Chocolate Milk

This past Monday night, my mom, Chris, Danny, and I were hanging out together with Billy in his room.  Not being one to pay attention to the NFL schedule, I asked Billy if he wanted to watch a movie.  I knew the Patriots were scheduled to play sometime soon, as our cousin, Bryan, had mentioned his game tickets over the weekend when he was here.  So when I asked about watching a movie, Billy declined.  "I want to watch the game," he said.  And that was that.

I didn't mind.  I was glad to see Billy awake, and I was enjoying the time spent with my family.

As we waited for game time, Billy asked Chris for some chocolate milk from the pantry.  Chris went to get it.  I'm not sure when he returned with the chocolate milk.  Chris just came in and quietly placed the bottle on Billy's bedside table.

Chocolate Milk!

Sometime later, during the game, Danny stood up and said, "I'll be right back."  "Where you going?" Billy asked.  "To the pantry?"  Billy wanted more chocolate milk, so Danny gladly went to find some.

The Pantry...where we usually find chocolate milk.

After a while, Danny still hadn't returned.  Billy looked at me.  "There's no chocolate milk in the pantry, is there?" he asked.  "Why?" I asked.  "Is Danny taking a long time?"  Billy nodded, saying, "Chris took a long time, too."

The pantry fridge...where the chocolate milk bottles usually sit.

I smiled.  Something interesting was happening!  Chris and Danny must have walked to the pantry and discovered that there was no chocolate milk.  Then, they each must have taken the elevator to the 3rd floor, bought chocolate milk from Walt's (the snack shop), and come back to the 7th floor.  They both did all of that without saying anything, without expecting any recognition for the effort the put forth in getting chocolate milk for Billy.  It's the kind of thing that Billy has always done.

I had always thought of Billy as the sneaky one--the one who noticed little things he could do for people and then went off quietly to complete his mission, no matter how far he had to go or how long it would take to finish the job.  But now Chris and Danny were in on it.  And I had witnessed Bobby doing things like that before he went back to Colorado.  This kind of thing makes me smile.

When Danny finally came back in the room with chocolate milk, Billy and I made eye contact.  Without saying anything, we both smiled.  Danny saw it, and wondered what the joke was about.  But it wasn't a joke.  We were just appreciating the care Danny and Chris had shown to Billy.

Billy has done so many things for so many people.  We love it when we get to do things for him.

How is Billy?
He's quiet these days, and he sleeps a lot.  His energy level seems a lot lower than at other times.  It has been a while since I wrote an update, so I'll include some summaries:

Nausea  
Billy had been experiencing a lot of nausea last week.  The oncologists thought it was probably due to his liver and his gall bladder not draining properly.  Since the liver and gall bladder drain into the small bowel, and Billy's small bowel is blocked, the liver and gall bladder are probably backing up.  To alleviate this, the oncologists had suggested a percutaneous ("through the skin") catheter to drain his gall bladder.  That was supposed to happen sometime this week.

By Wednesday, most of Billy's nausea had subsided.  The doctors couldn't explain it; his symptoms somehow improved on their own.  At that point, the oncologists and radiologists thought it would be better not to insert the catheter.  Since Billy's nausea seemed to be under control (using scopolamine and phenergan), it would be better not to take on the risks of inserting a catheter into the gall bladder (risks like infection from another puncture or bleeding from the liver).

Pain
The nurses always ask Billy to rate his pain on a scale of 1 to 10.  Overall, Billy's pain seems to be in good control.  He's on a PCA (patient-controlled anesthesia) pump, which delivers dilaudid continuously.  He can always "push his button" if he needs an extra little spurt.  Usually, Billy says he's at a level 1.  He seldom complains about pain--but he seems to have intermittent, unexplained pain.  Some days, his left side hurts.  Other days, it's his right side.

Yesterday, his left side was feeling fairly sensitive, so he had an ultrasound to check for possible pockets of fluid.  They didn't find any pockets, and that's a good thing.

Today, his right side was hurting, so he had another CT scan.  We're still waiting on the results.

