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.

House of mercy, house of grace

David continues about the same. He had a fever overnight, but it dropped out of sight during the day. During rounds the hematology/oncology fellow of Dr. Van E's told me that 20-30% of fevers have no identifiable sources. If a specific source is discovered, through blood cultures, the antibiotic treatment can be customized to fight the infection. General antibiotics and anti-fungals are constantly being administered to shore up David’s compromised immune defenses.

            The surgeon appeared with his entourage around 1 p.m. He said to David, “I met you yesterday, but you probably don’t remember; you were asleep.” Humor appreciated.

            My son, Matt, gave me a pedometer for Christmas. Yesterday I did 16,561 steps, about 6 miles. Besides the daily stairs routine: 4 floors of parking garage and another 3 floors in the hospital, I roamed the hallways of the medical complex and outside around the perimeter of the Wrenmimic, passing near I-495 and Jones Bridge Road (shout out to ‘Keepin’ Up’), past a soccer field and baseball diamond, and along an asphalt walking path with markers that state the maximum grade of each segment. My walk took me past staid white houses with decks and driveways and the USUHS: Uniformed Services University for the Health Sciences, the military med school here in Bethesda.

            Bethesda means ‘house of mercy’ or ‘house of grace’. This place is certainly that for us.

David’s appendicitis

            Spoiler:

            David had appendicitis last night, 7 April, and underwent a laparoscopic appendectomy, which he tolerated well. A few hours later he was back on the oncology ward with an IV for two extra antibiotics, flagyl and cefepime. He was already receiving Bactrim to prevent infection.

            At 9:07 a.m, I spoke with the surgery nurse at WrenMiMiC (Walter Reed, remember?):

            “You’re from Massachusetts, right?”

            “Yes, I am.”

            “His nurse is from there, too. You all have the same area code.”

            When I arrived at his oncology ward room, David was awake and looking good. He now has three tiny scars, each about an inch in length. The camera went through to center one near his navel and the two arms used for removing the inflamed appendix entered a bit lower, one on each side of the abdomen. I arrived just as the rounds doctors were leaving his room, so I got to meet the oncologist who will be following him for the next two week rotation:

            “Any news?”

            “He doesn’t have an appendix anymore.”

            Matt noted that David had had a “lappy appy”. And since he was tired afterwards, he took a lappy appy nappy.

            My sister-in-law cancelled my Amtrak tickets. I had had a good night's sleep and feel calm and rested.

            At 7:30 p.m. Ensign Frank, who isn’t assigned to David this week, stopped by. David was napping, but she whispered from the door, “How’s he doing?” She was dressed in civilian clothes, with a big black backpack. She’s a sweetheart.

            Our extended family will have a time of personal prayer and fasting starting after dinner on Saturday evening, April 12. Fasting in our church (The Church of Jesus Christ of Latter-day Saints, I’m a Mormon) involves not eating or drinking for 24 hours (that is, skipping 2 meals, but only if you are healthy and able to tolerate it) and praying privately. There’s no expectation on my part that you participate, but I wanted to inform everyone that checks this blog, in case they want to join in.

Neutropenia

                      David continues to eat and walk the floor of the unit. He wears a yellow paper face mask whenever he leaves his room. Since he is now seriously neutropenic (his neutrophil count is very low), his risk of infection is high. Neutrophils comprise about 60% of the total amount of white blood cells in a healthy adult body. They attack bacteria and fungi. The goal of chemotherapy is to kill the out-of-control cancerous white blood cells (blasts), but it’s a blunt instrument and kills healthy blood cells as well. David receives blood and platelet transfusions, but because they are part of his unique immune system, his own body must produce new, healthy neutrophils. He will stay in the hospital until his neutrophil counts recover.

            David will probably have a third bone marrow biopsy on Friday and get the results early next week. The hope is that the leukemia will be at undetectable levels, or in remission. If they are, he’ll have a fourth biopsy a week later, to confirm the remission.

FLT3

            David’s diagnosis is AML: acute myeloid leukemia, sub-type FLT3-ITD. His chromosomes are normal, but there is a gene mutation that is driving the leukemia process. It is one of the least favorable sub-types of AML, which in itself is an aggressive cancer. Basically, his bone marrow is producing too many immature white blood cells, which are crowding out his healthy blood cells, both white and red.

            With the great blessing of the internet, Jim and I were able to listen to the General Conference of our church (The Church of Jesus Christ of Latter-day Saints. We're Mormon.) with David and our daughter, R'el, in his hospital room. Jim and I watched the Sunday morning session at the Washington Temple Visitors Center. President Dieter F. Uchtdorf’s talk about sorrow spoke directly to my grieving heart.

