Wednesday +233 (Evening)

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

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

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

Until later,

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

Thursday +220 (Morning)

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

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

Until Later....


Bruce and Jackie
From Pryor

Wednesday +219 (Morning)

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

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

Until later....


Bruce and Jackie
From Pryor

Tuesday +211 (Election Night Coverage)

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

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

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

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

Until Later...

Bruce and Jackie
From Pryor

Monday +210 (Evening)

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

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

Until Later....

Bruce and Jackie
From Pryor