Lexington Interlude

            Well, David did finally come home yesterday, Thursday, 29 May. Today we went to the outpatient clinic for pulmonary testing, but otherwise had a quiet day at home. I’ve been making blueberry milkshakes to help David gain at least a few of the 30 lbs. he’s lost over the last 10 weeks. Jim and I collaborated on a lemon meringue pie, which is being served right now. We just finished our monthly Johnston Family Book Group call, discussing Steven Pinker’s The Better Angels of Our Nature: Why Violence Has Declined. I recommend it.

Anticipating Outpatient Life

            In a couple of hours I will bring David home from MGH. We weren’t expecting this, but it will be a great relief to all of us to have him actually at home. He has been in a hospital, first in Korea, then at Walter Reed, and now MGH, since March 19^th, 10 long weeks.

            We did land at Hanscom Airport Friday evening and arrive at MGH via ambulance without incident or even heavy holiday weekend traffic. David’s bone marrow biopsy was yesterday, 27 May. We’re waiting for results. He also had an echocardiogram and pulmonary testing.

            The game plan is for David to regain some muscular strength and cardio endurance before the next phase, which will involve completely eliminating David’s immune system prior to transplanting, via IV, Sam’s stem cells. Hopefully the new stem cells will accept David’s organs, and David’s body will reciprocate. This will be a critical time for David. If all goes well, he will return home to recuperate. More about that as it happens. Briefly, he will spend the first 100 days post-transplant, at the hospital and then at home, with some restrictions. For example, he will not be able to go to public venues: church, movie theaters, public transit, etc, but will be able to go for walks in parks.

            For now, I’ll be able to cook for him and he can enjoy the freedom to go outside. What would you do after 10 weeks in hospitals?

I Love New England!

            David arrived at MGH (Massachusetts General Hospital) yesterday evening. He and I flew on a King Air BE 200 turbojet from Dulles Airport in D.C. to Hanscom Airport in Bedford, MA, 3.5 miles from our house by bike path. I told the flight nurse, “I love small planes!” He replied, “This is a big plane.” For commuters it would be configured with 13 seats; we had a stretcher for David, and three seats, for the nurse, the paramedic technician, and me. Route 128 and I-93 moved smoothly, a welcome surprise on the Friday of the Memorial Day weekend.

            David is comfortably ensconced in the Lunder building at MGH, built in 2012. His 10^th floor room has views of Beacon Hill and the Statehouse, and sailboats on the Charles. He will have multiple tests, including a bone marrow biopsy on Tuesday, before his new doctors decide on the course of treatment.

            I took a Mom break and have been reveling in doing laundry and cleaning the fridge: truly life’s simple pleasures. Jim and R’el are at MGH with David. Peter, Xiomara, and little Andrew will be here tomorrow, just in time for Andrew’s 13^th monthiversary.

            It is so comforting to be back in Boston. We did go from 80 degree weather to 60s, but I love New England. The trees leafed out while I was gone and my friends are going to help me plant the garden on this Memorial Day weekend. (Last frost day in lovely New England is May 31^st.)

            Thank you for all the kind thoughts and prayers. It is going to be a long haul. Dr. McDuffee, the oncology fellow at Wrenmimic, several times has cautioned to take it ‘a day at a time, even an hour at a time.’ I’m grateful for this peaceful break.

Arriving at Massachusetts General Hospital

Hello. It’s Jim, Mary’s husband and David’s father. I’m glad I could make a guest post on this blog. We are grateful to all of you who have read these posts and tolerated how we have neglected one-on-one conversations with you.

The first reason I want to write today is to salute Mary, your usual author here. We’ll never really know what she has gone through these past eight weeks at Walter Reed, but I guess we can try to imagine. Just one example of her devotion and patience is that at the start of this week, she packed her bags and has had them with her night and day, ready to leave on five minutes’ notice for Boston on a medevac flight with David. What’s probably more of a challenge is that she has had to revise her expectations for that flight countless times hour by hour, at the same time wondering all the while about David’s condition. Once, she was told she could take only a purse on the flight. Once, she was told she might get bumped at the last moment from the flight. And many times she was told, “The flight will be today—tomorrow at the latest.” Through it all, each time I’ve talked with her this week, she has been upbeat and focused.

