Blog for Jackie Sue while at the Mayo Clinic, Rochester, MN. UPDATED. This blog now covers her progress after her mini-allo MUD transplant. Her transplant was the first one to be performed by the Mayo Clinic.

Friday, June 30, 2006

Friday +79 (10:15 PM)

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, June 29, 2006

Thursday +78 (10:30 PM) Update2.

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

Thursday +78 (6:30) Update. Fireworks in Rochester

Just a quick update to let everyone know we will not be coming home this weekend. Jackie's blood counts are still to unstable. Her Hgl is 10. Her WBC is 1.5 (ANC .75). Her platelets, however, have dropped to 76. I will post details later this evening.


Wednesday, June 28, 2006

Wednesday +77 (10:30 PM)

Again, not much to report today. With no hospital visits and no blood counts this makes for boring reading. Of course that's a good thing - from Jackie's standpoint!

Jackie had another good day today. She felt almost normal. She only had a little nausea today and very little back pain. She was able to do an extra 5 minutes in the gym today. Her total was about 25 minutes on the treadmill and stationary bicycle. Considering she was doing a little over an hour in the gym at home before the transplant this is good. Before the transplant she would do an hour in the gym and about an hour of brisk walking. The docs told her to get into the best shape possible before the transplant. She was able to devote a couple of months getting ready.

Today we packed more suitcases. I filled up the trunk of the car with stuff in preparation for being allowed to head home. There is NO WAY we will get all the stuff we brought (and bought) into the car for the return trip. Scheduled to stay behind? Brand new (and barely used) vacuum cleaner, mops, brooms, garage sale bicycle, and lots of grocery items. It is probably about $300-400 worth of stuff. It doesn't bother me a bit to pay $1100 for a tiny bottle of pills but it really hurts me to leave behind my brand new $49 WalMart vacuum cleaner. I would ship it home, but it would probably cost $59 to get it there. Oh well....

We had our usual hospital visit today for a growth factor shot. That only takes about 45 minutes. Most of that time is taken up by the standard questions, "What is you name? Can you spell your name? What is your clinic number?", etc.

Tomorrow we have an early clinic appointment for blood work and growth factor shot. We then have a late afternoon appointment with the transplant doctor. We certainly hope he says, "Go home for the 4th!" We are packed and ready! If he doesn't turn us loose we are BOTH going to be disappointed!

We now have neighbors next door. Most of the time we have been at the Oakwood we have had nobody else living on our floor. We had dinner with the building manager last Saturday night and she said they were about 25% occupied during the winter. I think she was being generous; I would guess 10%. With the arrival of summer the number of people living here has increased. The building is probably 50-60% occupied. The people next door are expecting to be here for 5-6 weeks. They are from West Virginia and she is a Mayo patient.

Until later...

Bruce and Jackie
From Rochester, MN

Tuesday, June 27, 2006

Tuesday +76 (11:00 PM)

Not a great deal to report today. Jackie felt really well. In fact, it was her best day in several weeks. This is probably due to the stoppage of her Mycophenolate anti-rejection drugs as well as the Neupogen growth factor shots she is receiving. These growth factor shots work quickly and cause the blood counts to increase. The Neupogen primarily targets the WBC count, but it also seems to cause her other counts to increase as well. She will receive a growth factor shot each day through Thursday.

Since we have graduated to "Clinic" we no longer have daily blood tests. Therefore, there is nothing to report. Her next set of blood tests will take place on Thursday. I feel certain she will have very good results. Hopefully this will convince them to allow her to return home. Of course we have to wonder if her counts will continue to hold without the growth factor shots. Only time will tell.

Since Jackie felt so well today she spent a lot of time packing. When they declare her ready to go home she can be out the door in record time. She also felt well enough to spend a little time on the treadmill and stationary bicycle in the gym. The doctors suggested she try to spend a little time in either the gym or walking. They felt it would help her appetite if she could increase her activity level. She was only able to do about 20 minutes of exercise, but this is a great improvement. Something seems to be helping as she had very little nausea today and her appetite was improved.

So, as I said...not much to report, but it was all good!

Until later...

Bruce and Jackie
From Rochester, MN

Monday, June 26, 2006

Monday +75 (8:00 PM) Third Update

We just received a call this evening from the transplant center and Jackie's CMV test today was once again negative. This is very good news and increases the odds she will head home soon.


Monday +75 (6:40 PM) Second Update

We spent most of the day at the hospital. This morning we had the usual blood tests. This afternoon we met with one of the RN nurse coordinators with regard to graduation from hospital to clinic. We met with her for about 1.5 hours. We also met with Jackie's transplant doctor for an extended period.

As I mentioned in the earlier update, Jackie's WBC counts have once again declined. Today the counts were: RBC (Hgl) 9.7. WBC was 0.9 with an ANC of only 0.57. Her platelets were 119. Due to the low WBC count she is once again receiving growth factor shots. She will receive one per day for the next three days. The shot will likely bring her counts back up again. The question the docs have is, "Why are the counts declining?" They feel there are several reasons. All of them drug related. For that reason they are going to completely remove one of her anti-rejection drugs; Mycophenolate. They feel with this removed and with only oral doses of Ganicyclovir her counts will recover on their own. Of course if she begins to get some GvHD or a change in her donor chimerism their plan will need to be altered. We are hoping to have the CMV test results later this evening. We hope they are still negative. If not, this could reset some of our plans.

All that said, if she stabilizes by our next doctor's appointment on Thursday they are thinking of releasing her to go home until her 100 day appointment in 25 days! There are lots of "ifs" but we are still crossing our fingers.

Since I didn't get any comments on the blog yesterday I thought maybe I scared everyone off. Jackie thought my warning was a little too blunt. In case you haven't noticed she is a lot nicer than I am:) That said, we got almost the same lecture I gave on yesterday's blog from the nurse today. She even had hand-outs and assigned reading on the subject of germs when you go home. About the only thing I didn't cover last night was vaccinations and pets. There are a bunch of do's and don'ts with regard to vaccinations. Most of them won't apply to us. She has to be careful not to be around young children who have had school vaccinations made from live virus vaccines. They are a little fuzzy about pets. We can have pets and she can be around live plants again but she cannot be around pet feces. I think Chloe may have to live outside when we get back home. That is a question that will need to be further clarified.

All-in-all Jackie had a good day. She was tired as always, and had some back pain but overall things were good.

So, hopefully by next weekend we can return home for a short visit. I will post as we know more.

Until Later...

Bruce and Jackie
From Rochester, MN

Monday +75 (6:10 PM) Not coming home just yet

Just a very quick update to let everyone know we will not be coming home tomorrow. Jackie's counts have declined further and she isn't stable enough to make a trip home. I will be posting a follow-up update with the details in the next 30 minutes. It is possible we may get to come home this weekend, however.

Sunday, June 25, 2006

Sunday +74 (10:30 PM)

Today was a rainy day in Rochester; a good day to lay around, watch TV and take it easy. So that's exactly what we did. Jackie had a good day again today. She is still weak and runs out of energy quickly. We took a trip out to the Super Target store so she could buy a little makeup. While they haven't OK'd her to wear any yet, she thinks if she shows up for the doctor's appointment looking her best he is more likely to turn her loose. So expect tomorrow she will get the face paint out and try to be on her best behavior.

I spoke with the 2-week-doctor today. That's the one that rotates through every 2 weeks. This guy is really good. He came by to tell us he was leaving the hospital and that his 2 week session was coming to an end. He said he had ordered another CMV test for tomorrow, "just to make certain" she was still negative. He also ordered another chimerism test. This is the test that determines if Jackie's cells are 100% donor. The last two tests have shown that she is 100% engrafted. Since they are tapering her anti-rejection drugs this could change. Her cells could begin to fight off the donor cells. If this were to happen I suppose they would increase her anti-rejection drugs. The CMV test results will likely be ready late Monday night. The chimerism test take 3-4 days for results. I suppose the doctor may want to wait until both results are back before making any decision to release Jackie for a visit home. We will know more tomorrow at about 4:00 PM. I will post an update as soon as we return to the apartment - probably by 5:00 PM.

