Memorial Day 2019

For the fourth year in a row, Jim and I are visiting his sister, Mary, and her husband, John, in Charleston, SC while attending Spoleto events. It’s a two-week-long arts festival: classical music and jazz, dance and drama.

I remember the first year we came. We arrived Friday night. On Monday we attended a concert in downtown Charleston. There were sporadic showers and as we dodged puddles and orange traffic barrels marking broken pavement, I saw an American flag and suddenly realized it was Memorial Day. I hadn’t thought to decorate David’s grave: I felt terrible. I emailed a good friend, Ellen. She not only placed a flag at his grave, but took a sweet picture.

I don’t remember what happened the next year, but I know I didn’t decorate his grave. In 2018, after my request, Ellen helped us out again:

This year, I put it in my calendar. The evening before we left, Jim and I went to David’s grave and placed two flags. We discovered the cemetery staff had placed flags on all the graves, so he had three.

 On Monday, another good friend, Amy, sent me a picture: she had placed white flowers and a flag on his grave, alongside ours.

Charleston has a bittersweet connection to David. During the Christmas holiday of 2013, we rented a van and drove with some of our kids to Charleston. David was stationed in Texas and flew to be with us. After our stay, Jim and I drove him to the airport. As he got out, Jim offered to sign the Family Letters book that Jim had written. Then David strode into the terminal. It was the last time we saw him healthy. Less than three months later we met him at Dulles Airport and drove him to Walter Reed National Military Medical Center (which I named WReNMiMiC.). Memorial Day weekend of 2014, David and I were flown to Hanscom Airport, then transported to Massachusetts General Hospital (MGH). We had such high hopes that day. He was ‘in remission’ and Sam was a 10-of-10-match stem-cell donor. David would have a stem cell transplant in mid-June.

Memorial Day 2015 (from my blog):

David returned to Lunder Monday morning, Memorial Day. He hadn’t eaten anything for several days, was dehydrated and terribly nauseated. He had no appetite and severe pain in his throat. Dana, our favorite Lunder 10 nurse, who works weekends and holidays, started IV saline and some Ativan, which is very effective for nausea, (as well as anxiety and insomnia). The Ativan got rid of the nausea and knocked him out minutes after it started flowing into his vein.

Ours was an unscheduled visit, and the infusion room was full. Dana put us in the patient and visitor lounge and taped a sign on the door, ‘Lounge Closed’. Last May, late in our time at Walter Reed, there was a night when David couldn’t sleep. We walked down the hall to a lounge and he lay down on the couch. “This feels so good!” he said. The sweet nurse on duty let us stay, even though it was against procedure to have a patient sleep in the lounge. Such a simple pleasure, to get out of bed and nap on a couch.

In the Lunder lounge, David was quite comfortable. Dana said, as she worked, “I’m trying to keep him out of the emergency department.” She succeeded. He moved into room 1092 Monday afternoon.

David hadn’t taken his clinical trial drugs Monday morning. On Tuesday I arrived at Lunder 10 around 9 a.m., to deliver the refrigerated BYL719 study drug. That was unnecessary: Dr. Fathi stopped the MEK 162/BYL 719 clinical trial. The drugs were not lowering the white blood cell count and were probably causing the throat pain, nausea, and lack of appetite. It’s disappointing.

            Tuesday they took a chest x-ray to investigate his hoarse cough and discovered pneumonia. Later in the day they did a CT scan, which showed a large consolidation (not a good thing) in the upper right lung and little dots scattered throughout the lungs. Since a lung infection could be TB (tuberculosis), we all have to wear heavy-duty masks, which are hot and bothersome. But I certainly don’t want to either contract or pass along TB (or any infectious disease). It’s quite unlikely he has TB, but they must take precautions.

            At 5:30 p.m. this evening David was sleeping soundly. He was in good spirits yesterday, and sounded chipper on the phone this morning, but now he’s conked out. Yesterday afternoon he spiked a fever of 104°. When Jim arrived to visit, the nurses were busy applying ice packs in an effort to lower his temperature.

            R’el, Peter, Xiomara, and Andrew drove up from NYC Friday night for the holiday weekend. David enjoyed playing with Andrew and made some videos on his iPod. Happily, Andrew has decided to enjoy his Uncle David’s company, even when his mother isn’t in the room.

            Saturday night we watched a Captain America movie,Winter Soldier. R’el synchronized the start of the movie with Matt in Chicago. At our house R’el, Peter, and David sat at their laptops (as did Matt in Chicago) and messaged commentary as the movie progressed. I was content to just watch the movie. David did comment afterwards that he missed a bit of the action while typing and reading comments.

            The goal for now is to get David strong enough to come back home, one day at a time.

And now, in 2019, we’ve spent four Memorial Days without him.

Happy Birthday, Victoria!

Two years ago

Monday, August 3, 2015, David’s white blood cell count had risen from 1 to 8.29, concerning but still low. But the Thursday blood draw showed the counts had risen to 130. For an older person, that would be lethal. With a 27-year-old who had been Army-fit just 17 months ago, it was impossible to know how long he had, but I pressed Dr. Fathi: he told me he didn’t expect David to live more than a few days. People sometimes complain that doctors predict outcomes and are wrong; I was very grateful for his best guess.
Sam arrived Saturday from California; he hadn’t seen David since April. Matt had accepted a job offer at the admissions department of Clark University in Worcester, less than an hour away from us. So, he put most of his belongings in storage in Chicago and drove home, arriving Saturday afternoon.
Friday night Jim slept on the floor next to David’s bed; Saturday Sam slept on the couch nearby. David alternated between sleeping and lying quietly awake, reading The Economist magazine in snatches and sipping warmed honey water. For weeks he’d had throat pain; now he complained of hip pain, probably a result of lying still too long. Martin, the weekend hospice nurse, didn’t expect it to go away.
Annie arrived home from Beijing Monday night, August 9th.


David’s last days were sacred and intensely sad. I am so grateful we were able to provide a peaceful place for him to die.

August 12, 2017

Victoria was born 40 minutes after David died.  Approaching the second anniversary of David’s death, and Victoria’s second birthday, I was ready to make August 12th a celebration of Victoria’s life and October 4th (David’s birthday in 1987) a celebration of David’s. We plan to hold an annual blood drive for MGH in his memory on the second Saturday in October. (Let me know if you're available.)

