Getting to Walter Reed

Some days, there’s not a whole lot to say.  At this point, being in the hospital is starting to feel “normal”—as if being here could ever be normal.  There’s a sort of routine to things—though the routine can be interrupted at any point.

I didn’t get to see Billy a whole lot today, but when I asked about his day, he said it was “uneventful.”  Given the journey over the past month or so, it’s nice to hear him say that.

Billy was diagnosed on September 23, 2010—just under a month ago.  I’ve told a lot of the stories that have happened over that time, but there’s a big one that remains untold:  how we got to Walter Reed.  I was planning to tell the story soon after we arrived here—but the pace of life took off at high speed once we discovered Billy’s infection.  My priority became relaying the details of the infection and Billy’s progress in fighting it.

Today, Billy is doing amazing!  My mom spoke to someone today who nicknamed him “Chief Miracle Baby,” because he continues to defy the odds and predictions of the doctors.  Billy is healing from the infection in ways the doctors never expected!  When Billy got the infection, a surgeon by the name of Dr. Hueman got involved—and we’ve talked to him almost daily since we arrived here.  Billy was so sick, Dr. Hueman thought he’d never heal without surgery to “clean out” the infection.  Even though surgery would be incredibly risky, Dr. Hueman thought surgery was better than the alternative.

During the past 2 weeks, Dr. Hueman has recommended surgery to Billy.  Initially, it would have been a highly-risky surgery to “clean out” his abdominal cavity.  By October 14, his recommendation changed:  a less-invasive but still risky surgery to drain an infection in his side, and (if necessary) the original abdominal surgery.  Billy had developed an infection on his left side due to one of the procedures to drain fluid from his belly.  The site was puffy, and the redness was spreading down his leg.  Dr. Hueman was concerned about a major infection, or a leak in Billy’s bowel or intestines, and possible dead tissue in his leg.  He felt an urgent need for surgery.

But October 14 was Billy’s 26th birthday, and as the patient, he “outranks” everyone else in terms of making decisions for his medical care.  He said he’d consider surgery (if his pain got worse), but not on his birthday.  He figured he’d take his chances and “wait and see.”

Every day since then, Dr. Hueman has come back.  He has continued to recommend surgery, concerned that Billy’s body might stop responding to the antibiotics.  But Billy has persevered.  “Against medical advice,” he has chosen to wait.

This morning, Dr. Hueman changed his recommendation.  He’s no longer recommending surgery!  (Do you remember me asking you to pray that Billy wouldn't need surgery?)  The infection seems to be clearing up.  Billy’s left side is still swollen, infected, and painful—but it’s getting better!  His leg is no longer in pain, and the infection seems to be a LOT SMALLER!

The bigger issue still remains…the gastric cancer that has spread outside his stomach.  His stomach still doesn’t work, so he can’t eat anything.  The doctors aren’t sure if Billy will be able to tolerate another round of chemo.  It’s a bleak picture, when we look at the medical expectations.

But we’ve been praying for some specific things, and those things have been happening!

Just last night, Bobby, Danny, my mom, and I stood around Billy’s bed, and the 5 of us prayed for these things:

• Billy’s temperature measured around 100°F.  We “prayed against” any kind of fever, asking God to bring his temperature down.
• We were told that the NG tube was draining A LOT of fluid from Billy’s belly.  My mom prayed for the fluid level to decrease by half.
• For the tumor to start decreasing in size, so there would be less pain.
• For anything negative that had occurred during his physical therapy session earlier in the day to be reversed (something had “pinched” and was causing him pain).

And today, guess what happened!

• His temperature decreased.  It was 99° F.
• The fluid level from today is about ½ of what it was yesterday!
• The infection site was less red, though still protruding slightly.
• And his infection had decreased so much that the surgeon no longer recommended surgery!    

It seems as though God is responding to the very details we’re praying for.  So please keep praying!

