Happy Halloween!!

Dear Fods,

We hope that this post finds you all well and ready for the busy night ahead of us! Hopefully, we will do better than our tally of trick r' treaters' for last year (2). We have enough for 200!

Since our last post, Debbie continued to do poorly on Sunday and into Monday with high fevers, 104.5, stomach aches and the rigors. The jacuzzi was running hot and often to provide her with some relief. On Monday, Debbie went to see Dr. Kuhar and between her and Heather at HUP they were able to come up with combination of high doese steriods and vicodin that has made Debbie feel much better -- even though only a short term fix. She did not have a fever since she took the first dose of steroids on Monday and her appetite is returning. Today she had gained 5 pounds since her last visit.

We had our appointment with Dr. Porter today. It was very busy and it was a very long day. We arrived at 9:30 for a 10:00 appointment and we saw the doctor at about 11:30. Heather is back in the office and looks great and we are glad to have her back on Debbie's team. She and Bridgett spent a lot of time with Debbie discussing her symptoms and checking her hot spots and Debbie was glad to be able to speak with them.

Debbie's counts were OK today although she needed platelets which were low, i.e., 10 and this was after the transfusion over the weekend. It seems that Debbie is now platelet dependent. Dr. Porter said that they can work with that, but thank God for all of the donors. It takes 4 donors for one of Debbie's packets. Her WBC is 3.7 and she had a hemoglobin of 9. The WBC could be deceiving because of the high dose steroids which tend to inflate the WBC.

As to future courses of treatment, Dr. Porter -- somewhat apolgetically -- felt compelled to again mention another transplant. Not at HUP or at Johns Hopkins, but at Jeff. Neither HUP or Johns Hopkins would accept Debbie because of the failed transplant. Debbie said "No" to that. He next suggested conventional in-patient chemotherapy and Debbie again nixed it -- after her last experience at HUP. She said that she was tramatized by the last admission and does not want to come back to HUP.

As to the next phase, Dr. Porter said that they could experiment with various doses of IV chemotherapy that would hold the leukemia at bay for a time but not make Debbie so sick that she has no quality of life. They will let Debbie finish her current steroid regime -- a couple of weeks -- and she what happens. If the fevers, stomach cramps and rigors come back -- they will start a maintenance round of chemotherapy to make it easier on Debbie, plus they always have the steroids.

Unfortunately, the steroids are not a long term fix as they cause their own muscle wasting and imunosupression of the patient further allowing for infections. When we got home today, Heather had called in a pre-emptive prescription to avoid infections while Debbie is on her current steroid regime.

At one point in the conversation, Debbie asked Dr. Porter, "How long do I have if I do nothing? His anwer was 6 weeks!

While I am virtually certain that Debbie will do better than 6 weeks, we are now entering iinto a different phase of the treatment regime which will focus on extending Debbie's life -- but with as much quality as possible.

Thanks to all for your cards, blogs and calls.

Debbie sends her love to all.