Since Victoria’s birthday fell on a Saturday this year, we spent the day at the Bronx Zoo. We picked Matt up in Worcester and found street parking just outside the zoo. (It was because Xiomara was in the car: she's the parking space queen.) At the children’s zoo, Victoria proved fearless as she enthusiastically held out her hand to let the sheep and donkeys fed directly from her hand. A mother chided her six-year-old daughter, "See, that little girl isn’t afraid." I felt sorry for the older girl.

At a picnic table we ate Xiomara’s chicken salad, finishing off with some (very tasty and gourmet) vanilla cupcakes I made. Then we watched the sea lion feeding and show. By closing time I was tuckered out: I had only gotten 5 hours of sleep (anticipation insomnia).

The early evening was harder. We visited my younger brother, Mike, in a hospital in Paterson, New Jersey. A kidney infection had caused extremely low blood pressure (79 over 54).

Mike is severely intellectually disabled. As a child he learned to walk and talk, recite the alphabet, and feed and dress himself. But at age 13, his epilepsy got out of control and he went into a state of constant seizure. When he stabilized, he was never the same. For many years now, he has been wheelchair-bound and unable to speak or do most ADLs (activities of daily living).

It was hard to see Mike in a hospital bed with various tubes entering his body. I wonder what he thought, how he was handling the unfamiliar environment and strangers doing strange and sometimes painful things to him.

The visit brought back memories from May of 2014: while I was in Pennsylvania to walk a half-marathon and then visited my dad in New Jersey, David got a C-diff infection and almost died. The surgeons removed his bowels. When I returned to him in Bethesda, I was confronted with a horrible sight: my son unconscious in a SICU bed, his face smooth, beardless, and ghostly white, his body seemingly lifeless. Just two days before, I had visited Mike, who was in a hospital in New Jersey that same week. The impact of seeing first my little brother and then my son unconscious, with tubes in their bodies, and very sick, pained my heart. Would either of them recover? Would David ever be the same?
Except for his death, that was the lowest time in our 17-month experience with David’s leukemia.

When we returned home Saturday night, there was a bouquet of flowers on the porch from some thoughtful friends and a sympathy card in the mail. The next day another dear friend gave me a hug. I don’t need everyone to remember our loss: life moves on. But it feels good when one or two do.

I was glad the hospital visit was after Victoria’s birthday party. Sunday morning I woke up and cried, but I have experienced healing: I didn’t fall into a gaping chasm.

Memorial Day 2015 and 2017

Two Years Ago

On Memorial Day, May 25, David returned to Lunder 10. He hadn’t eaten anything for several days and was dehydrated and terribly nauseated. He had no appetite and severe pain in his throat. Dana, our favorite Lunder nurse, who works weekends and holidays, started IV saline and some Ativan, which is very effective for nausea as well as anxiety and insomnia. (I took it briefly during and after my psychiatric hospitalization in 1995). The Ativan knocked him out minutes after it started flowing into his vein.

The infusion room was full, so Dana had set us up in the patient and visitor lounge and taped a "Lounge Closed" sign on the door. It reminded me of May 2014, late in our time at Walter Reed. One night, after David had been there about two months, he couldn’t sleep. We walked down the hall to a lounge and he lay down on the couch. “This feels so good!” he said. The sweet nurse on duty let us stay, even though it was against procedure to have a leukemia patient with a minimal immune system sleep in the lounge. Such a simple pleasure, to get out of bed and nap on a green vinyl couch.

As Dana worked, she said, “I’m trying to keep him out of the emergency department.” She succeeded. Later that day he moved into room 1092.

The next morning, Dr. Fathi discontinued the MEK 162/BYL 719 clinical trial. The drugs weren't lowering the white blood cell count and were probably causing the throat pain, nausea, and lack of appetite. Another failed attempt.

Also on Tuesday, they took a chest x-ray to investigate his hoarse cough and discovered pneumonia. Later, a CT scan showed a large consolidation (not a good thing) in the upper right lung and little dots scattered throughout the lungs.

The previous Friday, R’el, Peter, Xiomara, and Andrew had driven up from NYC for the holiday weekend. Two-year-old Andrew had decided to enjoy his Uncle David’s company, even when his mother wasn’t in the room.

On Saturday, we watched a Captain America movie,Winter Soldier. R’el synchronized the start of the movie with Matt in Chicago and at our house R’el, Peter, and David sat at their laptops (as did Matt in Chicago) and messaged commentary as the movie progressed. David commented afterwards that he missed a bit of the action while typing and reading comments.

Memorial Day 2017

For the second year in a row, Jim and I drove to Charleston, South Carolina, to stay with Jim’s sister Mary and family and attend performances at Spoleto USA. Today we saw Geoff Nuttall and friends in a chamber music concert, including the Mendelssohn Piano Trio in C minor, opus 66.

I wrote about transformative music back in November. It’s an experience I have over and over again. The piano trio players performed with energy and passion. I’m grateful to share the earth with such talented, dedicated human beings.

Also, for the second year in a row, we didn’t visit David’s grave for Memorial Day: we drove to Charleston instead. I was at the cemetery a few weeks ago and straightened the flags flanking his headstone. The grass over his grave is lush and green; my lawn should look so good.

Happy Memorial Day

Right after David was buried, I thought I’d visit the cemetery once a week. It felt disloyal not to. But now I don’t feel the need to go so often, though with the warmer weather, I’ll probably make the 2 ¼ mile walk on the bike path more often.

Five Springs 2014

May 24, 2016

Yes, many days are easier than six months ago or even three months ago. Matt runs his 27th marathon in New Paltz, NY. Peter also runs a marathon; R’el and Xiomara run half marathons; I walk a half. Jim lets the little ones sleep in (race starts at 6:00 a.m.), then brings them to the fairground.
The race organizers are conservative in their course marking: the course is well over the required 26.219 miles. My Runkeeper GPS registers 14.23 miles. Is there such a thing as an ultra-half marathon?
I sleep well that night, but feel low the next morning. It’s another first: a family gathering for a marathon race with no possibility of David joining in.

