 to 145. Normal ranges are 130-400 so she is within normal ranges.

We see no clear reason for her problems, but GvHD is a likely candidate. Her C-Diff seems to have completely resolved so that doesn't seem to be the cause. If she is experiencing some GvHD it doesn't seem that it will be too severe. She has been able to reduce her anti-rejection medication to a small amount. Her Prednisone intake is also very low. If GvHD is the answer, these medications can be adjusted to help ease the symptoms.

Until Later....

Bruce and Jackie
From Pryor

Wednesday +268 (Evening)

2007-01-03T20:40:00.000-06:00

I hope everyone had a great Christmas, a happy holidays, and a good New Year.

Jackie has improved some over the last week. She is still dealing with a lot of nausea and some bone pain. It has certainly lessened during the last week but it is far from resolved. In spite of fairly good blood counts her energy level continues to be very low.

Jackie had a CBC yesterday and the results were fairly good. Her RBC (Hgl) level had improved to 11.0. Her WBC count continues to do well at 5.2. Her neutrophils are a bit low at 1.0 (1000). In the past these were much higher. They have also been much lower. At the .5 (500) level she will receive a growth factor shot. The usually produce a significant amount of bone pain and are she does not look forward to them. Her platelets have dropped a bit to 163. This is still within normal ranges but down from a record high in the 200s a couple of weeks ago. Jackie's lymphocytes continue to be high at 3.7 (70.5%). Normal is 19-48.

She continues to run a low-grade fever. It ranges from 99-100.5 degrees. Her normal baseline temperature is about 97.6. Of course the reason for the fever is unknown. It would seem there is still some distress or infection that is leading to the elevated temperature. We can only hope that the problem will eventually fix itself.

Jackie continues with the Vancomycin taper. I think part of her nausea is as a result of this drug. She should also begin to taper her Cyclosporine within the next couple of weeks. Her Prednisone is already at a very low level and will probably be tapered to zero soon.

So...the good news is that she is improved from a week ago. She still has a long way to go but with luck each day will slowly get better.

Until Later....

Bruce and Jackie
From Pryor

Wednesday +261 (Evening)

2006-12-27T23:00:00.000-06:00

As posted earlier, we were released on Friday at about 5:00 PM. We were packed and on the road by 6:15 PM for an all night drive to Pryor. The weather was rain, drizzle and fog with a temperature of about 32 degrees until we reached the middle of Iowa. In Iowa the weather began to improve and we had clear sailing once past Kansas City. We arrived home at 4:00 AM. For those that don't already know I bought a plane to shorten this, now regular, commute. I will have it by the end of February. It is a Cirrus SR22-GTS. It will shorten the 10-11 hour commute to 2.5 hours.

Jackie has had some serious ups and downs since our return home. Even a house full of kids did little to help her at times. Today was a real struggle. She continues to have severe nausea and bone pain at times. She also continues to run a low-grade fever. Of course we have no idea why the fever still occurs. Today she had "10 of 10" bone pain and was not able to get off the bed/sofa until late afternoon. The pain pills are addictive and she is very hesitant to take them but at a certain point there is really no choice. The good news is that the pain meds are very effective. We continue to hope that whatever is causing the problem will eventually resolve. Of course this could still be related to the C-Diff problem but as time passes we must begin to consider other alternatives.

Until Later....

Bruce and Jackie
From Pryor

Friday +256 (Flash Update)

2006-12-22T17:24:00.000-06:00

Well, they released Jackie. We will be leaving immediately to come home. We expect to arrive about 4:00 AM Saturday. No early phone calls PLEASE!

Until Later...

Bruce and Jackie
From Rochester, MN

Thursday +255 (Evening)

2006-12-21T18:01:00.000-06:00

Just a quick note to say that Jackie felt good for much of the day. Her energy level is still low. We received the results of her blood tests this morning and her hemoglobin is even lower than yesterday. This explains her lack of energy. Her Hgl today was only 9.4. This is down from yesterday's 10.5 and 12.5 when we arrived. Her white blood cell count is still very good at 7.4 which is down from yesterday's 9.3 and the 25.1 when we arrived. Her neutrophils continue to be good at 5.07. Her platelets dropped from a record level of 243 to 199.

Jackie's temperature was normal or near normal for the entire day. If it stays low the possibility exists we could still be released tomorrow for a drive home on Friday night/Saturday morning.

The weather here turned out to be a non-event so far. Much to the consternation of the local folks there has been no snow - yet.

Until Later...

Bruce and Jackie
From Rochester, MN

Thursday +255 (Morning)

2006-12-21T11:06:00.000-06:00

Just a quick note to let everyone know we will not be leaving today. It seems we will be here in Rochester for Xmas. Jackie's blood counts continue to improve. Her hemoglobin is low at 10.5. This is contributing to her lack of energy. Also the fact that her Prednisone dosage was reduced is another reason she doesn't have much energy. Her WBC count is very good at 9.1 and her platelets have skyrocketed to a new all-time high of 243. Her sodium level had risen to a near normal 133. So...she should be feeling fine; but of course she isn't.

Last night she spiked a temperature of 102. It remained at around 100 for most of the night and rose to 101 this morning. Her stomach has been "growling" at an unbelievable rate through most of this ordeal but it has recently settled down and seems more normal. Her appetite is still nearly non-existant, however.

So...we will continue to hang around Rochester until her fevers have subsided. We are supposed to get some snow and ice tonight so maybe WE will have a white Christmas.

Until Later...

Bruce and Jackie
From Rochester, MN

Wednesday +254 Early (Evening)

2006-12-20T16:33:00.000-06:00

It is beginning to look like we won't be back for Christmas. Although Jackie is feeling a little better, she still has a high-grade fever at times. As I write this she has a fever of 102. This probably means she has an active infection somewhere and her body continues to try to fight it off. Of course we have no idea where the infection might be. Her stomach/gut/bowel is a likely area. My guess is that they will want to keep her until next week to see if the fever subsides on its own. If not, they will do a colonoscopy. So it is looking like it will be Christmas in Rochester - and it will be a white Christmas!

Until Later...

Bruce and Jackie
From Rochester, MN

Tuesday +253 (Evening) Still in Rochester

2006-12-19T21:26:00.000-06:00

Well, we aren't headed home. Last night Jackie ran a fever of 102. This morning she still had a fever of 101.5. Today she ran a low-grade fever, but nothing high. As I write she has a fever of 100 degrees.

We spent the entire afternoon meeting with the doctors and they felt it would be best if Jackie stayed in Rochester for a few more days to see if her fever subsides.

She continues to do better and is eating a little better (but not a lot). They believe her fever is still related to the C-Diff. There is no other reason to believe there is any other problem. All of her tests continue to come back negative. The docs can tell us with near certainty all the things she DOESN'T have, they just can't tell us what she DOES have. For example, they know she did not contract Gardia by drinking unfiltered water from mountain streams or E. Coli from Taco Bell.

On Wednesday they will do another series of blood tests. On Thursday they will do a series of tests blood tests and a general exam. If the fevers have subsided we will probably be cleared to come home for Christmas. If not, we will see the doctor on Friday and they will want to schedule a colonoscopy to see if there is something else going on. The possibility exists she could still have CMV or GvHD in her stomach/gut/bowel. The peripheral blood tests for CMV are negative but it sometimes happens that the blood tests are negative yet CMV still exists. Of course GvHD is also a possibility.

They've asked that we go to the hospital if her temperature rises above 101.3 for blood cultures. It seems that the best time to get a culture is when the body's temperature is on the rise.

I suppose the good news is that the infectious disease doctor said that in BMT transplant patients fevers of unknown origin are fairly common and they often fail to find a reason for the elevated temperature.

So we may be cleared to come home on Thursday, just in time for the snowstorm that is due to develop on Wednesday and Thursday. Otherwise it looks like it will be Xmas in Rochester.

Until Later...

Bruce and Jackie
From Rochester, MN

Monday +252 (Evening)

2006-12-18T18:50:00.000-06:00

Once again we spent the entire morning at the hospital. She had more blood work and cultures drawn. Jackie continues to make small amounts of improvement. Her stomach is better today. She is still having some pain in the stomach and gut, but it isn't as bad. She also continues to have pain in her lower back and hips. This is the bone pain she had dealt with for the past month. She ended up spending most of the day in bed. That is where she has been for the last week - in bed.

Jackie's blood counts continue to be good. Her hemoglobin (Hgl) is down a little to 10.3. A few days ago it was at 12.3. It is probably down a little due to the large amounts of blood that is being drawn for tests and because she has been receiving fluids. Still her energy level is clearly down and this is the likely reason. Her WBC count continues to be very good at 7.1 and has come down from the much higher levels of a week ago. This indicates the antibiotics are working on the C-Diff. Her platelets remain excellent at 208. Her sodium level is still 129, but I continue to salt everything she eats (much to her displeasure) and this should be normal again before long.

Today she said she felt like eating Mexican food so we went to one of the local TexMex restaurants. She was able to eat about 1/4 of a burrito. Not much, but still progress. This evening she said she felt like eating some California sushi-type rolls. So I began a search for sushi in Rochester. As you might imagine, sushi is not a big food item in the cornfields of MN. I finally located some at a Super Target store and she consumed a few for supper. My stock tip of the month: Buy TGT stock! Last night I went to Best Buy to purchase some software. They had a line a mile long to check out with only half the check registers open and employees standing around gabbing. I left the store and went across the street to the Super Target and bought my software with no wait whatsoever. They had 36 registers up and running. Today I found sushi there.

Tomorrow we find out if we will be released to come home. We won't know until about 5:00 or 6:00. I believe they will send us packing, however. They want as few souls around during the holidays as possible. My plan for returning home if we are released is to leave very early in the morning on Wednesday (about 3:00 AM). This will put me back in Pryor by 2:00 and ahead of the snow storm.

Until Later....

Bruce and Jackie
From Rochester, MN

Sunday +251 (Evening)

2006-12-17T20:33:00.000-06:00

Once again, we spent the entire morning at the hospital. They ran more blood tests, took more samples, and concluded she should be healthy. Of course that isn't the case. She is still having bone pain and stomach pain. It is much better than a week ago, but far from OK. She is eating better, but not a lot. Tonight she said she was hungry which is a first in more than a week. Her mental state and balance are back to normal. Her sodium level is at 129; up from 123 (in the hospital at 120). Normal is 135-145.

Of most concern (at least to me) is the fact that she continues to run a fever much of the time. Most of the time it is low-grade (below 101.3), but last night it was at 102. Something must be causing this that hasn't been found. It could be the C-Diff, but I think there must be something else.

Jackie is really upset at the possibility of not being able to come home for XMAS. We will be back in the hospital tomorrow and our last doctor's appointment is at 5:00 PM on Tuesday. A big snow storm is headed for IA and MO on Wednesday. They are talking about blizzard conditions. If Jackie is released, I may end up driving all night on Tuesday in order to miss the snow storm. Of course this assumes the snow doesn't move in early.

With some luck the next two days will bring no new surprises and we will be home soon.

Until Later....

Bruce and Jackie
From Rochester,MN

Saturday +250 (Saturday Afternoon)

2006-12-16T13:38:00.000-06:00

We've been at the hospital since 9:30 AM. It is now about 1:45 PM. They've done an abdominal X-ray as well as blood work. We are awaiting the results of both. Jackie has had some major pain today. Her back and stomach are really giving her lots of problems. Because they don't wish to slow down her digestive system they will not give her any of the usual pain medications. She can only have Tylenol.