One reason Mary has been upbeat is that each day for the past eight days, David has progressed. The cumulative improvement is stunning. His low point was the few days after May 5 (the day his large intestine was removed). During those days, David had many bad things going on. He had severe and unexplained slurred speech, with the possibility that it was a permanent consequence of chemo or antibiotics, or worse, a sign that leukemia had spread to his brain. He experienced extreme and constant fatigue and was asleep most of the time. He could eat nothing at all for over a week. He could not sit or stand without help. He was at risk of further abdominal infection, or the effects of possible small intestine damage arising from the surgery. He vomited frequently. On top of it all, we were still wondering during this time whether remission had been achieved. For Mary and David, I think the worst day of all was perhaps Monday May 12, when he endured four lumbar puncture attempts (for the purpose of collecting cerebrospinal fluid to test for spread of leukemia).

But since that very time, the good news has rolled in. The bone marrow biopsy showed the second round of chemo had worked and the leukemia was in remission. David started eating and stopped vomiting. He started talking normally again. His abdomen showed no further infection or damage, and the incision started to heal and close up. He started to sit, then stand, then walk, then try out an exercise bike, and then climb stairs. The cerebrospinal fluid showed no leukemia. Suddenly, so it seemed, he was in very good shape, and ready for the next step, the transfer to Boston to receive a bone marrow transplant (or, more precisely, a hematopoietic stem cell transplant).

I am at Massachussets General Hospital (MGH) in Boston now. The medevac plane landed about 5:45 p.m. at Hanscom Field (very near our house!). David and Mary will arrive at MGH about 6:30 p.m., in a few minutes. I wrote most of this post earlier today, but waited to post it until I could tell you he has actually landed. He’ll be on the tenth floor of the Lunder Building, on the main MGH campus. Lunder opened in 2011. The nurses’ station phone is 857-238-1000. Here at MGH, his lead doctor is Dr. Yi-Bin Chen, director of MGH’s Clinical Research Bone Marrow Transplant Unit. I’ve had several email exchanges with Dr. Chen this week. He has been aware of David’s case for several weeks, and has talked about it with Dr. Clifton Mo, the lead doctor at Walter Reed. We’re grateful for the skill and caring of Dr. Chen and his team. MGH is one of the top hospitals in the country for cancer research and care, and at the leading edge of recent progress in bone marrow transplants and leukemia treatment.

David’s leukemia has been a big education for me. I’ve learned that it’s really bad news when something like an FLT3 mutation happens, and that such reverses can happen anytime to anyone. I’ve learned that life is fragile and our bodies are vulnerable in countless ways. It’s made me feel quite different about waking up each morning and being alive and able to function. I’ve learned that most of our methods for fighting leukemia are decades old and very crude. I’ve learned that chemo is poison to the whole body, not just the cancer, and that the basic goal of chemo is to calibrate the chemo regimen so that the chance of dying from chemo is only somewhat less than the chance of dying from cancer. It’s been a lot to learn.

But this is just the beginning. I’ve glimpsed the beautiful complexity of all that goes on, correctly, in a living body, even a diseased one, without our awareness or intervention, moment by moment, year after year after year. I’ve learned that the power of the body to heal and recover exceeds the power of any surgery or medicine. My awe for God’s creation and our physical bodies is greater now, not less.

I’ve also gotten to know David, Mary, and myself better as together we’ve faced the possibility of death and the certainty of pain and severe limitations, and as we’ve put ourselves in the hands of doctors and nurses, and in God’s hands. I’ve come to see this episode as an intensely concentrated time of life that is teaching us much of what our mortal voyage on earth is meant to teach us, but more deeply and quickly. I’ve seen in our son David the great wells of patience, good humor, wise perspective, gratitude, and a determination to see this through. At Walter Reed, I saw an army (and navy!) of trained, caring professionals take care of our son in a most remarkable way, for which I’m very grateful.

