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.