Five Springs 2014

2014 is the year of five springs. Leaving Lexington with its bare trees of March, we drive into the warm spring of Maryland. One evening I walk for miles among the pink clouds of cherry blossoms, which ring the Washington Monument, line the Tidal Basin, and surround the Jefferson Monument.
In mid-April I return to Lexington to prepare for Patriots Day, throwing me back into early spring, with the trees just beginning to bud. Then we fly to Utah, somewhere in between Maryland and Massachusetts in the springtime calendar.
My early May half marathon along the Susquehanna River in Danville, PA has the trees in full leaf and lilacs blooming. May 5th I’m back in Bethesda with azaleas in pink and red and white. I enjoy moving among these springtimes.
Five springs, and David experiences none of them, stuck in a hospital room for nine and a half weeks, experiencing appendicitis and an appendectomy, two rounds of harsh chemo, retinal bleeding, esophageal pain, slurred speech, an infected colon and colostomy, and 30 pounds of weight loss. He transforms from a healthy Army medic to a thin leukemia patient.

On Monday, May 19, 2014, I drive our black Hyundai to Steve’s and Maria’s house. From March 26 to May 19 I commute daily to Walter Reed in that car, but that evening I do laundry, pack all my clothes, and walk back to Walter Reed, determined not to leave the hospital until David and I are medevaced to Massachusetts. I am told that the plane might leave without me and that if I am allowed on board I can only take a purse with me. I go into survival mode, afraid they will leave without me. I hardly leave the fifth floor, sleeping on the pull-out couch in David’s room.

One night we walk down the corridor with his wheeled IV stand to a family lounge. He sits on the green vinyl couch and I return to his room for his pillow. The night nurse finds us and looks nervous: it's obviously against regulations to let a leukemia patient with low immunity sleep in the lounge. She kindly lets him sleep and I promise to stay awake and keep watch over him. What a simple pleasure, to nap on a green vinyl couch: the first sleep in nine weeks out of his hospital bed.

Hospital Life, Two Years Ago

May 16, 2016
Outside my home office window the maple trees and flowering quinces are leafing out and the sun is shining. I plan to walk to my piano lesson three miles away. Today is going to be a good day.

One day last week, I pulled a disinfecting wipe out of the plastic cylindrical package. The scent yanks me into the past, caring for David, wiping down surfaces, bleaching dishes.

May 7-20, 2014

With all he has been through in the past 8 weeks, David retains his deep compassion. An inexperienced student removes his nose tube a few days after surgery. I quickly look away as I see David’s eyes open wider than I thought anatomically possible. As soon as it’s over, David asks the student: “Was that your first time?” The student rather sheepishly admits it is. “It didn’t hurt at all. It was weird, but it didn’t hurt.”

Drinking a glass of water as Dr. Mo talks with him, David asks, “Do you know how good a glass of water tastes?” Such gratitude and serenity as he savors each sip.

I walk the deserted indoor courtyard of Walter Reed’s outpatient building, cell phone pressed to my ear, crying my fears to Jim. Jim responses, “It’s sad; it doesn’t have to be scary.” That becomes my mantra.

  Three vials of cerebrospinal fluid are removed via lumbar puncture, to determine whether or not the leukemia has spread to the fluid. I didn't know white blood cells could do that. It's an anxious twenty-four hours, but the next day’s results show no leukemia in the fluid. In addition, the most recent bone marrow biopsy shows remission; the transplant can move ahead. We’ll be going home soon.

For the first time in seven weeks, David goes outside. I wheel him up to the hospital's 7th floor roof garden. Fresh air and sunshine. We stay about 10 minutes, sitting in the late afternoon shade of the building, surrounded by potted plants and trees. David soaks it in.

I am learning to interpret David’s slurred speech. I’ve become his voice: most of the medical staff can’t understand him. In the privacy of his room we hold hands, sometimes to comfort me, sometimes to comfort him. At his request I sleep two nights on the green vinyl couch in his room, awakened by the noisy 6 a.m. visit from the surgery team.

On May 17th a speech therapist visits. The exercises improve his speech a bit. Next day his speech is suddenly perfectly clear and the leg tremors are gone. David didn't practice that much; probably the Flagyl is finally out of his system. Unfortunately his vision is still impaired and reading, one of his favorite activities, is a chore. I stay overnight again. David appreciates it. It's a simple life, for both of us.

Mothers' Day 2016

        Mothers' Day was easier than I expected. I experienced a lot of anticipatory grief in the week leading up to it, but the actual day was pleasant, including a luncheon at church and phone calls from my kids.
       Then yesterday in the shower I listen to WCRB. Cathy Fuller announces "The Moldau" by Smetana. This is one of my very favorites; I played it in the viola section of the New Hampshire Philharmonic back in the early 90s. As the piece begins with gentle flutes and soft pizzicato strings, my happy anticipation immediately turns into grief and hot tears. Music can do that to you.

       The first few weeks of May, two years ago, were some of the bleakest in the leukemia experience. I prefer short blog posts, but there was just too much going on to condense it into a short post. Please share the journey with me.


2 May 2014
Great news: the bone marrow biopsy shows signs of leukemia remission. He has so few bone marrow cells that another, confirming biopsy must be performed in about a week, but we are all hopeful that the process towards a bone marrow transplant can move forward.
3 May 2014
I take a Megabus from Boston down to Secaucus Junction, New Jersey, where my son, Matt, picks me up. He’s going to run a marathon along the Susquehanna River starting in Danville, Pennsylvania, literally the town I was born in (Geisinger Hospital, now a large regional medical center). I plan to walk a half-marathon.
May 3rd is a beautiful spring day and the brisk 13.1 mile walk along the river valley where I was born is a refreshing break from the stress of the past eight weeks. Matt finishes his 26.2 mile run in about 4 hours. I cover half that distance in about the same amount of time. Twice his age, half the distance: I’m proud of my accomplishment.
We drive to Perth Amboy, NJ, where Matt drops me off at my dad’s house. Matt will be in Bethesda with David a few days before me. Jim has taken the Friday night Megabus to visit David, who is in good spirits. Charlotte, Jim's mom, arrives in the afternoon. She comments that David is good at letting people know what he needs. David quips, “Well, yes, I’m the one who is the leukemia patient. I have the trump card.”
A detailed conversation with Dr. Mo clarifies that although attending physicians, fellows, residents, and nurses rotate with dizzying frequency, Dr. Mo is managing David’s case. He is in touch with a bone marrow transplant doctor at Massachusetts General Hospital and is making arrangements for a transfer there as soon as David achieves remission.