Drinking
When Billy is feeling good, he likes to drink ice water, juice, or chocolate milk.  At some points, he has enjoyed milk shakes or smoothies from Walt's (the snack shop on the 3rd floor).  When he started feeling really nauseous, he stopped drinking anything.  Over the past few days, however, Billy has been drinking more--not the shakes and smoothies from downstairs--but juice and chocolate milk.

Ornaments
We've had several fun packages come in the mail.  Thank you to all who have sent ornaments.  Billy enjoys them.  We all do.  (I will post more pictures soon.)

Visitors
This past weekend, Aunt Robin (one of my mom's younger sisters) and Bryan (Robin's son) came.  Uncle Paul (my mom's oldest brother), Aunt Linda (Paul's wife), and Aunt Janet (my mom's oldest sister) have been here all week.  Kelsey comes most weekends.  And last night, we got to meet Sarah--the girlfriend of one of Billy's army friends.  It has been fun to have visitors here.

How to Pray

• For Rest and Energy.  There are so many interruptions in the hospital; it is often difficult to sleep through the night.  Pray for peaceful nights, good rest, and energy for Billy to sit up and go for walks during the day.  (Sitting and walking help keep his lungs healthy.)
• For Healing.  Billy's left side is healing from a fairly large incision.  His liver isn't working as it should.  His bowel is still blocked.  And his abdomen still has a lot of fluid, with cancer cells spread throughout.  Pray for healing for all of these things.
• For Perseverance and Goals to Work Toward.  It's kind of like a marathon, only longer.  Pray for all of us--to know what the next goal should be, and to know what we need in order to keep going.  Day after day in the hospital can be wearying.  Pray for fun things, good memories, and things to work toward to break up the monotony.  

Thank you for cards, and ornaments, and notes, and thank you for praying!

Celebrating Life

When Billy goes for a walk, the whole floor seems to come alive.

Walking has been a bit more difficult these days, as Billy has been nauseous and tired.  He used to be able to drink various juices and broth.  The NG tube would immediately pump the liquid back out, but it was nice for him to be able to enjoy different tastes in his mouth.  For the past week or so, however, Billy has felt “full.”  In the past, the NG tube alleviated his nausea; now, the suction tube doesn’t seem to be enough.

Given all of that, it is amazing to see Billy walking.  But he knows it’s good for him, so he keeps doing it.  When he takes his walk, the nurses smile.  Last night around 10:00pm, Billy announced that he wanted to take a walk.  It had been a long day, and he had slept for most of it, but he knew he needed to get up.  We all helped him get ready, and off he went.

Billy (right), out for a walk with Aunt Robin (white sweatshirt), our cousin Bryan (black hat, on the left), and Kelsey (just behind Bryan).

Some of the staff were talking at the nurses’ station.  As Billy walked by, conversation stopped, and people watched and grinned.  It was good to see Billy out of bed!  One of the nurses was quite animated.  She whipped out her cell phone camera and tried to take as many pictures of Billy as she could.  Billy smiled.  It was a joyful moment for all of us.

An excited nurse (in brown) and a smiling Billy.

Billy’s case is a tough one.  It’s hard for the medical staff to see someone so young facing something as difficult as this.  One of the custodians has even taken an interest in Billy, and she stops by every day to check on him.  When she sees us, she anxiously asks about him.  When she walks by his room and sees us watching a movie, she pokes her head in to say hello.  Everyone wants to see Billy beat this.

Medically Speaking
The nausea has been frustrating, and it has affected Billy’s ability to enjoy life.  He has begun taking medication for nausea, and that makes him sleepy.  Billy’s pain medication (dilaudid) can also make him sleepy, so the combination is a double whammy.

Billy’s team of oncologists has been doing some brainstorming to figure out why the nausea has increased.  Billy had an MRCP (a form of MRI) this week to look at his liver and gall bladder.  Unfortunately, the news isn’t great.  The liver and the gall bladder drain into the small bowel (intestine).  Because Billy’s small bowel is blocked, the liver and gall bladder aren’t able to drain as they should.  The byproducts of the liver and gall bladder are backing up in Billy’s body.  The oncologists suspect that’s why Billy is feeling more nauseous.

