Day Thirteen

David is tolerating the stem cell transplant well. His white blood cell counts are going up, his red blood cells have held steady, and we expect his platelets to start recovering. He gets very tired and doesn’t move around much. He has exclusive use of the second floor bathroom and I wash his dishes separately. He can’t have left-overs more than 24 hours old and even his “cold cuts” have to be heated to 165º! It’s a whole new level of homemaking. I’m very grateful I am a homemaker and can provide the safe and clean environment he needs right now.

Since his return home Tuesday, June 17^th, I have driven him to “Cox 1”, the outpatient stem cell transplant clinic at MGH, twice a week. They draw blood from his port, to check his blood counts and blood level of tacrolimus, an immunosuppressive drug that reduces the activity of David’s immune system. He has been giving himself injections of neupogen, to boost (Sam’s) stem cell production. Somehow those smart little cells knew to migrate and take up residence in David’s vacant bone marrow structures. Now it’s time for those stem cells to multiply and mature into blood cells.  

Michelle Leonatti and her two youngest: Brigham and Charlie, visited this evening. David lived with them, in Wayne, PA, a suburb of Philly, when he volunteered for City Year, before his mission. We really appreciate them coming for one last visit before the big move to Washington State. We sat on our deck, soaking in the perfect New England evening.

Matt and R’el are coming for the 4^th of July. R’el sold Yarito to Matt. She will be car-free; Matt is returning to car ownership.

            I’m reading a book by Rabbi Harold Kushner, How Good Do We Have to Be? It interprets the Adam and Eve story differently than I’ve ever heard it; it’s deep. (I believe most scriptures can be taken at several different levels and that each of us has a limited understanding of the gospel and of any given scripture.) He thinks that the pronouncements of God, after Adam and Eve eat the forbidden fruit, are a description of what it will be like to have a knowledge of good and evil, or in other words, to be a moral and mortal human being. It seems so harsh and severe to “punish” Adam and Eve for transgressing one commandment, especially when they clearly did not have a knowledge of good and evil. God talks about work (sweat of the brow), child-rearing (sorrow in bearing children), and marriage. Each of those areas are distinctly human and, if approached morally, can be sanctifying. Animals aren’t ennobled by work, don’t sacrifice and hope and dream as parents, and aren’t capable of compassion in marriage. Rabbi Kushner imagines leaving Eden as entering a vastly more complex and challenging moral landscape, where God expects more of us and we are aware of both those expectations and our shortcomings.

            We’re in a challenging landscape right now. We appreciate your love, prayers, and concern, both expressed and residing in your hearts. It’s a tremendous blessing to us. We are also grateful to live so close to a world-class hospital and thus be able to have David living at home with us.

David's home again

            Sorry to leave you in suspense, dear reader. David did come home on Tuesday, 17 June. I took Sam to Logan airport for a 7:50 a.m. flight to Salt Lake City and had David home by noon. I am busy disinfecting everything on a regular basis. David’s entrees, and any meats, including “cold” cuts, need to be piping hot: 165°. He is not allowed to eat leftovers more than 24 hours old, and no fresh fruits or vegetables. He is not to contact dirt: no gardening or housecleaning (I know, he’s really cut up about that.). He can go on walks in the open air and have small groups of very healthy visitors.

            I’ve enjoyed a quiet day at home and so far David’s medical experience has continued to be boring. If he can just stay infection free for a month…

Day Zero-Transplant

            I wish they called it ‘day one’. I have to force myself not to think of ‘ground zero’.

            Spoiler: David is tolerating the transplant well so far. The Benadryl has put him to sleep.

            Sam and I drive to MGH early this morning. After dropping Sam off and parking, I go directly to David’s room: Lunder 1034. David’s asleep, so I settle in to read and work on my laptop. The MGH guest internet works with my computer!

            The plan is for David to stay overnight and go home tomorrow around noon. I hope I’m not jinxing the plan by announcing it. Since David’s ‘conditioning’ chemotherapy, starting on Day Minus Six, was less intense than the typical regimen, his white blood cell counts are higher than typical and he can return home a week or three earlier than expected.