The blood test results have been running a day behind. Therefore, these numbers are actually for Saturday. Jackie's RBC (Hgl) was 9.8. This was down fractionally from the 10.0 on the prior two days. Her WBC count improved to 2.2 from the prior day's 1.6 and Thursday's 2.0. Her ANC improved as well to .87. This is up from the prior day's .71. As most know by now this is an important number. It determines her susceptibility to infection, etc. It would be good to see this number much higher. Her platelets remained relatively stable at 144; with 150 or above being in the normal range.

While on the subject of coming home... I've mentioned this before, but I have to repeat it again. She CANNOT be around anyone who is sick! She CANNOT be around anyone who has BEEN AROUND who has been sick! She has very little energy and is still very weak. She doesn't feel like eating much. If you bring it, she won't eat it. She also has be be very careful about what she eats. As much as everyone would like to give her a hug when she gets home, that probably isn't a great idea. It is important to continue to think GERMS, GERMS, GERMS. She will still need to mask when outside. This will remain the rule until her ANC improves to a better level. She will need to be antisocial until she is free of her anti-rejection drugs. This is at LEAST another 30-60 days. Even then she cannot be around anybody who has been sick. She has little or no resistance to most common germs. She takes anti-virals and antibiotics which help, but cannot stop all types of exposure. One of the biggest dangers to transplant patients comes after their release from the hospital when they start to become exposed to the real world again. They can be exposed to someone who has a minor "cold" and the transplant patient ends up with pneumonia, etc. She will be at an increased level of danger for up to 1 year after the transplant. If you show up at the house and cough or sneeze expect to be asked to leave - BY ME!!! Sorry to be so blunt, but that's the way things have to be. I HOPE everyone understands.

Cross you fingers, we hope to see a lot of you (at least the disease free, non-coughing, non-sneezing, non-food-bearing) folks next week:)

Until later...

Bruce and Jackie
From Rochester, MN

Saturday, June 24, 2006

Saturday +73 (10:30 PM)

Jackie had another reasonably good day today. It started a little rocky, but finished up well. This evening we went to dinner with the manager of the apartment building, and another transplant patient. The apartment manager is from Wagoner, OK. The other transplant patient is from Tulsa, OK and also lives in our building. We went to the Rochester Golf and Country Club for dinner (which was really good) and Jackie was able to eat a more-or-less normal meal.

Today was the last (hopefully) IV Ganciclovir treatment. All told she must have received about 50-60 IV treatments. Today she graduated to the same medicine in oral form. I don't know how much the IV treatments cost, but a bottle of 30 pills retails for $1175.00; and a Starbuck's Venti Frappacino still goes for about $5.00. I still think there is more profit in the coffee.

Jackie also gets to taper her Mycophenolate dosage by another 1/4 gram tomorrow. It is still the same number of pills, but we use two different sizes to get the correct dosage.

Many of you may remember the woman that required two transplants. I saw her and her husband yesterday walking the four blocks from their apartment to their hospital. She is moving slowly, but does not require a wheelchair and is doing well. This is the lady that nobody thought would survive. For more than two weeks she was on IV nutrition and didn't engraft for over one month. Only after a second unrelated transplant did the engraftment take place. Unrelated donor transplants like Jackie's are far more difficult. For those receiving autologous (their own) stem cell transplants the process is much shorter. The lady we had dinner with tonight will receive her own cells on Monday. They are telling her she will be out of here by July 17th. She receives her transplant on Monday morning!

Tomorrow we will visit the hospital for blood work. This should only take about 30 minutes. We will do the same on Monday morning with doctor's visits to follow. If all goes well we will be packing on Monday night!

Jackie's blood counts for yesterday were available this morning. Usually we get the counts while still in the hospital. For the last two days the lab has been slow in processing the numbers. Her RBC (Hgl) for yesterday was 10.0. This was unchanged from the Thursday count. The WBC count had decreased to 1.6 from Thursday's 2.0. Her ANC was .78. Hopefully this will increase. If not, it could keep her from going home. With an ANC below .50 she will require growth factor shots and might not be considered stable enough to send home. The ANC for Thursday was slightly above 1.0. The good news is that Jackie's platelets have once again move back into the normal range at 157. They have been hovering in the near-normal range for sometime and don't seem to be a problem. Her RBC and WBC will also improve, but more slowly. It could take upwards of one year to see them return to normal levels. It is my feeling she will have good numbers for tomorrow. This is based upon my observations of her general energy level and well being.

Until Later...

Bruce and Jackie
From Rochester, MN

Friday, June 23, 2006

Friday +72 (10:00 PM) Double Negative!

I didn't realize they had pulled a blood sample yesterday for another CMV blood test. It seems they wanted to confirm the negative test from earlier in the week. The second test was also negative! This, of course, is great news. It will make the decision to allow Jackie to return home much easier. To be safe, she will continue to receive Ganciclovir treatments until Monday morning. At that point they will place her (probably) on oral Ganciclovir until she is weaned off the Cyclosporine. So, with luck only 3 more IV treatments.

Jackie had a great day today. She had very little nausea and only a little back pain. She continues to pack boxes and suitcases in preparation for departing Rochester.

In speaking with the nurses this morning it is possible she could be released for a couple of weeks; perhaps even until the magic 100th day. She would have blood drawn in Pryor or Tulsa and it would be sent via FedEX to the Mayo clinic. They would follow up by phone. Each patient is different and we won't know more until we speak with the doctor. As it turns out, we are going to be meeting with the doctor that is head of the bone marrow transplant unit. Her normal doctor is out of town so it will be his boss that signs off on any visit home.

I spoke with Derrick tonight and he and his girlfriend went into a tiny restaurant in MA to have dinner. The restaurant was in a small town south of Boston. While there Steven Tyler of Arrowsmith Rock and Roll fame came in. It seems he is the owner of the restaurant and just dropped by to check on things. That was Derrick's and Tiff2's brush with greatness. Just in case you haven't seen Derrick in a while and you've never seen Tiff2 I've put their picture on today's blog. I also put a photo of Tiff1 and her husband Joel as well as a photo of Brittany.

Photo legend: First Row: Brittany. Second Row (Gap): Derrick. Third Row: Bruce, Tiff, Jackie at Tiff's wedding at this time last year. Fourth Row: Derrick and Dog Chloe this summer Fifth Row: Tiffany Finch (Tiff2) and Derrick. Sixth Row: Tiff with husband Joel. Last Row: Brittany with boyfriend Mike.

Until Later...

Bruce and Jackie
From Rochester, MN

Thursday, June 22, 2006

Thursday +71 (10:30 PM) Leap Days, Skip Forward 2 Days

Ok, the numbering for the blog just skipped a couple of days. By our own count we are at Day +71. The Mayo has us as Day +72. Somewhere along the way my numbering system for the blog got fouled up and I was hesitant to make any change. The hospital has us a day ahead because Jackie had two Day Zeros.

Not a lot happening today. It was more-or-less like every other day during the last week. We did our usual morning visit to the hospital for IV Ganciclovir, visit with the doctor or PA, blood tests, results of blood tests, etc. We are starting to become a fixture around "Station 94". All the nurses know us by name. They know we are from Oklahoma. Most of them know how many kids we have and their ages. Some of them are beginning to feel like an extended family.

Jackie continued to have periods of nausea and her usual unsettled feeling about 6:00 PM. I have no idea what causes the reaction, but usually around 6:00 she become fidgety with tremors. An Oxycodone usually settles her down (of course), but tonight it didn't. It lasted for about 2 hours and then she began to feel OK. I'm certain it is a reaction to one of the medicines, but it is impossible to know which one. In looking up the side effects for some of the meds it seems like the Ganciclovir could be the cause. Hopefully we only have a few more days of the IV treatments.