Last night her stomach was so upset that her stomach rumblings actually woke me up. I would not have believed it possible for the digestive process to be so loud. This morning she had a severely distended stomach. In spite of all this she was literally able to choke down about 3/4 cup of oatmeal. At about 11:00 AM she was able to drink about 2 cups of soup broth. She is feeling a little better, but not much.

The good news is that her C-Diff tests are now registering as negative. HOPEFULLY this will allow her stomach and gut to heal from the toxins produced by the C-Diff and begin to heal and her general health will improve. The other good news is that her mental state has returned to normal. She is still a little unsteady on her feet, but it isn't too bad. She is also mentally much more aware. It seems these problems stemmed from the fact that she had an electrolyte imbalance.

Hopefully she is on the mend once again.

Until Later...

Bruce and Jackie
From Rochester, MN

Friday +249 (Evening)

2006-12-15T17:39:00.000-06:00

Today was a long day. We began at about 7:00 AM and had hospital or doctor visits for most of the day. They conducted more blood tests, they performed another head CT scan, and she received a unit of fluids and another unit of sodium. They switched her C-Diff treatment from Flagyl to Vancomycin to eliminate the possibility that the Flagyl was causing her altered mental state.

So here is what we know...It seems she has an electrolyte imbalance. Her sodium is low. This is called hyponatremia. A normal level for her would be about 135. When we arrived here here level was 127. Today her level was 123. At 120 you get admitted to the hospital. Why is her sodium level low? Fortunately this is an easy answer. She has not been eating anything for more than a week. She has, however, been given IV fluids and has (on her own) consumed large quantities of water. This causes her to have an imbalance between her "free water" and the sodium in her body. The cure? Naturally to not drink as much water and to eat regular foods. Once the C-Diff gets under control this shouldn't be an issue.

Jackie felt really bad for most of the day. The IV fluid made her feel a bit better this morning but as the day went along she worsened. By late afternoon she needed a pain pill. I'm not certain if it was the pain pill or the IV sodium she received but she seems to be improved this evening. Her cognitive functions seem to be improved and she managed to eat some solid food (that I cooked - now THAT'S amazing) this evening.

We report to the hospital for checkup on both Saturday and Sunday. On Monday we meet with some of the doctors to plot the next course of action. If she hasn't improved over the weekend they will likely want to do both a spinal tap and a colonoscopy. If she has improved we will meet with the transplant doctor for a final visit on late Tuesday. If she is doing well she will be able to come home. If not....well it could be Christmas in Rochester.

I really think she is making small amounts of progress. Her white cell count seems to be responding to the new antibiotics and after talking to the infectious disease doctor today I found that even a single dose of Bactrim, which is a strong antibiotic can cause patients with C-Diff to relapse. Jackie normally takes a breathing treatment (Pentamidine) once per month to guard against lung infections and problems. Since we had not been here at the Mayo Clinic in over a month she could not get the treatment. We checked about doing the treatment in Tulsa but when asked the doctors in Tulsa basically said, "What's Pentamidine and why would you do that?" So Jackie called the Mayo and they put her on a prophylactic dose of Bactrim. This happened about 4 or 5 days before she got really sick. It is MY opinion that she already had C-Diff and her body was producing white cells and neutrophils at a prodigious rate that caused her to have the extreme bone pain of a few weeks ago. She was probably doing a fair job of battling the C-Diff and then.... she took the Bactrim and the C-Diff really flourished and her system was overwhelmed. So now she is off all antibiotics (except Vancomycin to treat the C-Diff) and she took a Pentamidine treatment yesterday. They will taper her Vancomycin over about a 6 week period. They've found this is more effective in treating patients with C-Diff relapse. They also have some other treatments as well. Once of these involves implanting donor fecal material into the recipient's gut in order to repopulate the growth of gut flora. Jackie is SURE hoping the Vancomycin works:) This is a transplant nobody could would want!

Until Later...

Bruce and Jackie
From Rochester, MN

Friday +249 (Noon)

2006-12-15T11:51:00.000-06:00

Just a quick update...

I forgot to post anything to the blog last night and we've been at the hospital since 7:00 AM today. Jackie required another unit of fluids this morning. She is still not feeling well at all. In fact, she now has an altered mental state and some substantial dizziness. She is tired and sleepy. They are going to do more CTs and MRIs of her head today. If things don't improve they will do a spinal tap next week to check for any viral infection. They are also checking for thyroid levels. We are definitely here until next week.

The good news is that her counts are VERY good. In fact, they are near perfect. Her platelets are at 280, her Hgl is at 12.1, her WBC count is above 8.0 with excellent neutrophil counts. She SHOULD be feeling better! She continues to run a low-grade fever, but hopefully this is as a result of the C-Diff. We will be meeting with the infectious disease doctor in a few minutes.

The other good news is that her bone marrow tests show no indicatons of CLL at all! In fact, it looks perfectly normal. It showed an elevated level of white blood cells, but this is expected given the fact she has an infection/fever. They still have one test that is not available, but they expect no surprises.

Until Later...

Bruce and Jackie
From Rochester, MN

Wednesday +247 (Evening)

2006-12-13T18:13:00.000-06:00

Jackie didn't see much improvement today. She continues to have a lot of gastrointestinal distress. She is eating almost nothing (maybe 3-400 calories per day). She did seem a little less nauseated today. However she was dizzy and disoriented at times. We have no idea why. The dizziness might have been due to the fact that she used a Scopolamine patch for nausea. The doctor had her remove it as soon as he found out she had used one. Scopolamine is typically used for motion/sea sickness and she used the transdermal patch without anyone knowing she had done so.

We met with the doctor today. He also feels that much of her current distress stems from the C-Diff flare. For this reason he decided to temporarily discontinue all antibiotics other than the Flagyl that is being used to fight the C-Diff. They will also give her a longer course of Flagyl to try and completely clear the bacteria.

The results of the bone marrow biopsy were not available today. We will meet with the doctor again on Friday to obtain the results. Her CT scans (head and abdomen) were good and she showed improvement in her lungs from the pneumonia of several months ago. Her chest X-ray was also OK.

So...hopefully the Flagyl will kick in and take care of the C-Diff problem. I think by tomorrow we may see some improvement. With some luck we might be home as early as Saturday.

Until Later....

Bruce and Jackie
From Rochester, MN

Tuesday +246 (Evening)

2006-12-12T17:37:00.000-06:00

Today saw very little improvement in Jackie's condition. In fact this morning she was worse than yesterday. She was severely dehydrated. Last night she had a fever of almost 103.

She was scheduled for a bone marrow biopsy early this morning. When we arrived her heart rate and blood pressure were high and they immediately began giving her IV fluids. They gave her a liter before the procedure and another liter after. She had a bilateral bone marrow biopsy which resulted in two holes being poked in her hips instead of the usual one.

After receiving the fluids she felt better and her blood pressure and heart rate returned to normal. She is still finding it impossible to eat anything. Due to the C-Diff her stomach is very upset and anything she eats or drinks causes instant pain and nausea. It is as bad as after the transplant. Don't bother sending suggestions for foods she might be able to eat. I've heard them all. I went to the grocery store and bought all the usual candidates for eating while dealing with upset stomach. When she gets like this there isn't much that can be done until the meds take effect and begin to get the C-Diff under control. It usually takes 3-4 days. I'm hoping by tomorrow she will begin to get some relief. This evening I THINK I can detect some minor improvement.

We meet with the transplant doctor (Dr. Hogan) tomorrow afternoon. He should have some preliminary results from the bone marrow biopsy as well as results from the CT scans. I think if there were anything significant on the CT scans we would have received a call from one of the PA/RN transplant coordinators.

Technical: For all the CLL patients who are reading this blog there are some clues here that might be helpful as you go through a transplant. It is an after-the-fact analysis of what we did wrong with regard to the current C-Diff episode.

We missed the fact that Jackie had another bout of C-Diff. Although she had dealt with the problem several times before, we (and the docs) should have suspected C-Diff. We thought she was having some gastric distress due to GvHD in the stomach and gut. I don't believe this was ever the case. Initial tests from stool samples were negative for C-Diff. This in spite of the fact that there were clear signs of an active C-Diff flare. As it turns out there are a couple of different assay tests for C-Diff; some less accurate than others. It is also possible the diagnosis was missed due to the fact that the sample was not "fresh". Samples were FedEx'd to Rochester from Tulsa.

This event happened as she moved to a once-a-day dose of 25 mg of Cyclosporine. As I mentioned we suspected GvHD. We increased her Cyclosporine and Prednisone dosage to the prior level (50 mg/day and 10 mg/day respectively). This was probably a mistake. The goal is to get to a level of zero on all dosages and get her immune system ready to deal with minor problems without the need for antibiotic, antifungal, etc. prophylaxis. It is the antibiotic prophylaxis that causes the gut to not be able to repel the C-Diff invasion. If she can get to a level of stasis the normal gut flora should be able to crowd out C-Diff that causes the problem. So the lesson is that sometimes the simple answer is the correct answer (Occam's Razor). The good news through all this is that it appear that her immune system has managed to mount a robust defense to the perceived threat from the C-Diff flare-up. Her latest CBC showed a slightly lower level of WBCs and a lower ANC with good counts for RBC and Hgl with stable platelets.

Until Later...

Bruce and Jackie
From Rochester, MN

Monday +245 (Evening) From Rochester

2006-12-11T17:54:00.000-06:00

Jackie was miserable today. On a scale of 1 to 10 she was about a 3 today. She continued to have nausea and abdominal distress. Of course all this and she was forced to: A. Give blood for a CBC; B. Do a head CT scan; C. Do a full body CT scan. So it wasn't her best day. The good news is that we know part of the reason she is feeling bad. She is again positive for C-Diff (Clostridium Difficile...want to know more? http://www.cdiffsupport.com/aboutcdiff.html). This is likely the cause of much of her gastrointestinal difficulty. It could also explain the fever, certainly the nausea, and possibly the high WBC count.

Today her fever ran to almost 103 at times. Due to the fact that her WBC count and ANC level is very high the docs elected to let her immune system fight off whatever bugs might be causing the fever/possible infection. At least to me this seems like a good sign they feel her system is finally developing to the point where it can handle routine problems without help from IV antibiotics, pills, and various and sundry other noxious potions and incantations!

Tomorrow morning she will have a bone marrow biopsy. She has had several of these before and they can be somewhat painful after the event. So...I until the effects of the biopsy and the C-Diff meds kick in I think she will continue to feel lousy. I think by the end of the week she will begin to show good progress, however.

Until Later....

Bruce and Jackie
From Rochester, MN

Sunday +244 (Evening) Back in Rochester

2006-12-10T17:09:00.000-06:00

Well....we are back in sunny Rochester. Actually the only snow we saw was in OK and KS on the way up. There is no snow here in Rochester; although the Zumbo River that runs through Rochester is frozen solid.

Over the last 10 days or so Jackie has been running a low-grade fever. It has ranged upwards to about 100 degrees. She has also had some nausea and stomach cramps. The most troubling problem has been very intense bone pain. The bone pain has been quite severe and required the use of some very strong pain medications.

Yesterday (Saturday the 9th) Jackie spike a fever of over 102 degrees. The official Mayo cutoff for ignoring a fever is 101.3. Jackie phoned the good folks at Mayo and they suggested she get a CBC and chest X-ray locally. We called the Radiology Department in Pryor and nobody answered the phone. In Tulsa the zoo they call the ER would have been a multi-hour wait to get a CBC and X-ray so we hopped in the car and made the 10.5 hour drive to MN. We arrived about 11:00 PM. We walked into the hospital where the nurses said, "We've been expecting you!" They had blood drawn within 20 minutes of arrival. We met with her doctor this morning and she had a chest X-ray after our meeting.

