Sunday +18 (Sunday 10:15 PM)

Jackie received a unit of blood this afternoon. This helped her to feel better. After returning to our apartment I decided to take a short nap. Upon awakening I found that Jackie had moped the floor and was doing a load of laundry. When I mentioned she should take it easy and rest she assured me she felt like getting up and being active.

She continues to run a fever. It does seem that it is moderating. She is still taking Tylenol, but the fevers don't seem to be almost uncontrollable. They also don't seem to come as often. Her temperature is still ranging from 100-102 so it is far from normal, but she is feeling a little better. Her energy level still remains low. She was not able to complete any of the trips to the hospital today without the wheelchair. She was able to walk about 150 yards this evening on the return trip. At that point she rode the chair back to the apartment.

She continues to have a problem with a rash. Some of the rashes have been related to the antibiotics. The current rash may be the beginnings of GvHD. It appears on her hands. Typically the GvHD starts on the palms of the hands and soles of the feet. The current rash is on the top of her hand so it is hard to say what is causing it.

I had the nurses check her cultures this evening. Still nothing is culturing. It has been 2 days for most of the cultures and most serious bugs culture out within 2 days. Sometimes some of the slower growing things take several days but they are usually more controllable. With the level of antibiotics she is receiving it would be tough for anything to grow and thrive!

Until later.

Bruce and Jackie
From Rochester, MN

Sunday +18 (1:45 PM)

We are still at the hospital. We began at 8:30 AM. So far Jackie has had one infusion of antibiotics (15 min), one unit of fluids (2 hours), one new type of antibiotic (15 minutes), one unit of whole blood (2 hours), and we are now waiting on the final bag of antibiotics (15 minutes). In almost all cases these cannot run concurrently; they must run consecutively.

They are trying a new type of antibiotic to see if it will moderate her fever. So far all cultures are coming back negative; including the CMV culture.

Her temperature has also been down this morning . They just took it and it is at 99.4. She is still taking Tylenol every 3 hours so it is unknown what it would be without it.

Probably as a result of her fever her counts have suffered. Her RBC count was 8.4. That is why they gave her a unit of blood. Her WBC count was 1.9. A few days ago it was at 3.0. Her platelet count continues to hold fairly well at 106; but down from 163 a few days ago. Fever burns up platelets, however.

We will return tonight at about 10:30 PM to get her last infusion of IV antibiotics. We will begin the process again in the morning at 8:30.

Until later,

Bruce and Jackie
From Rochester, MN

Sunday +18 (9:15 AM)

Jackie continues to run a high fever. Last night she spiked at 104.1 at 4:00 AM. At this point they don't have any idea why she is running a fever. All the cultures have come back negative so far. Her blood pressure remains good. An altered blood pressure could indicate an infection. It is possible that her fever is still a result of the engraftment or one of the antibiotics. They are going to have the infectious disease doctor take another look at her to see if the can determine what might be the cause. Today she is getting her 3-a-day IV antibiotic infusion as well as another unit of fluids this morning.

The results of the chimerism test is back. Keep in mind it was started earlier in the week (day +13 or 14?). The results show a 60% donor engraftment. They want to see a result in the 90s by day 30 and 100% by day 100. I THINK they are happy with 60%.

I don't have blood counts for today. I will have them by this afternoons IV antibiotics infusion.

Until Later,

Bruce and Jackie
Rochester, MN

Saturday +17 (Midnight)

Jackie continues to run fever. She has taken Tylenol every 3 hours in an attempt to moderate her temperature. It has ranged as high as 104.2. It was 99 earlier this morning.

This afternoon she had another infusion of antibiotics. While we were getting the infusion it was decided that she might need additional fluid with some potassium. What should have been a 30 minute stay lasted nearly 3 hours. We left the hospital at about 5:00 PM. We returned at 9:30 PM for her final infusion of the day. I'm not certain how long she will continue to receive the 3-times-a day antibiotic infusions.

Jackie's blood counts deteriorated today. It is likely due to the fever she is running. Her RBC was 8.9 which is down from 9.8 yesterday. Her WBC was 2.2 down from 3.0 yesterday. Her platelets were 118 down from 163 yesterday. Of course as I've mentioned before some variation is normal. The curve doesn't always point upward. As long as the general trend is upward that is what is important.

Her energy level continues to be very low. She was not able to walk to the hospital appointments today. Each trip required the wheelchair.

This evening her fever seemed to be moderation somewhat. Hopefully she will be able to get a good night's rest. As I write this she is carrying on an unintelligible conversation in her sleep. It may be due to the elevated temperatures. (Note: I just took her midnight temperature and it was 103.0)

By Monday we should have the results of the chimerism test. This will tell us the percentage of donor cells to Jackie's cells. It will be a good indication of how well the engraftment is taking place and at what stage she is in the process. I believe it will also give an indication of when we can expect the onset of the graft-versus-host-disease (GvHD). That will be the next battle. With luck it will not be a serious case of GvHD.

Until later....

Bruce and Jackie
From Rochester, MN

Saturday +17 (11:30 AM)

We returned to the hospital this morning. Jackie will be getting 3 infusions of IV antibiotics per day for awhile. I'm not certain how long this will last, but probably until she stops running a fever.

She fought fevers all night long. It once again rose to over 104 at about 4:00 AM. Tylenol brought it back down. We are trying a schedule of giving her Tylenol every 3 hours.

As a result of the antibiotics she is losing her hearing. The doctors don't know if this is permanent. It seems that some of the antibiotics cause this. As for how much of her hearing she has lost, it seems to be a lot. She is certainly more hard-of-hearing than I am. The TV has to be fairly loud for her to hear it. She cannot hear the "beep" when the thermometer signals it has stopped measuring temperature. The doctors say that if her hearing comes back it will certainly take weeks and probably months.

We are scheduled back at the hospital at 2:00 and again at 8:30 this evening. So far she has not been able to walk. I had to push her in the wheelchair. Hopefully her energy level will improve soon.

The doctors think her fever could be drug induced or possibly as a result of CMV. CMV is short for Cyto-Megalo-Virus. It is a type of herpes virus. CMV can affect almost any organ and cause almost any type of infection. The majority of the population is positive for CMV virus (somewhere between 50 and 90% depending upon who you talk to). Jackie was CMV positive. Her donor was CMV negative. From what I gather, when the white cells begin to produce again the CMV can become active again due to her compromised immune system. If the problem is CMV she will be placed on a new, and different antibiotic. The recovery from CMV can be rather lengthy and present a lot of problems, or as with most of these things it can be very minor. We'll just have to wait and see.

Until later,
Bruce and Jackie
From Rochester, MN

Late Friday +16 (11:30 PM) In and Out

Well, after the last post to the blog Jackie began to spike a fever. It rose quickly to about 104.3 at 4:00 PM. She took 2 X-strength Tylenol and the fever dropped to a little under 100. The Tylenol held until about 8:00 PM. By 10:00 PM she was 102.8 and I called the Transplant Center. They called her doctor and he returned my call at 10:10 PM. He had us go back to the hospital. They drew blood cultures and infused a bag of antibiotics. As you can see, the total time from calling to returning to the apartment was a little over 1 hour. This included 25 minutes of round trip time in the wheelchair to get to the hospital. Her doctor had called ahead and they were waiting for our arrival. Once again, it just shows how efficient they are!

She received 1 gram of Tylenol and her temperature has already dropped. Hopefully it will hold through most of the night. Again, it is likely just a neutropenic fever and the culture will show nothing, but they want to make absolutely certain. Until we have some sort of result on the culture I think we will be returning to the hospital every 7-8 hours for IV antibiotic.

I'll keep everyone posted as we know more.

Bruce and Jackie
From Rochester, MN

Friday +16 (10:00 AM)

I suspected Jackie's counts had improved this morning. She had more energy and was able to walk to the hospital appointment without the aid of a wheelchair. She was a little tired and winded, but much better than yesterday.

We were just completing our appointment when I asked the PA what Jackie's counts might be so I could post them here on the blog. She gave me yesterday's counts. I told her we already had those and I would wait until tomorrow to get today's counts. She thought today's counts might already be on-line so she decided to give it a check. They were, indeed, on-line even though it had only been about 30 minutes since the blood draw. Jackie's RBC went to 9.8. Still below normal but much improved from yesterday. This explained her increased energy level. Her WBC count had jumped to 3.0. This is a very healthy jump. Her platelets went through the roof! They are at 163. This is considered "normal". You may recall that she was below 10 for over a month. A one point we wondered if these would ever recover.
The only bad news is that her creatine levels had risen. This could be the result of too much Cyclosporin, the immunosuppresent drug. In any case, they wanted to give her a unit of IV magnesium and a unit of floods. So... we are stuck in the hospital for about 4 hours today. Other than that, all is well.

Yesterday was also the first day she could resume brushing her teeth in a normal manner. Prior to yesterday she had to use a foam "brush" and a nasty tasting mouthwash.

Well, that's all for now.

Until later.

Bruce and Jackie
From Rochester, MN

Thursday +15 (10:30 PM)

Just a quick note to let everyone know Jackie made it back to the apartment. She was able to walk the 2 block outdoors and under how own power. That was about the limit of her endurance, however. She was tired most of the afternoon and finally went to bed about 9:00 PM. Until her RBC level increases she will continue to be tired.

She continues to run a low-grade fever and has some nausea.

She will meet with the docs again early in the morning. I'll post the result of blood counts, etc.