            I’ve set a goal to update my blog 3 times a week. Feel free to pass this link onto anyone who is interested. And thank you all for your prayers, love, and support. I can’t describe how, but I can actually feel them bringing calm and peace into my life.

Wobbly hiss-hum

We get personal attention every time a staff member walks through the door. Everyone at the hospital is super friendly, and solicitous. (Sorry, editors, but I can’t think of a more literary adverb to express my gratitude. Any suggestions?) Invariable, every time anyone enters or exits the room or even passes by, they ask each of us in turn, Are you doing okay? Can I get you anything? Call me if you need anything.

David’s elbow extension is much improved due to his stretching exercises. He had an appointment at the inpatient occupational therapy gym in this building. There’s an outpatient occupational therapy gym in the America building, but he’s not cleared to go out of the building with active chemo. Probably could be cited for carrying a weapon: chemo is ‘powerful medicine’ (The Kid). Couldn’t get nailed on “possession of a concealed weapon”: the chemo bag is clearly labeled and visible on his IV rack. About once a minute, as he walks laps around the ward, I hear the wobbly hiss-hum of the wheels past the door. Tsch-tsch-tsch-tsch-tsch-tsch-tsch. His pace is steady; each time I hear exactly seven cycles, a seven-second swoshy Sixty Minutes stopwatch.

I hear the tech hail him: Doing your laps already?

The beard shows its mettle

David is tolerating the chemo very well. His white blood count is down, as hoped. His beard is getting downright bushy. On Tuesday he wrote:

We have won. Prior to today I was growing the beard betting that nobody was going to call me out on it, and I was correct. But as of today, I am officially forbidden from shaving. ha. Also I'm more than halfway through the first round of chemo and the beard is showing its true mettle

A personal milestone: At 11:55 a.m. the lunch lady comes to the door and says:

Miz Johnston, is your son gonna call down his lunch order?

Yes, he’s planning to do that.

She walks away a few paces, then comes back to the door.

Miz Johnston, when you called down last night, did you want a salad or a fruit cup? I looked at your slip and it said a garden salad and fruit, so they put an orange on the tray and said, ‘Hope she likes that.’

I ordered a fruit cup, but it’s fine. The orange was delicious.

They didn’t know if you wanted a garden salad and fruit or what.

I didn’t ask for a garden salad; I ordered the fruit cup. But the orange was delicious.

I hope it was all right.

I don’t actually care for garden salad; I always get the fruit cup.

Okay.

Individual attention and personalized service! What a country!

David's been in country for a week

Another blessedly quiet day. Since I don’t have internet access at the hospital (Jim’s and David’s laptops detect the hospital “patient” connection, but mine doesn’t), I spent about two hours processing emails at my brother’s house before heading for Wrenmimic a.k.a. Walter Reed.

In the morning David did a few “laps” around the ward, while reading The Music of the Primes and with his IV in tow, and napped in the afternoon. We had lunch and dinner together; the hospital food is quite edible and there are good, healthful choices.

I’ve been able to sleep soundly at night. Having bipolar disorder, good sleep is literally essential to my sanity. I’ve had psychotic manic episodes three times in my life, at ages 26, 39, and 47. I can’t afford to have another. But the medications work well for me (although I don’t like the side effects) and I have an excellent network of supports. Over the past two weeks I occasionally feel sad and cry, but mostly I’m calm and serene. I have confidence that Heavenly Father is in control of the universe and that all that happens in our lives, however painful, will be for our good.

I’m curious to know what sub-type of acute myeloid leukemia David has; the genetic and molecular results should arrive in the next week. David certainly has his young age, Army-level fitness, and good attitude in his favor. I’m touched by the support network we have. Family, church members, the hospital staff, DBSA-Boston friends (Depression Bipolar Support Alliance): all have made us feel loved and supported. I can feel the effect of the many prayers offered on our behalf.

New month, same chemo

David concludes that his excessive sleepiness yesterday was the side-effect of his first ever dose of Benadryl. Whatever the cause, I was relieved to find him yet again in good spirits and awake most of the day. Jim’s brother, also David, stopped by this evening. He has just started a new job and is on a business trip.

In Korea he developed phlebitis (inflammation of the veins) at IV sites in both arms. He cannot extend either arm fully. The occupational therapist evaluated him and prescribed simple stretching exercises to do several times a day as well as a more intensive workout with a therapist three times a week. David’s been told that he can go off the unit for the treatment. That will be a field trip for him: the first movement out of the oncology ward in a week. If permission is withdrawn, they will come to him.