Jackie's white blood cell counts have gone from 3400 about 10 days ago with a neutrophil count of 1900 to over 25,000 with neutrophils of over 20,000 today. This doctors have no idea why this has happened. It could be the result of an infection, etc. They feel there is no reason to believe it is a reactivation of her CLL. However they plan on performing a CT scan and bone marrow biopsy to make certain that her lymph nodes and marrow are acting normally.

The rest of Jackie's counts are doing great! Her hemoglobin is 12.3 so her energy level is good. Her platelets are 217.

So, as always when in Rochester I will be updating the blog much more frequently (probably one a day or whenever the information changes).

Bruce and Jackie
From Rochester

Wednesday +240 (Evening)

2006-12-06T19:41:00.000-06:00

Jackie has not felt well for the past week. She has been plagued by some severe bone/muscle pain as well as nausea and stomach cramps. She has not run any fevers over the last week. Her fever of a week ago was likely due to the fact that she was once again neutropenic.

On Monday of this week she received another blood test. It was the best test in several years. Almost all of her counts were in the completely normal range! Her hemoglobin was in the low 12s. Her WBC count was 4.8 with a high neutrophil count. Her platelets were 208. The few blood components that were abnormal were only abnormal by a small amount.

For this reason it makes it strange that she doesn't feel well. She had another CMV test which was negative. It is my belief that she is experiencing some GvHD problems. Her Cycolsporine anti-rejection medication had been reduced to only 25 mg per day. Her Prednisone dosage had also been reduced to a very low level.

After consulting with the good folks at the Mayo Clinic the decision was made to increase her Prednisone dosage by a small amount. I think it may also be necessary to increase the anti-rejection meds slightly and then begin a slower tapering procedure. If her condition fails to improve we may need to make a trip to Rochester.

Until later...

Bruce and Jackie
From Pryor

Wednesday +233 (Evening)

2006-11-29T20:20:00.000-06:00

Just a quick note to say that Jackie has been doing reasonably well, however she has been running a low-grade fever for the last 24 hours. She began experiencing some bone and muscle pain and just a general feeling of malaise. Today she went for a CBC blood test and we found that her ANC (neutrophils) were once again almost non-existant. They were at .1 (100). Anything below .5 (500) is considered neutropenic and subjects her to a higher risk for colds, infections, etc. and could easily be the reason for her low-grade fever. Her normal counts were actually quite good. Her RBC count was 11.6. Her total WBC count was 4.6 and her platelets were 180. These all show good improvement.

She has decreased her Cyclosporine level to only 25mg per day. This is the final step prior to being completely removed from her immunosuppresson regimen. She is experiencing some minor nausea and gastrointestinal discomfort. This could be due to a minor flare of GvHD. If it doesn't get any worse then there should be no problems.

In order to increase her neutrophil level she was given a shot of growth factor. They will conduct another CBC on Friday and if the ANC is still low she will receive another shot.

Until later,

Bruce and Jackie
From Pryor (expecting 5-9 inches of snow tomorrow)

Thursday +220 (Morning)

2006-11-16T11:23:00.000-06:00

Just a quick note to update Jackie's CBC counts. Her tests today show improvement in most areas. Her WBC count has increased to 3.0 with an ANC level of .9 (900). This means she is no longer neutropenic. Her RBC (Hgl) count has improved to 11.7 which accounts for her increase in energy. Her platelets have declined to 131 which is on the low end of normal but not bad.

For anyone reading this who is dealing with CLL (or any cancer) is strongly recommend the latest article written by Chaya Venkat at www.clltopics.org about T cells and Tregs. This is a new and very promising area of cancer research. I also urge everyone to support the CLLtopics organization with a donation. I made my second donation to them today.

Until Later....

Bruce and Jackie
From Pryor

Wednesday +219 (Morning)

2006-11-15T09:49:00.000-06:00

Just a quick update. Last week Jackie received the results of her latest blood work. Her WBC and ANC levels had improved slightly. She is still neutropenic with an ANC of only .4 (400) but they elected to not give her a growth factor shot and to wait another week to see how she is responding. Her platelets had also dropped to 141. While this is not bad, it could signal some sort of GvHD problem as she continues to taper her Cyclosporine levels. If she is having any GvHD issues they are not presenting. She has no rashes, etc. The good news is that her RBC (Hgl) level was up somewhat. It was 11.2 which is pretty good for her.

All-in-all she is feeling well. She continues to have periods of fatigue but they aren't too bad. She will receive another blood test tomorrow so we hope there will be some improvement in her white blood cell and neutrophil levels.

Until later....

Bruce and Jackie
From Pryor

Tuesday +211 (Election Night Coverage)

2006-11-07T22:27:00.000-06:00

Just a quick note to let everyone know that Jackie received new blood counts today. Her RBC count continues to be good at 11.0. While this is not "normal" it is good considering where it has been. Unfortunately her WBC and ANC counts have declined again. Her WBC count was 2.8 with an ANC of only 300. If you will recall, anything below 500 makes her officially neutropenic and subject to disease, infections, fevers, etc. Any fevers over 101.3 call for an immediate trip to the hospital.

Due to the low levels she received another growth factor shot today to bring up her counts. These usually cause blood pressure problems and bone pain. She will only receive on shot to see what impact it has on her WBC/ANC counts next week. This depression of her count could be due to some of the meds she is taking for the C-Diff problem she experienced. It could also be due to some hidden GvHD. She continues to taper her Cyclosporine. She is now down to 75 mg/day.

Her platelets continue to hold. They are down slightly to 179, but this is far above any dangerous level.

All-in-all she is feeling well. She was a little depressed that her WBC counts did not hold at a level that would not require the growth factor shots. Her energy level was low today as well. This seems to be another small bump in the long and winding road. The good news is that her "good" days now far outnumber her "bad" days and hopefully with enough time they will all be good.

Until Later...

Bruce and Jackie
From Pryor

Monday +210 (Evening)

2006-11-06T20:11:00.000-06:00

Nothing major to report. Jackie continues to do fairly well. She still has some good days and some bad days. She had a CBC blood test last week. Some numbers had improved, while others had fallen. Her RBC (Hgl) level was 10.8. This is down a bit but not too bad. Her WBC count had dropped to 3.8 with an ANC neutrophil count of 1.8. This is much lower than her previous test. Hopefully it will not drop further. Her last minor round of difficulty was due to a dropping WBC/ANC level which required GSF (growth factor) shots. These cause wild fluctuations in blood pressure as well as bone pain. The good news is that Jackie's platelets had improved to 214. This is within normal ranges and far from her level of 2 approximately 1 year ago.

We are now about 13 months out from her initial round of chemo treatments. It has been a long year, but things seem to be on a slow mend. She is doing about an hour of exercise on the stationary bicycle and treadmill each morning. Nothing intense, but a tad more exercise each day. For those who may not have seen her since the transplant you will likely not recognize her! Thicker, darker hair and thinner than she was 25 years ago. The cost of the transplant has been nothing in comparison to the new closet full of clothes:)

Until Later....

Bruce and Jackie
From Pryor

Tuesday +204 Halloween

2006-10-31T20:23:00.000-06:00

Just a quick note to say that we received a phone call from the Mayo Clinic this evening. They called around 6:00 PM to give us the results of Jackie's FISH (fluorescent in situ hybridization) test. This is an important (expensive) and critical genetic test that allows one to diagnose the type of CLL present in the system. In most cases the FISH test is performed via bone marrow biopsy. Jackie has had two tests in the past. In this case the test was done from peripheral blood. The test came back as completely normal. This is very good news as it shows that there is no level of detectable CLL. When we return in January they will probably complete another chimerism test to see if the level of donor cells is still at 100%. Past chimerism test were at the 100% level and there is no reason to expect a change.

Until Later...

Bruce and Jackie
From Pryor

Friday +200 (Evening)

2006-10-27T18:26:00.000-05:00

We just returned from Rochester. Jackie had a good checkup. Her counts continue to do well. Her RBC (Hgl) count was down a little to 10.8. Her WBC count continues to be good at 6.8. We did not receive an ANC level, but with a WBC count of 6.8 it would be good as well. Her platelets skyrocketed to a high of 193.

The results of her CT scan show continued improvement in her lungs due to the pneumonia she experienced 6 weeks ago. Her pulmonary functions were all good. They have resumed her CSP (cyclosporine) taper as well as her steroid taper. Hopefully she will not run into any GvHD problems as these two drugs are reduced. By the time of our next visit these two drugs will have been reduced to almost zero; this is a big milestone.

She was positive for C.Diff. This is one of those nasty bugs that show up in the digestive tract. It happens when you receive large doses of antibiotics or whenever your system is immune suppressed. She will have to take a nasty pill for the next 10 days. Other than the taste, it shouldn't be a big deal.

The docs felt good enough about her condition to give her a flu shot. I should note that anyone who will be around Jackie needs to get a flu shot. The docs strongly recommended that everyone in the immediate family get a shot. They also asked us to warn everyone that she CANNOT be near anyone who gets the inhaled form of flu vaccine. The inhaled version is usually used by young children and older people. It is made from live flu virus and she could contract the flu from this form of vaccine. If you do get the inhaled version you must wait a minimum of 7 days before coming into contact with Jackie.

Barring any complications, we have been cleared for a two month interval between checkups. This will put her next checkup sometime in January. I'm sure the weather in Rochester will be wonderful when we next return!

Until next time...

Bruce and Jackie
From Pryor

Tuesday +197 (Afternoon)

2006-10-24T15:20:00.000-05:00

Another quick note to let everyone know that Jackie has been doing reasonably well. She has not had a CBC since my last report, but she continues to feel OK. She has been able to do a lot of the ordinary housework and has even been able to spend some time on the treadmill. She continues to have both good and bad days and it will still be awhile before she is back to normal. She continues to take a low dose of the steroid, Prednisone. She also continues to take a handful of other medications; although it is nothing like just after the transplant.

We return to the Mayo Clinic on Thursday. They will do routine blood work and perhaps another CT scan. Of course we hope the reports are good! I'll try to do an update from Rochester.

Until later...

Bruce and Jackie
From Pryor

Monday +189 (Evening)

2006-10-16T22:15:00.000-05:00

Just a quick post to let everyone know Jackie is doing better. Her counts have improved since her last tests. Her current RBC (Hgl) level is 11.6. A normal level would be above 12.0. Her platelets have risen to 111. Normal would be 130 or higher. Her platelets have been as high as 170. The primary news is that her WBC count has improved from 1.2 to 7.6. Yes...7.6. This is in the high normal range. Her neutrophil level has improved from 100 (.1) to 6100 (6.1). Of course this is the result of 6 growth factor shots. It remains to be seen if the levels will hold. Hopefully they will!

Her energy level has been very good. This is likely due to her high Hgl level. She continues to taper the oral steroids so her sleep patterns have improved.

The 6 growth factor shots led to several bouts of extreme bone pain that required pain meds. This is the result of the marrow forcing new cells to be created and excreted. Fortunately the pain is now gone.

So for now things are going well. This seems to be the start of a "good" week.

Until later....