Here are some things we’re currently asking God for:

• That Billy’s pain would go away.  Billy is taking a lot of dilaudid, and he’d like to be able to move around without painkillers.  
• Billy’s infection (the one in his side and anything else in his belly) to heal COMPLETELY.
• Billy to be able to go outside and enjoy it (without a lot of pain).  Currently, a small move just inside his room hurts a lot and takes a lot out of him.  There are supposed to be some country musicians here this weekend, and I’d love to be able to take Billy outside to listen to them.  
• Billy’s stomach and intestines and everything else in his GI tract to start working, so he can eat again!  He’s still unable to eat and has the NG tube down is throat.  

The Journey to Walter Reed
Billy was diagnosed at Baptist Hospital in Miami.  No, he never lived in Miami.  Baptist Hospital is a civilian hospital, and it made no sense (in terms of how the army works) for Billy to be there.  He had been on leave for a bit, and was taking time to visit friends (all over the world) before he reported to Hawaii in mid-October.  He had just returned to the U.S. from a visit to his friend Nate's family in Germany, and was on vacation with friends in the Florida Keys.  Billy went to the emergency room on Monday, October 20, the day before he was supposed to fly to Costa Rica for a meeting.  That night, they admitted him to the hospital.

Thank God Billy wasn’t in Germany or Costa Rica when he was diagnosed!

As I’ve mentioned before, the doctors in Miami diagnosed Billy on Thursday, September 23.  That day, my mom arrived in Miami, just after Billy heard his diagnosis.  I flew in the next night.

From the time my mom and I arrived, we have never had to pay to stay anywhere!  Friends—people who have become part of our family—have fed us and housed us.  Tyler and Melissa opened up their home.  Melissa’s family fed us every day we were in Miami.  Adrienne drove from Fort Rucker to Miami just to serve us (by cooking food, running errands, doing laundry, etc.)  And the support of family and friends has been amazing!  My Uncle Paul (retired from the army) lives in Florida, and he spent a lot of time with us in Miami.  His hugs and affirmation helped in more ways than I can express.  Nate flew in from Germany.  His presence was a huge benefit to Billy.  Because Nate and my Uncle Paul know the army, they’ve been able to help us in some key moments.  It feels like God has provided for needs right and left!

Uncle Paul, Aunt Janet, and My Mom (Jill)

(Even before I left State College, friends—and people I had just!—met handed me money to make sure I could get to Miami to be with Billy!)

But there was an issue that came up in Miami…Billy was a warrant officer in the army, and so the army got to decide where Billy’s treatment would happen.  From what I understand, by army protocol, Billy needed to be seen at an army hospital, and standard procedure meant he would go to Fort Gordon to be assessed, and then he’d move to a facility for long-term treatment.

But that didn’t make a whole lot of sense to us.  We knew that Billy was REALLY sick.  A move from the ICU at Baptist Hospital up to the 5th floor (oncology unit) took a huge toll on him—and that was inside the same building.  How could Billy handle multiple moves from one hospital to another?

My mom began having conversations with Major Smith from Fort Rucker.  Somewhere in the process, we came up with the idea of sending Billy directly to Walter Reed, so there would only have to be one move.  Walter Reed has a reputation as a facility with excellent pathology (the way doctors determine diagnoses) and access to phenomenal cancer treatment options.  It sounded like a great idea, and Billy was all for it.

Everything seemed to indicate that a move would be happening soon.

Except for one thing…there were no orders to move Billy anywhere.  And without orders, nothing would happen.

Somewhere in all of this, my cousin Pam entered the story.  Pam is, as my Massachusetts cousins would say, “wicked smart.”  She works for Massachusetts General Hospital, and she has a teaching appointment at Harvard.  She teaches doctors, and she’s part of a group that does lung cancer research.

Pam is also amazing at networking.  She was recently at a meeting, and she mentioned Billy’s condition to some of her colleagues.  These colleagues are connected to all kinds of people.  One of them talked to someone—and somewhere in all of those conversations, we were given a name:  Col. David McLeod, a urologist at Walter Reed with a reputation for getting things done.

