Now We Know What C-Diff Is

It’s May 6 and it’s been six days since my last entry. I arrived back at Walter Reed last night. Here is a post Jim has provided.

On May 5, David had a new development. His large intestine suddenly became much more enlarged and infected. The team decided it was best to remove it. The surgery began about 3:40 p.m. and took about three hours. It seems the appendectomy in early April was just a rehearsal! The likely cause of the enlargement is a clostridium difficile  (c-diff) infection. The team concluded a few days ago that David had a c-diff infection and they were monitoring it closely. We understood the danger better after reading  http://en.wikipedia.org/wiki/Clostridium_difficile. This species is commonly present in people, but can spiral out of control in a situation like David’s with low immunity and with competing species wiped out by antibiotics. The surgery went well. The hope is that David’s general condition will improve with the infected large intestine gone.

On May 2 we got the great news that the second-round chemo has worked much better than the first round at reducing the count of leukemia cells. After the first round, blasts over 70% were still observed (under 5% is the ideal). In the biopsy 14 days from the start of round two, blasts of 5-30% were observed. The range is broad because there are hardly any marrow cells left (the goal is none) and determining with confidence the proportion that are blasts is therefore difficult. The next biopsy will be later this week.

From April 14 to May 2, neither Mary nor I could visit David. We did Patriots' Day in Lexington and a trip to Utah for Carla's wedding. We are especially grateful to the many extended family, ward members, and friends who visited during this time.

I (Jim) arrived at Walter Reed the morning of May 3. My mom, Charlotte, arrived in the afternoon, and David’s brother Matt arrived May 4 in the early morning. David was sleepy and subdued, but still in good humor. Charlotte commented that David was good at letting people know what he needed. David said, “Well, yes, I’m the one who is the leukemia patient. I have the trump card.”

The discussion with Dr. Clifton Mo on Sunday morning May 4 was truly helpful and comprehensive. We now understand that though the assigned attending physicians, fellows, residents, and nurses rotate with dizzying frequency, Dr. Mo is always involved in David’s case in the background and is the decision maker. Dr. Mo is a leukemia hematology/oncology specialist. He graduated from West Point and Yale University School of Medicine (in 2004). And, nine people in my LinkedIn network know someone who knows Dr. Mo!

I left Walter Reed for home Sunday night May 4. Charlotte left May 5. Very fortunately, Matt was with David all day May 5, including after the large intestine surgery. We had a long phone call with our children last night.

It helps us to stay oriented to the big picture. The desired sequence was and still is:

1. Chemo kills nearly all David’s blood and marrow cells, good and bad.
2. David’s good marrow and blood cells start to regrow, with few bad cells. Achieving (1) and (2) is called “remission.” It’s not a cure, it’s a big reduction in leukemia.
3. The state of remission continues for several weeks.
4. A bone marrow transplant from a matched donor is done. David’s brother Sam is a perfect match. We learned from Dr. Mo that he’s already started arrangements for David to go to Boston’s Dana-Farber Cancer Institute for the bone marrow transplant, once he’s in remission.
5. Sam’s stem cells establish themselves in David’s body and give David a new immune system. It takes weeks for the new immune system to get up and running, which is why it is so important to be in remission before the transplant and for several weeks into the transplant.
6. This new immune system finishes the job of wiping out the leukemia.
7.  Five years without recurrence is considered a complete cure. After this, the lifetime risk of a recurrence is only slightly higher than for the population as  whole.

Along the way, there are three main risks:

1. Chemo complications. David has had lots of them: fever, appendicitis, diarrhea, esophagus pain, abdominal pain, slurred speech (this started May 2 and continues), extreme fatigue and sleepiness, loss of appetite (May 3), weight loss, loss of hair, and infection, especially the May 5 crisis with the large intestine.
2. Failure to achieve remission. “Refractory” leukemia just does not respond to chemo. The next line of defense is novel drugs that target cancer cells selectively.
3. Transplant complications. Graft vs. host disease could arise from the transplant itself attacking David’s healthy cells. During early weeks of the transplant, infection also continues to be a risk.