Bruce and Jackie
From Pryor

Thursday +185 (Evening)

2006-10-12T20:06:00.000-05:00

I reported on Monday that Jackie was running a minor fever. We found this was due to the fact that she is neutropenic. Her WBC count had dropped to 1.2 and her absolute neutrophil level (ANC) was only .1 (100). Anything below .5 (500) can cause the body to elevate the body's temperature. If the fever goes above 101.3 they will begin IV antibiotics and blood cultures. The antibiotics can cause the blood counts to decline further.

in order to combat the low count she has been receiving growth factor shots each day. As of today her WBC count had increased to 1.5 but ANC was still at .1. A normal ANC would be 1.5 (1500) or above. By having a low ANC she is highly susceptible to any type of infection. The good news is that her RBC (Hgl) count is in the low normal range at 12.0. Her platelets have declined to 118 from 170 a few weeks ago.

The doctors don't know why her counts have declined. It may be due to some GvHD. We will continue to watch the counts and hope they improve.

Until later...

Bruce and Jackie
From Pryor

Monday +182 (Evening)

2006-10-09T19:57:00.000-05:00

Well, it has officially been more than 6 months since the transplant. For the last week Jackie has felt well. There have been many days when she reported feeling "normal" again. She was able to travel to Dallas this weekend to visit the children.

Tomorrow she goes for blood tests in Tulsa. I think the results will be good. Tonight she is running a minor fever. At present it is only about 1 degree above her normal baseline temperature. Unfortunately, this may spell another problem. We will have to wait and see if it goes above the Mayo's threshold of 101.3 degrees. If so, we will be headed for MN.

Of course we hope to see her make as much progress in the next 6 months as she has the last. Only time will tell.

Until later...

Bruce and Jackie
From Pryor

Wednesday +177 (Evening)

2006-10-03T20:20:00.000-05:00

Things have been going well. Jackie has felt "almost normal" for the last week. Today she reported she could "almost feel things getting better". This probably means her blood counts are improving. Her last counts were good. Of course some of the current good-health may be due to the Prednisone she is taking as a result of her pneumonia. The steroid dosage is being gradually decreased over a 4 week period. At 4 weeks we will return to the Mayo for another CT scan. If the inclusions in her lungs are no longer there then she will probably stop the Prednisone. The problem is that this type of pneumonia is so rare they have no idea what will happen when the steroids are reduced or eliminated. We joked with the doctor and he freely admitted they were only "practicing at medicine" when it comes to these odd and rare cases. Hopefully the pneumonia will not reactivate when the dosage is decreased.

In any case she is doing well. The only side effect is some severe mood swings due to the steroid usage. Hopefully this will improve as the dosage is lowered.

Until later...

Bruce and Jackie
From Pryor

Thursday +171 (Evening)

2006-09-28T20:10:00.002-05:00

Just a quick note to mention that we received a good report from the doctor today. It seems her lung CT show "marked" improvement. This is due to the Prednisone. We will meet with the pulmonary doctor tomorrow. He will decide if we should begin to taper the Prednisone. They would like to get her off the steroids as soon as possible. It is likely she could have a reactivation of her CMV virus while on the Prednisone. For this reason she will need to be tested weekly for reactivation. The Herpes (no it is not the STD one!) has improved as well. The PA made the remark that it seems every transplant patient has to deal with Herpes reactivation at some point. From what I can gather they feel Jackie is lucky the outbreak was in her mouth and on her gums. It seem most patients experience the Herpes zoster (Shingles) form which is often very painful.

Jackie's blood test have improved for the most part. Her RBC (Hgl) is 10.9. This is still below normal, but an improvement from several weeks ago when she required two units of whole blood to maintain her above the Mayo threshold of 8.0. Jackie's WBC count was a respectable 3.2 with a lowered ANC of 1.46. The 1.46 is still OK, but down from a previous 2.3. Her platelet have risen to a stellar 170! This is within normal ranges and such a relief from the level of one year ago. One year ago this number would have been below 30. Eleven months ago it was at 2

Yesterday was one of the few days when she reported feeling "normal" again. There have been only a couple of these over the last few months so it is always nice when that happens. Hopefully the number of "I feel normal" days will increase as time goes by.

Until Later...

Bruce and jackie
From Rochester, MN

Thursday +171 (Evening)

2006-09-28T20:10:00.000-05:00

Monday +168 (Evening)

2006-09-25T22:39:00.000-05:00

Just a quick update to let everyone know that Jackie seems to be doing well with her pneumonia. Unfortunately she has had a Herpes viral flair. There are several types of Herpes Simplex. If you've ever had Chicken Pox then you've had Herpes. People with compromised immune systems are subject to Herpes outbreaks. These usually present as Shingles. In her case it was present in her mouth and sinus cavity. It has caused a lot of pain. They have prescribed some heavy-duty anti viral drugs that should knock the flair up down quickly.

We will be heading back to the Mayo Clinic on Wednesday. We will return on Saturday. They will be following up on her pneumonia and Herpes.

Until later...

Bruce and jackie
From Pryor

Monday +161 (Afternoon2)

2006-09-18T15:24:00.000-05:00

Jackie is finally free of the hospital. We are scheduled to return for checkup in 10 days. We will leave for Pryor on Tuesday.

Until later,

Bruce and Jackie
From Rochester, MN

Monday +161 (Afternoon)

2006-09-18T13:59:00.000-05:00

They are releasing Jackie today. We are still awaiting detail, but it seems like they will release her for about a week with a follow up visit back her at Mayo in 7-10 days.

Due to my cold I haven't visited her at the hospital. She tell me that her counts have improved. Her RBC (Hgl) is now 9.9. Her WBC count is 3.3. and her platelets have moved up to an outstanding 173. She tells me she no longer is experiencing any blood in her stools. So things are better.

I'll post more as the info becomes available.

Until laster...

Bruce and Jackie
From Rochester, MN

Sunday +160 (Evening)

2006-09-17T20:09:00.001-05:00

I didn't visit jackie today due to my cold. Fortunately it seems to be getting better. Jackie is feeling fairly well. She has encountered another problem. She is having some blood in her stool. This could be caused by a C-diff infection; but doesn't seem likely. They believe it is due to the high doses of Prednisone. They are monitoring the situation.

Until later....

Bruce and Jackie
From Rochester, MN

Sunday +160 (Evening)

2006-09-17T20:09:00.000-05:00

Sunday +160 (noon)

2006-09-17T11:40:00.000-05:00

Jackie will not be released today from the hospital. They wish to continue to observe her. Her creatine levels are still high; likely as a result of some of the IV meds she has received. They are continuing to give her IV saline flushes to clear her kidneys. Her hemoglobin levels continue to be a problem. I believe she told me the level was 9.1. In the past she has been able to maintain a level in the 10s. Her WBC count is back up a bit to 3.5. Her platelet have recovered nicely to the 160s.

I continue to battle a cold. I was only at the hospital a short while yesterday. I will not visit today. I will need to be non-contageous before I can subject her to a confined car ride for 10 hours. My cold seems to be better so hopefully by tomorrow I will be well once again.

Until Later...

Bruce and Jackie
From Rochester, MN

Saturday +159 (Evening)

2006-09-16T20:18:00.000-05:00

They did not release Jackie today. They felt it best to observe her for at least another 24 hours due the type of IV drugs that were administered. She will probably be released on Sunday. I am not certain how long they will want her to remain in Rochester for observation.

In reading about her condition it seems that Prednisone usually cures the problem quickly. In most cases in 12-48 hours. The problem is classed as a type of pneumonia.

I did not spend much time at the hospital today. It seems I am coming down with a cold/flu:( I'm not certain how we will avoid contact, but I will have to be VERY careful when she returns. Fortunately my cold has not gotten bad and feels like it could be of the 24 hour variety.

Until later....

Bruce and Jackie
From Rochester, MN

Saturday +159 (Morning)

2006-09-16T09:17:00.000-05:00

I just spoke with the doctor this morning. They feel Jackie's situation is likely GvHD. So far there has been no positive result for a parasitic infection. It seems in certain cases GvHD can elevate the eosinophil level. The treatment is, of course, Prednisone or steroids.

With the current diagnosis in hand they plan on discontinuing all of her IVs probably today. They want to observe her in the hospital over the weekend but are planning for a release on Monday. They may want us to stay within the area for some time so they can more closely monitor her. That has yet to be determined.

I have either allergies or I am coming down with a cold. It is too early to know which one. So I am being VERY careful to not come in contact with jackie. While in the room I wear a surgical mask and use the hospital hand sanitizer dozens of times per day.

Until later....

Bruce and Jackie
From Rochester, MN

Friday +158 (Evening)

2006-09-15T22:04:00.000-05:00

Tonight Jackie received what should be her last round of "anti" IVs. At one time they had 5 bags of noxious IV solutions running into to IV lines. The anti-fungal solution made her very sick (as it did last night). They had to give her a shot of Demerol before they could continue. This, in addition to her premed Benydryl, made her very sleepy. Between the two drugs it managed to counteract the Prednisone.

She is still having a great deal of difficulty eating. She is nauseated and nothing appeals to her. The Prednisone may increase her appetite so maybe this will help her with her eating.

Until later....

Bruce and jackie
From Rochester, MN

Friday +158 (Late afternoon Update 2)

2006-09-15T17:29:00.000-05:00

The news continues to be good. We just spoke with the doctor again. They feel certain there are no pneumonias, either bacterial or fungal. They also feel she is not dealing with GvHD - although this is still a possibility. They are going to continue the IV stuff for another 1/2 day or so just to make certain nothing is growing. It seem her eosinophil cell levels are elevated in her lungs. What is this? Eosinophils are white blood cells that are used for fighting infection by parasites. The parasite that could be causing the problem is quite frequent in Mexico, South America, and the tropics. They asked if we had ever been in any of these areas. Of course we used to sail in the tropics so the answer is "yes". Jackie has also been to Cancun. They are running some tests to see if this could be the cause. If so, there are drugs to fight the parasite. It seems that the parasite can remain dormant for many years and reappear when the immune system is compromised. So BINGO. The treatment in the short term will be oral Prednisone. So the news seems to be getting better. They just gave Jackie a big dose of Prednisone. She will likely be running laps around the floor most of the night. Feel free to call in the middle of the night. I'm certain she will still be awake:)

Thank goodness we came to Rochester. This sort of thing could NEVER in a million years been determined in Tulsa.

Until Later....

Bruce and Jackie
From Rochester

Friday +158 (Late afternoon)

2006-09-15T16:01:00.000-05:00

Just a quick note to let everyone know that all cultures and smears from yesterday's biopsy are still negative for fungal infection. All signs point toward GvHD. They will begin Prednisone today. In checking, it seems it takes a bit of time before the steroids "kick in" and begin to bring GvHD under control. It may be a week before we see much improvement. Of course Prednisone also lowers blood counts, so the cycle can be never-ending. Again, walking the sword.

The good news is that what she has in her lungs is apparently not fungal. This is good news as fungal infections can be very difficult to treat. Of the several potential problems, this is (hopefully) the best problem to have.

I will post more as we know more...

Until later....

Bruce and Jackie
From Rochester, MN

Friday +158 (Noon)

2006-09-15T13:08:00.000-05:00

We have today's blood counts for Jackie. Her RBC (Hlg) level has dropped below acceptable levels. Her RBC (Hgl) is now at 7.9. For this reason they are infusing 2 units of whole blood. Below 8 requires transfusion. Her WBC count continues to drop slowly. It is currently at 3.7. Her platelets are also taking a hit. They have dropped to 128. Her platelets and WBC counts are still within acceptable limits. They would transfuse platelets if they were to drop below 20.

