Long overdue

Update long overdue ... so much happening ... so bad at keeping up with this ... sorry! In a nutshell ... Andrew's blood counts are all pretty good and no need for transfusions anymore YEAH!! ... and all clear to come out of his bubble. The immunosuppression drugs have given his liver the chance to recover and it is doing that - slowly. Unfortunately seems as though no drugs come without side effects etc. and he has had to deal with things like high blood pressure but they throw more drugs at the problems as they arise. Best news is that Andrew was really itching to get back to work and he was given the all clear to go back to work on a "do what you can" basis. He is now back at Harmonic parttime. Very tiring for him but he's pretty jazzed to be back into it and they have been really good to him about coming and going and doing what he can. Andrew is starting to slowly try to reduce his prednisone (taper off) and hoping that reducing the suppression of his donor/graft won't give him any more GVHD (graft vs host disease). I guess they are hoping that the graft becomes more "accepting" of the host over time. It's a bit of a balancing act I think. I'm just back from Canada where I completed Ironman Canada with my Team in training team ... we raised over $380,000 for the Leukemia/Lymphoma Society and that should fund a few researchers and their projects in the coming year. Harvest moon here and change of season (summer to fall/autumn) - a favorite time of year for us.

Trending in the right direction

Pleased to report that the liver counts are coming down. Blood counts are remaining stable so nothing much is on the horizon until the liver is back to normal. Just continue with the prednisone and cyclosporin. What then? Answer from the Dr is "we are in unchartered territory". I don't get much sleep but I do get a lot of programming and reading (technical manuals) done. Have also ventured out on my bike and to visit work etc. It's good not to have so many restrictions. 12 months off work .... too long. Really can't wait to get back to work.

Much better trend

The prednisone and gengraf are finally doing their job. Liver enzymes stopped skyrocketing up. Hope to see them trend down next week and for the first time in ages the red cells have held steady enough not to need the regular transfusion either. Happy with that. Doctor won't/can't make any predictions and often answers my questions with "well, you will be answering that one for us". Apart from the "wait and see" plan, the hope is to be able to start tapering off the prednisone soon and then .... the "wait and see" plan again. Another bone marrow biopsy is in the near future to give muscle to the "see" part.  Would really love to get back to work ... that's what I'm working towards.

GVHD

Still no chemo ... have GVHD (graft vs host disease) and have to get that under control first. Skin rash, dry/sore mouth and eyes and problems with the liver. On a hefty dose of prednisone and that has relieved the skin, mouth and eyes but the liver hasn't responded yet so have to add some more immunosuppressant drugs. Just hoping that suppressing the immune system won't stop the GVD (graft vs disease) fight that we hope kicked in when the chemo gave Grant's graft a chance to take hold. Frustrating but hanging in there. Still requiring regular red cell transfusions etc. Have been getting out and about a bit when the counts are up. - a day at the beach in Carmel and a visit to see the guys at work.

'Bout time for an update

Been busy celebrating birthdays. Celebrating good news too .. that the azecitidine (chemo drug) is battling the cancer. With the unexpected quick and good response to the drug they think it may be working to give the donor system a boost fighting the disease as well as knocking down the cancer itself. The bone marrow is looking a heck of a lot better than it did at Xmas time. The plan is that "when your on a good thing, stick to it" so they want to continue monthly cycles of chemo for a least a few more cycles and see what happens. We did delay the next round though because they want the neutrophil count to be recovered a bit before knocking it down again so have to wait until it reaches a certain theshold. Still requiring red blood topups but otherwise just the usual trips to Stanford and feeling pretty good overall.

Surprise!

Well I haven't had any appointments with the doctors yet but was very surprised to learn that the results of the BMB indicates that the cells in the bone marrow are almost all my donor (Grant's) cells. Reason why I am surprised is because they told me they thought the opposite would be the case. So until I have had word from the medical team .... I don't really know what is happening or what is happening next .... wonder if they do!
Feeling positive though.

Chemo Round 3 done!

Just completed round 3 (hoping it is the last one) of chemo and still awaiting results of bone marrow biopsy and to hear what the medicos have up their sleeve. Preliminary results of the BMB are encouraging ... they show a significant decrease in disease. It takes time to grow cells etc. to get chimerism results etc. apparently. Tried to do without the anti nausea drugs on day 1 ... bad move. Ordered it directly into the pic line before all else from then on in. Wonder drug.