Bruce and Jackie
From Rochester, MN

Thursday +15 (12:30 PM) Dismissed!

Just a quick note to let everyone know that Jackie will be dismissed from the hospital this afternoon. She will still have her daily appointments, etc.

So as not to gloss over the situation, I doubt she will be able to walk back to the apartment on her own. It is likely she will still require a wheelchair. It will be some days before her strength returns. I don't think it will be long...she wants to go to the Outback for a steak!

She will stay out-patient as long as she has no major problems. This would include fevers, etc. It would not be uncommon for her to have to return to in-patient status at some point. In fact it would not be uncommon for her to need to return several times before the 100 day period ends.

Bruce and Jackie
From Rochester, MN

Thursday +15 (10:30 AM)

I walked into the room this morning and Jackie was packed and ready to leave! It seems the docs have given her hope that she might be headed back to the apartment today. Her sinus CT scan from yesterday was negative. The docs are going to discuss her dismissal as a team. If they say "no" she is going to be disappointed.

Her counts have bounced around a little this morning. Her RBC decreased from 8.6 to 8.5 today. Her WBC decreased from 2.4 to 2.2. Her platelets continue to skyrocket! Her platelets increased from 75 yesterday to 99 today. At this rate she will be "normal" within 4 or 5 days. This probably won't happen as counts tend to bounce up and down. As long as the overall trend is UP then there is no need for concern.

She ran only minor, low-grade fever last night and this morning. I'm going back to the hospital room to await the decision from the team of docs. I'll post if she is released.

Bruce and Jackie
From Rochester, MN

Wednesday +14 (9:30 PM)

Jackie had a sinus CT scan late this afternoon to check for possible infection. As of this writing there was no results from the test. The docs don't think there will be a problem. They said that the CT imaging people usually contact them immediately if there is a problem. If they hear nothing the test is usually negative. In preparation for this possibility that she has no infection and due to the fact that she is having some reactions to IV antibiotics they have elected to remove her from all IV antibiotics. She is now on oral antibiotics only.

I feel certain they would discharge her, but she continues to have problems with minor fevers. She has to remain below 101.3 (38.5 C) for a period of time to be discharged. The probable reason she is spiking fevers is due to cytokine production. Cytokines are the second responders to infection and microbial invasion. The first responders are white blood cells (T-cells). During this stage, our immunity functions properly, and T-cells attack the microbes so they do not get too strong a foothold.

However, the mere presence of T-cells clustered at one site, especially the lungs, alerts other T-cells that a full-scale war has started. In the second stage, even more T-cells, (the cytokines) flood the lungs. This propagates a Cytokine storm where far too many immune cells are caught in an endless loop of calling even more. The cytokine storm ends up inflaming the tissue of the lungs and crowding air passages, causing breathing difficulties. This is probably what was happening when Jackie was having difficulty breathing - a cytokine storm. Of course her breathing is much better, but some excess cytokine production is probably still taking place and that results in a fever. As the excess cytokine production drops the fevers will drop. Again, this all happens as blood counts improve. At least this is the latest thinking.

An interesting side note is that Jackie has a fresh-start immune system. This means she has no immunity to any type of flues, colds, chicken pox, mumps, measles, etc. etc. etc. About a year from now she will have to undergo childhood disease shots. These are the same ones your kids get when they start school! Most people don't realize in a stem cell transplant this takes place. Now you can see why she will so easily get sick if exposed to new germs.

As people go through life they contract various and sundry coughs, colds, flues, etc. Over a lifetime you develop immunities to these so when you are exposed a second time you don't get sick. That is why kids are always sick. It is the first time they've been exposed to the new "bug" at school. The kids get sick but mom and dad stay healthy. In Jackie's case she will get sick...just like the kids. So, she will need to be very careful. Kids are young and resilient and bounce back from the various ailments. Older people do not. So, when she gets back home if you even think you've been exposed to something stay home.

I just rode the elevator down and walked with a man whose wife just completed her 53rd surgery! She has a rare form of arthritis. I mentioned to him what I posted yesterday regarding my conversations with the docs and the use of stem cell transplants to cure autoimmune diseases such as arthritis. He found it interesting and said he would talk to their doctor about the process. I doubt the docs would consider such a move since the surgery is not life-threatening. Certainly the stem cell transplant would be. He said after 53 surgeries she might want to take the chance. He was from Illinois and said the docs there had no idea why her arthritis was so severe. It was here at the Mayo they discovered she had an extremely rare form of the disease. It seems the 53 surgeries have taken place over quite a few years. As I've said before, I fully believe if you came here with a complaint of "constant sneezing while climbing ladders on Fiji" they could find a doctor that was a world-renowned expert on that disease.

Until Later,

Bruce and Jackie
From Rochester, MN

Wednesday +14 (10:15 AM)

The docs were just in to see Jackie. They are very pleased with her progress. Her counts continue to improve. Her RBC count moved from 8.4 yesterday to 8.6 today. Her WBC count moved up another couple tenths of a point to 2.4. Her platelets have skyrocketed! Today they are 75! Up from 50 yesterday!

They have discontinued all but one IV antibiotic. She still receives this infusion every 8 hours. They are going to do a sinus CT scan today to see if she has any sinus infection . She mentioned to the infectious diseases team that her ears were stopped up yesterday. As her neutrophil level continues to improve they will begin to worry less about any stray bugs that she might pick up.

I asked when they might conduct a chimerism study. A chimerism study determines the ratio of donor cells to host cells. It provides a roadmap as to her progress. They are going to do a peripheral blood cell (PBC) study today. The results won't be available until about Monday. I'm not certain where she should be at this point, but a 30-50% would be nice. A lot of patients have a 100% chimerism number by day 100.

I just spoke to the man who's wife had not engrafted in over 26 days. They were preparing to do another transplant this morning when the doctor received a page from the lab. They were literally about to insert the needle. The lab said her white blood cell count had risen to .5. They think it could be signs of engraftment so they cancelled the transplant. His spirits were improved in hopes something was taking place.


Well, that's all for now. Jackie is feeling well this morning. Her energy level is still quite low but improving slowly.

Bruce and Jackie
From Rochester, MN

Tuesday +13 (12:30 PM)

Well, I'm a little late updating the blog tonight.

Not a great deal to report. Jackie had a CT scan today to check for fluid on her lungs. The scan showed a small amount, but nothing that greatly worries the docs.

She was tired today due to her low RBC count. She continues to have problems with fluid buildup but it seems to be getting better.

A good part of the time her lower legs hurt a great deal. It is often difficult to sit on the side of the bed or sit in a chair. Jackie I think discovered the problem on her own. She says that since the donor was a 29 year old male her legs must be getting longer. The pain is coming from her legs lengthening:) She is thrilled :)

I spoke to the doc today about the stem cell conversion process. Since the process cures autoimmune diseases Jackie would have also been cured of any arthritis problems she might have had. If stem cell transplantation ever becomes "safe" it could be used as a possible cure for rheumatoid arthritis or other autoimmune type diseases.

Until later.

Bruce and Jackie
From Rochester, MN

Tuesday +13 (11:00 AM)

Jackie's counts continue to move forward! Her RBC (hemoglobin) level has retreated a bit, but that is the last count to recover.

The results are: RBC 8.8 to 8.4. WBC count 1.9 to 2.1. And the hero of the bunch platelets! Platelets 35-50!

The docs were in this AM and they feel Jackie's fevers may be partially due to her antibiotic treatments. They are going to discontinue her Vancomycin. I believe the intent is to take her off all IV antibiotics and use the oral forms of common antibiotics.

I haven't mentioned this, but Jackie retained much of her hair during this process. While it has certainly thinned, it is still very much there.

She continues to still have problems with fluids. With the discontinuance of the IV antibiotics this will help some. They continue to treat her for fluid reduction. Part of her difficulties may be due to imbalances in the electrolytes. As things become more "normal" the electrolytes will return to normal levels.

Until Later....

Bruce and Jackie
From Rochester, MN

Monday +12 (10:00 PM)

Jackie continues to receive her IV antibiotics. This afternoon she spiked a fever of about 102.2. Fortunately it did not last long. This evening she received her Vancomycin treatment. This has gone from a twice-a-day treatment to once every 24 hours. It became clear that this is the antibiotic that is causing her rash and some of her problems. After they began the infusion Jackie turned quite red. She had some congestion and swelling. Once the treatment ceased she went back to normal within about 2 hours. The physician's assistant thought they might discontinue the antibiotic due to Jackie's improved blood counts. It will be a topic of discussion tomorrow.

Jackie also received an infusion of albumin. This will cause the extra fluid to flow from the tissues back into the blood. Combined with Lasix it should help eliminate some of the excess fluid Jackie is experiencing. As of today she had lost about 2 of the 20 pounds in fluids that were put on over the last week. I think this will get better as the days pass. Her kidneys are returning to normal.

Her biggest complaint is lack of energy. This is mostly due to the lowered red blood cell count and the reduced amount of hemoglobin (the oxygen carrying component of the blood). Less oxygen means less energy. I believe once her RBC count returns to the 12-13 range she will feel much better.

Well, that's all for now.

Until later.


Bruce and Jackie
From Rochester, MN

Monday +12 (12:30 PM)

I'm a little late in posting today. The blog site was not responding.

Jackie continues to run a bit of fever. Her latest temperature was 101.6. Since this is above the magic threshold they drew blood for cultures. They are also going to send in a doctor who is a specialist in infectious diseases. They don't think anything is abnormal, but the are being cautions.