The fresh blood should give her more energy and help her to feel better.

Should anything change I will post the changes immediately.

Until later...

Bruce and Jackie
From Rochester,MN

Friday +158 (Morning)

2006-09-15T08:47:00.000-05:00

The doctor just left the room and we have no news - which is good news. Her cultures are all still negative and as I mentioned yesterday her smears are negative for fungus. So far she is still negative for CMV. If she were positive it would have likely presented in the culture by now. So what is the problem?

The current thinking is that she is facing some GvHD in the lungs. This is very common. It can be very serious, but usually it is manageable and treatable. If she still has negative cultures by tomorrow they will begin to treat her for GvHD. Treatment for GvHD will consist of steroids; probably oral. Steroids are a very effective treatment for GvHD. Of course long term usage is not good. If she does have GvHD it can (a) get worse; (b) stay the same; (c) improve. Only time will tell which will be the case. To date, Jackie has not presented any symptoms of GvHD which is somewhat unusual. Usually if GvHD is present, some sort of skin rash is also present.

It is only supposition on my part but I would think if the diagnosis is GvHD they will begin treating her with Prednisone. My guess is they would want to wait several days to a week and get another CT scan. If she improves they would release her, but continue to monitor her progress. One of the problems with steroids is that it can quickly decrease blood counts. Of course we all know what that means. As always, the choices will mean walking the edge of the sword.

We were encouraged by the doctor's report this morning. We've had this guy before and his bedside manner is the best in the hospital. He reassured us that the decision to admit Jackie was more related to Mayo Staff coordination than her general health. Since they didn't know what they were dealing with they wanted to make certain any problems were dealt with BEFORE the weekend. This is the sort of thing that would never be considered in Tulsa.

Jackie is actually feeling quite well. She still has a low-grade fever (100.1 5 minutes ago). Intermission: the infectious disease doc just came in.

The infectious disease doctor again confirmed that cultures were still negative. If Jackie had a bacterial infection it would likely have turned up by now. If she has a fungal infection cultures wouldn't turn positive until later today or tomorrow. They will continue to treat her to cover every possible contingency.

To continue, Jackie is feeling well. She is up, active, and currently eating breakfast.

So, I guess no news is good news. I'll update as soon as I know more.

Until Later...

Bruce and Jackie
From Rochester, MN

Thursday +157 (Evening)

2006-09-14T21:01:00.000-05:00

Not much to report. We did get some preliminary results from the biopsy. The "smears" were negative for a fungal infection and for a bacterial infection. The infection could still be fungal or viral, however. The cultures are not back yet. They will require 12-48 hours to get results. Also we have no result on CMV.

A couple of pulmonary docs were in and they are beginning to treat her for a fungal infection. They are giving her several new IV anti-fungals and antibiotics. They have two IVs running at once. They tried to start a second IV line in her arm so they can add a third IV, but were not able to find a vein. She's been stuck so many times in the last two or three days it's terrible. I think we are both looking forward to a new central line.

They are waiting on a central line to see if whatever is causing the infection can be treated by oral medication. If, by some stroke of luck, she can be treated orally there will be no need for a central line. The only problem is she will still need to be stuck once or twice a day for blood draws, etc.

Other than lack of energy, Jackie actually feels reasonably well. Her fever continues to be low-grade. With the exception of her Hemoglobin, her blood counts continue to be good. Her RBC (Hgl) is down to only 9.1. This would explain her lack of energy. Her WBC count is 3.9 which is down a bit but still very respectable. Her platelets are at a great 152.

Hopefully the drugs will be quick acting and the stay will be short. Hopefully!

As I write, a second IV nurse is attempting to get an IV in her hand. The first nurse stuck her twice and missed both times. One of the sticks nicked a vein. The current nurse is the "expert". She just hit a vein on the first stick. So now she will receive a new IV drug. They are currently using Levaquin. I've not heard of the new drug. It has a very long name that even the docs seem to have difficulty in pronouncing.

Until Later...

Bruce and Jackie
From Rochester, MN

Thursday +157 (Afternoon)

2006-09-14T14:16:00.000-05:00

A quick note to let everyone know that we have met with several of the "lung" doctors. It seems Jackie has "a significant atypical infiltration" in her lungs that has occurred over the last 6 weeks since her last CT scan. They have taken her for a lung biopsy. The original plan was for bronchoscopy only. The pulmonary docs wanted a biopsy.

It does not appear she has a simple pneumonia. The infiltration is within the small air sacs. She is not coughing significantly. She is only running a low-grade fever and has some shortness of breath.

There are several possibilities for her problem. It could be CMV (cytomegalovirus). This was the virus she had that required 6 weeks of IV anti-viral treatments. She was treated with 2 and 3 times per day ganicyclovir. The problem with this drug is that it can quickly deplete blood counts.

The other possibility is that the infection is fungal. Hopefully the biopsy will tell us more. In any case it seems her condition is more serious than first thought and we will likely be here longer than originally thought.

In my last post, I said it would be good if she received some calls. She is very depressed and upset by this latest turn of events. However that may not be a good thing tonight as I'm sure she will be groggy and sore from today's procedure. Feel free to call tomorrow, however. If she doesn't answer it likely means she either doesn't want to talk or she is busy with a doctor or nurse. If she feels like returning calls she will.

I will probably post again tonight. I believe we will have some preliminary results from the biopsy by early evening.

Until later....

Bruce and Jackie
From Rochester

Thursday +156 (Morning)

2006-09-14T10:45:00.000-05:00

Well, they admitted Jackie to the hospital this morning. As I have done in the past I will update the blog several times per day.

She was admitted more for the convenience of the staff and doctors than because of her health. They felt it would be best if they could have the various team members see her more frequently. They also want to make certain they stay on top of her situation. Last night her fever was again elevated. It reached 101.7.

The CT scan revealed she has some type of inclusions/infiltrations in her lungs. They feel it could be a pneumonia or a fungal infection. It is likely they will do a bronchoscopy to determine what is going on. The standard course of treatment for this situation is 2 weeks of IV antibiotics. In order to keep from being "stuck" so frequently and so they will have access to her veins they will insert another central line catheter. This will be a PIC catheter. It will be inserted in the crook of her arm but will travel up her arm to a major vein or artery. It is much less invasive than her past catheter.

Naturally Jackie is very disappointed and upset by the prospect of spending the next two weeks back in the hospital. She feels as if she is back in prison. Unlike before, if anyone would like to give her a call to cheer her up it would probably be a good idea. Although she doesn't have a lot of energy I think she would like to hear from her friends.

Until later....

Bruce and Jackie
From Rochester, MN

Wednesday +155 (Morning)

2006-09-13T11:16:00.000-05:00

Jackie had her second IV antibiotic treatment this morning. She has a CT scan at 1:30 today. Tomorrow she has a battery of doctor visits. We will be seeing the Infectious Disease team and the Pulmonary Specialist Team. Depending upon what is found in the CT scan her course of treatment could last as long as 10 days. We have an appointment with her normal BMT doctor on Friday. It appears the earliest we could be back home would be this weekend. This would only happen if her fevers resolved and they could switch to an oral antibiotic.

Her cultures still continue to come back negative. I don't think they will find anything in her blood culture. Anything serious would have already cultured. Her urine culture was indeterminate. Stool cultures are pending. It is possible she could be positive for C-diff or CMV. CMV (which she had before) would seem unlikely.

They continue to find a small amount of fluid in her lungs. She also has a minor cough. In my opinion they will likely find she has/had the beginnings of pneumonia. Whatever is wrong, it doesn't seem to be getting worse. She continues to run a very low-grade fever. In the last 24 hours it has been below 100 degrees. It has been normal or below normal several times. Of course they take any fever very seriously due to her immunosuppressed condition. She continues to have a serious lack of energy. She was barely able to walk back to the apartment after this mornings IV treatment. This is likely due to her decreased hemoglobin (Hgl) level. It was 9.4 a few days ago.

We also learned today that the lady I've mentioned in the past, Lisa Kleeman did not survive her third transplant. She passed away about 2 weeks ago. Naturally Jackie was depressed by the news.

Until later....

Bruce and Jackie
From Rochester

Tuesday +154 (Back in Rochester) Evening

2006-09-12T21:55:00.000-05:00

Today Jackie received a battery of tests to see what might be causing her fevers. She received a chest X-ray and they collected various samples for culture. So far, her blood cultures continue to be negative. Her chest X-ray showed a potential area that could be the beginnings of pneumonia. For this reason they began treating her with twice-a-day IV antibiotics (Cefepime). We are not certain how long these will continue. I suppose until she no longer has any fever and until the X-rays and/or CT scans show no areas of concern.

Tomorrow she will have a CT scan. This will probably confirm or dispel the pneumonia diagnosis. Jackie continues to run a low-grade fever. It was 102.7 this morning when she awoke, but the remainder of the day remained below 100. Due to her low hemoglobin her energy level has been very low. She was in bed or on the sofa most of the day. The trip to the various appointments sapped her energy level for the entire day.

We will be back at our old haunt, Station 94, BMT Center, St. Marys at 8:00 AM tomorrow morning. The nurses still remember us, although they don't immediately remember our names. To them we seem like old friends returning for a visit. To us it seems like our jailers welcoming us back to prison! But it is what we have to do...

Until later....

Bruce and Jackie
From Rochester.

Tuesday +154 (Back in Rochester)

2006-09-12T06:14:00.000-05:00

Well, we are back in Rochester! After returning home to OK on Saturday, Jackie began running a fever within 4 hours of returning home. It was a low-grade fever through Saturday night into Sunday. On Sunday night it worsened and at 3:00 AM it rose to 101.9. At that point the decision was made to return to Rochester. We were on the road by 4:00 AM and arrived in MN by 2:30 PM.

Upon arrival Jackie's temperature was entirely normal. The head of the BMT unit was in the office and decided to check her out anyway. In listening to her lungs he thought he heard a slight crackle. He ordered a CT scan for her. The earliest available slot was on Wednesday at 1:30 PM We are up at 5:00 again in hopes we can get in for a very early slot today. Since our visit yesterday with the doctor, Jackie has began to cough. There is a slight tinge to her sputum. So, it won't be surprising if they find something in her system. This morning as I write her temperature was 102.4. So our decision to come here seems to be the correct one.

Somewhat surprising were her counts. Her RBC (Hgl) count had fallen to 9.4. The docs said this could have been in reaction to her fever. Her WBC count had risen to a normal range of 4.3 with ANC of 1.65. Of course this could have also been partially in response to an infection/fever. It shows that her new immune system is mounting a good, healthy response to whatever is taking place. Her platelets had also risen to normal levels at 163. One might have expected these to be reduced due to fever/infection.

As we are back in Rochester, I will post at least once per day and more if needed.

Until later...

Bruce and Jackie
From Rochester

Friday +150 (Evening) From Rochester

2006-09-08T20:29:00.000-05:00

The day began early with blood tests at 7:00 AM. Then Jackie had a Pentamadine breathing treatment at 10:00. Finally we met with the BMT nurse coordinator and doctor beginning at 1:00 PM.

Jackie's blood tests were good. We had mixed results from last week. Her RBC (Hgl) was down a bit to 10.3 from last week's 11.3. Her WBC count was 2.9. That was down a bit from last week's 3.2. Her neutrophils were also down a bit to 770 from last week's 900. Her platelets were up to 124 from last week's 110. All-in-all the doctor seemed happy.