There was Dr. Wanko who met us the first day, March 26, and was prepared for our arrival. He gently explained what to expect and how fighting leukemia would call on all David’s warrior training. I retain the image of him tenderly examining David’s arms, where his veins were painful and damaged by IV insertions in Korea. Dr. Scofield delivered the message that a cure was possible, tempered a couple of days later by the message that we had to get started without delay on the chemo because people do die of this disease. Ensign Frank started the chemo, and patiently held that gigantic syringe full of evil-looking red daunorubicin for 15 minutes of gradual injection. SPC Colon learned that David was a medic and teased him that from then on, David would have to take his own vital signs. Nurse Capps gave David a loving but firm lecture about breathing deeply and getting exercise, to avoid pneumonia. Dr. Mo spent 45 minutes with me on May 4 to orient us and set our expectations; he was masterfully effective, and he initiated and paved the way for the transfer to Boston. Dr. Rodriguez performed the appendectomy and the colectomy, and then vigilantly watched for any complications that would require further surgery. Dr. McDuffee has been our constant strength the past three weeks, and Dr. Carter also. There are many more, and in a future post I’d like to mention them all.

Now we start the next chapter. The bone marrow transplant offers the possibility of a complete lifelong cure. It is also a dangerous move that is not undertaken lightly. Getting ready for it requires that, yet again, David’s bone marrow, blood cells, and immune system be knocked out completely.

I’ll end the way I began, with a salute to Mary. She has been just the mother David needed at this time, and she has done all that needed to be done.

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.

SICU Day Two

What we know:

The incision looks good:

Tomorrow, 8 May, they will remove the tape that’s holding the skin on his abs together and replace the sponge that’s filling the gap, which is about a foot long (I haven’t measured it, but trust me, this was major abdominal surgery.)

David hates the calf cuffs:

They squeeze his calves every few minutes to prevent blood clots in the legs. The pump emits a “puff-duff” sound of exhalation after every squeeze.

David retains his sense of humor:

When I asked Dr. McDuffee, the oncology fellow for this month, questions as she came in today, she said she was planning to get to them after she spoke with David. David piped up: “Please hold all questions to the end.” Touché.

David retains his deep compassion:

An inexperienced student removed his nose tube yesterday. I looked up for a second, but looked away when I saw David’s eyes open wider than I thought anatomically possible. As soon as it was over, David asked the student: “Was that your first time?” The student rather sheepishly admitted it was. “It didn’t hurt at all. It was weird, but it didn’t hurt.” Sick as he is, David’s primary focus was on giving the student a good experience.

David is serene and at peace:

While Dr. Mo, an attending oncologist, was talking with David, David mentioned that he hadn’t eaten any solid food for about a week. He was drinking some water at the time. “Do you know how good a glass of water tastes?” The gratitude, deep appreciation, and serenity of his savoring each sip was heavenly.

What we don’t know:

:Whether or not the second round of chemo had an adequate effect:

A bone marrow biopsy Thursday, 8 May should yield preliminary results by Friday afternoon and full results Monday or Tuesday. What they are hoping for is a smaller percentage of blasts than last week.

Why David’s legs shook involuntarily throughout the day yesterday:

It may relate to his electrolytes being out of kilter after the surgery. They continue to give him electrolytes and test his blood levels. We haven’t noticed it most of today.

Why David has overactive reflexes:

When the neurologist hits his knee with the ubiquitous rubber hammer, David’s leg pops up dramatically.

Why David’s speech is slurred:

The neurology team is following this.

SICU

            I arrived by Amtrak and Metro Red Line around 8:15 p.m. last night. It’s strangely comforting to be far away from home, and on a Red Line. I was grateful that Jim had prepared me for the change in David. Looking into a brightly lit hospital room I saw a pale, other-worldly face with impossibly smooth skin and prominent jaw. Although David stirred and even spoke during the evening, he was incredulous this morning when Matt told him that I had visited.

            Today David was alert, with color in his cheeks. We had a constant stream of medical visitors at the SICU (surgical intensive care unit): the huge surgery team doing rounds, the GI team, the infectious disease team, an oncology fellow, a neurology resident, nurses and students.

            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.

            The protection is for us: 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.