They reduced the level of Cyclosporine today. This is the primary anti-rejection drug. They said her creatine levels were getting too high which signals a kidney problem. The levels have been very good. From what I gather normal levels are a bit unusual. They are lowering the Cyclosporine level in an attempt to head off any potential problems. The Cyclosporine level has been reduced many times in the past. It will continue to be reduced until sometime after the transplant.

Jackie's counts continue to hold. They seem to be slowly improving. Her RBC (Hgl) count was 10.0 today. That was a fractional increase from 9.9 yesterday. Her WBC count was unchanged at 2.0. Her platelets improved to 145 from yesterday's 133. As someone pointed out to me today small changes in these numbers mean very little. The measurement error in the machinery used to do the counting can be larger than the actual fractional changes. So a tenth of a point here or there is really meaningless.

Until Later....

Bruce and Jackie
From Rochester, MN

Wednesday, June 21, 2006

Wednesday +68 (10:30 PM) Finger's Crossed

I hope everyone enjoyed the first full day of summer!

We won't know until next Monday what the decision will be for Jackie's return home. In order to get all the doctor's visits lined up we have to wait until Monday. It seems the actual transplant doctor is out of town (vacation?) and we will see the doctor covering for him. He may not feel comfortable in releasing Jackie for a visit home. We will just need to wait and see. We are keeping our finger's crossed.

Jackie had a good day today. She did have some nausea but it seemed better. Her back pain is also much better; although still around from time-to-time. I think the prospect of coming home has energized her. Between bouts of "I'm pooped" she did exactly what I predicted she would do today - she packed suitcases! She says by Sunday night she plans to have everything packed. So, I hope she isn't disappointed!

Tonight we had a video conference with Derrick and his girlfriend Tiffany2 (so named because we already have one Tiffany - Tiffany Lapidus, nee Taylor). We used my Father's Day present, an iSight video camera that hooks up to the Mac. It worked well! We can conference in up to 4 video streams. With 4 streams the video and audio is likely to be pretty bad, however. For anyone thinking about buying a new computer I certainly recommend Apple. There are a few quirks that drive me nuts and a few websites that present problems, but overall the experience is much better. At present there is no worry about getting a virus, there are no pop-up ads to annoy you, and the user interface is superior.

The decision to allow Jackie home for a visit (sounds like we are getting out of prison doesn't it!) will depend a lot upon her blood counts. These continue to do well. Her RBC (Hgl) was at 9.9 which is down fractionally from yesterday's 10.0. The more important measure for now, her WBC count improved to 2.0 from 1.8 yesterday. Her ANC is now at 1.0 (actually measured as 1000, but the trailing zeros are always dropped). This is up from .78 (780) yesterday. Her platelets are still holding strong at 133 which was a slight decline from yesterday's 142. I could be wrong, but I suspect tomorrow's counts will be better. It seems you can always tell what tomorrow's counts will be like based upon the previous day's general feeling of well-being (or not).

So, with some luck we may see everyone next week sometime. I would reiterate the fact that anyone who is ill or has been near anyone who is/was ill should stay away. If we are allowed to come home I will probably post some "rules for visiting Jackie" before we arrive. Things such as no hugging, no hand shaking, special handling of food, frequent hand washing, etc. will all need to be considerations. Anybody who thinks this is strict need only remember that all doctors and nurses are required to glove before entering her room at the hospital. The room, bed, and all surfaces are disinfected before each visit. The hospital rooms have HEPA air filters that exchange the air every 6 minutes using air from outside the hospital. Obviously they take this stuff seriously and we will need to do the same.

Until Later....

Bruce and Jackie
From Rochester, MN

Tuesday, June 20, 2006

Tuesday +67 (11:00 AM) Evening Update

As you probably already know, Jackie's CMV test was negative today. This is the first time in about 2 months this has happened. Now we need just one more negative test to be in the clear! This morning as we walked to the nurse's station area of the hospital the doctor met us at the door. He said, "You must not have heard the good news! Your CMV test is negative!" I think he was as excited about the test as we were!

We will be meeting with the ID (infectious disease) doctor on Thursday and the transplant doctor sometime this week. They will consult and determine as to whether to take Jackie off IV Ganciclovir and continue with oral Ganciclovir. It is also possible they could take her off the Ganciclovir completely. This is unlikely. She will probably continue with the oral form with a slow tapering of dosage over time.

If Jackie's counts continue to improve I believe they will allow a trip home. We should know something later in the week. With regard to counts they improved today. In spite of this, Jackie still has little energy and continues to have some nausea. Her appetite has been poor and it is always a struggle to eat.

Jackie's RBC (Hgl) count was 10.0 which was improved from yesterday's 9.7. Her WBC count improved fractionally from 1.7 yesterday to 1.8 today. Her ANC level is still very low. It was at 0.78 today. Her platelets improved a great deal to 142 from yesterday's 118.

So for now we continue to keep our fingers crossed for a visit home. Jackie was making comments about "getting packed up" this evening. I think if she finds the energy she will have everything packed and ready over the next couple of days.

For Annie A, Jackie wanted to say אַ דאַנק and was פֿאַרקלעמפּט when she received the gift from her חבֿרטע

Until Later....

Bruce and Jackie
From Rochester, MN

Tuesday +67 (11:00 AM) CMV NEGATIVE!

Just a quick post to let everyone know that Jackie's CMV test is negative for the first time in about 2 months! Her counts have improved slightly. I will update later this evening at the usual time.

Monday, June 19, 2006

Monday +66 (10:30 PM)

I hope everyone had a great Father's Day!

Tomorrow we will learn the results of the second CMV test conducted within the last week. In speaking with the doctor he feels if Jackie's counts continue to hold their own and the CMV viral load is either lowered or the same we may get to take a short trip home! Of course there are a lot of "ifs" here. If all these things come together she could be allowed to travel back home either this weekend or maybe sometime next week for a few day's visit. We will know more tomorrow.

I'm not certain she is ready. She still continues to have a lot of problems with pain and nausea; although today was better than yesterday. Today she had a lack of energy and an overall flu-like feeling. The doctors all seem to feel this is normal and is no big deal. We continue to decrease some of the medications. I think a lot of her problems are associated with the meds. For example, a lot of her back pain went away when we dropped from twice-per-day Ganicyclovir treatments to once-per day. If she were to drop this medication entirely I think she would feel better instantly. Once of the side effects is a nervous state with an unsettled feeling. This certainly describes some of her current difficulties. The problem comes and goes. In fact, it can come on without warning. For example, she wanted to eat a shrimp cocktail at Red Lobster for lunch (we have one below our apartment). So we went over for a late lunch of shrimp cocktail (for her) and cheese biscuits (for me) with a plate of fish and shrimp and salad (and other stuff I didn't pay much attention to). I usually just go for the low-cal cheese biscuits. While eating the shrimp cocktail one of her unsettled spells struck without warning. We hurried the dinner and went back to the apartment where we spent the remainder of the afternoon.

Jackie's counts declined today. Hopefully they will recover without the use of more Neupogen growth factor. Her RBC (Hgl) was 9.7 which was down from yesterday's 10.7. Her WBC count declined (again) to 1.7 from 2.3 yesterday. Her platelets declined to 118 from 171. The good news is that her ANC (absolute neutrophil counts) for yesterday (I don't have today's ANC) was very high. As I recall it was above 1000. It has been substantially higher. I believe at one point before the CMV treatments it was as high as 3400.

I should know more tomorrow regarding a possible visit home. I will update as soon as I know something.

Until Later...

Bruce and Jackie
From Rochester, MN

Sunday, June 18, 2006

Sunday +65 (10:30 PM) Father's Day

I hope everyone had a good Father's Day. I certainly did! The girls left this morning about 9:00 AM for flights back to Boston and Dallas at 12 and 1:00 PM. It was great to have them visit, even if just for a little while.