They believe Jackie's bone/muscle pain may be GvHD. It seems it is possible to have GvHD present in the muscle tissues. They performed an enzyme test and found nothing abnormal. They will continue to monitor the situation. They want her to continue to decrease her Cyclosporine. If the pain becomes worse they may require a muscle biopsy or additional immunosuppression. We learned from the nurse coordinator that GvHD will always be a possibility. She said that they have seen flare-ups even 5 years after transplant. This can happen if the new immune system comes under stress. For example, they sometimes see flare-ups if a patient develops pneumonia.

Jackie had a good today. She felt good today with very little pain. She also ate well. The doctor is a bit worried about the continued weight loss. She has lost almost 70 pounds. During the last month she has lost an additional 10 pounds. They suggested she might want to take some appetite enhancing drugs. We both laughed. They were serious. If the weight loss continues, she will likely take pills that cause her to become hungry. Go figure!

The best news of the day was that the doctor's feel she is doing well enough that she will not need to return to the Mayo Clinic for 2 months. Of course if her situation changes we will come back immediately.

Until Later...

Bruce and Jackie
From the Mayo, Rochester, MN

PS. We have to come home. Jackie forgot to put the suitcase by the door in Pryor. We arrived in Rochester with NO clothes. The first thing we did was go shopping.

Monday +145 (Evening)

2006-09-04T18:19:00.000-05:00

Just a quick update. Jackie continues to have a lot of nausea and bone/muscle pain. The reason is unknown. She has had a couple of instances of vomiting. This is the first time she has been this sick in quite some time. The pain and nausea is well controlled by use of Oxycodone but she is hesitant to use it. She is afraid she will become reliant upon the strong pain meds.

The kids were all home for the Labor Day weekend and this seemed to help. We will be returning to the Mayo Clinic at the end of this week for another checkup. This is the first return visit in 5 weeks.

Jackie continues to taper her Cyclosporine levels. We are hoping she will not experience any GvHD as the taper continues. The current level is 175 mg. Just prior to transplant she was taking about 900 mg per day.

Until later...

Bruce and Jackie
From Pryor

Tuesday +139 (Evening)

2006-08-29T23:31:00.000-05:00

Jackie has not felt well for the last week. Some of her nausea is back. She has had some intense muscle/bone pain. We don't have any idea why, but it has required bed rest and pain pills.

The good news is that her latest blood tests (yesterday) show substantial improvement. Her RBC (Hgl) increased to 11.3 from 10.7 last week. Normal for a female at Jackie's age is 12-16 so she is not from being "normal". Her WBC increased to 3.2 from 2.3. Normal is 4.8 to 10.8. Her ANC count increased to .9 from .8. Normal is 1.9 to 8.0. Jackie's platelets increased to 110 from 98. Normal is 130 to 400. Jackie has been within normal ranges in the past. She doesn't have far to go to once again be within normal range for platelets.

Until next time....

Bruce and Jackie
From Pryor

Thursday +134 (Evening)

2006-08-24T19:56:00.000-05:00

Jackie had another CBC this week. With the exception of platelets, all numbers were improved. Her RBC (Hgl) was 10.8. Her WBC count was 2.5 with an ANC of .8 (800). Her platelets had dropped to 97. The reason for the drop is unknown. Platelets, however can fluctuate a good deal.

Jackie has not felt very well this week. She has had a lot of aches and pain. Her nausea seems to be improved, however. She is still losing some weight. Without me to constantly nag she doesn't eat as she should.

I will post again when I have more information.

Until Later...

Bruce & Jackie
From Pryor

Sunday +131 (Sunday Evening)

2006-08-20T21:56:00.000-05:00

Not a great deal to report. Jackie continues to have good and bad days. She is still tired much of the time. Much of her time is spent on the sofa. She has been able to get out for short periods. She went grocery shopping this week. In Pryor, the sight of someone walking around with a surgical mask draws a lot of attention. She was also able to attend a baby shower in Tulsa this weekend.

Jackie will have her weekly CBC done on Tuesday in Tulsa. Hopefully her counts will continue to be good. I'll post the results as they become available.

Until Later...

Bruce and Jackie
From Pryor

Tuesday +127 (Morning)

2006-08-15T11:39:00.000-05:00

Just a quick update to let everyone know how Jackie is doing since her recent return home. She is doing well. She continues to be negative for the infection that kept us for an extended stay in Rochester. Her blood counts continue to see-saw somewhat. Last week her RBC (Hgl) was 10.1. Her WBC count was 2.1 with ANC at .6 (600). Her platelets skyrocketed to 167.

Yesterday's CBC test showed a RBC (Hgl) at 10.3 with a WBC of 2.3 and ANC of .75 (750). Her platelets remained the same at 167.

All-in-all she is feeling well. She is still short on energy, and she still has some "bad" days. These, fortunately, have been fewer and further between.

Keep checking the blog....I'll update once per week or so.

Until Later....

Bruce and Jackie
From Pryor

Tuesday +120 (Evening) Headed Home

2006-08-08T19:31:00.000-05:00

Met with the docs today and we are headed home again. They feel the infection Jackie experienced was localized to the line on the Hickman catheter. She has not had any fevers and feels fine. They will continue to conduct blood draws at home and do a final blood culture at home to make certain all is clear. If nothing else happens we won't return to Rochester for about 4 weeks!

Jackie's counts have done well since once the infection cleared. Her RBC (Hgl) is 9.9. That is down a little, but not too bad. Her WBC count is still good at 2.8 with ANC at about 1250. Her platelets have recovered nicely to 127. These numbers are more than a day old. I would guess current numbers might be a little better.

They are placing Jackie on a high dose of Bacterim to make certain the infection has cleared. This can depress the blood counts. If this happens her dosage may need to be reduced.

Until later...

From Rochester (but not for long)
Bruce and Jackie

Monday +119 (What's Your Line?) Evening Update

2006-08-07T19:11:00.000-05:00

They removed Jackie's central line late this afternoon and switched her to oral antibiotics. She will be on a fairly high dose of Bacterim for a week. They don't plan on any more blood cultures at this point. We have an appointment with the transplant doc and infectious disease doc tomorrow afternoon. I think they will clear us for a return to Pryor.

It is interesting to note how the Internet is a great leveler. Since the bacterial infection Jackie picked up is rare the nurses and physician's assistant didn't know much about it. They did the same thing I did. They jumped on the Internet and did some quick research. Both declared it "BAD". In fact the PA must have read the same web page I read because she remarked the bacteria had been reclassified from Pseudomonas. What she failed to do was read the rest of the page and see that it rarely caused significant problems in humans. If you are a tomato plant, the bacteria is BAD news.

If we had listened to the nurse and PA we would have believed the worst about the infection. Since they declared it BAD Jackie was worried sick in spite of the fact that I was telling her not to worry. What could I know? I'm not a doctor! Once the nurses and PA consulted with the transplant doc and the infectious disease doc they realized it wasn't really so BAD. They only realized this when the got the order to pull Jackie's central line and put her on oral antibiotics.

I guess my point is the Internet can make anyone an instant expert on anything...if you use it! I can assure you the husband of the lady on her 3rd transplant is more of an expert on her disease than any oncologist in Tulsa, OK. Why? Because he has spent the last 6 months reading everything on the web regarding the disease. He's the true expert! Not the guy that spent 8 years in med school. Granted, he may not know a thing about setting a broken leg or performing breast enhancement surgery; but for MML he would be my go-to-guy!

In the past people attended institutes of higher education because they were repositories of knowledge. The colleges had vast libraries of books for the incoming students with "skulls full of mush" to use to fill their heads with knowledge. The Internet now decentralizes the library of knowledge. In 30 or 40 years will we need higher institutes of learning? I don't think so!

Monday +119 (What's Your Line?)

2006-08-07T15:20:00.000-05:00

Quick update: The hospital just called. In 45 minutes they will remove Jackie's central line and switch her to oral antibiotics. A sure sign the infection is not/was not serious.

Bruce

Sunday +118 (Evening)

2006-08-06T21:49:00.000-05:00

Ok, we have a bacterial culprit that is causing the extended stay in Rochester. Ready for some Latin? It is Stenotrophemonas (Xanthomonas) Maltophilia or as the microbiology techies like to call it; S. Maltophilia.

It seems this is a fairly rare Gram Positive aerobic bacteria. It used to be classed (by mistake) as Pseudomonas. It occurs in patients in hospitals with catheters and central lines. Imagine that!

In any case, it is rarely serious and easily treatable. The standard treatment is with the antibiotic they are currently using; Meropenem. It is also treatable with some oral meds so they may switch over to something else. We will know more tomorrow.

Jackie is feeling fine with no fever at all. Her counts have actually improved in most cases. Her RBC (Hgl) shows a decline to 9.2. I don't feel this is accurate. At 9.2 Jackie would be tired with no energy. That is not the case. Her WBC count has improved to 2.9 (with ANC at 1.25 (1250)). Her platelets have also improved to 99. The fact that she has no fever and the platelets have improved may mean the infection may have already been resolved. We should have culture tests from last night by tomorrow morning. If the culture tests would show a negative result I would expect them to release Jackie with an oral prescription for Bacterim (or similar).

Six degrees of separation...I received an email from Sandra Eubank in Nantucket. She said they had an opening at her art gallery and that a Dr. Klom attended. In speaking with him she found that he did most of the central lines surgeries for BMT patients at the Mayo Clinic. He also owns a house in Nantucket about 1 mile form us. Dr. Klom was the guy who did Jackie's central line! Small world.

Until Later

Bruce and Jackie
From Rochester

Sunday +118 (Afternoon)

2006-08-06T12:54:00.000-05:00

We just returned from the hospital for the morning IV antibiotic treatment. We still don't know a lot, but it seems the infection is in one of her central line lumina (tubes - she has two). This is a fairly common condition. They will classify the exact bacteria (probably today) and then decide what, if anything, needs to be done to treat the problem. It is possible they could do one of several things:

Nothing. Jackie has not had any fever at all for the last 48 hours. It is possible the infection has already resolved.
Continue IV antibiotics: If the bacteria is a stubborn or resistant strain they will continue with an IV antibiotic.
Switch to oral antibiotics: If the bacteria is common and easily treated they may switch to oral meds and send us home.
Pull her central line: Since the infection is in one line they may remove the central line entirely. I think there is a strong chance they will do this. It may sound strange but we both hate to see it go. It makes blood tests SOOOOO much easier! No needle sticks by nurses who don't have clue what they are doing.

We had a long talk today with the lady's husband who has had multiple transplants. You may recall her in previous blog posts. She is now on transplant number 3. She is not doing well at all. She is suffering from what I believe to be the beginning stages of multiple organ failures. She is having lung, liver and heart problems all at once. She is day +24 on the existing transplant and day +128 overall. They have been through every problem known to exist. You may recall she is not a CLL patient. She was a multiple myeloma patient with other complications. She received a matched transplant (all three times) from a relative. The relative (sister) was not a good match. They are using a treatment protocol normally reserved for CLL patients. They have no other ideas left. You may recall she came into the transplant process very sick. They could not wait for an unrelated donor transplant. I think talking to the husband helped Jackie realize how good she was actually doing. I think it also helped him to see that even though we had been through the same, long process it is possible to get better and go home.

I am currently headed out to WalMart. When we packed we only expected to stay two days. As you might guess, I need some laundry soap, food, etc. I'm not buying anything that won't last for a 10 hour trip home, however. In other words, I'm not expecting to stay very long in Rochester!!!

Until Later...