So Pam sent a few emails on Friday, October 1, and soon we were in direct contact with Dr. McLeod.   It makes sense that we’d talk to a doctor at Walter Reed—but he’s a urologist, and Billy has gastric cancer.  Pam contacted him on Friday, but he decided to spend his weekend working through “red tape” to get Billy to Walter Reed.

Dr. McLeod is the kind of man who makes things happen.  At 6:47pm on Sunday, October 3, we got an email from him saying “Tomorrow I believe that I can report this situation is being resolved.  Will keep everyone in the loop…”  On Monday, October 3, he emailed saying that everything was in place, and he would be the “accepting physician” (which made no sense, since his specialty had nothing to do with Billy’s diagnosis).  “Look for a hiccup in all this,” he wrote, “but when it happens we shall nip it in the bud…  There is no way that our patient will be going to Georgia.”

I should make a quick side note here…  We have no personal experience of Fort Gordon.  We just knew that Billy was VERY sick, and there was no way he could have survived multiple transfers.  Baptist Hospital wasn’t a “cancer center”—and given Billy’s diagnosis, he needed to be in a place that had some hope for him.  During conversations with people, it was clear that no one really understood how serious Billy’s situation was.

But Pam got us connected to Dr. McLeod, and Dr. McLeod understood—and he worked to move mountains.

My Mom (Jill), Dr. McLeod, and Me

On Wednesday, October 6, the army transported Billy to Walter Reed.  He rode in an ambulance to the airport (sirens blaring), and then he flew on a private jet to Andrews Air Force Base.  From there, a Walter Reed ambulance got him to the medical center.

The Walter Reed Ambulance

Billy only remembers one thing about the trip:  walking off the plane.

Walking off the plane.

But it wasn’t a walk of triumph.  We didn’t know it yet, but Billy was already sick with a serious (septic) infection.

The medical staff here at Walter Reed have been amazing, and they’ve gone to great lengths to care for Billy.  The situation here is completely different than the one in Miami.  Physicians work in teams (it’s a teaching hospital), and they’re willing to spend as much time with us as we need, answering all of our questions.  They know this is a tough situation.  I have appreciated their medical expertise—but their care for us as people—as Billy’s family and friends—amazes me.

I am discovering that some people in the medical field work here because they’re very intelligent.  But the ability to understand the human heart can seem non-existent.  However, it’s like some people were born to do this sort of thing—to care not just for the physical health of a patient, but to care for the health and well-being of the patient’s family as well.  Watching those sort of people is an inspiring experience, and it has touched me deeply.

• I’ve thanked Dr. Klotz (an oncology fellow) for all of his patience and help with Billy, and he told me it was “an honor” to get to practice medicine.  
• Lieutenant Strong—the charge nurse in the ICU—humored my questions about nursing as he prepared to move from the ICU to a room on the oncology ward.  
• Ya Ya (an amazing ICU nurse) has become the standard by which we measure nurses.  Her patience and demeanor—especially in an intense environment like the ICU—helped set all of us at ease.  
• Even Sam—a nurse here on the 7th floor who is not even assigned to Billy—has jumped in to make sure that our needs are met right away.  One night when I asked about cleaning Billy’s room, Sam assured me it would happen “within the hour.”  And then he jumped in to help us move the furniture out of Billy’s room.  True to Sam’s word, the room was clean within 30 minutes.    

Here at Walter Reed, we’re being taken care of.  I’m a little weary of the cafeteria food—but I think that’s my only complaint.  The company has been good.  We keep meeting phenomenal people.  And the oncologists and surgeons—as incredibly intelligent as they are—are also humble and caring.

I like finding the “perfect” gift for someone—the kind of gift that fits a person and a situation just right.  Over the past 2 weeks, the way the little details seem to be getting worked out makes me think that God is up to something…