Unfortunately Jackie did not feel well much of the day. As everyone who reads the blog knows, she has good days and bad days. It is impossible to predict which ones will be good and which ones will be bad. To some extent her blood counts can be an indicator, but that isn't always the case. Today is a good example. Her counts continue to do well but she still is having difficulty with nausea. And of course when she is nauseated she doesn't eat or drink as she should. To date, she has lost more than 30 pounds during the transplant process. For the other CLL patients reading the blog you should consider going into the transplant with some extra pounds.

We met with the doctor this morning. He is very pleased with her progress and believes we can transition to clinic visits very soon. The only issue is the CMV. They will conduct another CMV test tomorrow and the results will determine what happens next. We continue to taper her Mycophenolate anti-rejection medicine. By day 100 she should be completely weaned. Hopefully her immune system is starting to fight off the CMV infection. The doctor believes this to be the case. If the upcoming CMV test shows a lowered viral load it is possible they will place Jackie on oral Ganciclovir. Note: I've been misspelling Ganciclovir for some time. I have been spelling it as Ganicyclovir. I originally googled the word to make certain of the spelling. I didn't notice that only 84,000 people had also misspelled the drug's name on their web pages (mostly Canadian pharmacies). When you google the correct spelling you receive about 10 times more hits. I guess it says something about ordering drugs off the Internet when the Canadian pharmacies cannot spell the drug name correctly!

As I mentioned Jackie's blood counts continue to be reasonably good. Her WBC count continues to decline, but the other counts are holding their own. Her RBC (Hgl) was unchanged, but good, at 10.7. Her WBC count decreased to 2.3 from 2.7 on the last two days. Her platelets continue in the normal range at 171 which is down from yesterday's 186.

Until later....

Bruce and Jackie
From Rochester, MN

Saturday, June 17, 2006

Saturday +64 (11:30 PM)

Today was another good day spent with the girls. They went to the hospital with us this morning for the daily Ganicyclovir treatment. While there, we received the results of the latest CMV test. It is still positive and at the same level as before. The viral load count was 2500. This is good since there was no increase due to lessening of her Ganicyclovir treatment from twice to once per day. I'm not certain why, but they didn't feel the current test was accurate. They are going to repeat the test on Monday. For whatever reason the nurse claimed the test needs to be conducted at exact 7 day intervals. This test was conducted at a 4 day interval. In any case, I think they will still conduct another test on Monday.

We will probably have another visit with the infectious disease doctor to determine what he wants to do. There are several possibilities. They could drop the levels of some of her anti-rejection drugs to allow her immune system to attempt to control the CMV. They could also use another, more potent, drug. The other drug has some more serious side effects and it requires more hospital time. Due to possible problems to kidneys they require a unit of fluids be given prior to the new-drug infusion and a unit of fluids following. The two units are designed to fully flush the kidneys. We will know more next week.

Jackie's blood counts were good today. In fact, given the high levels I'm surprised she didn't feel better. She fought nausea all day and finally had one episode of vomiting late this evening. This may have been due to the fact that her Scopolamine Transdermal patch wasn't changed today. The little round patch goes behind her ear and seems to work. In any case, we changed it this evening in hopes it would improve her nausea.

As I mentioned her counts were good. Her RBC (Hgl) was 10.7 which was up from yesterday's 9.9. Her WBC count decreased slightly to 2.6 from yesterday's 2.7. Her platelets were 186 which was an increase from yesterday's 125.

After the doctor's visit we took a long drive around the area. We took a drive to Winona and then on to Red Wing. We spent quite a lot of time driving along the Mississippi River.

Tonight the girls are dividing up the spoils of Jackie's makeup bag. You may recall the doctor's told us she could not use any makeup for the 100 days of the transplant. She was also told not to use any of her old makeup after the 100 days. It seems that makeup is chock full of bacteria. She was sad - and I cried when we got the news. I had some idea of the replacement cost:) In the end we decided to donate her makeup to a needy group. As it turned out, this happened to be Brittany and Tiffany! The photo above is them getting ready to divide the spoils!

Until Later....

Bruce and Jackie
From Rochester, MN

Friday, June 16, 2006

Friday +63 (9:30 PM)

Tiffany and Brittany arrived last night at about 2:15 AM. Jackie slept through their move-in next door. This morning as we were preparing to leave for the morning hospital appointment they walked in and surprised her. There were lots of hugs and a few tears. Unfortunately the cameraman-in-residence failed to record the reunion. Later in the day there was a reenactment of the morning reunion but the acting was so bad that a vote was taken and the decision made to let no one see the performance:)

Jackie was completely surprised and had no idea they were coming. Naturally she was thrilled to see them.

We spent our normal 2 hours or so at the hospital with the girls. Later in the day we had lunch at The Olive Garden and drove around the local Rochester area. This evening we watched a little TV and visited with the girls.

Jackie had a good day. She was a little more tired than usual and required a nap after our return from the hospital. Her blood counts were mixed today. her RBC (Hgl) remained the same as yesterday at 9.9. Her WBC count declined to 2.1 from 2.7 yesterday. Her platelets were basically unchanged at 121 from yesterday's 125.

Tomorrow our plan it to drive around the river and lakes area if the weather is nice. Hopefully the cameraman can get a few good photos and some video.

Until Later,

Bruce and Jackie
From Rochester, MN

Thursday, June 15, 2006

Thursday +62 (10:30 PM)

Jackie had another good day today. She had little or no back pain and very little nausea. She did experience a lower energy level today . This is likely due to a decrease in the RBC (Hbl) level. Her counts have trended down today. This is probably due to the growth factor shots being discontinued. Hopefully they will stabilize before dropping too low.

With regard to levels her RBC (Hgl) level was at 9.9 today compared to yesterday's record 11.3. Her WBC count decreased to 2.7 from yesterday's 5.1. Her platelets also declined to 125 from the prior day's 150. The large drop in the WBC count can be directly attributed to the stoppage of the growth factor shots.

This evening we had a wonderful dinner with the other Tulsa couple living in the building. She will be undergoing an autologous stem cell transplant next week.

Of course the girls will be arriving tonight as a surprise to Jackie. They will arrive in the middle of the night and will be in the apartment next door. Jackie has no idea they are coming and it will be a complete surprise. I plan to have them come in just before we leave for the morning hospital appointment. I'll try to get some video I can post.

Until later....

Bruce and Jackie
From Rochester, MN

Wednesday, June 14, 2006

Wednesday +61 (9:30 PM) The Rocket Continues

Again, I'm glad to report that Jackie's counts continue to rise. Although as I suspected, yesterday's platelet count was a transcription error. It was reported as being 223 when in fact is was 123. That was still an increase. Today's platelet count was 150 (normal 150 or above). The good numbers are her RBC (Hgl) at 11.3 (above 12 is considered normal) and her WBC count at 5.1 (normal range 4.5 - 10.0). Her ANC (absolute neutrophil count) was at 2.36. So...we now have two of three blood counts within "normal" ranges. They have discontinued the growth factor shots so hopefully the counts will continue to rise.

The increase in the hemoglobin (Hgl) has given her a massive increase in energy level. Today was almost a perfectly normal day. Although she had a wave of nausea and vomiting episode this morning prior to her Ganicyclovir treatment. This is a strange occurrence. She had a breakfast of scrambled eggs and cereal and felt perfectly normal right up until the time she became nauseated. The entire nausea session lasted less than 10 minutes and then she felt fine. It seems it is part of the recovery process. The nurse was in the room at the time and commented that this sort of thing was perfectly normal. The rest of the day she felt fine, slept a little, and did some light housework (no laundry, that's my שטיק). She had not back or neck pain at all today. This was a big relief! She also called and spoke with the woman from Tulsa that will be undergoing a transplant next week. We are scheduled to have dinner with them tomorrow night.

We also received the results from her latest chimerism test today. As expected she was still 100% donor engrafted. This allowed the doctors to reduce her Mycophenolate dosage again. This is one of two anti-rejection drugs that are used to keep her body from rejecting the donor cells. The original dosage was 3750 mg (3.75 grams) per day. This is a massive dose. It is now 1250 mg (1.25 grams) per day. This will be reduced to 0 by day 100. At some point the reduction could lead to a GvHD situation that would require treatment. Should this occur, the likely treatment would consist of some form of steroids.