            The reason David received the lower intensity conditioning therapy is that his echocardiogram showed heart ‘dysfunction’. With imaging, doctors can measure the ‘ejection fraction’: the percentage of blood that is ejected from the heart chambers at each contraction. 55% or higher is expected for a healthy adult. David’s EF is 32%. David has no symptoms: shortness of breath or chest pains, but he is taking carvedilol and lisinopril.

            Sam spends 4 hours donating his hematopoetic stem cells (the cells that develop into blood cells). Based on David’s weight, he only needs half the amount they collect from Sam, but all of the stem cells are infused into David’s central port, very satisfying to the donor.

            Around 2 p.m., Benadryl, Tylenol, and hydrocortisone are given preemptively to avoid an inflammatory reaction.

            At 3:18 p.m., Sam emails the photo of himself with his bag of stem cells. It’s the color of raspberry sherbet.

             At 3:45 p.m. the transplant begins. Meredith, the transplant nurse practitioner, Ashley and Lisa, David’s oncology nurses today, and Stephanie, an oncology nurse in training, stand near the foot of his hospital bed, suited up in thin, yellow cloth gowns and disposable, blue nitrile gloves. A small plastic bag with the pinkish-red fluid hangs on David’s IV rack and gravity feeds it into his central port, which goes into the superior venal cava, in his chest. A blood pressure machine squeezes his left upper arm every five minutes, and his blood oxygen absorption and pulse are monitored closely.

            By 4:08 p.m. the bag is empty and Meredith starts a saline drip to flush the line.

            Ashley asks, “Can I get you anything?”

            “A cheese pizza.”

            At 4:40 p.m., Dr. Chen arrives. “Did I miss all the excitement?” He reports that Sam’s cells looked great. “You did good, man!”

            Jim, Sam, and David settle down to watch the Nigeria-Iran game while I polish my post.

            Here’s a surprise: although Sam’s stem cells are a 10 out of 10 match, his blood type is O positive; David’s has always been A positive. This isn’t likely to be a problem, since O positive is compatible with A positive, but over the next few weeks, Sam’s blood cells will take over and David will be transformed into an O positive guy.

Day Minus Two

            David, Sam, and Jim watched the World Cup Colombia-Greece game in David’s room on the tenth floor of Lunder. David’s in good spirits and enjoying Sam’s daily visits. Sam has gone to MGH daily for his injections. Today he lost in Axis and Allies to David. A few days ago David beat Brian Sweeney in an intense best of three chess match.

            Tomorrow David’s new home teachers will bring him the sacrament. Starting on “Day Zero”, Monday, David will have to avoid public activities: no church, no movies, no public transit, etc.

            He will be able to receive visitors at home, as long as they are perfectly healthy and over the age of twelve.

            Sam, Jim, and I attended a lovely wedding reception of Mie Inouye’s and Ryan Davis’s at the Old Manse, in Concord, MA. Nathaniel Hawthorne and his new bride, Sophia Peabody, lived there, very much in love. It was a perfect New England Flag Day: sunny, pleasantly temperate, the countryside alive with green.

Day Minus Six

            David is back at MGH, in Lunder room 1034, preparing for his stem cell transplant. (“Bone marrow transplant” and “stem cell transplant” are often used interchangeably, but David will receive Sam’s stem cells into his bloodstream. These stem cells will migrate to David’s bone marrow over the following weeks.)

            In the transplant schedule, the day of transplant is designated “day zero”. Today, “day minus six”, his chemotherapy started around 4:30 p.m. For four consecutive days he will receive Fludarabine by IV approximately one hour a day and Busulfan by IV, two hours a day.

            In about two days he will start taking Tacrolimus, an immunosuppressive drug, to reduce the risk of graft-versus-host disease (GVHD). Sam’s stem cells are the “graft”, David’s body is the “host”. There is a risk that the transplanted stem cells will attack David’s liver, skin, and/or gastro-intestinal tract.

            On Thursday, “day minus four”, Sam will start receiving injections to increase the number of stem cells and encourage them to migrate into his bloodstream. On Monday, June 16^th, ‘day zero”, Sam will be attached to a machine for several hours, which will collect stem cells from his bloodstream and then return the rest of his blood back into a vein. If all goes well, David will receive these stem cells that same day.

