Human Leukocyte Antigen

            Due to the aggressive nature of AML (acute myeloid leukemia) with FLT-3 mutation, remission of the cancer through chemotherapy will be followed by a bone marrow transplant. (See the April 16 post for details of a bone marrow transplant.)

            All five of David’s siblings have given cheek swabs which are being analyzed for HLA (human leukocyte antigen) compatibility. To quote David’s email of 29 April:

            Results are in and Sam is a perfect match as a bone marrow donor. Results for other siblings are still pending, except for Reutron (R’el) who definitely is not a match. R'el, do you want me to help you start a vicious rumor that you were adopted?

            David had his fourth bone marrow biopsy on Tuesday, 29 April. If the leukemia is not in remission, he will have another round of chemo. If remission is achieved, a bone marrow transplant may happen in about 6 weeks.

            Jim will visit David this weekend. He’ll ride Megabus through Friday night, and arrive at Wrenmimic Saturday morning and make the return trip Sunday night.

            On a happy note, our niece, Carla, had a lovely wedding in the Salt Lake Temple. Jeff and Nelly, the proud parents, were, as always, wonderful hosts to us for our week-long vacation. Besides the wedding festivities, we spent a day in Provo with Sam, including viewing the Sacred Gifts exhibition of Danish and German religious paintings at the Brigham Young University Museum of Art. Tuesday morning we lazed away the morning, completing a jigsaw puzzle, which had 2 missing pieces, and generally just relaxing.

Day Nine of the Second Round of Chemo

            The second round of chemo ended Thursday, 24 April. I just talked to David on the phone and he sounds good.

            News item: David has had substantial esophageal pain for several weeks that makes swallowing and eating difficult. Eating being a major component of his treatment, this has been a constant problem. The doctors decided to sedate David and send a tube down his throat. They identified a specific viral infection, and a specific anti-viral medication is available to destroy said virus. So they have added another medication to deliver through the IV port in his chest. They also found another microbe causing infection: score two for the home team. Many of his fever events have been of unknown origin; it’s cheering to find some specific causes.

            David’s eyesight continues to be poor. He uses disposable sunglasses from ophthalmology over his glasses when he cruises the halls. He rarely uses his computer: he sleeps more, eating takes a big chunk of time, and there are frequent medical exams and the taking of vital signs.

            Some of you have asked how to send messages to David. The easiest would be to comment on this blog. I’ll pass along the greetings to him.

            Jim and I are in Utah; our niece was married in the Salt Lake Temple on Thursday. We’re grateful to the Bethesda locals who have visited David this week, especially my brother Steve and David’s bishop. Steve is trying to convert David to the Nationals baseball team. Don’t think so.

Day Five of the Second Round of Chemo

            This second round of chemotherapy is difficult for David in his weakened state. The three days of daunorubicin are past, but he still is receiving cytarabine continuously until April 23^rd.

            A few days ago the doctors discovered the cause of his diminished visual acuity: David has retinal bleeding in both eyes. This can be caused by leukemia. He is unable to read email and has little energy for activities.

Bone marrow biopsy results are in...

(email from David)

…and we have not killed enough leukemia yet. So starting today we will be killing more leukemia. I’m starting a new round of chemo this afternoon. It will last for a week, and involve the same drugs and procedure as the first week of chemo.

            David will receive daunorubicin over 10-15 minutes, once a day for 3 days. At the same time he will receive cytarabine continuously for 7 days.

Bone marrow transplants

            Well, I made it to Massachusetts via Megabus. Today, while I do laundry and fit back into home life, I’m enlisting Jim’s aid for the blog. Here’s a concise email he sent our kids on David’s upcoming treatment.

            The purpose of David’s chemo is to destroy his bone marrow and blood cells, both the good and the cancerous cells. This may take several rounds of chemo and possibly radiation. It has the effect also of deleting his immune system permanently. Once this is accomplished, the purpose of the transplant is to start David fresh with new marrow from another person. For the rest of David’s life, his new marrow will produce blood cells (red, white, and platelet cells) and provide him an immune system. This new immune system will be genetically the donor’s, not David’s. The closer the genetic match, the more likely this is to work. The main risk of transplant is that the host (David) will attack the “graft” or that the graft will attack the host. The main benefit is that the graft will not be cancerous and will even help kill the last of the cancer.
            The essential thing that is being donated is stem cells from the donor. Stem cells can be hemopoietic (they differentiate and grow into various kinds of blood cells and marrow cells) or embryonic (they are capable of growing into any kind of cell at all). All people have stem cells all the time; younger people have more of them. The donated cells can be withdrawn directly from the center of bones (usually the pelvis); this is called aspiration. Or, they can be withdrawn from the blood that circulates throughout your body. The second method is probably what will be used in our case. The donor receives a drug for several days to increase the number of stem cells in the blood. Then the donor is hooked up to a machine for several hours. It’s similar to kidney dialysis that many people do several times a week for years and years. In this case, instead of removing waste from the blood, the machine removes stem cells and then returns the blood to your body. It is necessary for the donor to be in Bethesda, Maryland to make the donation.

Sixteen days at Wrenmimic

David looks very well, eating and walking laps around the ward. A nurse said that 17 laps is a mile. Ah hah, therefore the corridor must be 100 yards in length: as a swimmer who loves the mile distance, I know these things.

            They did his bone marrow biopsy this morning, earlier in the day than expected, so now it should be quiet for the next week or so. The “Day 21” biopsy isn’t definitely on April 18^th, it just won’t be before then.

Not exactly avuncular affection...

            I’ve got Megabus tickets to return to Lexington Monday evening, April 14^th, barring another appendectomy: highly unlikely, since I’m 85% certain that even David was only issued one. Jim and I hope to host our annual Patriots' Day breakfast, with a little help from our friends. In a typical year, we park about 55 cars on our one-acre house lot, and feeding around 200 people. We even serve hot buttered ENGLISH muffins. Of course, as we all know, the colonists considered themselves British; Paul Revere’s warning on April 18, 1775 was, “The Regulars are out!” (For more information, see Paul Revere’s Ride by David Hackett Fischer.)

            With my new-found energy in writing blog posts, I plan to publish at least 3 times a week. I’ll always put any David updates on top, and label those posts “David”, and “leukemia”, so you can ignore my other musings if you like.

Wireless secured

Newflash:

            Thanks to the Army advocate, Julie (who went to BU, but has never seen the Patriots Day reenactment), a liaison between the Department of Defense and Wrenmimic, I have secured a Verizon Wireless Hotspot! This device, the size of a cell phone, transmits a WiFi signal to any computer within range. I am so excited! This means I can send emails during the day, without the hunt-and-peck Blackberry routine, access my web-based contact list, surf the web, and even watch Yo-Yo Ma play the Bach Cello Suite for One in G Major. Up to this moment, I’ve had to be at my brother Steve’s home to send my blog post and long emails, check the weather, and search the internet, all of which cut into my sleep time.

            Oh, yeah, and David’s doing fine. He’s doing laps around the ward, eating regular food, and is finished with one antibiotic: flagyl.

            Tomorrow afternoon will be David’s Day 14 bone marrow biopsy. We won’t have results till Monday or Tuesday. A clarification learned today: the Day 14 biopsy can not confirm remission, it can only show whether  or not we’re headed in the right direction. The Day 21 biopsy can confirm remission. If the AML is not in remission, he will have more chemo immediately, until remission is achieved. At that point he will have consolidation therapy, to maintain remission, in preparation for a bone marrow transplant.