At this point, Billy is still ineligible for surgery to remove the blockage to his bowel.  (The surgery would be a huge undertaking for someone who was in prime health.  At this point, Billy is not very well nourished, and his body is in a weakened state.  Surgery would be very risky for Billy.)  So the oncologists have proposed a different solution:  to insert a percutaneous (“through the skin”) drain into Billy’s liver and/or gall bladder (on his right side), to drain the fluid that is backing up.  Billy thinks the procedure would be a good idea, so he will probably have a consultation with radiology on Monday (tomorrow).

At the same time, the MRCP also showed a pocket of fluid on Billy’s left side, just below his lung.  The nature of the fluid collection indicates that it is probably infected.  For now, the infection appears to be well-managed.  Billy is still on a major antibiotic (meropenem), and his vital signs (heart rate, blood pressure, and temperature) have been holding steady.  For now, the oncologists plan to leave the infected fluid alone.

Celebrating Life
When Billy is awake, we’re trying to make life fun.  We rejoice when he’s able to walk.  We laugh together at fun pictures and posters.  (Thanks, Aunt Robin and Bryan!)  We watch movies together.  And we enjoy the ornaments that people have sent.

Last night, we had fun opening some new ornaments.  I thought we’d share some with you.

Kelsey's Mr. McCotter Head

From a dear lady in Texas who has never stopped praying for us, and who keeps sending cards and messages. She heard about Billy from her friend, who heard about Billy from his friend, and that friend is a friend of Billy.

A favorite, from the LaBlue family.

More to come!  Thank you for the ornaments, and for celebrating Christmas with us.  And thank you for your prayers.

How to Pray

• For Billy’s liver.  It’s not working right or draining right.  Pray that the radiologists and oncologists would know what to do to help with Billy’s nausea.  And pray for a complication-free procedure to insert the drain.
• For Billy’s bowel.  The oncologists believe that the blockage is from Billy’s tumor.  Pray for the tumor to decrease, and for the blockage to release.  
• For Billy’s spirits.  This is a long, hard road.  Pray for endurance, and for Billy to feel loved and cared for.   Pray for God to meet the needs he has that he hasn’t shared out loud.   
• For our family.  This is a tough thing to face.  Pray for strength, courage, humility, and grace as we work together to care for Billy and for each other. 

Answered Prayers

Sometimes, I wonder if God is listening.  Other times, it seems foolish to doubt it.

Sunday was a particularly hard day for me.  Late in the afternoon, I was sitting by the window in the family room, watching traffic just beyond the gates.  I was crying and talking to God about life, wishing I could just have a hug.

A few moments later, I heard a voice.  "What's going on, girl?"  It was Adrienne, stopping in on her way from Ft. Rucker, AL, to be with her family in Pennsylvania.  Her dad has a brain tumor, and she's doing her best to help him fight it--and to support us in the meantime.

I looked at Adrienne and just cried.  She didn't say anything; she just grabbed me and hugged me.  It was just what I needed.

Sometimes, in this journey with Billy, I wonder if God is listening.  We've been praying God to heal the blockage in his intestines; we wanted Billy to be able to eat for Thanksgiving.  He didn't get to.

But then other times, it seems like God must be doing something.  I can see the ways we're being taken care of.  And some of the requests for Billy are being answered.  The pinch in his left side has subsided.  (Yeah!)  He had an ultrasound done on his left side, and the pockets of infected fluid are gone, so they were able to remove the catheter.  Those seem like signs of progress!

But the cancer remains, and the only thing the medical team can offer is herceptin.  We don't know how well that will work.  Herceptin isn't a big cancer-killer...not like chemo is.  Then again, chemo is super-destructive, and Billy's body can't handle all that.  So we basically need a miracle...lots of them, in fact.

Lately, Billy's bilirubin level in his liver has been creeping up.  Bilirubin is a yellow substance that results from a breakdown process in the body, and it is excreted through bile and urine.  It's also the substance that causes the yellow tinge in a bruise.  When the bilirubin level goes up, a person's skin can take on a yellow hue.