Jackie's counts continue to improve. Her RBC count is the exception. It dropped to 8.8 today. Therefore she has had a decrease in energy levels. The RBC level is typically the last to recover and tends to fluctuate. Her WBC count is 1.9 and is improved from yesterday. Her platelet count has improved dramatically. It is now at a 35. I believe if her RBC count improves to a 12 or better she will feel much better and recover quickly. It is possible they will transfuse red blood cells today. The low-end cutoff is 8.0.

They have changed one of the antibiotics again. I believe one of them is responsible for her continued rash. She had a visit this morning from 4 dermatologists. The results from the skin biopsy were inconclusive.

Well, that's all the news that's fit to report.

Until later.

Bruce and Jackie
From Rochester, MN

Sunday +11 (8:15 PM)

Not a great deal new to report. Jackie continues to run a low-grade fever. Currently it is 101.6. This is above the threshold of 101.3 so they continue to treat her for infection with antibiotics, etc. With a fever above 101.3 they conduct blood cultures every 48 hours. Since one was done yesterday they did not do one today. If the fever continues tomorrow they will do more cultures and X-rays.

Jackie's neutrophil level is 731. They consider 500 a threshold level. Below that number they consider you to have no immune system. As this number improves so will her ability to fight of opportunistic infections.

The doctors are VERY pleased at her progress! The fact that her platelet count continues to climb in the face of a fever is a good indication that things are going well. If she had no infection or fever the count would likely climb even faster.

She continues to have difficulty with fluid retention. It seems to be getting better, however. I don't believe the docs have given her any Lasix today. Her kidneys seems to be working OK ,there is just a long way to go to get back to normal.

Her appetite remains good. She is talking on the phone on a limited basis to the kids - another good sign.

Well, until later.

Bruce and Jackie
Rochester, MN

Sunday +11 (11:00 AM)

Well, I didn't update the blog last night. There weren't a lot of changes since the 1:30 PM report. Today is another beautiful Spring day in Rochester!

Jackie did well last night. She continues to have problems with fluid. She is still retaining a lot and it refuses to come off. This morning her face had significant swelling. As the day progresses it seems to be getting better.

Her counts continue to improve for the most part. Her RBC count did drop a bit from yesterday. It is down to 9.6. It is normal to see some fluctuation on all the counts. The most important count at this point is the WBC count. It rose from 1.5 yesterday to 1.7 today. The WBC count largely determines the neurtrophil count, so a rise in WBC count means her immune system is improving.

Her platelets also rose to 26 today. For me this is good news because it was the platelet portion of her blood she had so many problems with last fall. At one point she was at 2 for her platelet count. Normal is more than 150.

As I write she is cooing over some cute origami bunny rabbits sent by Inj-jen Shih. They will join the swan by the TV set in the apartment when she returns. She has a whole family she can place on her window shelf. She also receive a selection of teas. Thank you! She was getting tired of the standard Lipton teas they have here. Tea and water have been one of the few things she felt like drinking.

She spoke to the kids on the phone last night. That tells us she is getting better:) She still doesn't feel like talking to anyone on a regular basis, however. So if you can please hold the phone calls just a little longer she will appreciate your patience.

Until later,

Bruce and Jackie
From Rochester, MN

Saturday +10 (1:30 PM)

Jackie continues to run a low-grade fever. Once again it hit the "magic" number of 101.3. At this number they do blood cultures and chest X-rays to make certain nothing serious is happening in the way of an infection. Just after her temperature spiked we learned why she is running the fever. It seems she has a very common and very slow growing staph infection. She has had it all along. It took days for a culture to finally show up in the Petri dish. The docs are placing her back on Vancomycin. They had withdrawn it several days ago when her original cultures failed to produce anything in the first 72 hours. The staph bacteria is a very common one most often found on your skin. They are not worried about the infection at all, but she will remain on the Vancomycin IV drip for 10 days. For that reason I'm not certain if she can go out-patient.

I think one of the reasons they are not too worried is because her neutrophils have risen above the 500 level. This is the part of the blood that is active in fighting off invading germs and foreign organisms. With the increased level of neutrophils her body will able to help mount its own defense. They have really been impressed with her quick engraftment and blood count recovery! Her fluid problem continues to slowly resolve itself. The fluid is slowly coming off; but not as fast as it went on.

Jackie wanted me to let everyone know she appreciates everyone's thoughts, cards, letters and prayers. She asked that you keep another patient her in your thoughts and prayers. I mentioned them on the blog a few days ago. She came into the Mayo from Ohio with CML (another, more serious form of leukemia) and was very sick. She received a transplant and is now +23. I saw her husband again this morning and he asked how Jackie was doing. I sheepishly told him she had engrafted at +8. His wife still has not engrafted and is very sick. Her WBC count has not been above .3 since the transplant. She had terrible problems with her mouth and throat and cannot eat anything. Although her husband (about 40 yrs. old) is always optimistic it has to be discouraging that someone like Jackie engrafted in only 8 days.

There are a lot of sick people around the floor. Fortunately most of them seem to be getting better!

Until Later...

Bruce and Jackie
From Rochester, MN

Saturday +10 (9:45 AM) Yup

Yup, it's engraftment! The docs officially came on board this AM and concurred with my diagnosis. Jackie's RBC count improved from 10.3 to 10.7. Her WBC count improved dramatically from .8 to 1.5 - a near doubling in one day. He platelet count improved from 24-25. The RBC and platelet count improved without additional transfusion!

She is continuing to work off fluids. She is feeling better with a much improved appetite.

The dermatologists aren't sure what is causing her rash. They stopped by this morning and stopped short of calling it early GvHD. They are awaiting lab results.

So today the news is good!

Until later,

Bruce and Jackie
From Rochester, MN

Friday +9 (10:00 PM)

Not much to report. Jackie is still having difficulty with fluids but things are improving. She lost slightly less than 2 pounds today. They continue to give her Lasix to try and reduce the fluids. They also added another drug in pill form to see if they could get a better result.

As a result of the fluid she continues to have difficulty breathing. She is almost always short of breath. Today she is better, however.

Again, she continues to sleep a great deal. I don't know if they will release her tomorrow or not. To me it seems a little early. I think another day or so might be best. But being out-patient will cause her to be more active which in turn is probably best.

I'll keep everyone posted.

Bruce and Jackie
From Rochester, MN

Friday +9 (5:15 PM) Cardio

Just a quick note to say that the docs say Jackie's echocardiogram was OK. No problems. Her rash continues to get worse. It isn't painful and doesn't bother her. It simply looks like she has a sunburn. Will know tomorrow on the results of skin tests. I'm 99% sure it will come back as preliminary GvHD.

Bruce

Friday +9 (4:00 PM) Food and Phone

Just a quick note. Jackie is doing better. The docs doubled the amount of Lasix and she is responding to the increased dose. Hopefully the fluid retention will soon be a think of the past.

To make certain things are OK they gave her an echocardiogram this afternoon. I don't know the results. I'll post something as soon as I know anything.

Jackie has a rash that seems to come and go. It could be a rash caused by antibiotics or it could be the beginnings of some graft versus host disease (GvHD). If it is GvHD that is good. You need a certain amount of GvHD in order to kill of the CLL cells. This is what causes the cure for her disease. In fact, if the patient doesn't show enough GvHD they will back off the anti-rejection drugs to increase the disease. The goal is to get just enough disease to kill the CLL cells and then have your body return to more-or-less normal with no long term GvHD. It is a delicate balancing act.

Just as I write this from the apartment Jackie called (her first phone call so we know she is on the road to recovery) and asked me to bring over Club crackers, cheese, Peeps candy, and Twizzlers candy!

She told me that in the 1.5 hours I've been gone they came in and did three small skin biopsies. This will tell them if she is having a reaction to meds or the beginnings of GvHD. The doc taking the biopsy felt it was GvHD. Of course, GvHD can be a very serious situation. She still has a long way to go!

She also said the head of the cafeteria/patient kitchen showed up to apologize for the poor food fare. They wanted to know if the food in the Frequent Flyers Club was better. I wish I had been there to give them my input! We all know Jackie was too nice - something I'm not necessarily known for!

I would have told them that I had a lunch from www.homebistro.com (thanks to my brother and his wife) that was cooked, frozen, flown halfway across the US, heated in boiling water in a tiny apartment in Rochester MN and that tasted as good as anything you might find in a 5 star restaurant. My question would have been, "Why can't you do better?" The technology obviously exists!


Until later,

Bruce and Jackie
From Rochester, MN
PS. For what it's worth the folks at www.homebistro.com have a heck of a business model. I think they will do well.

Friday +9 (10:00AM) Engraftment!

Well, I think even at this point the docs are ready to declare "engraftment". Jackie's WBC count bumped up to .8 this morning! This, from a .4 yesterday. Her RBC count is 10.4 (up from 7.9 yesterday). Her platelets are at 24 from 17 yesterday. The platelet and RBC count isn't significant because she received infusions of both yesterday. I suspect they will wait a day without any new infusions to she where the counts stand. Typically it is the WBC count that first comes back followed by RBC and platelets. The platelets can take months or more to return to normal levels.

To me the best indicator that something is taking place is her appetite. This morning she ate 2 boxes of Cheerios with milk and 1/2 of a blueberry muffin. Everyone her has stated that when the appetite returns it is always a good sign engraftment is taking place. Jackie is VERY early in the process for this to happen. The man who just finished using this computer has a wife who underwent a transplant for CML. His wife is +20 and no engraftment. She is also unable to eat. She may be one of the few that never engraft. This happens in up to 10-15% of the cases.