So, once again, the news is all good. We hope it will continue. There are still potential problems that can pop up so stay tuned.

Until Later....

Bruce and Jackie
From Rochester, MN

Tuesday, June 13, 2006

Tuesday +61 (10:00 PM) Through the roof!

I am happy to report that Jackie's counts have once again soared through the roof! Today her RBC (Hgl) increased to 10.5 from yesterday's 9.8. In spite of the good numbers she had a lack of energy. I'm not certain why...because usually this is a real indicator of how she will feel. Her WBC count improved to a respectable 2.3 from yesterday's 1.3 and the prior day's 0.8. This count increase is directly related to the use of Neupogen growth factor. Her platelet counts (and I hope the nurse didn't make a mistake in transcribing them) shot up to a record 223 from yesterday's 121. Jackie probably hasn't seen a platelet this high in 5 years! Hopefully the nurse transcribed it correctly.

In spite of the great numbers Jackie felt tired a lot of the day. She had several bouts of back pain. Rather than occurring early in the morning they began in mid-afternoon. She eventually required a pain pill and some extra sleep but in the end she felt good enough to complain about the way I was doing laundry. She thinks I put too many clothes in the combination washer-dryer. I say if room still exists in the didn't put in too many. If there are any guys reading this weigh in and help me out. The woman all seem to stick together on this subject:)

Of course the increase in numbers can also be attributed to a reduction in the Ganicyclovir and Mycophenolate. We received the results of the latest CMV test today. Although still positive, it had dropped to 2500 from 4000 two weeks ago and 3000 last week. We are hoping that the once-per-day treatment will not lead to an increase in this count. With luck her immune system will begin to fight off the CMV. They will perform another CMV test on either Thursday or Friday of this week. If the number has improved they may discontinue the IV Ganicyclovir entirely and switch to an oral antiviral medication.

Yesterday they performed a chimerism test. We should have the results tomorrow. The last chimerism test revealed that Jackie was 100% donor engrafted. They believe the new test will show the same result. If so, they will likely decrease the anti-rejection drug Mycophenolate even faster than planned last week. I think they would like to induce a little more GvHD to make certain it has been effective in clearing and killing all CLL cells.

I had a long conversation with the nurse today about the transplant center. She has been on the floor and doing transplants for a long time. I remarked that I had seen a lot of people come in very sick and walk out more-or-less healthy. I said that to the best of my knowledge I had yet to see anyone die from the transplant. She confirmed my observation and said it was actually a rare event. I found it interesting that she said one of the difficulties in talking with new friends about her job was explaining to them that she rarely dealt with death. She said the real problem for her comes from people who return to visit "their old friends...the nurses" after being away from the center for six months or year. When they leave they are always bald and when they return they have lots of new hair. She never recognizes old patients because they've changed so much and look so much better - and that makes her feel bad.

So, all-in-all the news is good today. As we have all seen this can change rapidly. Hopefully the good news will continue and she will graduate to clinic status shortly.

The photos were taken on the Skyway that connects our building to the one next door. One photo looks toward the Mayo Clinic. The other photo looks toward the convention center.

Until Later...

Bruce and Jackie
From Rochester, MN

Monday, June 12, 2006

Monday +60 (10:00 PM)

Today marks two months as a post-transplant patient. We've now been here in Rochester about three months. If you recall we were here for almost a month leading up to the transplant.

Jackie had a good day today. She did not have significant back pain this morning. Perhaps this is due to the lessening of the drug dosage. Her energy level was also good. She felt good most of the day. Oddly enough she did experience some significant back pain later this evening but it seems to be getting better just before bedtime.

We met with a new "on call" doctor today. Some of you may recall that the doctors rotate through the hospital for a two week period. For the past two weeks we have had her primary transplant doctor as our daily point of contact. He rotated out of "rounds" on Sunday. Other than the food, this has been my only other pet peeve with the Mayo Clinic. Just as you seem to get used to one doctor, another takes over. It takes a day or two to re-educate the new doc as to what is going on with your transplant. I'm sure this rotation system works well in most of the other hospital wards, but a 4 week rotation period would work much better on the transplant unit.

The new doctor consulted with her primary transplant physician and they are working toward getting Jackie into a clinic-visit only situation; no daily hospital visits, blood counts, etc. The doctor this morning was very positive regarding her condition. He stated that had it not been for the CMV episode Jackie would have returned home long ago. The CMV and the medications are what are holding her back. Still he feels that further reductions in her medications will result in a lessening of the CMV viral load due her own immune system's ability to help fight the disease. They conducted another CMV test this morning. I should have results tomorrow. I doubt it will be negative; I just hope it hasn't increased.

Jackie's counts improved from yesterday. Her RBC (Hgl) count improved to 9.8 from yesterday's 9.4. Again, small changes in these numbers make a huge difference in her overall well being. Her WBC count increase from yesterday's miserable 0.8 to 1.3. I will be glad when this returns to the 3.0+ level! The increase in the WBC count is likely due to the lessening of the Ganicyclovir treatment to only once per day as well as the Neupogen growth factor shots she is receiving. Jackie's platelets improved to 121 from yesterday's 109. Again, I would like to see these above 150...but 121 is still great considering where they were 6 months ago!

The doctor led Jackie to believe she might be able to return home in a week or two for a short visit. I hope he is correct. I hope he hasn't oversold the situation. I've tried to explain to Jackie that a lot of things can still pop up and we will likely be here for the full 100 day treatment protocol. IF we get to return home it will be a bonus. I've explained to her she shouldn't get her hopes up. With the rapid taper of the Mycophenolate we could see some GvHD that would result in a setback. I try not to be negative, but I hate to see her disappointed if things don't work out as quickly as she would like.

Until later...

Bruce and Jackie
From Rochester, MN

Sunday, June 11, 2006

Sunday +59 (9:30 PM)

Today was another one of those somewhat down days. Although Jackie felt reasonably well today, she had very little energy. Once again she was nauseated this morning and had one spell of vomiting. Fortunately this didn't last long and she had very little back pain today.

We met with the doctor this morning during her morning Ganicyclovir treatment. Of biggest concern is her continued decline in blood counts. Her WBC count has dropped to just-post-transplant levels. She is officially neutropenic. Fortunately she has no fevers. If she does begin to suffer from neutropenic fever they will place her on IV antibiotics as a precautionary measure. The doctor feels the Ganicyclovir, along with the high doses of Mycophenolate, are the contributing factors for her declining counts. Therefore they are decreasing her Ganicyclovir treatments to once-per-day. They decreased her Mycophenolate (pills) by another 25%. Of course the danger comes from an increased CMV viral load count, the onset of GvHD, or the possibility of Jackie's immune system rejecting the donor cells. The hope is that the reduction in immunosuppression by a reduction in the Mycophenolate levels will lead her own immune system to kill off the CMV virus without inducing any significant GvHD. Again, walking on the edge of the knife! Jackie continues to receive Neupogen shots, but these have failed to produce any significant results.

With regard to counts, her RBC (Hgl) count declined from yesterday's wonderful 10.0 to 9.4; therefore a decline in energy level. Her WBC count declined from 1.3 to 0.8. This is in spite of the fact that she is receiving daily growth factor shots. I didn't obtain her ANC (absolute neutrophil count) today. As a general rule you can assume the ANC will be about 60-70% of the WBC count. This likely places her below the .5 level which is the official starting point for declaring someone "neutropenic". Due to the low levels we have reverted to many of our super-hygenic precautions that were in place post-transplant; constant hand washing, spraying the apartment with dilute alcohol solution, countertop disinfectant, etc. Her platelets declined to 109 from yesterday's 133.

With a little luck these changes will re-ignite her immune system and counts will improve, CMV will decline, and there will be no significant GvHD issues. I don't think the doctors, nurses, or I will be too surprised if there are still a few bumps along the road.

