Mesa Falls Half Marathon

Two years ago

At 11:00 p.m. on August 12, 2015, our identities forever changed. From that moment until the day I die, when I say, “We have six children”, I will wonder: should I mention David? Do I want a total stranger to feel forced to offer condolences? Will sharing my grief cast a pall on a casual conversation? Will I be judged as malingering, wallowing in my grief, not moving on? Will I be the one judging myself harshly?

So, I continue to say, “We have six children”, but constantly debate whether to bring the subject of David’s death into first-time conversations.

Mesa Falls Half Marathon

On Saturday, Matt completed 31 of his 50 planned marathons (His goal is to run one in each state). He had chosen the Mesa Falls Marathon in Ashton, Idaho, since it coincided with our annual Summer Retreat and total eclipse trip. Peter and Matt ran full marathons, R’el, Xiomara, and Annie ran half marathons, Sam and Savannah ran the 5K, and I walked the half (in 3 hours and 44 minutes: my personal best).

Within the first mile of my walk I struck up a conversation with Karen from Indiana, a woman very near my age. We were setting similar paces, so we ended up walking the entire route together. Somewhere near mile 8 of 13.1 the subject of children came up and I said, as I always do, “We have six children.” I didn’t immediately mention David, and debated a bit, but when she asked with sincere interest where each lived, I included David in my tally.

It felt like a turning point. I took a leap and risked the label of malingerer. I realized that part of my story of motherhood is David’s death and my grief. Anyone who thinks about it (including myself) and has a gentle heart will recognize that I never will ‘get over it’. The risk is mostly an internal struggle in me. I build a wall around my heart. I don’t bring it up to preempt anyone else criticizing me, even silently.

Start with Spoleto, end at a Motel 6

Two years ago

June 2nd, 2014, our youngest, Sam, and Savannah Eccles got married in the LDS temple in Bountiful, Utah. Back in Massachusetts, David was recovering from pneumonia in the hospital, but Matt took the train from Chicago to Boston and brought David home. Annie flew to Utah from Beijing; she was on a summer study abroad in Tianjin, China. The wedding was lovely and some of us spent the time between the ceremony and the wedding dinner at Nielsen's Frozen Custard stand.

When we returned home June 3rd, David was in a good mood, though weakened by the pneumonia. He was chagrined when Matt beat him at the board game “Ticket to Ride”. His throat pain and nausea were gone: probably they were caused by the clinical trial drugs.

Spoleto USA 2017

For the second year Jim and I drove down to Charleston, South Carolina, to attend concerts at the Spoleto USA Music Festival and again we stayed with Jim’s sister Mary and her husband John. Mary showed us some of the impressive memoirs she has helped produce. We visited John’s lab and observed barnacle larvae under a microscope. They are crustaceans; I didn’t know that. John is the world’s expert on sea turtle barnacles and always cheerfully answers any questions we have about the natural world in all its complexity.

We immersed ourselves in five days of 17-day festival: Mahler’s 4th Symphony, Tschaikovsky’s opera, Eugene Onegin, string quartets and piano trios. The most unusual show was "While I Have the Floor", a tap dancing memoir by Ayodele Casel. Like her, Jim and I love Fred Astaire and Ginger Rogers; like her, we’ve watched Top Hat and Swing Time dozens of times. Here's a sample of her thought-provoking show.

For our 38th anniversary, we stayed overnight at a Motel 6 in Roanoke Rapids, North Carolina, on our drive back home, reminiscent of the years when staying at a cheap motel was a big step up from camping or sleeping on relatives’ floors.

Some Dates Are Forever Changed

Two Years Ago

August 25, 2014. David is admitted to the MGH leukemia unit, for high-dose cytarabine. He receives 2 grams of the chemo drug every 12 hours for 6 days. At that high a dose, there is a risk of cerebellum damage: loss of fine motor movement, balance, and the ability to walk and control posture. I’m torn between the hope of a cure and the terror of the dangers. My son might never be able to walk again. For four days he is very sick, unable to eat, and just lies in a fetal position on the bed.

September 3, 2014. David insists on leaving the hospital. The nurse practitioner urges him to stay. With his extremely low immunity, she wants him in the hospital with immediate access to IV antibiotics. She is confident he’ll be back, stating that cleanliness won’t abate the greatest threat: bacteria in his own gut.
I beam with pride as I follow David; he strides out of the unit, determined to live his own life and go home.

I write in my blog that day:

            For my part, I thoroughly cleaned the house. It may not matter much, but it is the one thing I have control of. Annie told me of a very difficult time on her Taiwan mission. Everything was hard. So, she stood by her air conditioning thermostat and switched it on and off. On and off. She could control that: on and off. For me it’s cleaning and food safety. I can do that.

Two Years Later

We have observed David’s death anniversary, August 12, visiting his gravesite and then peacefully working on our computers in Jim’s air conditioned office, with an amusing distraction from a skunk trying to take up residence under our kitchen porch.