Jackie is still fighting the fluid issues. I believe she is better , however. She seems less "puffy" to me.

They are talking about moving her back to outpatient status tomorrow. I think they will definitely do this if some of her fluids come off today and tomorrow.

Until Later,

Bruce and Jackie
From Rochester, MN

PS> Jackie just scared the dickens out of me! She walked up behind me as I posted this message to the blog from the family room down the hall. She is up walking the hallways!

Thursday +8 (10:30 PM)

Just a quick post to update Jackie's condition. Her temperature has returned to near normal levels. However she continues to have problems with fluid retention. Her kidneys are functioning, but not to normal levels. Her levels continue to build. She is having difficulty breathing and requires oxygen. Some fluid buildup in her lungs is occurring. Hopefully this will resolve soon. Pneumonia is a danger when this happens. With no immune system it is, of course, quite dangerous. The docs and nurses don't seem too concerned. In fact one nurse said they only get concerned when people retain far more fluid than Jackie. Since her entry into the hospital a few days ago she has gained 22 pounds - all fluid. I'm sure she won't be happy when she finds out I posted this on the blog. So...don't tell her until she is well enough to laugh about it:)

With luck her cell counts will continue to rise. I feel there is some engraftment taking place. Her appetite was good this evening. She was able to consume a large bowl of soup with extra crackers. Once again this meal was from the "Frequent Flyer's Club" menu. It actually looked and smelled good. I cannot decide if I should pass on this secret info to other patient's families. I'm afraid a riot might take place if some of the long term folks find out better food existed and they were only a complaint away from being able to partake!

Bruce and Jackie
From Rochester, MN

Thursday +8 (2:00 PM)

Just a quick update. Jackie's temperature continues to be about normal. Her last reading was about 100 degrees. She is having problems with breathing due to fluid retention. A few minutes ago they placed her on oxygen to get her blood/oxygen levels back to normal. They are also giving her drugs (Lasix) to help with the fluid retention. This morning she received a unit of platelets. This afternoon and this evening she will receive two units of red blood. She has developed a rash. It is likely due to some of the antibiotics. The one believed responsible has been discontinued and another substituted. All-in-all she is doing better. I think if we can whip the fluid retention problem she will feel much better. I did the calculations this morning and she has gained 17 pounds in 3 days. All the while eating about 500-800 calories (at best) per day. The gain isn't surprising since they've had 2-3 bags of some fluid hanging since her arrival.

Yesterday I complained about the food at the Mayo Clinic. The noon meal was disgusting! Since each meal receives a nutrition ticket that is used to track food and fluid intake by the nutrition department I left them an equally disgusting note. The note didn't start well and it didn't end well. The last sentence suggested the head of nutrition at the Mayo Clinic be fired-TODAY!

The nurses read the note and cheered us on. It seems they get many complaints and they all agree the food is horrible. A couple have gone so far as to plead with me to write a letter, etc. My note got passed up the chain and we had visits from a bunch of official looking people. This morning we were let into the "secret nutrition club". It seems that the docs and nurses have their own special cafeteria and their own special menu. Some lady showed up this morning and said that since we were now members of the "Mayo Clinic Frequent Flyer Club" we could order from this special menu. So I ordered lunch today. It still isn't lunch at the Ritz, but it is much better. I knew that the employees couldn't be eating the slop they were passing off for food.

And, I just returned to the apartment and found my brother and his wife Janees had sent an entire ice chest of gourmet food! I received an ice chest full of frozen gourmet bistro meals. There were so many they nearly wouldn't fit in the freezer! I'll save them for when Jackie gets back to the apartment. They look great! Thanks!

Bruce and Jackie
from Rochester, MN

Thursday +8 (10:00AM)

Engraftment? Don't know, but Jackie's WBC count rose to .4 this morning. This, combined with the fact that her fever is lowered and her appetite is better leads me to believe that perhaps some engraftment is taking place. This would be VERY early in the process as it usually takes 2 weeks or so. The doctors also think it is possible but they will not declare "engraftment" until they get several days of test results.

Jackie is still retaining fluids. She has gained between 15 and 20 pounds during her brief stay. This, in spite of eating almost nothing. Hopefully this will resolve in a few days.

She will be receiving both platelets and red blood cells in a few minutes. Her RBC count is 7.9. Her platelets are at 17.

Bruce

Wednesday +7 (10:00 PM)

Jackie continues to do better. Her temperature has been running between 100 and 101. They have taken her off IV fluids for a short period of time. This evening she watched TV and was awake until 9:45 PM. I will report again in the morning.

Bruce and Jackie
From Rochester, MN

Wednesday +7 (7:30PM) Improvement

When I returned to Jackie's room about 4:30 PM I found her sitting in her chair reading a book! Her fever has dropped dramatically to around 100 and she is feeling much better! A sure sign of improvement is the fact that she asked for a Pizza Hut thin crust veggie pizza. I had one delivered to the hospital and she ate two slices. She also asked for a Pepsi to wash it down. She said the pizza still didn't taste right but it was OK. I can tell you that two days ago the mention of a pizza or the sip of a Pepsi would have caused instant nausea.

She is still retaining fluids but hopefully this will resolve within a day or so.

She is still a long way from OK, but it is encouraging. I asked if she felt like making a few phone calls (the real test of her health) and she said that she wasn't ready just yet.

She is now resting comfortably and watching TV.

Until later,

Bruce and Jackie
From Rochester, MN

Wednesday +7 (2:30 PM)

I just left Jackie to return to the apartment for lunch. Jackie's fever has dropped some (about 101). She feels better and was able to take a very short walk down the hall. She ate a small amount of lunch. She is receiving IV antibiotics around the clock. This morning she received an infusion of platelets and magnesium as well. Things could be worse with regard to IV infusions. This morning I was them using an IV tree with 2, 3 stage infusion pumps. In other words they could run in 6 separate IV lines at once. So far they've always managed to infuse Jackie with a single 3 stage pump.

I spoke with the charge nurse and asked what was typical for this type of fever. I got the usual, "Well everyone's different" speach I was able to determine that 48 hours for this type of situation is very normal. I also commented on the high fever of over 104 last night and how it could be dangerous. I was told that her temps weren't really all that high for patients of this type (they see 106) and that high fevers in adults are not all that serious.

They went on to tell me about a study of marathon runners. It seems that a marathon runner has a rectal temperature of nearly 106 after a race. My only comment was that anyone who could convince marathon runners to provide a rectal temperature after a 26 mile race missed a calling in the sales profession somewhere!

Bruce and Jackie
From Rochester, MN

Wednesday +7 (10:30AM)

Jackie has been asleep most of the morning. They give her Benadryl to premedicate her before some of the antibiotics. They also gave her Demerol throughout the night. From what I can gather her night wasn't good. Her highest temperature was 104.4. This morning it is running about 100-101 so it is much better. She is retaining fluids and they are hoping she will begin to stop retention.

Her counts continue to drop. He RBC count was 8.8. They begin infusing red blood cells at 8.0. However they may withhold these due to her fluid retention. Her WBC count is .2. I was surprised it wasn't .1 (the lowest they usually record). Her platelets are 20 which is good. A fever tends to deplete platelets. I'm sure they will continue to infuse platelets. They like to do so when her temperature is on the decline.

She was able to eat a small breakfast of milk, Cheerios, and half a banana.

When she is awake she is in good spirits. In fact, you wouldn't realize she has a fever.

I spoke with the nurse this morning and, again, she says this is very normal. The nurse last night told me they don't really know why many people develop fevers. They think it is a result of the struggle inside the body of the new cells replacing old cells and beginning the engraftment process. It is important to remember that the new donor stem cells are in the process of killing off any remaining cells Jackie might have which includes the CLL cells. The process goes on for most of the 100 day process. By the end of 100 days most patients have 100% of their cells converted to donor cells. By day 55-60 the process is 60-80% change. So there is almost a 1-to-1 correlation. With each day that passes 1-1.5% of her cells are converted to donor cells. You can only imagine the process that must go on within the body!

I'll update again later today.

Bruce and Jackie
From Rochester, MN

Tuesday +6 (10:30 PM)

Well, we only thought Jackie was sick a few days ago. Today was not a good day. She slept a good part of the day. When she wasn't asleep her fever was either going up or coming down. It is ranging from 101 to 103.6. They can only give her Tylenol every 4 hours. It is very effective at bringing her fever down - but only for a few hours. Then it starts rising again. At this point she gets uncontrollable shakes. They become so bad she cannot hold anything in her hand. The entire bed shakes. To stop the shakes they give her IV Demerol. The Demerol puts her back to sleep within 2-3 minutes. About 9:15PM she became sick and threw up for the first time.

The doctors and especially the nurses all say this is normal. The nurse this evening said that if this were not happening something would be abnormal. I suppose that is the good news.

Jackie has been very lucky in that she has not had major problems with her mouth and throat so far. Many of the patients get ulcers in their mouth or throat and cannot eat or drink. In Jackie's case she is drinking reasonably well. Food tastes like cardboard. Things could be worse.

Well, it is late. I'll update several times per day while she is in the hospital. I've had several people ask if it would be alright to call. At this point there are few times when she could take a phone call. I would ask that everyone hold their calls for a few days or so. I'll post when she is feeling better. As we all know she loves to talk on the phone so the most likely sign of her recovery will be that she wishes to place a few phone calls:)

Bruce and Jackie
From Rochester, MN

Tuesday +6 (5:15PM)

Just a quick update on the CT scan...the doc just came in and said everything looked fine. He also said her lymph nodes had shrunk. Also good. The reason for the fever is unknown, but very "normal".