Until later...

Bruce and Jackie
From Rochester, MN

Saturday, June 10, 2006

Saturday +58 (9:30 PM) What A Difference A Day Makes

I am happy to report that Jackie (for now) seems to be on the road to recovery! Although she started the day with a sudden and very short wave of nausea and vomiting, she did really well today. The nausea was likely caused by a morning dose of Oxycodone to help her usual morning back pain. Once that was out of the way she experienced very little nausea or back pain. Her energy level was very good and her spirits were high. A lot of this is due to her increased blood counts. The counts have likely increased due to the Neupogen shots she has received. Although the growth factor shots don't explain the sudden increase in her RBC (Hgl) count. The growth factor shots really only increase the WBC count.

With that said, her RBC (Hgl) increased to 10.0 from 9.1 yesterday. It is amazing what a difference a small change in these numbers mean in terms of overall well being. I've gotten so good at recognizing her Hgl count from her morning energy level I can usually guess the number within a few tenths of a point. If Jackie ever gets into a normal 12-13 range she will be ready to take on the world!

Although she is receiving growth factor shots in the form of Neupogen her white cells have not increased dramatically. In fact they decreased slightly from yesterday. Today's count was 1.3 down from yesterday's 1.4. Once again I did not get an ANC level, but it is likely to be in the .60 - .75 range. This is still very low and danger from infection is higher. Jackie's platelets moved up a bit today. They were at 133 compared to yesterday's 118. They continue to do well!

I know there are other people besides family and friends who are reading the blog. This is due to the fact that the blog is linked to a couple of CLL topic sites. For this reason I wanted to mention an article by Cheya Venkat. Cheya is the founder of It is the premier site for all things CLL. For those dealing with CLL she has a new article dealing with opportunistic infections. The direct link to article is:

I strongly recommend anyone dealing with CLL read the article. In some ways the last 4 or 5 paragraphs are the most important parts of the entire article. She talks about how local oncologists and hematologists deal with the somewhat rare CLL disease. I find her analysis to be dead-on.

Technical stuff: Lastly, some people may wish to receive the blog as an RSS feed. If you don't know what an RSS feed is don't worry about this paragraph! For the RSS feed link use: I also have all the videos done here in Rochester available as video podcasts. I haven't determined how to include the podcasts in this blog. If you would like one for your video iPod email me and I will see if I can determine how to either return one or include it as part of this blog. You will notice one change. I have added a flash film loop that will be included with each new blog entry. As I take photos I will add to the film loop. If you wish to view a larger version of the photo you will need to install a film loop viewer. Clicking on a photo in the loop will lead you to their site and you will be given instructions for installing either a Windows or Mac viewer. If you are using a dial-up Internet connection don't bother - it will be too slow.

Until Later...

Bruce and Jackie
From Rochester, MN

Friday, June 09, 2006

Friday +57 (10:30 PM)

I am happy to report that Jackie felt better today. She still isn't running races or doing 2 hours in the gym, but she felt markedly better.

The Neupogen shot she received yesterday increased her WBC counts today. Her WBC count increased from 1.1 to 1.4 today. While this is nothing to write home about, it is an improvement. I didn't get the ANC count; I forgot. It is based upon a mathematical formula and is likely to be about .75-.90. Her RBC (Hgl) count increased from 9.0 to 9.1 today. Her platelets, however, took a hit and decreased to 118 from 142 yesterday. She received another Neupogen shot today and with luck her counts will continue to increase.

She continues to have some minor electrolyte imbalances. Her magnesium levels continue to lag behind. She is currently taking 7 slow-release magnesium tablets per day. At some point this will level out and normalize.

Not a lot happened to day. It was cool and cloudy in Rochester. Tonight we are receiving some moderate rain showers. The big event in town is the state Democratic Party meeting. We have died-in-the-wool Democrats in every hotel and on every street corner.

One last item...some of you may remember the lady that required two transplants. I asked the nurse this evening about her progress. I have not seen her or her husband in about 10 days. After I got the idiotic "we can't discuss other patients due to HIPA laws" speech she told me the lady was doing fine. She now has "days off" where she isn't required to come into the hospital and things are going well.

I've included a couple of new photos. One is a night shot that were taken our our apartment window. The other photo was taken from the hospital window looking out toward the power plant and Silver Lake.

Until later...

Bruce and Jackie
From Rochester, MN

Thursday, June 08, 2006

Thursday +56 (10:15 PM)

I wish I had better news to report, but Jackie's counts continue to drop. I am not certain why, other than the long course of Ganicyclovir and perhaps the CMV it is working against. They began growth factor shots today. They use Neupogen which a subcutaneous injection in the stomach. It is usually fast-acting and will hopefully increase her RBC and WBC counts.

Her RBC (Hgl) level dropped to 9.0 from 9.1 yesterday. For this reason she has almost no energy. She spent much of the day in bed. We were able to go for a 2 hour drive while they cleaned our apartment today. Most of the time she was asleep in the passenger's seat. Her WBC count dropped to 1.1 from 1.55 yesterday. More concerning is her ANC (absolute neutrophil count). This count determines how susceptible to infection she might be. Her ANC count is .65 down from .78 yesterday. Below .50 she is likely to suffer neutropenic fevers (again) and require additional IV antibiotics. You may recall that the body has a way of saying, "Hey...something is wrong here. We don't have any white blood cells and the neutrophil level is very low. We might get an infection! Why don't we just raise the body's temperature to help fight off anything that might happen to come along?" In most cases there is no infection, just a fever. But to make certain they will (again) do frequent blood cultures and start IV antibiotics if her temperature rises above 101.3. So far no fevers, so that is good. Her back pain was also better today. I've also failed to mention that her hearing is nearly back to normal. You may recall she lost quite a lot during one of the IV antibiotic treatments. I'm not certain her hearing is completely normal, but it is certainly much better.

Jackie's platelets continue to hang in like troopers! The decreased to 142 from 155 but that is still good. As you may recall this is the area that caused the most problems last year.

The doctors and nurses (again) don't seem concerned. They all feel these sorts of things are simple "bumps in the road" and "if it wasn't this it would be something else".

I think as the Neupogen shots kick in she will feel better soon. I also think as her levels of Mycophenolate (the anti-rejection drug) drop it will allow her own immune system to recover and fight off the small amount of CMV that remains. Of course the most dangerous and troublesome part of the transplant still lies ahead - the possibility of GvHD. If the anti-rejection drugs are tapered too quickly it will give rise to GvHD. As the doctors often point out, "They are walking on the edge of a knife".

I've included a couple more photos of the subway and the Mayo Clinic. The sculpture you see is quite large. It hangs on one wall and is probably about 30 feet tall. It appears to be made of bronze. Below the sculpture is a grand piano that is played by volunteers every day.

Until later...

Bruce and Jackie
From Rochester, MN

Wednesday, June 07, 2006

Wednesday +55 (10:30 PM)

Once again, Jackie had another so-so day. Her back pain was a little better but her blood counts continue to drop. This results in a lack of energy. Today she spent much of her time in bed.

This afternoon we met with the infectious disease doctor. The idea was to consult with him with regard to the CMV. He reassured us that although 22 days of twice-per-day infusions may seem like a lot, it really isn't much compared to what they normally see. Most patients are on Ganicyclovir treatments for at least one month. Many patients receive treatments even longer. He reassured us that Jackie's viral load was quite low. To the best of our knowledge it is still hovering at the 3-4,000 range. He explained that the test is somewhat imprecise for small counts. He told us the Mayo Clinic record for a CMV count was 21 MILLION. Patients often see counts in the hundreds of thousands.

He feels the reason we have not seen a complete reduction in the counts is due to the fact that transplants patients like Jackie are on quite heavy doses of Mycophenolate. They were going to taper the dosage by 1/4 gram every 5 days. After speaking with the transplant doctor they decided to accelerate the rate. We will find out the exact rate tomorrow.

