Tuesday +204 Halloween

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

Until Later...

Bruce and Jackie
From Pryor

Friday +200 (Evening)

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

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

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

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

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

Until next time...

Bruce and Jackie
From Pryor

Tuesday +197 (Afternoon)

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

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

Until later...

Bruce and Jackie
From Pryor

Monday +189 (Evening)

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

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

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

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

Until later....


Bruce and Jackie
From Pryor

Thursday +185 (Evening)

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

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

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

Until later...

Bruce and Jackie
From Pryor

Monday +182 (Evening)

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

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

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

Until later...

Bruce and Jackie
From Pryor

Wednesday +177 (Evening)

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

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

Until later...


Bruce and Jackie
From Pryor