            The right end of the couch in room 1034 has a great view of Beacon Hill and the Statehouse. We lost the view of the Charles River we enjoyed in room 1040.

            David’s in good spirits. He finished Season Three of Avatar today. For our annual Family Holiday last Thursday, Jim, David, Sam, and I watched several episodes, plus a Doc Martin.

            According to the “Transplant Schedule” Dr. Chen gave us, day minus six to day plus one are marked, “boring”. We hope so.

Still Quiet

            Things are going well. David will be admitted to Lunder 10, a cancer inpatient floor at MGH on Tuesday, 10 June. He will have more chemo therapy and immune system suppressants. If all goes well, on 16 June David will receive Sam’s stem cells          In preparation for his return home after the transplant, the house will get a thorough ‘spring cleaning’: washing the curtains, vacuuming the couches, washing the floors, and dusting high and low.

            .At the time of transplant David will have no appreciable immune system. It is vital that he avoid infection. For 100 days he must avoid public places: no church, movie theaters, stadiums, public transportation, shops, etc. He will wear a mask while visiting the doctor at the MGH outpatient clinic. He can’t have fresh flowers or houseplants. He can have healthy visitors over the age of 12. He can walk outside (pollens are not infectious) and drive in the car without a mask. Everyday he’ll work on getting stronger: walking a little farther, doing a bit more.

            David, Jim, Sam, and I drove to Manchester, CT last night to hear R'els final choral and orchestral Pops concert. Of course she lit up the stage with her expressive singing. Peter, Xiomara, and Andrew (13 months old) arrived from the Bronx to join us. Andrew sat in rapt attention during Richard Wagner’s The Ride of the Valkyries. One of R’els choir numbers was an English language version of Luigi Denza’s “Finiculì, Funiculà”. I drove David home immediately after the concert (Manchester, CT is about 90 miles from Lexington), but I heard it reported that Jim severely embarrassed at least one offspring with a rendition of “One Day I Took With Me Upon the Subway My Tall Silk Hat” at the West Hartford Ben and Jerry’s during R’els ‘perfomance treat’, a time-honored tradition of sharing a edible treat after a concert.

            Today David went to the Arlington Ward sacrament meeting again. We had supper together with Kyle Duke. Later Charles, Leif, and Mie Inouye, and Mie’s intended, Ryan Davis, joined us for fun reminiscences of high school days. We ended the evening with a call from our son Matt.

More Quiet Days at Home

            I apologize. I see that I never reported a key fact: David is still in remission.

            We’ve had some quiet days at home since David returned. On Saturday I did some major housekeeping and I feel like I’m taking back my house after 10 long weeks. Sunday we went to the Arlington Ward sacrament meeting, and then Jim drove David home. We had supper together, and Jim and I sang some hymns in the family room, a throwback to our newlywed days in Chicago.

            David’s comprehensive dental exam on Tuesday found no hidden abscesses or infections; which would be very dangerous when David’s immune system is knocked out.

            I’ m enjoying being home and doing homey things, though it’s a struggle to ward off the feelings of impending doom and focus on the beauty of the day. It’s been a beautiful week. Warmth has finally come to New England, though the cool Spring means the light purple rhododendron are still in bloom on every block. Springtime in New England isn’t the showy riot of color and bloom of Maryland; but bursts of color punctuating the welcome green.

            Yesterday we met with Dr. Yi-Bin Chen, David’s transplant doctor. He confirmed that David will enter the hospital early next week, for more chemotherapy and then immune system suppressant drugs in preparation for the bone marrow transplant. [See my post of April 15^th, “Bone Marrow Transplants” for details. Sam will donate his stem cells via IV, and not by aspiration.] Sam arrived late Tuesday night and spent Wednesday morning at MGH getting a thorough workup to confirm he is healthy and infection-free. We met at lunchtime and had hot sandwiches at the Riverside Café in the Yawkey Building at MGH.

            David fatigues easily, but is in good spirits. It was heartening to see him and Sam chat about movies while we waited at various points during the office visits. I watched David’s echocardiogram and marveled at the technology that allows even a layperson like myself to see and recognize functioning heart valves and arteries, and marveled at the intricacies of the human body.