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.