May 4, 2014
I go to 10 o’clock Mass with Dad at St. Mary’s Church in Perth Amboy. We have brunch at the Reo Diner in Woodbridge, then drive to Rahway Hospital to visit my brother Michael, who is being treated for a large kidney stone and subsequent infection. Michael is my only younger brother. (I have three older brothers and a younger sister.) He is severely intellectually disabled. As a child he was quite a talker and enjoyed special education classes in public school, but for all of his adult life he’s been unable to talk. He’s asleep when we arrive. I sit with him and my dad, half-watching a Discovery Channel piece on the “United States of Bacon”, in which a loud, obnoxious man goes to different restaurants all over the country, seeking the ultimate bacon delight. The first destination was Chicago, and I assume that place had won first place, but I soon realize the man only deals in superlatives. “You keep using that word. I do not think it means what you think it means.” [Princess Bride]. I love bacon, but this program is over the top in inanity. So I try to ignore the TV and sit next to Mike, gently and impotently rubbing his arm, his crewcut head, his hand. Looking at the PICC line and thinking about my other boy with plastic tubing. My other boy with the bald head, similar to Michael’s crewcut. Mind-numbing. When his lunch arrives, Michael eats voraciously, in contrast to David’s painfully slow hour-long meals with his esophageal pain.

May 5, 2014
I take my dad to a medical consult. He has minor surgery scheduled, but his lab work showed an elevated white blood cell count, so the surgeon insists he see a hematologist. Two months ago I didn’t even know what that was.
As we sit in the waiting room my cell phone rings. It’s Matt. David has a badly infected colon and will have emergency surgery to remove it. I feel torn between my two worlds: my 91-year-old widower-father and my leukemia-patient son. I explain to Matt that I can’t do anything at the moment but will take the next Amtrak train from Metropark, NJ to D.C. when we are done at this appointment.
       Meanwhile, the hematologist concludes that although my dad’s WBC is elevated, his unrelated surgery doesn’t need to be postponed.
When I get Dad home I make a reservation for the 129 Northeast Regional Amtrak train, leaving Metropark at 5:13 p.m. Arriving at the station, the 127 train, scheduled to leave at 4:36 p.m. is sitting on the tracks. I get on, call Amtrak on my cell phone, and change my reservation. Perfect. I didn’t stress myself by making a reservation for the earlier train, but I get on it.
I type in my journal: “David is in major abdominal surgery. His colon is swollen. They will remove his large intestine and hook his small intestine to a bag, which he will wear the rest of his life. Typing this threatens tears. I don’t want to think about it. I don’t want this to be happening. I want WiFi, which isn’t working on this train.”
Matt is with David. The anesthesiologist lets Matt hug David before the surgery.
6:24 p.m. The train passes through low country and across bodies of water. We’re in Maryland, north of Baltimore. The trees are soft and green. I get a little car sick with all the close trees and the swaying of the train. I open a Fresca. I type some more.
“I’m a bit numb. It’s all happening so fast. All of a sudden David’s life has changed again drastically. Removing the colon. Wearing a bag the rest of his life. On top of the chemo-induced sterility, which happened in Korea (and without patient consent, btw), the dangers of chemo, the dangers of killing all his bone marrow before a transplant, the dangers of the transplant, the long recovery. I’ve just got to stumble through this. Lots of people love me and our family and they are praying for us.
Sipping a Fresca. Keep breathing.”

5 May 2014
David's surgery to remove his large intestine lasted about three hours. The cause of the infection is c-diff (clostridium difficile). It’s a common microbe but between David’s low immunity and the competing species in his gut wiped out by antibiotics it has taken over his large intestines.
       Matt remains with David all day May 5, seeing David after the emergency surgery.

6 May 2014
The SICU (Surgical Intensive Care Unit)
I arrive by Amtrak and Metro Red Line around 8:15 p.m. It’s strangely comforting to be far away from home, and on a Red Line. I'm grateful that Matt had prepared me for the change in David. Looking into a brightly lit hospital room I see a pale, other-worldly face with impossibly smooth skin and prominent jaw. Matt had warned me not to come right into the room. In the hallway is a large plastic cabinet full of yellow paper gowns, grey gloves, and stiff blue face masks with thin metal strips to bend against the bridge of the nose.
       Although David stirs and even speaks during the evening, he’s incredulous the next morning when Matt tells him that I had visited.
Next day David is alert, with color in his cheeks. We have a constant stream of medical visitors at the SICU: the surgery team doing rounds, an oncology fellow, the GI team, the infectious disease team, a neurology resident, and nurses and students.

The gowns, gloves, and masks are protection for us and other patients: as David announces, “I’m a bio-hazard.” C-diff is a serious infection; everyone suits up to guard against catching it and spreading it. The foaming hand sanitizer, de rigueur on the 5 West hematology/oncology ward, isn’t effective against C-diff; thorough hand washing is the best defense, to wash away the spores.
David’s respiration rate is high, so he will spend a second night in the SICU, where they monitor him carefully and treat him with extra fluids easily.
Dr. Mo plans to do another bone marrow biopsy Wednesday or Thursday. If the results aren’t good, he will start more therapy immediately.

Weather Delay

            We just got news that the medevac flight is postponed from today until tomorrow, Friday, 23 May, due to weather concerns. Evidently medical flights are much more cautious than commercial.

            Please pray that we will get to Boston tomorrow. No negativity, just positive thoughts.

            David is doing great. Every day his nurses and visitors say he looks better, and it’s true. They took the wound vac out this morning and replaced it with about 5 small, very absorbent wicks and a long dressing over the top. He’s developing an impressive scar!

            The oncology fellow has given David grounds privileges, so we’ll probably take a wheelchair stroll to a little garden between buildings. He hasn’t been outside since the roof garden nearly two weeks ago.

