August 21st Update

Dear Fods,

It seems like I am always apologizing for not posting and I know that you all wonder how I am doing in between post, but unfortunately it has been a rough six weeks.

Round #3 of Vidaza left me extremely fatigued and again blood and platelet dependent. Meaning that I am at HUP every Tuesday and Friday for blood products. Somewhere in this time period, the back and foot pain came back with a vengence making it very difficult for me to walk. I had Round # 4 of Vidaza and ended up back in HUP last week with fevers and excruciating pain. Actually, I am running a fever every day, but the HUP fevers were north of 101. But luckily, no infections. It just means that the leukemia is out of control again.

Dr. Porter is away on a 6 month sabbatical doing research on stem cell transplants so I got a new doctor, Dr. Allison Loren. She is very compassionate and kind. I am sitting here at HUP getting 2 units of blood and 2 units of platelets with a low RBC and a high WBC, another indication that the leukemia is all "revved" up as they say at HUP. Heather has kept in contact with Dr. Porter and Dr. Loren and they think the next step is to try another clinical trial. I will see them on 8/31 and we will see what to do next, so long as things do not get too out of control.

I was able to spend the month of July, except for the week of chemo, at the shore with Jessie and the kids, although my beach time was pretty limited. I was able to color and play games with the kids at home in the AM and Jessie would take the kids to the beach in the PM so I could take a nap. Christian and Emma both boogie board and Christian is fearless in the water. I feel so blessed to have had this time with the kids, even though I am not very mobile. Joe is able to get me to the beach, but it is quite a chore. The 5 minute walk to the beach now takes 20 minutes, but the first look at the ocean once you pass the dunes still takes my breath away, even after all these years at the beach.

I think of you all often and hope that your summer is going well. Thank you for the cards I still receive every day and thanks for keeping in touch.

I love you all.

Debbie