The doctors are thinking that the constant flow of IV nutrition (TPN) is negatively affecting the liver, so they're trying a different feeding schedule.  Once they started that new schedule (last week), however, Billy started feeling a bit more nauseous.  He used to be able to enjoy a variety of beverages (tea, juice, milkshakes, smoothies), but they seem to mess with his stomach now.  He's been coughing a lot, trying to get rid of the nauseous feeling.

So...would you pray for some of these specific things?

• The blockage in Billy's small bowel to release, so that his GI tract would work and he could drink some healthy things!  
• Nutrition...The best kind of nutrition comes from food.  TPN is not ideal, and it's not ideal long-term.  Pray that Billy's body gets the nutrition it needs to be healthy and fight cancer.
• Nausea...that it would go away.  (And that the coughing would go away too.)

More Items at Zazzle.com
In the spirit of our invitation to join in our Christmas ornament tradition, we thought we'd make the Ask Me About BILLY ornaments available for everyone.  Those have been newly posted on our store.

New Ornaments

Additionally, we thought we'd release an alternate design for the t-shirts and hoodies.  Instead of having text on both sides, these hoodies and shirts just have the blog logo and address on the front.  The back is plain.

New Hoodies

Thank you for all of your support!

Discoveries

It has been quite a week of ups and downs!

Monday was a hard day--difficult for us and difficult for Billy.  After weeks of small improvements every day, it was difficult to watch Billy struggle again.

Several weeks ago, Billy successfully completed a CT scan with contrast.  The whole process was amazing, really.  Being off of the NG suction is difficult for Billy.  The fluid backs up in his stomach and makes him nauseous.  Several weeks ago, despite that, Billy was off of NG suction for 7 hours!  He ingested 700mL of contrast and kept it in.  And the CT scan was successful.

On Monday night, after a rough day, a new NG tube, lots of nausea and some vomiting (sorry for the graphic detail), a CT scan with contrast seemed impossible.  Billy tried anyway, but it just wouldn't work.  His stomach refused to tolerate it.

They tried again on Tuesday.  Billy kept 100mL of the contrast in, but that was it.  It wasn't enough for a CT scan with contrast, but they took a scan anyway.

We were hoping the scan would show positive results:  a reduction in Billy's tumor and some large pockets of fluid that could be drained.

Even though Billy wasn't able to keep the contrast down, the scan was clear enough for the doctors to see what's going on.  Yesterday, we heard the results, and the results were mixed.  The scan showed four things:

1. The infection in his left side is smaller.  (The catheter is doing its job!)
2. There is no large pocket of fluid in his belly.  This raises a question:  why is his belly so "distended" (full)?  
3. There is more fluid under his left lung than under his right lung.  This raises another question:  why is his right side pinching so much?
4. The small bowel is more swollen that it was the last time, so they think it's probably obstructed.  A question remains:  what is causing the obstruction?

So what does all of this mean?  
It goes back to Billy's diagnosis.  Poorly differentiated gastric adenocarcinoma is an incredibly difficult condition to treat.  Scientists have made huge advances in cancer treatment over the years, but very little progress has been made in the realm of gastric cancer.  In patients who have Billy's particular version of gastric cancer, 3 types of chemotherapy are used together.  More recently, herceptin has been found to be effective when used in combination with the 3 kinds of chemotherapy.  However, herceptin, when used alone, has very little killing power.  It can slow the cancer, but it probably won't do much to kill it.

Why not use chemo and herceptin for Billy?
Simply put, Billy's body isn't strong enough for chemo.  Billy took one round of chemo in Miami, and it was very destructive.  Billy's body is too weak, and the chemo is too hard on the liver and the immune system for Billy to be able to tolerate it.

Those are the facts--or what we know to be the facts right now.  But in this world, things can change quickly.  Billy is doing well, but as we saw on Monday morning and again today, slight changes can make a whole day feel hard.  When the NG tube gets blocked up, Billy feels nauseous, and the activity in the room becomes about clearing the blocked NG tube.  When his side pinches, conversation stops as he gets his pain under control.  Billy was all set to go outside today (the first time since he arrived on October 6), but his side pinched too much during his morning walk--and the focus on the day became about getting his pain under control.  All of us--the doctors, the nurses, and his family and friends--are doing as much as we can to take care of Billy.