Re-setting expectations

                        Tuesday, 20 May, was full of waiting and uncertainty. We got visits from doctors and social workers, reporting at various times that David’s inpatient to inpatient transfer from Wrenmimic (Walter Reed) to Massachusetts General Hospital (lovingly know as MGH; now you all are in the know) was imminent, in the works, tomorrow (Wednesday), not till Friday, etc.

            David looks better every day, and everyone remarks on it. He sits up in bed with his legs crossed and sounds just like the old David, with no need to speak slowly and think about how to form each word. He walks the halls with the physical therapist; and even did a flight of industrial-strength stairs. He is able to eat more, aided by having the IV TPN (Total Parenteral Nutrition) end at 7:00 a.m., so that he actually needs nutrients during the day.

            He has the official “attachment” orders, so he no longer has any connection with his unit in Fort Hood (which will be in Korea for the next 6 month).

            On Tuesday evening the nurses said he would definitely get his flying orders by 10:00 a.m. Wednesday, 21 May, for travel that same day.

            But today, Wednesday, 21 May, there is little chance of leaving until Thursday, "Friday at the latest". Turns out MGH doesn’t have a bed today, so there’s a piece I hadn’t thought of.

            What was that about re-setting expectations?

19 May 2014

            David had a good day yesterday. I slept on the pull-out bed in his room again. We were awakened at 6:30 a.m. by the 6^th year surgery resident. Better than the 6:00 a.m. wake-up call the 2^nd year resident usually greets us with. A first year resident arrived in the afternoon, with a med student in tow, and competently removed the wound vac sponge and replaced it with a smaller one. The wound looks really good. There are only 4 or 5 holes, each ½ to 1 inch long, and several areas of closed up skin, including one that’s a few inches long. I’m not at all squeamish about looking at the incision. From the first unwrapping of the dressing a few days after surgery, I’ve been fascinated. Of course, there’s no blood involved.

            David sounds like himself again. The speech therapist arrived to check in and decided to do a final assessment to close his case. I thanked her for her help. Her coaching, on Friday, and concrete strategies for speaking clearly, helped David transition into normal speech rapidly. I’m guessing some medication or mix of medications finally wore off and his slurred speech and leg tremors disappeared, quite dramatically, over two days.

            David has no appetite, but is forcing himself to eat so that they can wean him off of the TPN (Total Parenteral Nutrition), which was delivering 2000 calories and 100 grams of protein by IV each night. He has absolutely no appetite and had vomited three nights ago, after no stomach problems for about three days. Monday evening, May 19^th, they decreased the TPN to 1600 calories and 90 grams of protein and decreased the length of time it ran, from 14 hours to 10 hours.

            David’s visual acuity is still poor, a side effect of chemo. Even with his glasses, everything’s a bit blurry. Reading is slow and tedious. He’s lost 30 lbs over this 8 week hospital stay. (Hey, maybe we should market this weight loss method.)

            He developed a cough, but only coughs about three times a day. Two nurses have listened carefully to his lungs, and it seems to be higher up. Of course we’re all monitoring it, and everything else about David, carefully.

            David looks much better than when I saw him in the SICU (surgical intensive care unit) Monday evening, 5 May. Then he was unconscious and ghostly pale, with unworldly perfect and smooth face and tubes sticking out of his body at several sites. Now he has color in his cheeks and facial expression. His face is still gaunt, and the cheekbones prominent. The swelling of his ankles and feet (yes, cankles) has disappeared, thanks to the added protein, which allows the blood vessels to hold in the fluid. His feet look downright skinny.

            We walked around the oncology ward, four short laps, which is an accomplishment. It’s all about resetting expectations.

Eighth Sabbath

            David sounds like himself again. He has conversations without thinking about it and every word is crystal clear. We took a walk around 5 West this afternoon. There was a recumbent exercise bike in the hallway, and David took a spin. He ate blueberry pancakes for breakfast and pita bread and hummus for dinner. Since he’s getting 2000 calories all night through his central port, he has absolutely no appetite, but he’s been ordered to eat. So today he had his first non-pureed food: blueberry pancakes, hummus, pita bread, and a bit of broccoli and green beans. For a few days he wasn’t able to coordinate his jaw and tongue enough to eat, but today that all worked too.

Some Buried Caesar

            It was a quiet day. Peter rode the Megabus to Union Station in D.C. and caught one of the last Red Line subway trains to Medical Center last night while Jim flew to BWI (Baltimore Washington International Airport) and I picked him up.

            We hung out in David’s room all day. The morning was punctuated by doctors’ rounds. We ate in the room and at 3 p.m. had a conference call, with Matt in Chicago and Sam in Provo, Utah, to discuss our current family book group selection, Some Buried Caesar, by Rex Stout. (Nero Wolfe was my mom’s favorite detective.) R’el was sleeping after her Friday night moonlighting gig, and of course Annie is doing her missionary work in Taiwan. It was wonderful to share the call with our four sons. We talked for over two hours.

            David’s bishop here in D.C. and his wife dropped by to say hello. They lived in the Philadelphia area when I was a college student at Bryn Mawr, back in the seventies, so we undoubtedly attended the same stake meetings (a stake is a collection of around 8 to 10 congregations), but never met until David came here.

            After supper we went on a leisurely walk down the 5 West corridors, looked out the window, and even ventured out a bit to the 5 Central nursing station.

            Then Jim, Peter, and I sang a few hymns, including the one Jim often sang the kids at night, “Carry On”. Peter and Jim sang, “Behold, the Mountain of the Lord”. And we ended with the round, “The Priesthood of our Lord”.

Vac Again

            Pretty quiet day on 5 West, though it again started at 6 a.m. with a member of the surgery team coming in. I suppose surgeons do surgery during later rounds hours, but it limits our rest.

            The oncology team plans to use sorafenib for the consolidation drug therapy in preparation for the bone marrow transplant. Sorafenib is approved for other forms of cancer, including kidney cancer, but shows promise in attacking the FLT3 mutation of AML (acute myeloid leukemia) that David has. So, they’ll use it off-label.