I've been wondering how many people are reading this blog. Since I cannot include a counter, could you please click on the "X (a number)comments" button at the bottom and just enter "I read" and hit "post comments". I posted an example post for you to see. Don't use the pencil or envelope button.

I thought it might be interesting to let Jackie know how many people are following her progress. Feel free to leave your name or initials if you like. You don't have to do this as it will simply post as "anonymous".

Thanks

Bruce

Tuesday +6 (1:30 PM)

Not a lot has changed. Jackie continues to sleep most of the time. She is still fighting a fever. It ranges from 100 to 103. They continue to infuse antibiotics and platelets. To control the fever and shakes they gave her an IV infusion of Demerol. It put her to sleep immediately.

The doctors were in again and they feel this is still "par for the course" and that nothing unusual is taking place. They don't seem terribly concerned. The nurses are the same. Jackie will undergo a CT scan today. She had another chest X-ray this morning. In comparing it to the one from 2 days ago it appeared the same. They thought there might be a slight shadow on it which would indicate some pneumonia...but they didn't think so. They are going to do a CT to make absolutely certain. As soon as I know something one way or the other I'll post it.

I spent about 45 minutes in the family room talking to another guy and a set of parents. The parent's son had undergone a transplant 11 days ago. The other guy was a little younger than me and his wife was +18. The lady that was +18 had still not engrafted, but the guy that was +11 felt that he began engraftment today. He was up and around and "feeling much better". It just shows how variable the process can be. Both of these people came into the transplant process very sick; far sicker than Jackie.

Until later,

Bruce and Jackie
From Rochester, MN

Tuesday +6 (AM)

Jackie ran fever all night last night. She also had uncontrollable shakes a good part of the night. Her fever broke about 6:00 AM and she is feeling good this morning. She actually ordered a big breakfast and seems hungry. They plan on giving her Demerol if her shakes return. If I'm not mistaken this will make her very sleepy. She is getting constant IV fluids and nearly constant antibiotics. She has gone back to Vancomycin with a couple other exotics thrown in for good measure. Her cultures are still normal. The fever is likely neutropenic. The docs and nurses feel this is "par for the course" and don't seem to concerned.

Her counts continue to drop. Her RBC count is 9.9. At 8 they begin red blood cell transfusions - so probably by tomorrow. Her WBC count is .2 and by tomorrow will likely be .1 (which is the same as a zero). Her platelets are 23. She is already receiving platelet transfusions. By tomorrow she will probably be officially "crashed". Her counts will likely be about as low as they will go. They will remain at these levels for at least another week to 10 days.

I'll update again later today.

Bruce

Transplant Monday +5

Well, Jackie is now in-patient. She had a rough day today. She began the day with high fever, vomiting, and nausea. She didn't have the energy to walk to the hospital for her morning appointment. She required a wheel chair.

Upon returning from the doctor's appointment she spent most of the day sleeping. The anti-nausea meds make her sleepy. Before infusions they pre-medicate with Benadryl which makes her VERY sleepy. Her fever continued and she often had uncontrollable shivers. Tylenol helped and about 4:00 PM she began to feel better. Her fever was still high (about 102) but the shakes disappeared and she felt like walking to our 5:30 appointment.

The doctor's examined her at the 5:30 appointment and decided to change her antibiotics. Unfortunately the new antibiotics are a three-a-day regime. Rather than having her come to the hospital at 8AM, 3PM, and 11PM they decided to admit her. They will likely give the new antibiotics until her counts begin to return. With a mini-allo transplant this could mean 10 days to 2 weeks in the hospital. The good news is that her blood cultures have (so far) not shown any problems. This is a common problem. Sometimes the cultures don't show anything, yet an infection exists. Many times the problem is neutropenic fever. I discussed this in last night's blog. The docs take the cautious approach and throw every antibiotic they can think of at the problem, "just in case".

Her counts continue to deteriorate as expected. Her RBC was 11.1 (actually still good). Her WBC count was 0.3 (soon to be zero). Her platelet count was 25 (good for this point in the transplant). She received a transfusion of platelets this evening as well as an infusion of magnesium and at least 3 different exotic antibiotics. At one time I counted five bags hanging on the IV tree with a 3-pump infuser running into both of her central lines. She also received IV fluids to raise a low blood pressure.

This all sounds serious...and it is. But it is not totally unexpected. This is a fairly standard situation. The nurses feel this isn't really an unusual situation. From what I can gather, probably 90% of the transplant patients go through these types of difficulties. In Jackie's case where the transplant is allogeneic (someone else's stem cells) probably 100% of the patients see these types of difficulties.

For those who were worried about our tiny, uncomfortable loveseat that Jackie was complaining about I managed to get it changed to a sofa today. A trip to Linens And Things provided an ugly sofa cover and a big, nice, fat, comfortable pillow. She was able to spend part of the afternoon stretched out asleep on the couch instead of the bed.

If anything changes I'll keep everyone posted through the blog. While she is in-patient I may update the blog several times per day depending upon her condition.

Until tomorrow,

Bruce and Jackie
From Rochester, MN

Transplant Sunday +4 (Where's Bob?)

The day began with rain. It wasn't until about 3:00 PM that the sky began to clear and the day became sunny and nice.

Jackie was really "out of gas" this morning. I had to push her to the morning appointment in a wheelchair. She was able to return on her own power. The morning appointment went OK. Because of he stomach pain they prescribed Oxycodone. I believe this is the "Rush Limbaugh" drug and is the same thing as OxyContin. So far she hasn't had any more stomach episodes and hasn't needed any of the heavy-duty painkiller.

This afternoon Jackie began to run a fever. She had fever and chills and at one point her temperature exceeded the transplant center's threshold temperature of 101.3 degrees. The highest measurement I received was 101.9. I called the transplant center and they had me bring her in immediately. Once at the hospital her temperature fell to about 100. They began her on a long-term course of IV antibiotics. They also did blood cultures and took a chest X-ray. From now until her counts begin to rise (2.5-3 weeks) she will get twice-a-day IV of Vancomycin plus another IV antibiotic that I didn't recognize.

The transplant team assures us this is all quite normal. They told us it would be highly abnormal if this had not occurred. It is possible she has some type of infection but it likely she does not. They will have some type of idea when blood cultures come back in about 48 hours. Most of the time there is not a problem. The body, through a self defense mechanism, realizes that blood counts are very low. It goes into a self-defense mode and says, "I need to raise the body's temperature to fight off any bad germs since I don't have any white blood cells to do the job." This is referred to as a neutropenic fever. The IV broad-spectrum antibiotics are a preventative. Jackie will receive two IV infusions every day (8 AM and 7 PM).

Today I had a brush with greatness. While going to the pharmacy to get Jackie's prescriptions filled I was going through the subway system between the various buildings when I ran into a very well dressed lady. We were in a tiny, obscure hallway and walking toward one another. I thought I recognized her. I said, "Hello, how are you today?" She replied (with a big, bright smile), "Just fine, happy Easter and how are you today?" with a southern drawl. I replied, "Just fine thank you!"

The well-dressed lady was Senator Elizabeth Dole, wife of former Senator Bob Dole - the original Viagra spokesman. Of course this begs the question, "Where's Bob?" I'm fairly certain I say Liz go into an office marked "ED Research Center" :) :) :) I guess that explains the smile:)

Bruce and Jackie
From Rochester, MN

Transplant Saturday +3

Today was another nice day in Rochester. Spring is in the air. Tonight rain with thunderstorms are predicted.

Jackie had a good morning. She felt reasonably well until early afternoon. The doctor's appointment went well with no surprises. I don't think I've mentioned this, but she gets a shot of Fragmin each day in the stomach. Fragmin is a blood thinner. It is given to keep her blood thinned so as to avoid any kidney problems. She is scheduled to get these shots daily for the next 100 or so days. As you might imagine it is not much fun getting a shot (even if it is a subcutaneous) each day.

This afternoon the only thing she felt like eating was a steak. We went to a local restaurant and she ordered a steak. Unfortunately it did not agree with her stomach and she was only able to take a few bites. For the rest of the day it caused problems and she fought nausea all day. By late evening she was better but I think she will have to stick to soft, easy to digest, foods. The problem is nothing looks, smells, or tastes good. Tomorrow I have to begin keeping a log of everything she eats or drinks. This will allow the nutritionist to calculate the caloric intake.

I forgot to mention, but yesterday was our one month anniversary in Rochester. I guess the good news is that it doesn't seem like a month. Perhaps the remaining 97 days will go as quickly.

Jackie's blood counts mostly continue to drop. Today her hemoglobin was 12.3. This was actually up from yesterday's 11.8. However, her white blood cell (WBC) count was down to .7 from yesterday's 1.0. Her platelet level dropped from 80 to 61. Just as a reminder she will receive red blood cell (RBC) transfusions when her hemoglobin drops below 8.0 and platelet transfusions when her count drops below 20-25. It is likely she will require platelets soon.

One of the problems she experienced last October and November was thrombocytopenia. Her platelets fell to as little as 2 and remained under 10 for quite a long time. At the time we did not realize how dangerous this condition could be. Unfortunately the doctor in Tulsa did not impress upon us the gravity of the situation. Looking back I realize how shocked I am by how little the man knew about Jackie's disease!!! The Internet is a great leveling tool. With some time and research it is possible to know as much about a subject as someone who is a supposed expert. The lack of knowledge by the doctor in Tulsa was inexcusable and verged on the edge of medical malpractice - in my opinion!