Bruce and Jackie
From Rochester, MN

Saturday +117 (Rochester Update)

2006-08-05T22:24:00.000-05:00

Just a quick note to let everyone know we will be in Rochester for the foreseeable future. It is 10:30 PM and we just received a lab report that says Jackie's blood cultures are positive for some type of infection. This will require a course of IV antibiotics until the cultures turn up negative. We do not know the exact nature of the infection. All I know is that it is a Gram negative bacteria. Gram negative strains can be quite difficult to cure and can be associated with some forms of pneumonia. At this time, Jackie is showing no signs of pneumonia. In fact, she exhibits no signs of being sick.

The good news is the doctors said here CAT scan showed improvement and that all was normal. This included some "ground glass" areas that showed on earlier scans. It also revealed normal lymph nodes.

The other good news is that a FISH tests was performed along with a bone marrow biopsy 2 weeks ago. The tests revealed no discernible CLL cells. She is now classed as a PCR (polymerase chain reaction - a sophisticated DNA test) negative patient. Her marrow is also 100% donor with only a tiny amount of recipient cells. The recipient cells could still harbor some CLL so they will work to reduce this to a zero level.

They did find some unusual precursor cells. They felt they were not significant and only part of the process. The doctor said the type of cells found are usually found only in children and they were a bit puzzled. He didn't seem to be worried about them at all.

Jackie's counts were mixed. Her RBC was 10.2 which was down from 11.8 earlier in the week. Her WBC count was 1.9 with ANC at 1500. This was an improvement from her earlier tests. Her platelets had drifted down to 68. This was a good indicator, along with a low grade fever, that she might have some sort of infection.

We are on our way to the hospital for the first round of antibiotics. They will run another culture and we hope to know more later. With luck, it will be a minor problem. She has not run any fever today. UPDATE: We are back from the hospital. It is 1:00 AM. They will be treating her with the antibiotic, meropenem every 12 hours.

Bruce and Jackie
From Rochester, MN

Monday +111 (Morning) w/Afternoon update

2006-07-31T09:28:00.000-05:00

Jackie received a mid-week set of blood counts last week. The results were mixed. Her RBC count dropped from 10.8 to 10.5. Her WBC count dropped to 1.7, but her ANC count moved upward and was at .500. This count makes her marginally neutropenic. Fortunately she has not experienced any neutropenic fevers. Her platelets improved to 102.

For most of the week she felt fine. However on Saturday and Sunday she experienced a high level of nausea with vomiting on Sunday. In fact, she felt as badly as she did at +20 or +30. Today she feels better, however.

I really feel that since the Cyclosporine is being tapered she is experiencing some GvHD in her stomach and gut. I think that was the case before the taper and was the cause for her nausea, etc. As the anti-rejection drugs are tapered it makes the likelihood of GvHD a real possibility. Hopefully her body will adjust and the nausea will subside.

She receives another CBC today. Hopefully her numbers will be up. Without the growth factor shots there is a strong possibility they will be down. We return to Rochester at the end of this week for doctor's visits and blood tests. It is possible they will remove her central line, but with her counts still very low I don't have high hopes for this happening. Of course leaving the line in also presents problems as line infections are very common. As with the whole process this is a delicate balancing act.

UPDATE: jackie just got blood tests back from this morning. In spite of what I thought might happen her counts improved (for the most part) a great deal! her RBC (Hgl) rose to 11.8 from 10.5. Her WBC count rose to 2.9 from 1.7 with her ANC gong to 1.6 (1600) from .5 (500). her platelets retreated a little to 89 from last week's 102. All-in-all a good report. We look forward to the day when these numbers "hold" and don't fluctuate so much!

Until later...

Bruce and Jackie
From Pryor

Monday +104 (Afternoon) Latest Counts

2006-07-24T14:21:00.000-05:00

We returned to Oklahoma Saturday evening. Jackie has felt good since the return home. We are scheduled to return to the Mayo Clinic in two weeks for a follow up visit.

As most readers know, Jackie continues to struggle with low blood counts. She received a growth factor shot on Friday afternoon, another on Saturday after our return home, and one on Sunday. She will receive another today. This morning she had a CBC conducted in Tulsa and some of her counts have declined in spite of the growth factor shots. Her total WBC count has improved to 1.9, but her neutrophils (ANC) have dropped to the 300 level. Obviously this is of great concern as she is subject to infections and fevers. Her platelets have also dropped into the 80s range. While not dangerous, any decline is worrisome. The good news is that her RBC count has improved to 10.8.

The doctor's don't seem terribly concerned and feel this is "par for the course". For many people it takes upwards of a year before blood counts improve to normal levels. Jackie will have another CBC later this week. Hopefully her counts will have recovered somewhat.

We were saddened to learn over the weekend of Ruth Lapidus' mother in Israel. Our thoughts and prayers go out to her and her family. I believe her mother was 93 at the time of her passing.

Until later....

Bruce and Jackie
From Pryor

Friday +101 Test Results, etc

2006-07-21T18:35:00.000-05:00

Ok, first things first. Jackie did not get her central line removed. They wanted to leave in in for another couple of weeks to make certain her CMV didn't pop up again. When they made this decision her CMV test from yesterday had not been completed. By the time we received the test results (which are negative for the 6th or 7th time) it was too late to get the line removed. Actually the central line is nice since it keeps you from being "stuck" for the various blood tests. The danger is that an infection can occur in one or both of the lines and it is a foreign object protruding from your body. At this point it is also very painful to change the dressing since the skin underneath is quite tender. Jackie cries whenever the dressing is changed.

The test results overall were good. Her chimerism is still at 100%. Her PET scan was very good with no indications of any unusual activity. The PET scan shows area of hyperactive growth by using radioactive glucose. Glucose is consumed by the body when high levels of metabolic activity are taking place. So, for example, if you have a tumor that is reproducing it is consuming a high level of glucose. The radioactive isotope in the glucose injection Jackie was given would concentrate in areas such as the lymph nodes, etc and allow the doctors to determine the level of CLL that might remain. While they were able to determine that Jackie was in the process of digesting one of her many pills inside her stomach, they were not able to see any unusual activity related to CLL!

The doctor feels Jackies decreased blood counts could be related to at least one of her medicines. It is the oral form of the Ganiciclovir that could be causing the problems. For that reason they discontinued the medication. They also begin another series of growth factor shots. She received her first shot today. She will receive another 3 over the course of the next three days.

Jackie still continues to have difficulty in eating. The last two days have been especially difficult. What with all the tests and the interruption to her normal schedule she has not eaten much at all. She continues to lose weight. Her total weight loss is now over 50 pounds! She was nauseated much of the day and was vomiting this morning. She continues to have nausea with vomiting this evening.

Along with the oral form of the Ganciclovir they discontinued a couple of more drugs. One was a "three-a-day" liver function pill made from bear (yes the four legged kind) gall bladder. She was glad to see this one dropped. They are also reducing her Cyclosporine (anti-rejection drug) dosage by 25 mg every 2 weeks. At this rate she would be at a zero level in about 20 weeks. The reduction in Cyclosporine could easily trigger GvHD. In my opinion Jackie's nausea and vomiting is due to some GvHD in her stomach and gut. Reducing the primary anti-rejection drug could easily make the condition worse. Of course it is possible the stomach upset and nausea is caused by the Cyclosporine and a reduction in dosage will improve the situation. Only time will tell.

We did not receive the results from her bone marrow biopsy. They were not available before leaving. Hopefully there will be no surprises when the results are received. None are expected.

We have been cleared for another 2 week visit home. We will return around August 4th for more follow-up tests which will include a CT scan as well as additional blood work.

Finally, I want to remind everyone that Jackie is once again neutropenic. With her ANC count at only 440 she is highly subject to disease and infection. Please be careful if you plan a visit. The growth factor shots should increase this count quickly, but at this point she cannot stand to be sick from a cold or the flu.

Until later...

Bruce and Jackie
From Rochester, MN

Thursday +100 (Afternoon)

2006-07-20T15:09:00.000-05:00

So today is the magic day! Day +100. The day we once thought would never arrive!

We began tests yesterday. The primary test was the bone marrow biopsy. This test requires they drill a hole in your hip and remove marrow via a large diameter needle. Fortunately Jackie was sedated and didn't feel a thing. Later in the evening she had some pain, but it wasn't too bad. On Wednesday she had somewhat of an "off" day. Nausea, no appetite, etc. Today she is better.

We began the day today with a bone marrow density test (a scan), bloodwork, a chest X-ray, a PET scan, a mammogram, and more bloodwork. It is now 3:00 and hopefully we are about finished. We received her bloodwork numbers a few minutes ago. They aren't as good as I had hoped. Her RBC (Hgl) was 10.3 which is down from last week's 10.8. Her WBC count is low. It has dropped to 1.3. Her ANC level is .44 which is below the threshold of .50. This makes her officially neutropenic and subject to fevers, infections, etc. Her platelets have dropped to 98. Of course these numbers can vary from day-to-day, but I had certainly hoped they had all improved.

Tomorrow we meet with the doctor. I suspect he will order some growth factor shots in an attempt to increase her WBC count. If he feels Jackie is ready they will also remove her Hickman central line tomorrow. I am a bit hesitant about returning to Pryor with her WBC count so low. If she were to run into difficulty I might not be able to get her to Rochester. So, I don't know if we will be returning on Saturday as planned.

To top things off, I imported 18,500 fishing lures from China. They are sitting in OKC and the idiots from US customs won't allow them to pass through because they don't have a tiny sticker on the bottom that says, "China". They want me to remove all 18,500 from their Cellophane packaging and apply a sticker. All this while some terrorist is trying to figure out how to import plutonium for a dirty bomb and people are smuggling in heroin. Anybody have any contacts at US Customs?

Until Later....

Bruce and Jackie
From Rochester

Monday +96 (Morning) Back to Mayo for 100 day follow up

2006-07-17T11:12:00.000-05:00

Just to let everyone know, we will be heading back to the Mayo Clinic on Tuesday in preparation for the +100 day series of tests. Jackie will received another bone marrow biopsy, a PET scan, as well as a series of blood tests. She will also have her central line removed.

Overall, Jackie has been feeling well. She still has good days and bad days but the good days seem to now outnumber the bad days. She still has problems with food, nausea, and vomiting but overall it seems to be getting better. She is eating more things and her appetite seems to be improving. I think a lot of her problems with food stem from the medications she takes; most likely the Cyclosporine. They will begin tapering several of her drugs after 100 days. The Cyclosporine will taper over 90-180 days. Of course she could see some serious GvHD when this happens so we are still crossing our fingers!

Although we don't get daily blood counts, I feel her counts must be OK. Her energy level seems better so her RBC (Hgl) is probably improving. I was looking at her old records from before the trasplant last night. I noticed that her WBC, ANC, and platelet levels are actually better today than they were prior to transplant. Her RBC was substantially better than it is today. Prior to transplant her RBC (Hgl) was about 12.8 compared to today's 10.8.

Once we have results from the +100 day series of tests I will post them here.

Until later...

Bruce and Jackie
From Pryor

Thursday +92 (Afternoon)

2006-07-13T13:42:00.000-05:00

I thought I would update the blog for all those who are reading from afar. I know there are a great number of people who are reading this and really don't know Jackie other than by the posts and videos they have seen on this site.

Jackie is doing well. Her blood counts have improved. Her RBC improved to 10.8. Her WBC count improved to 2.8 (with an ANC of 1.5). Her platelets are now in the normal range at 156. Her CMV test was again negative this week (now 5 tests in a row)

She is still having good days and bad days. For example, yesterday she was sick most of the day and vomitted twice. Today she is fine.