Now, in early September, I find myself occasionally doubled over in emotional pain when I’m alone. Every time I listen to “It’s Quiet Uptown”, a song of intense grief in the musical Hamilton,  I have to sit down and sob. Once I start to cry just hearing the opening bars of the musical.
It’s not all dreariness. To an observer I’m sure I look normal; I’m high functioning; I laugh; I enjoy things. But my identity as a grieving mother lurks just below the surface, even a year later. It always will.

All through September the anniversary of David’s burial, a year ago on September 12, looms large for me. We had expected the UMass Medical School to keep David’s body for many months, up to two years, and were stunned and unprepared when we received a phone call on August 31, saying that they had finished the research and were ready to return his body. Arranging a burial date and choosing a coffin was very hard.


This year, on Monday, September 12, I spend the day alone, puttering around the house, dusting and sweeping, photographing Peter and Xiomara’s car for their eBay sale, practicing the piano for the first time in nearly two months, and writing. As with the death anniversary, the actual day is less painful than the anticipation, but plenty painful nonetheless.

Tender Memories and a Twofer Open House

Two Years Ago: Mid-August 2014

Still reeling from the August 12th news of the failure of David’s stem cell transplant, on which all our hopes had been pinned, we travel to a rental house on the Long Island Sound in Clinton, Connecticut for our annual “Summer Retreat” week with our children. Although David is neutropenic, with practically no immune system, it is safe for him to ride in the car and stay inside at the rental house.

In midweek Jim, David, and I drive back to MGH in Boston for a medical appointment. Sam tags along to visit with his longtime friend, Kyle. He comes in with us briefly to use the MGH internet network: the internet at our rental house is unreliable. Dr. Chen, the transplant doctor, sticks his head in. He’s surprised to see Sam, who lives in Utah, and says that there is a possible treatment, “donor lymphocyte infusion”. Similar to the original stem cell transplant, part of Sam’s blood will be harvested, but to collect white blood cells (lymphocytes) this time, not stem cells. Three units are harvested and frozen. After the proposed cytarabine chemo, when David’s own white cell count (including the leukemic ones) is at its lowest point, Sam’s lymphocytes will be infused into David, with the hope that they will identify the leukemic cells as foreign and kill them.

2016
My laptop’s screensaver is a slide show: when the computer is idle for one minute, the display shows all my photos, in random order. I enjoy watching them pass before my eyes. In fact, it’s tempting to stop working right now, long enough to start up the show.

One of my favorite photos is of David sitting on the floor at our Connecticut rental house. Andrew is in front of him and David is playing the doting uncle, though a little skeptical of Andrew’s sincerity. David is so present, so in the moment with his one-year-old nephew.
And David looks good. His beard is full, his frame no longer skeletal, his wry smile, well, wry. He’s gained 30 pounds from his low, though he’s still light at 6’1” and 170 lbs. Jim’s in the background, working on his laptop.

I’ve avoided working on this blog post for the past three weeks. August 2014 was an incredibly painful time after five months of intense stress. Dr. Fathi put David’s situation in dire terms. “If you were an older man, we’d be done now,” he says after David’s stem cell transplant failed. “But since you’re young, we can try some things”: toxic, maximum-strength, conventional chemotherapy and possibly clinical trials, if his heart damage doesn’t disqualify him.

And now, two years later, the painful realization that August 12, which was burned into my memory then, as an important date in the ongoing narrative, will now also be the yearly observance of the end of his mortal story.

I had anticipated with a mixture of joy and dread our 'Summer Retreat' this year. It would fall so soon after his first death anniversary, and awaken bittersweet memories of his last reunion. Then he had a minimal immune system and was quarantined. But he was alive and there was hope.

At the end of our Summer Retreat 2016 we hold a double open house. Sam and Savannah (Savam) were married last year, June 2, in the Bountiful Temple in Utah, when David was sick, unable to travel, and not expected to survive. I worried that David would die on their wedding day. Of course we didn’t plan an open house at our house that August. Instead of an open house, we held visiting hours at our home on August 16, just before David’s funeral at our church. There was no viewing; his body was at the U-Mass Medical School about to become a subject in a research project.

Annie and Shawn (Annli Shawston) were married June 10 of this year. With our leukemic son no longer alive,  we plan a summer party for both couples, a twofer.

It's a wonderful evening. For the first time, the ultra-thrifty (cheap, penny-pinching?) Johnstons hire a caterer. Xiomara arranges summery bouquets; R’el takes pictures. The weather invites us to spill out onto the deck to enjoy the perfect New England evening. The caterers turn the ‘fruit and cheese platter’ into a multi-level fruit and cheese creation, complete with cascading Concord grapes. A bright spot in a month of tender memories, a chance to share the joy of our newly married children with old friends.

Wedding Plans

Our daughter Annie is getting married tomorrow in the Provo City Center Temple in Utah.

            In December 2010, a fire destroyed all but the outer walls of the historic Provo Tabernacle.