            David’s heart rate has returned to 120, but his 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.

Now We Know What C-Diff Is

It’s May 6 and it’s been six days since my last entry. I arrived back at Walter Reed last night. Here is a post Jim has provided.

On May 5, David had a new development. His large intestine suddenly became much more enlarged and infected. The team decided it was best to remove it. The surgery began about 3:40 p.m. and took about three hours. It seems the appendectomy in early April was just a rehearsal! The likely cause of the enlargement is a clostridium difficile  (c-diff) infection. The team concluded a few days ago that David had a c-diff infection and they were monitoring it closely. We understood the danger better after reading  http://en.wikipedia.org/wiki/Clostridium_difficile. This species is commonly present in people, but can spiral out of control in a situation like David’s with low immunity and with competing species wiped out by antibiotics. The surgery went well. The hope is that David’s general condition will improve with the infected large intestine gone.

On May 2 we got the great news that the second-round chemo has worked much better than the first round at reducing the count of leukemia cells. After the first round, blasts over 70% were still observed (under 5% is the ideal). In the biopsy 14 days from the start of round two, blasts of 5-30% were observed. The range is broad because there are hardly any marrow cells left (the goal is none) and determining with confidence the proportion that are blasts is therefore difficult. The next biopsy will be later this week.

From April 14 to May 2, neither Mary nor I could visit David. We did Patriots' Day in Lexington and a trip to Utah for Carla's wedding. We are especially grateful to the many extended family, ward members, and friends who visited during this time.

I (Jim) arrived at Walter Reed the morning of May 3. My mom, Charlotte, arrived in the afternoon, and David’s brother Matt arrived May 4 in the early morning. David was sleepy and subdued, but still in good humor. Charlotte commented that David was good at letting people know what he needed. David said, “Well, yes, I’m the one who is the leukemia patient. I have the trump card.”

The discussion with Dr. Clifton Mo on Sunday morning May 4 was truly helpful and comprehensive. We now understand that though the assigned attending physicians, fellows, residents, and nurses rotate with dizzying frequency, Dr. Mo is always involved in David’s case in the background and is the decision maker. Dr. Mo is a leukemia hematology/oncology specialist. He graduated from West Point and Yale University School of Medicine (in 2004). And, nine people in my LinkedIn network know someone who knows Dr. Mo!

I left Walter Reed for home Sunday night May 4. Charlotte left May 5. Very fortunately, Matt was with David all day May 5, including after the large intestine surgery. We had a long phone call with our children last night.

It helps us to stay oriented to the big picture. The desired sequence was and still is:

1. Chemo kills nearly all David’s blood and marrow cells, good and bad.
2. David’s good marrow and blood cells start to regrow, with few bad cells. Achieving (1) and (2) is called “remission.” It’s not a cure, it’s a big reduction in leukemia.
3. The state of remission continues for several weeks.
4. A bone marrow transplant from a matched donor is done. David’s brother Sam is a perfect match. We learned from Dr. Mo that he’s already started arrangements for David to go to Boston’s Dana-Farber Cancer Institute for the bone marrow transplant, once he’s in remission.
5. Sam’s stem cells establish themselves in David’s body and give David a new immune system. It takes weeks for the new immune system to get up and running, which is why it is so important to be in remission before the transplant and for several weeks into the transplant.
6. This new immune system finishes the job of wiping out the leukemia.
7.  Five years without recurrence is considered a complete cure. After this, the lifetime risk of a recurrence is only slightly higher than for the population as  whole.

Along the way, there are three main risks:

1. Chemo complications. David has had lots of them: fever, appendicitis, diarrhea, esophagus pain, abdominal pain, slurred speech (this started May 2 and continues), extreme fatigue and sleepiness, loss of appetite (May 3), weight loss, loss of hair, and infection, especially the May 5 crisis with the large intestine.
2. Failure to achieve remission. “Refractory” leukemia just does not respond to chemo. The next line of defense is novel drugs that target cancer cells selectively.
3. Transplant complications. Graft vs. host disease could arise from the transplant itself attacking David’s healthy cells. During early weeks of the transplant, infection also continues to be a risk.