Until tomorrow...

Bruce and Jackie
From Rochester, MN

Friday Transplant +2

Today was another beautiful day in Rochester. The temperature was about 75 and it is beginning to feel like Spring!

Jackie felt well this morning. We went to daily doctor's appointment for blood work and consultation with the transplant staff. The physician's assistant said that Jackie looked better today than yesterday.

Upon returning to the apartment Jackie began to get ill again. The nausea and diarrhea returned and lasted a good part of the day. About 4:00 PM the transplant center called and asked that we return. It seems Jackie's magnesium level was low. This is in spite of the fact that she is taking magnesium orally. They gave her an IV infusion. It took about 1.5 hours. Upon returning to the apartment she felt reasonably well. Later in the evening the nausea returned. They tell us they may remain a problem for a long time. Perhaps even after the 2-3 week engraftment process.

Her blood counts continue to drop. They haven't "crashed" yet, but it is likely they will in the next 3-4 days. Currently her hemoglobin count is 11.8. Normal (for females) is 12-15. Her white blood cell (WBC) count is 1.0. Normal is 4.5-11 (ideal for Jackie is about 7). Her platelet count is 80. Normal is above 150. Jackie was as low as 2 last October.

The will infuse red blood cells if (when!) her hemoglobin drops below 8.0. They will infuse platelets when the count goes below 20. Her WBC count will drop to 0.1 (essentially a zero). Until the counts begin to return to normal she will have difficulty eating because her GI tract cannot be repaired.

She still has her hair. It continues to thin - but not a lot. She will lose it all, however. It is likely this will happen over a 12-24 hour period. It is expected to happen within the next 3-4 days.

All-in-all she continues to do pretty well. The rapid decline has not been as rapid as either of us had expected. Of course she is very ill, but she is not totally bedfast (yet) and is handling the situation well. It is almost certain to get worse, but how much worse is still uncertain. Her biggest difficulty is, and will continue to be, eating and nausea. So far her energy level is good. I think the fact that her platelet level dropped to such a low level last year may have helped us both prepare mentally for what some of the process will be like.

Until tomorrow.


Bruce and Jackie
from Rochester, MN

Thursday +1

Today was another Summer/Spring day in Rochester. I think the temperature got up to around 80 degrees. The grass is starting to green up and there are buds on the trees. Of course they tell us a snow storm is still possible. Hard to believe!

Jackie did well this morning. After the doctor's appointments she actually felt like taking a drive. We drove to a local pancake house and had breakfast.

Unfortunately this afternoon did not go as well. She was in bed all day and felt terrible. The transplant center called and decreased (again) the meds that make her sick. It is the Cyclosporine (CSP) that makes her ill. It can be given by IV but it takes 4 hours. I also (with the approval of the docs) began giving her a stronger anti-nausea med. She responded well and is actually up and around this evening watching TV. This seems to be the cycle...if you get behind the curve in responding to the nausea it takes a long time to recover.

She isn't eating much. I went to the grocery store (again) and bought everything that she ever ate in her life that she thought tasted good. I bought a 4 pound tub of cherry Twizzlers! She hasn't eaten one yet. She won't even give consideration to a Reeses Cup.

The nurses warned today that as her counts drop and the chemo and radiation continue to kick in she will feel worse. They told us that four transplant patients were admitted yesterday. They were +4, +5 +5, and +6. So I wouldn't be too surprised to see her get to the same point over the next 4-8 days. The good thing is that going in-patient is no big deal. No paperwork, no calls to the doctor - nothing. You just show up at desk "94" and say I want to stay here. It truly is easier than getting a room at any motel! In this case the room is clean, the TV and movies are better (they have movies on demand), and the guy at the front desk is much friendlier. Breakfast in bed is always available. All the rooms are private.

I've said this before, everyone should consider coming here if a serious problem should arise. It truly is medicine as it should be!

Bruce and Jackie
from Rochester, MN

T-Day (Wed Day Zero) Update 2

The transplant process was finished by about 5:00. All went well. It was really sort of a non-event! As I mentioned in the earlier post the transfusion consisted of infusing 2 bags of what appeared to be red blood cells over a 1.5 hour time period. A nurse was present during the entire time. It was my understanding that negative reactions to the transfusions are possible so they closely monitor patients. They were all quite pleased there were no problems. Jackie was one of two transplants completed today. Many days there are three or four. I've included a poor quality picture taken with my cell phone camera during the transplant. Jackie was barely awake. They had given her a big shot of IV Benadryl and she was asleep within minutes. The red bag you see hanging on the IV tree is one of the bags of stem cells the other was just a bag of IV liquids. She had two big IV fluids bags infused with the stem cells. This helps keep the kidneys flushed. She actually gained two pounds today in fluids due to the flushing process. They weigh you before starting and when finished to make certain you don't retain too much.

Jackie is feeling well this evening. She was sick this morning but things improved as the day went along. A few minutes ago she was watching TV and actually had a bit of dinner. As I write she is changing the pillow cases on the bed!!! And she's supposed to be sick!!! I'm complaining and she won't stop!!!

We received a call from the transplant nurse-coordinator. This is the lady that flew to the donor's site and collected the cells from the donor. She presented the Thank You letters written by Jackie and me. She told us this was the second time this person has donated stem cells. He had not heard anything from the people involved in the first donation, so he was a little surprised to get a Thank You letter from us. The nurse coordinator said the letters brought a tear to his eye, so we were glad we sent along out thanks to him.

We return to the hospital at 8:00 AM in the morning. We will be returning at least once per day even if there are no problems. This will happen everyday for 3-4 weeks. They will draw blood everyday with additional draws on Monday and Thursday for CSP blood levels. We will also meet with the nutritionist every day so they can review Jackie's food intake. We met with the nutritionist for the first time today. Beginning on Sunday I will need to track every morsel of food and every drop of fluids Jackie eats or drinks. They calculate the calories every day. Her minimum daily intake is 1200 calories. They tell us there will be many days when this will be tough to achieve. I would guess that today the intake was not much above 1200 calories. She says nothing tastes good - but I keep hounding her!

Again, things went well. Thanks to everyone for their calls, letters, and emails. I'll continue to update the blog each day.

Bruce and Jackie
Rochester, MN

T-Day (Wed Day Zero) Update

Just a quick update to let everyone know that the transplant began this morning at about 9:45. It consisted of infusing two bags of stem cells over the course of 1.5 hours. Jackie was given some pre-meds including Benadryl. She has been asleep much of the day. It is now 3:00 PM. I will give a second update later tonight. So far there are no difficulties. Everything is fine.

Bruce from the Mayo

Transplant -1 (Tuesday)

Ok...so I can't count! Tomorrow is Day 0 (zero). I had to skip a day to get the countdown to work correctly. I wan't great at math. I guess that's why I didn't get that job at NASA doing the countdowns to blastoff:)

Jackie had her radiation treatment today. Tomorrow is transplant. She is feeling sick most of the time. She is now on a schedule of regular anti-nausea medication. We are told it will get much worse over the next several weeks. They expect her to hit bottom about 4-8 days after transplant. That is when her counts will be at their lowest. They will remain low for about 2 weeks at which point the transplant should begin to engraft. Engraftment will be a slow process. If all goes well she will be 100% engrafted within the 100 day window. Her full counts will take up to a year to recover. As you can imagine there are a great number of variables!

She is feeling better this evening. She is up and around. Much of how she feels is dependent upon her anti-nausea schedule. She feels better about 30 minutes after she takes the meds and then feels worse as the effect wears off.

The chemo and radiation certainly has something to do with her nausea. That is not the entire reason, however. The chemo kills off the fast growing cells in your body. Of course it is very effective at killing off the CLL cells in bone marrow. The first cells to die are those in the outer lining of the mouth, throat, stomach, and gut. As these cells slough off it alters the taste of foods, causes a dry mouth and throat, and is one of the key reasons for the nausea. It takes several weeks for these cells to rebuild. During this time period nothing tastes good. Jackie's tastes changed immediately after the radiation treatment. Things begin to taste like Styrofoam or cardboard.

Tomorrow is T-Day. We are to report to the transplant center at 5:30 AM. The stems cells arrive by air tonight about 10:30 PM. They recount them in the lab at the Mayo and perform other (unknown) tests. Jackie will get 4 hours of IV fluids, then the cell infusion, and then another 4 hours of IV fluids. We should finish about 4:00 PM tomorrow. The actual stem cell infusion won't take long. I'll post more on the process tomorrow.

They give 8 hours of IV fluid to make certain her kidneys are well flushed. Until the cells arrive we won't know if the cells will be bone marrow cells (very unlikely), true stem cells (very likely) or a combination. From time-to-time they cannot collect enough stem cells from the donor and it becomes necessary to get the remainder from their marrow. With the advent of growth factor stimulation shots this has become rare. The donor cells will contain stem cells as well as some red blood cells. The red blood cells are mostly destroyed by the collection process and need to be quickly filtered through the kidneys. I'm sure someone knows the reason, because I have no idea, why the stems cells are not filtered by the kidneys. For whatever reason they slip through and eventually migrate to the bone marrow where they begin to engraft. Engraftment takes about 2 weeks. This, of course, is the real danger period. With no immune system Jackie is subject to all the normal infections we had (and fought off) off as kids. Pneumonia is a real danger. For that reason she is masked anytime she goes outside the apartment.