As I mentioned, Jackie's counts have continued to decline. Her WBC count was 9.1 today compared to 9.6 yesterday. At this level she does not have much energy. Small changes to this number alter her activity level. Her WBC count declined to 1.5 from 2.2 yesterday. Her ANC (absolute neutrophil count) was only .78. Below a level of .5 she will be considered neutropenic. At these levels she is one again subject to pneumonia and infections. We will have to be very careful one again with regard to contact with others, etc. She will go back to wearing a mask at all times and we will avoid restaurants. The good news is that Jackie's platelets continue to do well. They declined to 155 from 165 yesterday. This is still within normal limits. Her other fractional blood counts (creatine, bilirubin, etc.) are all very good and are normal in most cases.

To increase the RBC and WBC levels they will begin giving Jackie growth factor shots beginning tomorrow (Neulasta). In most cases these are very fast acting and should return the levels to more normal levels in short order.

Lastly the girls are going to visit Jackie a week from tomorrow. This will be a surprise visit. Since Jackie doesn't read the blog she won't know about the visit. I just wanted to remind everyone that it will be a complete surprise so if you happen to speak with Jackie please don't mention Tiff and Britt will be coming to Rochester. If she knows they are coming she will attempt to clean this little apartment for a week! And for now she just doesn't feel like doing this sort of thing.

I've included a few more photos of the Mayo Clinic. I've included one of the "subway" system. It is simply a system of tunnels that connect the buildings. In parts of the subway you can find all sorts of underground stores (Subway, Quizznos, TCBY Yogurt, etc).

Until later....

Bruce and Jackie
From Rochester, MN

Tuesday, June 06, 2006

Tuesday +54 (10:30 PM)

Jackie had another so-so day. She was less nauseated, but still didn't feel well much of the day. A lot of time was spent on the sofa and in bed. Again, as the day improved she felt better.

We spoke with the neurologist this morning. The MRI scans were normal. She shows to have a small amount of arthritis, "but nothing to write home about". He feels much of her back pain is due to the CMV virus. This probably makes sense because she often describes her pain as being similar to flu-like symptoms. In order to better battle the CMV virus they are tapering off the Mycophenolate dosages. This is one of the anti-rejection drugs. They plan to taper her at the rate of 250 mg every 5 days. Currently she is at a daily dosage of 2250 mg per day. So, as you can see it will be a long time before this medication is completely gone.

Jackie's blood counts recovered somewhat today. Her RBC (Hgl) improved to 9.6 from 9.3 yesterday. Her WBC count improved to 2.2 from 1.9 yesterday. Her platelets improved to 165 (one short of her record 166) from 148 yesterday. As I've said many times, if her CMV problem can be solved I think her blood counts will skyrocket. The Ganicyclovir severely depresses blood counts. Of course the CMV itself depresses the blood counts.

I've included a few photos of the inside and outside of the Mayo Clinic. You can click on any of the images for a larger version. The photos of the artwork are from some very famous artists. The flowers are by Andy Warhol (there are actually 9 paintings). The other painting is by Joan Miro. I don't know the value, but it is likely that the combined values would be in the millions. People walk by them everyday and pay absolutely no attention to them. I've suggested to a few nurses they load them into a pickup truck and take them to Southeby's Auction in NY where they can be sold and the money placed toward the construction of a cafeteria! The Warhol paintings are directly across from what passes for their version of a cafeteria. To bad David Geffen wasn't into cooking (instead of auditoriums). The photo of the lamps is part of their collection of Louis Comfort Tiffany work. Again, I don't know the value of the lamps, but I've seen ones like this on the Antique Roadshow. As I recall, a lamp like one of these is valued in the low hundreds-of-thousands...just enough to buy a good hot dog steamer and soft serve ice cream machine:)

Monday, June 05, 2006

Monday +53 (10:15 PM) Mickey's World

Well, as this process seems to was one of those bad days for Jackie. I'm not certain why, especially when the last two days went so well. She was nauseated much of the day. She had three separate instances of vomiting today. Her back pain was intense for most of the day. All-in-all she spent most of the day in bed.

She had a neck and back MRI study done this afternoon. We will visit the doctors in the morning to see if there are any results. Nobody expects any surprises, it is mostly a precautionary set of tests.

Her counts are lower today; especially her WBC count. This might indicate some other problem that hasn't presented yet. Her RBC (Hgl) count is 9.3 down from 9.7 yesterday. her WBC count is 1.9 down from 2.8 yesterday. Her platelet count is 148 down from yesterday's above-normal 160.

Her CMV count is also still positive. It is down a little from last week at 3000. I don't know if they will make a change to her meds to try and eliminate the CMV or if they will continue with the Ganicyclovir. I will probably know more tomorrow.

I've included a couple of videos tonight. The first one is another piece of the video that was sent from home. I've been including a little bit every day so others can see what we received. I've included the "ending" tonight. This requires a little explanation...

Mickey Martin, our OK sales rep, is the last segment you see. In the video you will see him "moon" us with a Halloween-costume fake derriere. Why does he do this? Well, it is a bit of a long story so here goes...

When I first began flying helicopters the insurance company required that I only fly by myself until I obtained a certain level of experience. Mickey and his wife live on a 1000 acre ranch that lies on a direct line from our house to Tulsa. For a couple of months as I built experience in the helicopter I would often fly from the hanger at the house to Tulsa. I would usually buzz Mickey's house and sometimes circle and wave at Mickey and his wife Kelly.

One nice day shortly after I passed the experience level necessary for me to begin carrying 1 additional passenger Jackie was flying with me. As usual, we were coming back from Tulsa when we flew over Mickey's house. As I circled I could see him ride up to the house on his 4-wheeler. I asked Jackie if she would like to land in his yard for a visit. She said, "Yes". Now...Mickey knew that I could only fly alone due to insurance requirements. He didn't know I had passed the requirement and could carry one additional passenger.

I set up an approach pattern that would allow me to make a landing right at his front door. I would be less than 50 feet from the house. At about 100 feet up and on final approach Mickey turned around and dropped his pants to moon me. He continued this until touchdown. Naturally Jackie and I were laughing so hard I almost had to abort the approach.

I think sometime around touchdown the thought occurred to Mickey that MAYBE I might not be alone. He slowly turned around and staring out the helicopter bubble window were TWO people. He immediately recognized Jackie. He pulled up his pants and ran into the house. I don't think he wanted to come back outside! When he did he said with all sincerity, "I'm so sorry Sis!" Since that day it has always been a big joke! We've all had fun teasing one another back and forth.

So it was appropriate that Mickey provide the "ending" for the Get Well Video. It is also appropriate I provide a response. Here they are....

Here is the response video. I call it Brokeback Martin

Until Later....

Bruce and Jackie
From Rochester, MN

Sunday, June 04, 2006

Sunday +52 (7:00 PM) It's a Small World After All

Today was a good day for Jackie. Although she started the day with her back hurting she improved a great deal during the day. Of course a couple of pain pills helps, but even without these things seem better!

Jackie's blood counts are improving. Her RBC (Hgl) count was 9.7 up from an earlier 9.5. Her WBC count was 2.8 up from an earlier 2.4. Her platelets have once again moved into the normal range. They are currently at 160. Her "record" high after the transplant was 166. I think she will exceed this in a few days!

We were speaking with the nurse this morning and we found that all CMV-positive patients recently saw an increase in their viral load counts on the same day. The doctors questioned the lab results but the lab stuck with their analysis and insisted nothing could be wrong with their equipment. In any case, I suspect that Jackie's last CMV test was an anomaly. Her CBC counts have continued to improve which would mean to me that the CMV is on the decline. It seems odd to everyone that 4 patients would have seen an increase in viral load counts when all four were under treatment and the counts should have been on the decline.

