Decitabine

            I’m sitting in a room at Cox 1, the leukemia outpatient clinic at MGH, which we inhabit for two or more hours twice a week these days. David is napping while he receives his first infusion of yet another chemotherapy drug: DECITABINE. It is mainly used for myelodysplastic syndrome, a blood disorder in which the bone marrow doesn’t produce healthy blood cells of any type: red, white, or platelets.

Decitabine is also used for AML (acute myeloid leukemia), in which the bone marrow produces too many immature white blood cells (blasts), which proliferate quickly and crowd out the healthy white blood cells (increasing the risk of infection), red blood cells (causing anemia),  and platelets, (increasing the risk of uncontrolled bleeding).

            David will return to MGH every morning for the next 4 days (5 days total this week) for an infusion of decitabine, then take 3-4 weeks off while his healthy blood cell counts recover. As Dr. Gaby, who is covering for Dr. Amir Fathi this week, explained, decitabine is a slow acting chemotherapy. We won’t know for several cycles (5 days of infusion, 3-4 weeks waiting for the blood counts to recover) whether it is working well. If it is not working, we’ll know quite quickly: the blasts will continue to increase rapidly.

            David’s white blood cell count was high today: 90 (thousand), increased from the November 24^th reading of 24 (target range is 4.5 to 11). He will continue to take hydroxyurea for a few days to lower his white blood cell count and give the decitabine some time to start working.

            So, as has been the case since the beginning, no news will be good news. The overall prognosis is still very poor: we are not expecting a cure at this point; we do hope for some time where David continues to feel fairly well.

Twice a week they do a complete blood count (CBC) and measure the number of white blood cells and what percentage of those are blasts (leukemic cells). Less frequently they aspirate bone marrow from David’s hip and measure the percentage of blasts in the marrow, where all blood cells originate. None of the news is good.

            The bone marrow biopsy on November 20^th showed a large increase in the percentage of blasts in the bone marrow, where all blood cells originate: 83% blasts, up from 14% blasts on October 6^th.

Date of Blood Draw (CBC)	White Blood Cell Count	Percentage Blasts in circulation	Date of Bone Marrow Biopsy	Percentage Blasts in Marrow
6-Oct-14	2.2	2.60%	6-Oct-14	14%
10-Oct-14	2.7	8%
15-Oct-14	3	9.20%
23-Oct-14	15.7	47%
24-Oct-14	14.9	53%
26-Oct-14	15.5	65%
30-Oct-14	8.81	55%
2-Nov-14	6.68	33%
5-Nov-14	4.8	39%
10-Nov-14	7.29	29%
13-Nov-14	8.73	46%
16-Nov-14	10.04	29%
20-Nov-14	12.29	53%	20-Nov-14	83%
24-Nov-14	21.94	55%
1-Dec-14	90.36	65%

            All travel went well. R’el and David drove 1000 miles to spend time with Matt (Chicago), with a 130 mile side trip to see Annie (U of Wisconsin in Madison) and bring her down to Chicago. They had Thanksgiving dinner with Jim’s mom: Meemaw, a.k.a. Charlotte. Matt moved to the neighborhood of Bryn Mawr on the north side of Chicago, near the lake.

Jim and I flew to Salt Lake City to spend Thanksgiving with Jim’s brother, Jeff. We took a side trip to Shelley, Idaho, where we held a planning meeting for the Alan and Mary Cannon Reunion, 24-26 July 2015. (Mark your calendars!). We stayed two nights at Charlotte’s house, which Alan and Mary built back in 1965, when Jim was ten. Jim had never been there by himself; his whole family used to visit from Chicago every summer. It was a wonderfully relaxing getaway. The house is set right on the Snake River, visible through the floor to ceiling windows. Back in Salt Lake, I took a 7 ½ mile walk, covering all the side streets between 900 East and 1300 East, from 45000 South to 39000 South. The weather in Salt Lake was warm and lovely. We all missed the snow in Lexington.

            Last night was our first Advent Sunday. Advent is celebrated during the four Sundays before Christmas. We have hosted Advent evenings every year since 1998 (17 years!) This year we’ve invited 22 friends, including 9 children and an infant. We had Chinese sundaes (a.k.a. Hawai’ian haystacks), read short scripture passages about our Savior, Jesus Christ, and sang Advent and Christmas carols. Saturday afternoon, Autumn helped me set the tables and install the electric window candles throughout the house. David is feeling well, and is not neutropenic (low white blood cell count, which can lead to infection and therefore requires special precautions). He was a kid magnet, helping the youngest two girls “read” their scripture verses. It felt so warm and comfortable to have a house full of children, with David able to eat, read, and sing with us all.