Well, enough for one day. As I write she is feeling pretty good. She is watching American Idol and rooting for Kelly and Taylor (naturally!).

Bruce and Jackie
from Rochester, MN

Transplant -3 (Monday)

Today turned out to be a beautiful day here in Rochester. It was the first true spring-like day. The temperature was about 72-75 degrees with bright sunshine. It was the first day I've felt that Spring was in the air.

Jackie did bloodwork this morning. She was a little low on magnesium so they prescribed a pill - surprise! The also found that her level of CSP (cyclosporine, the anti-rejection meds) was too high. They are going to have her reduce her CSP intake. That's good. The CSP makes her sick. In fact today was the first day that the anti-nausea pills didn't work. I suspect there will be more days like today when no amount of anti-nausea drugs will be enough.

I've been giving her anti-nausea pills ever 4-5 hours. The nurses suggested doing this in order to keep ahead of the nausea. It has helped. This afternoon I took her down to the local Culver's fast food for a hamburger and milkshake. She was able to eat some of the food. After eating she headed back to bed. The anti-nausea meds make her very sleepy. She is asleep as I write this.

Talk about deja vu...This morning I asked Jackie if anything sounded good for breakfast. She said she would like some grits. We bought some at the grocery store last week. At the time I told her they would probably never be eaten. She assured me she would eat some at some point. As she was telling me she wanted grits I received a call from the front desk. They said I had a package for pickup. I told Jackie I would fix grits upon my return.

I picked up a package. It was from my mother. Inside it had a bunch of commercial/homemade items. It had some great looking ham, a package of bacon, some type of apple cobbler mix, sweet potato butter (?), and what else????? Grits! A big bag of high quality grits! So I made Jackie grits for breakfast. It was my first time to ever whip up this Southern specialty. Jackie ate about 1/2 the bowl and proclaimed them good. She didn't throw it up, so maybe she was telling the truth?

I've come to the conclusion that the medical community could use some simple improvements. It never ceases to amaze me how one part of the medical world is exactly like the computer world. In a word: Interfaces! Every syringe has a different kind of tip that needs a different type of tip/interface on the IV infusion bag that needs a special connector to hook up the the other IV, etc. etc, etc. There isn't enough standardization with IV bags, syringes, etc. For example, I have to change the central line Hickman Device tips once a week because A:) it needs to be clean an sterile and B:) the Mayo Clinic doesn't like the tip that is supplied with the device. It's no big deal but every time you turn around some nurse is hunting for some type of plastic tip to interface to something else. It is like the computer world with USB cables, parallel cables, serial cables, firewire cables, etc. In both cases there should only be one cable (and one tip). Solve this problem and you will save hospitals a ton of money and time. Combine that with a way to eliminate rubber gloves and you, too, can be the next Bill Gates.

Until later...

Bruce and Jackie
Rochester, MN

Transplant -4 (Sunday)

Today Jackie took her last chemo treatment. It went well with no problems.

I used my noxious concoction and sprayed the apartment for bugs, germs, creepy-crawleys, and whatever else might exist in the apartment. Who knows if it will do any good???

The chemo is beginning to have an effect on Jackie. She is now tired and nauseated most of the time. She has taken a lot of anti-nausea medications today, which in turn makes her sleepy. A good part of the day was spent in bed. For those who know her you know this isn't normal!

I wanted to send a special thanks to Ingjen Shih for the gift she sent. Jackie really like the folded origami cranes (and soaps too)! I also wanted to thank Nan for the angel food cake. I've haven't taken a bite. Jackie has almost eaten the whole thing.

Tomorrow is a "rest" day. We go in at 9:00 for a blood work appointment. They will draw blood for cultures and to determine the level of CSP (cyclosporine, the anti-rejection drug) in her bloodstream. Once a level is determined, her intake will be adjusted. The CSP is monitored and changed often. It controls the level of graft-versus-host disease (GVHD) that Jackie will experience. They could give her a high enough dose to probably prevent any GVHD but then she would not get any graft-versus-leukemia (GVL) effect. It is the GVL effect that kills off the errant leukemia cells that can be harbored in the remote regions of the body. So, the anti-rejection drugs play a vital role in determining how well this process happens. The problem is that GVHD can be very serious. Too little CSP and she gets very sick from GVHD. Too much and she will not get a remission of the leukemia.

On Tuesday Jackie will go through her radiation treatment. It will only last about 20 minutes. She is receiving a mini-transplant. The amount of radiation is the primary difference between a mini (or reduced intensity) transplant and a full-blown myloablative transplant. People getting the full transplant undergo almost a week of radiation treatments. Jackie will have only one treatment.

It will be a whole body radiation treatment. She sits in a special chair in a lead lined room with a door that is nearly one foot thick. The actual machine looks like something out of Star Trek! While radiation is very effective against killing leukemia cells I feel certain that in 100 years radiation will be viewed as our generation's version of blood letting.

Bruce and Jackie
from Rochester, MN

Transplant -5 (Saturday)

Today was a very nice day in Rochester. It was sunny with a high of about 55 degrees. There isn't a blade of green grass or a single bud on a single tree but everyone here thinks Spring is here. They are wearing shorts and riding their motorcycles. Brrrr.

Jackie had her second round of Fludarabine chemo this morning. This is a short treatment (30 minutes). By the time the nurses and doctors cover everything the whole thing takes about 1.5 hours.

The treatments are beginning to have their effect. She was tired a lot of the day and spent a lot of the time laying around. It still hasn't hit her full force. That should happen in about another week. Tomorrow she takes her last chemo treatment. We will do our daily visit to the transplant center on Monday but it is her "rest" day. On Tuesday she will take her radiation treatment and Wednesday will be -0 Transplant Day.

Tiff sent an email discussing how she read an article talking about how the living quarters for a transplant patient had to be sterilized. In our case, they have not mentioned the necessity of this. But the more I thought about it, the more I thought it should be done. So...I took a trip down to the grocery store and home improvement store. I purchased a garden sprayer, several gallons of alcohol, and various and sundry other sterilizing chemicals. I'm in the process of mixing up a noxious brew that sure to kill everything that creeps, crawls, lives, or breathes on the carpets, rugs, and countertops of this apartment. I intend to treat everything tomorrow morning while Jackie is walking the 2 blocks to the clinic. I'll catch up to her along the way. I'm thinking maybe I should get some Petri dishes and culture whatever is living with us. In case my home brew doesn't kill of everything I might stuff some wet towels under the doors and fumigate with some chlorine gas made from pool supply chemicals. Anything living through this would be finished with a follow up fumigation of phosgene gas.

Of course I'm kidding about the gas:)

I am going to spray with a solution of alcohol and water to try and kill off anything the carpet and drapes might be harboring, however. Now if I could just figure out what concentration of water to alcohol I need to keep the entire affair from becoming explosive..... :)

Bruce and Jackie
From Rochester, MN
PS. It is about 10:45 PM as I write this and Jackie is having some nausea for the first time.

Transplant -6 (Friday)

Well, so far today hasn't been too bad! We had to report to the pharmacy at about 9:15 for our drug kit pickup. The drugs took three shopping bags to transport. I've included a photo of the drugs that are required. Many of these are "3 times a day" meds.

I suppose today is the official start of the transplant process. Jackie got her first infusion of Fludarabine. It has been about an hour since she finished the infusion (which thankfully only takes 30 minutes) and she is OK. The only symptom so far is a headache. I'm sure some nausea is bound to follow. As part of the process they pre-medicate for nausea. They also draw lots of blood for blood cultures every day. Today it seemed like they needed an entire unit. I think on most days it won't be so much. They do this to test for infection.

I think I mentioned in one of the blogs that Jackie is positive for one type of virus (can't recall the name). About 1/2 the population is positive for this particular type (her donor is negative). She probably had flu like symptoms at some point in her life and got over it quickly. In any case, this particular virus poses a risk for reappearing during transplant. It is one of the more risky ones you can get. So...the Mayo draws blood and gene sequences her blood every few days to check for minute amounts of virus replication. If they spot a trace they start her on drugs to combat the disease. I doubt this sort of check would happen at smaller transplant centers. Of course, as with all tests, this one is done here at the Mayo Clinic. Nothing (as far as I can tell) is sent to an outside lab! Many of the non-gene sequencing tests here come back within a few hours. It is amazing how efficient they are at the Mayo! In most cases the standard blood tests are drawn one of the downstairs labs. By the time you get upstairs and checked in for a doctor's visit he will have the results popping up on his computer. This is often within the same hour. EVERYTHING is computerized! The lowest level nurse can examine your schedule, your meds, and even the complete treatment protocol with a few keystrokes. It really is medicine as it should be.

Today was also the first day of "no". No travel outside the apartment without a mask. No makeup. No brushing teeth with a toothbrush; only a soft swab and special mouthwash. No lotions. No creams other than a special Mayo Clinic cream. No deodorant. No regular soaps only a special Mayo Clinic soap. There are probably some other "nos" I am forgetting. There are a bunch of them. These will continue through at least day 100!

Yesterday they told Jackie to throw away all her old makeup. When the process is over she can repurchase new makeup. This really pained me. I think the cost to replace the makeups will be more than the transplant itself:) I told the nurses we would donate the makeups to the needy. Tiff and Brittany can expect a package from Rochester soon:)

So, today has been fairly easy compared to yesterday. We report for chemo round number 2 tomorrow at 9:00.