As I mentioned in the title of today's blog - It is a small world after all. Today we were boarding the apartment building elevator when a man got off. I just glanced at this hat and it said "ACK". For those that might not know this is the ICAO airport designator for the Nantucket airport; it is like LAX or DFW. For whatever reason, you see a lot of ACK bumper stickers, hats, jackets, etc on ACK. I stopped the gentleman and said, "Excuse me...are you from Nantucket?" He replied, "No, I'm from Tulsa. We just vacation on Nantucket." As you might guess this started a long conversation. His wife is here and will be undergoing an autologous (her own) stem cell transplant. She is in the preparatory stages.

We spent the afternoon driving around the Mississippi River again today. Today we spent most of the time on the Wisconsin side of the river. There are a lot of fun little towns. There are a number of them that seem to have a quaint little bar and grill. At each one you would find dozens of motorcycles lined up. These little towns never seemed to have more than 300-500 residents. It seemed the motorcycles outnumbered the residents.

I've include another video. For reference, the hair is attached to the hat! The idea was conceived by my mom. Mickey Martin is our OK sales rep. I think most of you will be seeing more of him in the days to come:) The photos were taken today along the river, etc.

Until Later...

Bruce and Jackie
From Rochester, MN

Saturday, June 03, 2006

Saturday +51 (10:30 PM)

Today started off bad for Jackie. Her back was really bothering her early this morning. Fortunately it improved throughout the day. This was helped by the ingestion of a couple of Oxycodone tablets.

We spoke with the doctor this morning and he wants to do some imaging studies of her back and neck to see if there is anything other than medicine that might be causing the pain. We really do not expect to find anything. She will also see the neurology department for a consult. Again, likely nothing will turn up but they are taking every precaution. To help ease the pain they are tapering her off the Mycophenolate anti-rejection medication. This will (hopefully) allow her new immune system to help fight the CMV which would lead to a reduction in the Ganicyclovir anti-viral treatments. They want to make certain the CMV remains in her blood only and does not settle into any solid organs. When that happens the problems becomes more serious.

I do not have any blood counts today. Why? Because they did not do a CBC. This means that they feel she is stable enough to skip some days. I'm not certain how often these will now be drawn. Perhaps every other day or every third day will be often enough. When we found we had no CBC counts we were almost depressed! We are so used to following these and charting any progress (or lack thereof) we didn't know what to think.

This afternoon we took a long drive over into Wisconsin. We drove to Red Wing, MN and around the Mississippi river. It was really a pretty drive. We were able to drive on a road along a lake formed by the river for about 30 miles. We saw hundred and hundreds of motorcycles making the same trip. This included a group of about 40 Cushman scooters. I'm not certain how far they intended to travel. As I recall from my teenage years they only go about 40 mph and were subject to all sorts of mechanical problems! When I was a kid you could have taken your pick of old Cushman scooters for $50. Now they are collectable and worth thousands!

Our "starlet" agreed to do another video. I've included her latest work! This time she is far more upbeat. The video is a bit longer. It is the second video. Watch the first video before watching the other. It is a portion of the one that we were sent from Pryor. Once you see it, some of Jackie's remarks will make more sense.

Here is the first one from Pryor:

Here is Jackie's video:

Until Later....

Bruce and Jackie
From Rochester, MN

Friday, June 02, 2006

Friday +50 (11:15 PM)

Sorry, this is a little late in getting posted. Jackie kept putting me off all day for her "video shoot". I finally got her to give me a few seconds. Believe me, I tried for more. I had a fancy introduction to use for what I thought would be a 4 or 5 minute "hello to everybody" video. It was like negotiating with a major Hollywood starlet. "Don't get any close-ups". "Let me get some lipstick on". "Let me change into some better clothes".

The problem I had was that she got very emotional every time she thought about thanking everyone that sent her the recent video from home. For those that may not know, we received a video from home with all her friends wishing her well. Due to the length I cannot include all the video. I took one small clip from it and posted it along with her "thanks". I'll keep trying to get more - I can be persistent!

In the beginning of her response she is laughing. This is because I said something funny trying to change her mood. By the end, she was getting teary-eyed again. In any case, she wishes me to reiterate her thanks again.

Ok, now for the medical part. We spoke with the doctor's this morning. Her chimerism test results were back and she is 100% engrafted. This is good news. They usually like to see 90% by day 100. She is 100% by day 50. She continues to have some severe back pain and nausea. The doctors think this may be as a result of one of the medicines. I believe it might be due to frequent muscle tensioning due to being constantly cold. It seems the transplant process causes problems with the body's regulation of perceived body temperature. In spite of warm weather, she is always cold. Each morning we walk to the hospital. The temperature will be in the high 70s and she will wear two sweaters. Hopefully this will resolve soon. If she had no back pain she would feel good most of the time.

I think there was an anomaly with the CMV test. One of the nurses said that other CMV tests conducted earlier in the week may have been in error. In any case they feel the higher level is the correct one. With a viral load of 4000 this is still not terribly high. They feel that one of her meds (Mycophenolate) is suppressing her immune system to the point that it is getting no help in fighting the virus. Someone posted on the blog that there is a 100% chance that her new stem cells will fight the CMV. This is correct. So...they are going to lower her Mycophenolate intake this weekend and see what happens. Unfortunately the level of this drug is difficult to measure in the bloodstream. It also takes several days before the levels drop. This means we will continue the twice-per-day IV infusions of Ganicyclovir. If that doesn't resolve the problem a change will be made to the meds.

Today turned out to be a beautiful day in Rochester. We had a late lunch at the Olive Garden again; Jackie's favorite chain/local restaurant.

Her is a very short clip from the Pryor video:

Here is Jackie's Thank You response:

Until later...

Bruce and Jackie
From Rochester, MN

Thursday, June 01, 2006

Thursday +50 (10:10 PM) CMV Update

Unfortunately the CMV test came back still positive. The viral load count has increased from 500 on Monday to 4000 today. It seems to me that one of the tests could be incorrect. We will, of course, discuss this with the doctors tomorrow morning. For now, it appears it looks like we will continue the Ganicyclovir treatments. Jackie was somewhat depressed about the newest results. She was certainly hoping to stop the twice-a-day IV treatments.

Until Later....

Bruce and Jackie
From Rochester, MN

Thursday +50 (7:45 PM) Halfway!!!

As you can see from the title today marks our halfway point! The matched-unrelated-donor (MUD) transplant protocol calls for 100 days of treatment. Maybe today we should begin to count down instead of counting up?

Actually the doctors have our count slightly wrong. They show us as being "+52". I think this is due to her having two "Day Zero" transplant days. In any case, Jackie doesn't want the mistake corrected.

I received a lot of comments from the past several days saying, "We want to see Jackie on the video". Believe me...I've tried! She has refused all efforts to do any more. I did receive a comment from her tonight saying she might "think about it" tomorrow. We'll see? She wanted to me to reiterate her appreciation to all those involved in the "Pryor" video for taking the trouble (and time) to send it along. It really made her day and couldn't have come at a better time.

Jackie had a reasonably good day today. She continues to have back and shoulder pain. The doctors think it is associated with her Mycophenolate meds. As you may recall this was reduced by 1/3 a few days ago. So far, if that is the culprit it hasn't helped.

It seems the doctor ordered another chimerism test. This is the test that tells us how many of the cells in Jackie's body are hers and how many are donor cells. This is the second chimerism test. They like to see 100% by day 100. This is a test that requires several days for results. We should have something within a few days.

We will be going to the hospital in a few minutes for our nightly Ganicyclovir IV infusion. We hope to receive the results of CMV blood test that was performed today. If it is negative she will be placed on oral anti-virals and we will likely graduate to clinic-only visits. It is possible the test won't be ready until tomorrow. If I get the results tonight I will post them as an update.

Jackie's blood counts continue to hold steady with only fractional declines since yesterday. Todays counts were RBC (Hgl) 9.5 versus 9.6 yesterday. Her WBC count was 2.4 down from yesterday's 2.6. Her platelets were 129 down from yesterday's 131.

Until Later....

Bruce and Jackie
From Rochester, MN