We will return to the Mayo Clinic in the next 10 days for her 100 day round of tests. I will continue to post every few days or once per week unless something changes.

Until Later...

From Pryor,
Bruce and Jackie

Thursday +85 (Afternoon)

2006-07-06T15:28:00.000-05:00

Just a quick note to let everyone know we made it home OK. I was a little slow in updating the blog due to the fact that I haven't re-installed the computer at home. My work computer was hesitant to restart after being idle for 4 months.

The decision to allow Jackie to return home came as a surprise. We had a late appointment with the doctor on Monday. Instead we met with a transplant nurse coordinator. The doctor left instructions with the nurse to release us for a home visit if Jackie's blood counts reached acceptable levels. Her RBC (Hgl) was 10.4. Her WBC count was 2.4. Her platelets were 117. Barring complications she is released until her +100 day tests.

We rushed around to fill prescriptions and gather test kits that will be used in Tulsa for the CMV and Cyclosporine tests. Her blood levels will be tested weekly while at home. Hopefully her levels will remain steady (or increase). If not, she will require more growth factor shots or a return to Rochester.

Once we had the prescriptions gathered we headed for the apartment to finish packing. Jackie had little energy and did her best to help but in the end I had to pack the car and the remainder of the apartment. I finished around 10:00 on Monday night. We departed Rochester at 4:00 AM and arrived in Pryor at 3:00 PM.

Jackie has had a couple of good days. Of course lots of family and friends have been by to visit. Today she has been tired with quite a bit of nausea. All-in-all she seems improved, however.

After 4 months away Chloe (the dog) does not seem to recognize her. Of course there is no way to tell what she is thinking, but she definitely doesn't behave like Jackie's best friend. One has to wonder if the transplant changed the way Jackie smells to the dog. Crazy? Maybe not! Jackie has always had dry, itchy skin. Since the transplant her skin texture has become more normal. It seems to have a little more oil. I'm certain a dog could smell/notice the change. In any case, Chloe seems to be slowly coming around to the fact that Jackie is someone she likes.

I will continue to report every few days on Jackie's condition. Should it change I will update the blog.

Until later...

Bruce and Jackie
From PRYOR!!!

Monday+82 (No, fireworks in Pryor) HEADED HOME

2006-07-03T16:48:00.000-05:00

THIS IS THE LAST POST FROM ROCHESTER....AT LEAST FOR NOW. WE WERE CLEARED FOR A RETURN VISIT HOME LATE THIS AFTERNOON. WE WILL LEAVE ROCHESTER AND BE IN PRYOR BY 2-4:00 PM ON TUESDAY! WE ARE SCHEDULED TO STAY IN PRYOR UNTIL ABOUT JUNE 21ST. OF COURSE IF SOMETHING CHANGES, WE WILL RETURN SOONER.

FROM ROCHESTER,

BRUCE AND JACKIE

Sunday +81 (11:30 PM)

2006-07-02T23:08:00.000-05:00

Just a short update tonight. Jackie had a good day today. We had our growth factor shot this morning. Upon return to the apartment she was tired and rested for a couple of hours. This afternoon we were able to go on a 4 hour ride over around the Mississippi River and Pepin Lake. We crossed over into Wisconsin and circled Pepin Lake. This is a nice area with lots of small towns and a tourist area. I think every motorcycle in the US shows up at the lake on weekends. We must have see several thousand around the lake.

This evening we watched Lonesome Dove on the Hallmark Channel. This is a summer tradition at Nantucket. Usually on the first night we arrive we watch a Bee Gees concert and the last two nights before departure we watch Lonesome Dove down in the theatre. I'm not sure how this got started, but we've done it for 4 or 5 years.

All-in-all Jackie had a good day. She had some tiredness and a little pain, but better than past days. Tomorrow we have a 7:00 AM hospital visit for blood tests, a 7:30 AM growth factor shot, an 11:30 AM Pentamadine antifungal inhalation treatment (done once per month) and a 1:30 doctor's visit. So busy day. Depending upon her counts we may be released to come home. This time we aren't getting our hopes up, however.

Until later....

Bruce and Jackie
From Rochester, MN

Saturday +80 (11:30 PM)

2006-07-01T23:10:00.000-05:00

Today was day 80. We are 4/5 of the way through the 100 day process. Another month passed today. I knew this not because it the July 1st, but rather because my electronic room key quit working. Of course it quit outside the 2nd floor security door with an armful of groceries. This meant that I had to leave the groceries, go down stairs, out the building, back through the main front door, up to the third floor office, deal with the key issue at the office, and then return to the second floor skyway security entrance and retrieve the groceries before returning to our seventh floor apartment. I hated to buy any more groceries, but Jackie can eat so few things and we were out of anything she likes. Really she doesn't like anything, but she tolerates a few things. I picked up a small watermelon, some cucumbers, and two six packs of Boost (a high calorie milk shake type drink).

We made the trip the the hospital this morning for the growth factor shot. By the time we had returned Jackie was out of energy again. She got back in bed and slept for another 1.5 hours. We then went to the Olive Garden for a late lunch. She was nauseated and ate almost none of the meal. Upon return to the apartment she became nauseated and had a great deal of stomach pain. She took a pain pill as well as some antacids and began to feel better about 7:00. We ended up watching Gone With The Wind for 5 hours. This was the first time either of us had ever seen the movie through to completion.

We will be back at the hospital at 9:00 AM for another growth factor shot. Fortunately she didn't have the excruciating headache. On Monday we will have more growth factor, blood tests, and early afternoon an appointment with the doctor. I suppose if her counts are improved she will have another decision to make with regard to a return home. I don't think either of us will get our hopes up for an early return. Even if we were to return home we would need to find a doctor (maybe her former doctor) to manage her 2 or 3 time per week blood tests. At present she gets her central line flushed with sodium citrate (SC) rather than the usual heparin. This, alone, would create problems. Even here at the Mayo Clinic it is difficult to get the SC flush. We always end up waiting for the pharmacy to mix it and send it to our area of the clinic. In Tulsa it would probably be non-existant. The switch was made from heparin to SC in the hopes that it would not decrease some of her counts. To be honest, I don't think it has made any difference. They have switched anything they could think of that might cause depleted blood counts to something else. For example, we just switched from Doxycycline to penicillin. There is a remote chance that Doxy could reduce white blood cell counts. Hopefully all these changes will result in increasing and steady blood counts.

So not much to report.

Until Later...

Bruce and Jackie
From Rochester, MN

Friday +79 (10:15 PM)

2006-06-30T21:58:00.000-05:00

As we have seen before there are good days and bad days. This was one of those bad days. Due to the new growth factor shots Jackie spent much of the day in bed and asleep. The new medicine gave her a terrible headache, more nausea, a low-grade fever, and flu-like symptoms. These are all side effects of the new brand of growth factor they are using.

Fortunately she improved as the day went along. It was a two pain pill day, but by early evening she had recovered nicely and finished up the day feeling almost normal. Hopefully her body will begin to tolerate the new drug and the symptoms will lessen. She is taking Tylenol to try and stay on top of the headache. It was really intense this morning.

The good news is that her CMV test from yesterday is again negative! As long as it continues to be negative things will improve. Her counts were probably degraded by the extensive Ganciclovir treatments. She is still taking oral Ganciclovir, but at a much lower dose.

I did a pill count this evening to determine how many pills she is taking on a daily basis. Her nightly pill count was only 3 and this prompted me to do a total count for the day. She is down to 23 pills per day! Now that may sound like a lot, but it is down from the nearly 50 at one point. The count would actually be much lower than 23 but she takes 8 magnesium pills per day. For whatever reason she is still not producing much magnesium. This can be partly attributed to her diet. It is almost all liquid (still). If she were eating normally she wouldn't be having much of a problem.

We have another growth factor shot in the morning at 9:00 AM. That's the excitement for the day! With luck, she will feel better with no headache. If she feels OK we may take a drive and look at the mile upon mile upon mile upon mile of cornfields. Maybe someday she will feel really well and we can take a drive over to Austin, MN and visit the Spam museum!

Until Later...

Bruce and Jackie
From Rochester, MN

Thursday +78 (10:30 PM) Update2.

2006-06-29T22:13:00.000-05:00

It appears we will be seeing the fireworks in Rochester this year. They conducted another complete series of blood tests this morning. This included another CMV test and a new one to determine if we can return to the old method of flushing Jackie's central line with heparin instead of sodium citrate. We won't have the CMV test until tomorrow. It will be the third test in about a week and we hope it will again be negative. We received the results of the latest chimerism test and once again it is showing her to be 100% engrafted. This, of course, is good news.

They allowed Jackie to make the decision as to whether to return home until the +100 day tests. They said she could return home if she felt she could get follow-up care in Tulsa. She elected to stay here for a bit longer. Her platelets have taken a recent turn for the worse. Nobody knows why they have declined. They have held steady with levels above 120 most of the time. As most of you know, they have hovered in the 140-150 range for a long time. This morning's tests showed them to be at 76. This could be a fluke. As longtime readers know, we have seen this before with record high numbers and record low numbers that "fixed" themselves on the next day's tests. The problem is that platelets are a good indication if something else is going wrong. If there were an infection, if some GvHD were beginning to take place, if the CMV were to become active the platelets could all be negatively impacted. Therefore, she made the decision to wait and see what a few more days would bring with regard to blood counts.

Her white blood cell count has not recovered to the extent the doctors would like. It currently stands at 1.5 with ANC at .75. This is after 3 courses of growth factor that should have caused this count to increase. The decision was made to change to a different type of growth factor. She will receive 5 courses over the next 5 days. The only problem is the new growth factor can cause fevers. If a fever does develop they will need to treat it as if there is an infection. This means IV antibiotics, blood cultures, etc.

If the counts are good on next Monday she can make another decision as to whether to go home. At this point it almost seems pointless. Her +100 day graduation tests will take place about July 20th. At that point they will do another complete set of tests. This will include a PET scan, MRIs, and a bone marrow biopsy. They will be able to determine if any CLL remains. If so, they will make a determination about how best to proceed. This could involve inducing more GvHD or even infusing more donor leukocytes. Hopefully none of this will be required. As I've mentioned before this entire process will take at least one year to complete. The nurse we met with this afternoon reiterated that she always tells patients to expect a one year disruption in their lives.

Of course things could be much worse. In the waiting room lobby I met the husband of the lady I've discussed before that required two transplants. As readers know I've reported she was doing well. As it turns out she has problems with her second transplant. She is at day +90 and still requires two platelet and two red blood cell transfusions per week. They are now looking at performing a third transplant. They conducted some new, sophisticated tests that show she has a very unusual mixed chimerism. Her killer T-cells are hers, rather than the donor. She received a 9 of 10 match from a sister. They now wish they had done a matched, unrelated donor (MUD) transplant - the type Jackie underwent. If they do a third MUD transplant it would require her to undergo a full chemo/radiation treatment. She is so weak they don't know if she can take any more. You really have to feel sorry for them as she is only about 40 with young children at home.

For the most part Jackie had a good day. It started a little rocky this morning but after some pain meds she did well. She had some nausea this evening, but for the most part the day went well. She is still having difficulty with eating. Most things still don't taste good and the nausea is ever present.

So it appears we will watch the fireworks in Rochester. I hear they have a nice show!

Until Later...

Bruce and Jackie
From Rochester, MN