Until then...

Bruce and Jackie
from Rochester, MN

Transplant -7 (Thursday)

Wow....long day!

The day began at 6:00. We had to be at the out-patient surgery center at 7:15. It took until 12:45 to get everything completed. Jackie did fine with her central line insertion. She is really sore in a couple of places. The central line (Hickman Device) is inserted in through an incision in the lower neck. One end is fed via a wire down the next through one of the major arteries into the superior vena cava just above the heart. The other end is tunneled under the skin about 6 inches below the first incision. It exists and splits in to two IV lines. Part of the time this morning was teaching me how to care for the line. The dressing and end caps have to be changed one a week (at least) and the lines have to be flushed with Heparin every day.

After the central line she had about 3.5 hours of Rituxan chemo infusion. After that she had a sinus X-ray. This was supposed to be part of the original screening process, but they forgot to include it.

Finally Jackie underwent about 5 hours of IVIG (immunoglobulin) infusion to strengthen her immune system. This lasted until 9:45 PM. It is now a little after 11:00 and we begin again in the morning with the first chemo infusion of Fludarabine. This is the first of the heavy duty chemo treatments that will kill off all her cells in preparation for the transplant. It is expected she will be sick after these treatments. They have prescribed 3 different anti-nausea medications. She has a chemo infusion tomorrow, Saturday, and Sunday. Monday is a day off from chemo (at this point) with radiation scheduled for Tuesday and transplant on Wednesday.

We received a nice "goody" basket from Tami Greene and some Spring-themed/Easter items from Tiff. Tiff also included 3 baking pans and a box (with directions) for a homemade desert. I told Jackie I could cook for her when she became unable. I told her I could cook anything...as long as it came in a box and had directions printed on the side.

Until tomorrow.

Bruce and Jackie
from Rochester, MN

Transplant -8 (Wednesday)

Ok...This will be a long blog.

This morning Jackie had a "blood work" session. This is standard procedure and is no big deal. We spent most of the afternoon with doctors and nurses in preparation for the transplant. Tomorrow she will have another chemo treatment and she will have her central line "Hickman Device" surgically implanted. She will have the heavy-duty chemo on Friday, Saturday, Sunday, and Monday with radiation on Tuesday and transplant on Wednesday. She will begin her "anti" drug regimen beginning tonight. She starts with a drug called "Actigall" which protects her liver. What is Actigall? Bear gall bladder (bear bile). Guess it must be difficult to collect bear bile. I haven't seen the bill, but with all the PETA people out there it is probably expensive:)

The real drug regimen begins on Friday morning. There are so many "anti" (antirejection, antibiotic, antifungal, etc.) drugs that we will be given a spreadsheet that lists times and quantities of each to be taken. The spreadsheet chart will be changed daily. She will remain on penicillin for at least a year.

Another transplant nurse told us how great the donor match was. It is a perfect "10". We learned today the blood type is even the same. From what I can gather this adds some sort of minor benefit. Of course we spent some time with the doctor today warning us that things could still go very wrong. We also spent time discussing living wills, advanced directives, etc. Talking about the morbid aspects brings the reality and gravity of the situation back to mind.

We learned today that even once the 100 day period ends Jackie will still need to make return visits every 2-4 weeks for a year or so. It is possible some of the lab work can be done in Tulsa, but they told us to plan on frequent visits back to Rochester.

We asked the doctor if they had ever had an event where someone was prepared for a transplant and the stem cells weren’t ready. He said "yes" – on September 11th. He had a patient ready for transplant and the stem cells were coming from Europe. They had to drive to Canada and re-route the flight. He said things turned out fine.

I also learned today that Jackie’s DNA and the XY chromosomes would change. I’ll admit I don’t fully understand this, but it seems that Jackie’s blood type will show one XY chromosome sequence while a swab of her gums or a hair sample would reveal a different result. What does this mean? It means that she may be able to commit the perfect crime that DNA can’t solve! I’m told there was a whole CSI Crime Scene TV episode about this unique situation. I guess I’ll have to watch it to see how this all works. In the mean time if I end up murdered and Jackie is a suspect make certain they collect blood AND hair samples:)

They still plan on trying to do this entire process on an out-patient basis. They’ve told us to expect some – and maybe a lot – of hospital stay. The nurse said that it wasn’t that long ago that many of the people undergoing transplant were in the hospital almost the full 100 days. They’ve found that people subjected to fewer germs if they stay out of the hospital. They also tend to stay more active. Being out-patient forces you to get out of bed and make the 2 block (for us) trek to the hospital every day. Of course insurance companies have had a great deal to do with the in-patient versus out-patient change. They aren’t paying for our apartment, but they do pay for the hospital room.

Lastly, I wanted to send a thank you to Brent and Janees Taylor and Ruth and Stanley Lapidus for the gifts. Brent and Janees sent a box of chocolate covered cherries and a cheesecake assortment from www.berries.com. They are REALLY good!

We also received from Ruth and Stanley a nice card and a beautiful silver picture frame with a picture of Chloe (our dog) from Tiff’s wedding. Jackie was really PLEASED and has it on the nightstand. Thanks to everyone for the gifts.

I also wanted to remind everyone to please not send any plants as gifts. We are not allowed to have any type of plants in either the hospital or our room.

Well, that’s enough for one day.

Bruce & Jackie
From Rochester, MN

Transplant -9 (Tuesday)

Today was another nice day in Rochester. The temperature made it to about 55 degrees. People are riding motorcycles and you see people now wearing shorts. It's Spring in Rochester!

Tomorrow we have doctor appointments in the morning and some in the afternoon. On Thursday the process begins. She will begin the series of chemo on Friday. On Thursday she will have the port "Hickman Device" surgically implanted. As I mentioned before it has two tubes with needles implanted under the skin. The needles are inserted into the superior vena cava at the top of the heart. The device will remain in for at least 100 days.

Tonight we finished writing anonymous (required by the bone marrow bank) letters to the donor. They will be hand delivered to the donor when the cells are collected by the Mayo representative.

Until later....

Bruce and Jackie
From Rochester

Transplant -10 (Monday)

Today was a great day in Rochester! The temperature climbed to nearly 70 degrees and there was bright blue sunshine. It was windy, but warm. Tomorrow is also supposed to be nice.

Very soon (10 days now) we will be quarantined in this tiny apartment for at least a month. We took the opportunity to drive around and see some of the small towns in the area. We drove through "bluff country" which consists of a hilly area with a nice river running through it. In the summer there must be a lot of rafting and biking.

Until later....


Bruce and Jackie
Rochester, MN

Transplant -11 (Sunday)

Well, Sunday dawned a truly miserable day. Cloudy and rainy. Obviously nothing happened important since I am just getting around to posting on Monday. After a late lunch/early dinner at the world famous Rochester Outback Restaurant we drove to Stewartsville. Stewartsville is a small town about 12 miles away. Other than having way too many old style street lamps placed too closely together to be asthetically pleasing there is nothing interesting about Stewartsville.

Bruce and Jackie
From Rochester
PS. For all those from Stewartsville who read this blog...our apologies!

Transplant -11 (Saturday) Tragedy in Rochester

Ok, so I'm a little late in posting today's blog. It is for two reasons.

First, on Saturday Jackie and I spent about 1 1/2 hours in the apartment complex gym. After our workout we decided to go in search of food. Since we were cleared by a nurse with 5 years of experience to eat anything on the face of the planet we headed for the local Krispy Kreme donut factory. That's when tragedy struck. Upon arriving at Krispy Kreme (which is located adjacent to the TGI Fridays which is adjacent to the Olive Garden) we discovered the Krispy Kreme donut factory has ceased operations!

It was closed. Shuttered. Kaput. It was GONE. No signs of a move...it was just GONE. Prior to leaving on our last trip to Oklahoma it had existed. Today it was GONE. It was at this point we realized just how fragile business life could be! What could have happened?

In Oklahoma the Krispy Kreme shop in Tulsa is young, vibrant and lines of cars still circle the building whenever the red sign is illuminated. People still flock to Krispy Kreme to buy donuts to be used in church and school fundraisers. Jackie and I come from a culture that has never know the demise of a Krispy Kreme donut factory. We had no idea such a tragedy could take place!

We asked ourselves, "How could this happen?" How could something as wonderful as a donut factory that serves still-hot donuts just cease to exist overnight? There could only be one answer!

Health food Nazis! Curse the rotten evil-doers!

It's not surprising that in a city with almost 30,000 doctors and nurses they could exist. We had suspected there were pockets of such people. But how could they put an entire donut factory out of business in such short order? Obviously they are well organized.

Our investigation into how this happened has only just begun. We hope to have more details as the days progress. We can only report that pockets of resistance to this evil menace DO exist in Rochester. While on recon missions we have discovered the presence of at least TWO Smoke Shops. These brave folks of staked out their claim via bold and bright neon signs marking there own little line in the local sand. So, folks there IS hope. There IS hope that the donut factory will resurface. Perhaps at a different location. Perhaps with a different name. But someone...somewhere still has possession of the state-of-the-art stainless steel equipment that can pump out thousands of hot Bavarian cream filled donuts per hour. With the help of patriots like the transplant nurse who told us caloric intake was all-important, a few good smokers, and citizens like Jackie and myself TRUTH and the American Way WILL survive!!!

Bruce and Jackie
From Rochester
Oh yes, the other reason the blog was late is because after 1 1/2 hour in the gym I was too sore to get to the computer until late on Sunday morning.