            In preparation for the sorafenib therapy, the surgery fellow came in and reinstalled the wound vac, to speed healing. Originally they planned to let the wound heal naturally, with the stitches as guides, but everyone wants to get back to treating the leukemia while it is in remission. Remission does not mean there is no leukemia, it just means they can’t detect any. So the treatment must go forward as soon as possible.

             The wound vac sponge is a one inch thick oval piece of dark grey foam. The surgeon tore it, rather inelegantly, into pieces the size of Goldfish crackers and poked one into each of the one inch gaps between the stitches. Then she attached a long piece of clear adhesive tape and cut holes in the tape just above each bit of sponge. She then laid a long, narrow strip of sponge across the top and another layer of tape. Cutting a hole in the upper end of the sponge strip, she attached the suction cup attached to the tube that goes into the pump.

            The best news of the day is that David met with an excellent speech therapist for his slurred speech. She gave him lists of words and sentences to read aloud, exaggerating the enunciation, opening his mouth wide, and speaking loudly. There was great improvement after just a half an hour of work. David’s speech had been slowly improving, but this was a marked change. For the first time since May 2^nd, he was  able to call in his own food order. Any stranger would be able to understand him now. When I first saw him on May 5^th, I had a hard time deciphering his speech, and I’m his mom.

No More Vac

v  The lab in San Diego found no leukemia in the CSF (cerebrospinal fluid).

o   What words can I use?

§  “Praise God from Whom All Blessings Flow”

§  “How Can I Keep From Singing?”

§  “Now Thank We All Our God”

§  “There is Sunshine in my Soul Today”

v  The wound vac was removed!

o   To review, this motorized pump drains the wound, via a sponge the length of the incision, through tubing, into a reservoir.

o   There is no bandaging needed; the sponge is held in place with clear plastic tape.

o   It promotes healing by keeping the wound very clean and dry.

o   It doesn’t require dressings and the changing of dressings.

o   It did, however, keep the two sides of the incision from touching and therefore they couldn’t fuse together and heal.

v  The surgeon closed the wound with widely placed sutures (stitches) and put wicks in between, to help with drainage.

o   Now he has a dry dressing (which will need to be changed).

o   This is a huge step towards healing.

o   The oncology team is as excited as I am.

o   No one can be more excited than David.

Four Milkshakes

I have a hotspot, so life at the hospital has gotten much easier.

            I slept overnight in David's room, Monday night and last night. He appreciated the company. He and I both had excellent sleeps: bed at 10 p.m., brief wake-ups at 11:30 p.m. and 2:30 p.m. for nursing, and then the bright, loud voice of the surgery resident at 6 a.m. I was going to roll over and sleep through it, till I realized who she was, so I woke up enough to listen.

                                    Good news today:

Ø  The surgeon plans to remove the sponge and wound vacuum from the abdominal incision tomorrow morning, 15 May, in the PACU (post-op acute care). The PACU is precautionary, so that if the local anesthesia isn't sufficient, they can administer some sedation and anesthesia as needed.

Ø  The state of the wound will determine what exactly they will do. The goal is to staple each end and perhaps staple the entire wound shut. Otherwise they will tape the middle.

Ø  Without the wound vac, which uses a portable motorized pump, about the size of a small toaster, David will be more mobile.

Ø  The preliminary analysis of the CSF for infection and viruses is negative.

Ø  We are waiting for the cytogenetic analysis of the CSF, looking for leukemia cell markers. The fact that his white blood counts are back up to normal means the test will be more accurate than last week.

Ø  Although they are short-staffed today, Molly, a physical therapist, energetic and take charge, arrived this morning to start PT. With two lumbar punctures in two days and once a day vomiting, David has not taken 2 steps in three days.)

Ø  David is to sit up, unsupported, as tolerated.

Ø  David is to lie down, as flat as possible, to stretch the abs.

Ø  I read him Helaman 5 and 6 today, the third day in a row that we've had some scripture study. Yesterday he was reading single verses, with difficulty. Today he just rested while I read.

Ø  David had 4milkshakes today, with no vomiting. The vomiting is a mechanical problem. The intestines are still  sluggish from surgery,  so peristalsis stalls and vomiting occurs. The remedy is to go slow, but keep trying until it takes.

Ø  Not so good, but manageable: one lap around the unit shot his heart rate to 132. Katie, our nurse from Minnesota (who has seen the biggest ball of twine in Minnesota, or at least the movie), monitored it.

Other item:

Two inventory soldiers were here yesterday, checking the registration of the bed. "This looks like a SICU bed," one muttered to the other. Katie confirmed that they want to reclaim the bed. It’s been a nice bed.

Next steps:

Ø  Get the final CSF results.

Ø  See how much of the wound they can staple tomorrow.

Ø  Have David sit up and exercise, without overdoing it.

Incentive Spirometer

            An incentive spirometer is a blue plastic hollow column with a white ball inside, attached at the bottom to a flexible hose with a mouthpiece at the far end The object of the game is to make the ball hover, halfway up the column, for an extended period, which requires sustained, supported exhalation and deep inhalation. This moves the air from the bottom of the lungs, where it’s dark and moist and infection-prone.

            David has an assignment to do 10 breathes every hour. However, with setbacks and procedures, this has never happened consistently. But from 5 p.m. to 7 p.m. he has been doing it, in his words, “A lot.” It’s hard work for a leukemia patient with a major abdominal incision, but David’s a soldier, and a tough one.

            The lumbar puncture was successful, thanks to CT imaging that let the neurologist watch the needle placement. Cerebrospinal fluid is being analyzed for bacteria and viruses here at Wrenmimic, and some is winging its way to San Diego for cytogenetic testing of the fluid for leukemia cells.

            Doctors’ rounds today:

·         Surgery will probably remove the wound vac and staple the incision closed for complete healing in a day or two. Right now the vacuum sponge has clear tape over it, which makes the incision very impressive to see.

·         Neurology continues testing and still can’t find a cause of the slurred speech and hyper-reflexes.