The temple was constructed inside those walls and dedicated on March 20, 2016. Annie and Shawn will be married there less than three months later.                            

Jim’s cousin, Mark, and his wife, Lynne, are generously hosting us and helping tremendously with the preparations and reception, which will be at the Springville Art Museum. Cyrus Dallin, who sculpted the Angel Moroni on the main steeple of the Salt Lake City Temple as well as Appeal to the Great Spirit in front of the Boston Museum of Fine Art, was born and raised in Springville, Utah, south of Salt Lake City. Dallin spent his adult life in Arlington, MA, where he had a sculpture studio. We live about 4 miles away, both from his studio and the replica Angel Moroni statue on the Boston Temple.

Two years ago

The first week in June, 2014, our son Sam, a 10-out-of-10 HLA (Human Leukocyte Antigen) match and therefore David’s stem cell donor, takes a few days off work in Utah and spends them at Mass. General as they harvest stem cells. The procedure is much like a platelet donation: Sam sits quietly while a needle in a vein in his arm removes his whole blood. A machine separates out the stem cells (which can mature into any type of blood cell), and then Sam’s blood, sans stem cells, is returned into a vein in his other arm. They freeze the cells, to preserve them before the transplant. After the procedure, we meet for lunch at the food court at Mass. General.

The results of an echocardiogram explain why David walks slowly and bent over: he has the heart of an 80-year-old cardiology patient: the chemo drug, daunirubicin, damaged his heart badly. In addition, he could have died from the C-diff (clostridium difficile) infection he contracted in the hospital. As it was, he had emergency surgery to remove his large intestine. Clearly hospitals are dangerous places for him.

So, when his transplant doctor, Dr. Yi-Bin Chen, asks David if he’d like to go home the day after the transplant, of course David lights up. After my initial elation, I’m more subdued: coming right home feel like the booby prize. They won’t administer radiation or more chemo to eradicate most of the leukemic cells before the transplant, as is the standard procedure. That treatment might just kill him. And since he won’t be badly weakened by any additional chemo and radiation, he can immediately go home, a much safer place than the hospital has been for him. There are no easy decisions.

CPI-0610

                      Well, not a memorable name, that, but hopefully a memorable and successful clinical trial. The study protocol just changed and the dosage increased. Funny thing: the drug is so new the manufacturers haven’t started making higher dose capsules (25 mg is the higest), so David will be taking 12 capsules of unusual size every morning.

            A not-so-funny thing: here’s the warning in the description: “In case of contact with the powder: wash skin immediately with soap and copious amounts of water for at least 15 minutes. If in eyes, rinse with copious amounts of water for at least 15 minutes.”

Here’s the study description of the drug:

CPI-0610 is a small molecule inhibitor of a group of proteins called BET proteins. By blocking BET proteins from binding to certain cancer-causing genes, CPI-0610 may result in these genes being deactivated (switched off). CPI-0610 has shown anti-tumor activity in previous laboratory studies.

(By the way, technically, individual leukemic blood cells are ‘tumors’. The name isn’t exclusive to solid masses.)

            The cycles are 21 days long. He takes the capsules for two weeks, then has a week off (of pill taking; he’ll still visit clinic twice a week). In this first cycle, he’ll have his blood drawn on Day 15 through 19. (Actually, he gets Sunday off.)

Today, Day One, we’ve spent the whole day at the clinic, from 7:30 a.m. to 5 p.m. There have been blood draws, after the first daily dose, at ½, 1, 1 ½, 2, 3, 4, 6, and 8 hours and EKGs (electrocardiogram, which measures electrical activity of the heart) at 1, 2, 4, and 6 hours. The portable EKG machine comes right to the room, so we’ve stayed in room 138 all day. Actually, midday I took the T to Harvard station and walked to the Cambridge Public Library to pick up a score of the Brahms’ German Requiem. We’re attending a concert on April 11^th and I want to learn the music better. I then walked down Broadway from the library to Kendall (the MIT stop). I was going to walk across the Longfellow Bridge, but it started to rain, so I bailed and took the T across the Charles River.

Tomorrow, Day Two, we’ll come in the morning for a blood draw at the 24 hour mark (plus or minus 3 hours, a comfortable window).

            From MGH we’ll drive to Logan airport and pick up Annie at noon. We’ll spend the day with her. Saturday Jim and I fly to Chicago and Annie and David drive to New York City to visit R’el, Peter, Xiomara, and Andrew. David gets a reprieve and doesn’t have to come back to clinic until Tuesday.

The great paint project

When I was a graduated senior from Westfield, NJ High School, I painted my parent's 3 story house. It had grey shingles. (I always spell grey with an e.) This summer Annie, entering sophomore at U of Wisconsin-Madison, has contracted to paint our 3 story. The 3rd floor dormers are vinyl-sided, so she won't need to rent a longer ladder like I did the day I painted the exterior 3rd floor.