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.
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Your open house was really lovely.
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