·         “Hem/Onc (hematology/oncology): We saw all five current “hem/onc” doctors: the resident, fellow, and three of the attendings, through the day. The results of the cytogenetic testing will determine the next step. Meanwhile, David is charged with getting stronger. He’s taking his assignment very seriously. The two lumbar punctures in two days slowed him down, since he had to lie still in bed to prevent a post-puncture headache, besides the subsequent exhaustion. But this evening he stood up with assistance and even got on  his tiptoes.

            He’s still having trouble keeping his liquid diet down. The intestines are still waking up, so the vomiting is a mechanical reaction. He’s slowly eating milkshakes and finds them delicious. He vetoed Boost and a frozen nutrition cup. I tried it and it is awful. I couldn’t get it down, and I’m a charter member of the Clean Plate Club.

Vanilla Shake

            Well, I splurged at lunch and ordered a milkshake for dessert. To this point, I’ve only had one cheesecake; every other time I’ve ordered fruit plate for dessert. Jim told me this morning that he had a strawberry shake last night. My vanilla shake was soooo good. And right on the cup it says:

 “real ice cream + dairy fresh milk + sweet vanilla= pure genius. Milkshakes are delicious—it’s mathematically proven, you know.”

[Shout out to Keepin’: how’s their math?] You know, 4 out of 3 people don’t understand math.

            And now the David report. David had a strong start this morning. He walked about 10 steps and then practiced moving from chair to bed for several minutes. But then he vomited, which was discouraging to both of us.

            They decided to do a second LP (lumbar puncture). They are concerned about the slurred speech and hyper-reactive reflexes. They want to double-check for leukemia in the CSF.

            The second LP was not successful. It’s hard to position David well, because of his abdominal incision. Tomorrow they’ll take him to another bed where they can position him better.

            Good news: they changed the “wound vac”, which is a sweet little device. It’s a sponge attached to a motorized vacuum that gently draws fluid away from the wound. Healing occurs much faster.

            David has swelling, particularly in his feet and ankles. This is due to a lack of the protein albumin. He doesn’t feel like eating, so they are going to continue to encourage him to eat, but will start a nutritional IV tonight. There are reasons we have digestive tracts, and it’s best not to bypass the process, but, he really needs the building blocks to heal, hence the IV supplement. It will run for 6 hours each night.

            It’s tough to have setbacks, even small ones. But everyday there are good things. My brand-new visiting teachers (see SICU Day Four) came, chatted, and listened to me. It felt so good to speak heart-to-heart with them. One had lived in Germany, so we swapped stories about how Germans have a different concept of time, much longer-range than Americans. American history is so short compared to theirs.

            I’m getting to understand David’s slurred speech better, and he is very patient. We’ve held hands several times today, sometimes to make sure I’m doing okay, and sometimes for his support.

            I am able to see how determined David is to move forward in his healing. A week ago, when I came, I was reluctant to be the “bad cop” and pester David about using his incentive spirometer and about getting up and moving around after surgery. But I’ve now learned that David is doing his best and really appreciates my reminders.

            And, the best: Today our missionary daughter, Annie, conference called from Taiwan. Jim, R’el, Peter, Matt, and Sam were all on the call, as well as David and I. Xiomara had to work, and we missed her.

            Annie is doing so well, learning to speak and read Mandarin and learning to love and serve the people she meets. What a wonderful Mother’s Day, to talk with all my children, and hear one year-old Andrew in the background.

Better Day in 5 West

I couldn't update my blog last night, but David is doing much better than Saturday. The surgeon said the 2 CT scans showed nothing dangerous, so at this point there is no leakage of the small intestine and no need to do surgery. A doctor was pushing on his belly Sundatday and it didn't hurt, which is a HUGE change from  yesterday.

The oncologist, Captain McDuffee, who is the oncology fellow on David's case for the next month, had great news:

1.       The final analysis of the bone marrow biopsy shows complete remission!!!!!

2.      The cerebrospinal fluid didn't have leukemia cells or infection.

3.      An outside lab is doing some molecular analysis of the cerebrospinal fluid. Hopefully we'll get the results tomorrow.

4.      As soon as the surgeon okays it (that is when David has recovered enough from the surgery), they will start "consolidation" chemotherapy, as a bridge to maintain remission until the transplant can be set up.

5.      Dr. Mo, the main oncologist at Wrenmimic, knows an oncologist who does transplants at Dana Farber in Boston!!!! They've talked about David.

6.      As far as we know, everything is in place for the transplant to occur in Boston. They can't set a date for the transplant until #4 happens.

7.      David actually WENT OUTSIDE today, for the first time in 7 weeks. We wheeled him to the elevator and up to the 7th floor roof garden. Nothing fancy, but fresh air and sunshine. We stayed about 10 minutes, in the shade. David thought it was wonderful.

8.      David gets tired very easily.

9.      David was anemic, but had blood products yesterday and his blood levels are better today.

10.   David hasn't had solid food for over a week, but is starting to drink more calories today, so he should start getting stronger.

            He has some swelling, which is probably due to lack of albumin, a protein in the blood vessels that keeps fluid from leaking out of the vessels.

Abdominal X-ray and 2 CT Scans

            David had an x-ray and two CT scans today. His abdomen is distended and they think it might be air in the cavity or an abscess caused by leaking of the small intestine. We’ll have the results tomorrow.

            I had a bit of a panic this morning, when the oncologist mentioned “surgery coming up today.” I may have blanched; I said I hadn’t heard about more surgery. No, no, he quickly assured me, he meant that the surgery team would be visiting.

            Jim travelled all night on Megabus, and enjoyed 2 whole seats from Baltimore to Union Station in D.C. He arrived about 9 a.m., after David’s visit to x-ray (transferring from his bed to the wheelchair was very painful. He’d woken with pain several times during the night, hence the x-ray and CT scans.).Our escort, HN Campbell, is from Worcester. He misses Massachusetts; and the fall colors: his parents and most of his siblings still live there.

            “Neurology” came in for the daily pushing and pulling. They hope the slurred speech is a side effect of one of the antibiotics, Flagyl. They discontinued it a week ago, but we have to wait up to three weeks for results. They’ve ruled out stroke, although they ask him to smile each day: always re-checking, lots of redundancy.

            David’s last solid food was oatmeal and cream of wheat, on Friday, May 2. He has had “clear liquids”, like jello and broth. Today he’s had nothing, waiting for the results of the first CT scan (which was a request for a second scan), and then drinking more contrast for the second scan, which happened about 9 p.m. We’ll hear the results tomorrow.

            David’s complete blood counts were low, so he had more blood products by IV, irradiated (what a sensible form of sterilization, wish more food were treated that way), with the white blood cells removed. His white blood cell count is above of the range where there is concern about spontaneous infection. Neutropenia shouldn’t be an issue until he has more chemotherapy, in preparation for the bone marrow transplant. The chemo can’t start until David recovers from the abdominal surgery. As Captain McDuffee, the oncology fellow for this month told David, “Your job is to get stronger.”

SICU Day Four

            I’ve got to get to bed, so this will be short and ecstatic. The results are just preliminary and David still has a very dangerous disease, on top of recovering from major abdominal surgery.

            The bone marrow biopsy of yesterday shows no cancerous blasts. This one biopsy is not enough to declare “remission”, but we’re at least getting closer. Of course, I’ll keep you posted as the more detailed molecular analysis is completed.

            The three vials of CSF (cerebrospinal fluid) they removed during the lumbar puncture yesterday show no sign of infection or leukemia. Again, this is not the final analysis, but it is very good news.

            David was moved back over to the hematology/oncology ward: 5 West, room 3. I never thought I’d be happy to see my son put in an oncology ward, but now there won’t be a “SICU Day Five” blog post. The transfer took 2 or 3 hours, mostly of waiting and chatting with the Fort Hood liaison, Sergeant Josh Smith, who represents the First Cavalry here at Wrenmimic. Turns out he was born and raised in Charlestown, just down the hill from the Bunker Hill monument. So we talked about Boston, the Revolutionary War, including the winter of 1775-76, when General Henry Knox moved 59 pieces of artillery, including 43 heavy cannon, 300 miles from Fort Ticonderoga in New York to Dorchester Heights, overlooking the Boston harbor. (See Henry Knox Brings Cannon to Boston). Josh calls the earlier June 17, 1775 engagement the Battle of Breed's Hill . I love it!

            After David was all settled in on 5 West, room 3 (the third room he’s been in on the oncology unit), I walked to Bethesda Center, to activate his new ATM card at a machine and find some supper. Had a delicious meal of pork, snow peas, ginger, carrots, shiitake mushrooms, and brown rice. I’ve never liked the thought of eating alone at a restaurant, it seems so publicly ALONE, but I reveled in it tonight.

            And after a week of never hitting 6000 steps, I did 12,012.

            Earlier today, I got a visit from four “senior missionaries” who serve at Wrenmimic: a married couple I had met back in March, and two brand new sister missionaries. FYI, a senior missionary is usually over 50. They were the same tags as the 18 year olds you see all over, but they serve in a variety of ways. These missionaries spend much of their time helping people at Wrenmimic. I told them that David was well taken care of by his Washington D.C. 2^nd ward, but they said, “We’re here to help you.” They listened to me pour out my heart and the story of my life since March 19^th, including the huge stresses of this past week. It felt so good to be able to talk to women who could be my older sisters and to share my experiences with such empathetic listeners. One of the sisters said, Consider us your visiting teachers. (Visiting teaching is organized in each congregation. Every woman in a congregation can have a pair of women who help her in any way she wishes: spiritual, physical, emotional, social. I have loving visiting teachers in Massachusetts, but it feels great to have a pair that serves right in Wrenmimic.)

            And now to bed. To paraphrase Phil Connors: It is the end of a VERY long week.

SICU Day Three

            It’s 6:20 p.m. and I’m sitting in a sage green swivel chair, with my legs up on a padded sage chair. David is sitting up again, in the slightly darker green armchair, sipping his peach yogurt drink, and eating jello. Indirect sunlight comes in through the two large windows of the room, with its $30,000 Hill-Rom bed; two IV stands, which are delivering magnesium and Lactate Ringer fluid (whatever that is); and a trash can that regularly fills up with yellow gowns and grey gloves, discarded by the seemingly endless stream of specialties. He looks so much better than yesterday, able to sit up and watch Grey’s Anatomy and feeling good enough to complain about the fact that it took nearly 3 hours to watch a 40 minute episode, with that interrupting stream of doctors, nurses, and medical students.

            R’el arrived last night via Megabus and Red Line subway. Matt had left Yarito, (her Yaris), in the Wrenmimic parking lot and I drove him to BWI (Baltimore Washington International Airport). R’el stayed the night in David’s room. Matt had found it useful to be with David through the night.

            I arrive at about 8 a.m. this morning. The SICU (surgical intensive care unit) team had already visited. I saw the Infectious Disease fellow and fourth year med student, who is David’s home teacher, Seth. Home teaching is a program in our church (The Church of Jesus Christ of Latter-day Saints: we’re Mormon), where every member and family can be visited, ideally at least once a month, by a pair of members, who are available to help with any needs, physical or spiritual. The congregation David is a part of while at Wrenmimic, the Washington D.C. 2^nd ward, consists of single Latter-day Saints, ages 18-30 years old. They’ve been very supportive, bringing sacrament every Sunday and visiting during the week. On Monday, two men were able to come and give David a blessing right before his colon surgery.

            I went to Dunkin Donuts or “unkinD Donuts” (that’s a Wordplay quote), to get R’el a couple of breakfast sandwiches. When I returned, Dr. McDuffee had just removed her gown, but stayed to give me her report.

            The major message she brought yesterday and again today, is to take the treatment one day at a time. On today’s docket was a bone marrow biopsy, to determine the leukemia count, and a lumbar puncture, to check for leukemia in the CSF (cerebral spinal fluid). They did the biopsy with David lying on his side, and followed immediately with the lumbar puncture. Then David took a well-earned nap. Even when seated, he closes his eyes frequently: I don’t think his sleep is completely restful.

            Some good news is that he is officially not neutropenic. His white blood cell counts are near the low normal range. But with the excitement of the procedures, they’ve let him stay in SICU one more night. He had a lot of stress today. His monitor, which shows heart rate, breathing rate, blood pressure, oxygen saturation, etc., is pointed directly towards the nurses’ station, so they can keep a close eye on him.