But we're starting to come across questions we can't answer.  The doctors don't know why Billy's right side is pinching.  It doesn't seem to be the liver or the gall bladder.  The doctors think it's from pressure further down his side, from inflammation caused by the cancer.  There's very little room in his belly for the fluid to build up anymore, and hence there are no pockets of fluid they can drain.

At this point, there aren't any drastic measures that we can undertake to fight Billy's cancer.  We can do things to improve Billy's quality of life, and that's where the doctors are focusing their efforts.  There's plenty of pain medicine, and a lot of different options.  There's benadryl for the incessantly itchy skin.  Herceptin is an antibody that is generally well-tolerated, so Billy can keep taking that as long as his heart stays healthy.  But outside of a miracle, the cancer will eventually win.

It was hard to type that last sentence, and thinking of publishing it makes the tears come.  It's not something we ever expected to face.

So in the meantime, in the limited time we have, we're trying to savor every day we have.  Every day we have is a miracle.  I'm treasuring the time I get to spend with Billy and with my family.  And I'm discovering some of the things that make us who we are...

• This September, my parents and I went to Fort Rucker, AL, for his graduation from flight school.  On the morning of graduation, my dad handed me a box.  "That's from Billy for you to wear to the graduation," he said.  It was a necklace.  A set of wings.  Billy had two of them made--one for me and one for my mom.  

Billy's graduation gift for me.

When I saw Billy later, I asked him about it.  "It's your graduation, silly," I said.  "I'm supposed to be buying you a gift!"  He disagreed.  "You came to visit me," he said.  "And that's enough."  That's Billy for you--always a giver.

• I went in the family room last night to wash the crock pot after I had made chili.  (Thank you for the ingredients, Sara!)  All the dishes had been washed.  I asked Bobby and Danny about it, and all evidence pointed to my mom.  She's so sneaky sometimes!  

• Several weeks ago, my mom and I had gone to get massages at a local spa, courtesy of Walter Reed.  I was supposed to have a pedicure that day, but something got messed up, and I wasn't on the schedule.  So my mom decided to give me a pedicure last night, and it was awesome!  

A pedicure...just because my mom wanted to give me one!

• Yesterday, my mom went to Dunkin Donuts to get my favorite coffee.  Later that morning, as I was drinking my coffee, Bobby and Danny showed up for the family meeting.  Bobby was carrying a cup of coffee.  He extended the cup, saying "This is for you, 'Chelle."  He had made coffee in the French press, and added sugar-free hazelnut and half-and-half, just the way I like it.  I didn't know what to do with 2 cups of strong coffee--but I felt incredibly blessed and loved.

We're a family of givers, and I love it.

Ways to Pray

• For miracles.  For the impossible.  For us to continue to be hopeful.  
• For special moments as family and friends.
• For endurance in this journey that has no definitive timeline.
• For the pain in Billy's side to dissipate.
• For Billy to be able to go outside.  
• For Billy to be able to celebrate Thanksgiving.

Thanks for everything! For the friendship, hugs, notes, groceries, money, encouragement, prayers... We could not do this without all of you!

Difficult Days

As we walk this journey, I'm learning that some days are harder than others.

On Saturday evening, a bunch of us were hanging out with Billy.  We were watching T.V., laughing, and telling stories.  But I was having trouble joining in:  something wasn't quite right with Billy.  I looked across the room and made eye contact with Sam (one of Billy's friends who was visiting for the weekend).  I could tell that she was concerned too.  We had both noticed Billy struggling.  I asked him how he was doing.  He said he felt a bit nauseous, like the NG tube wasn't working quite right.  Eventually, he was able to overcome the feeling of nausea...but he still didn't feel all that great.

Yesterday (Sunday), Billy started feeling a sharp pinch under his right lung.  Every time he took a deep breath, he felt a pinch.  He said it seemed like some of the fluid in his belly was starting to accumulate under his lung.  It made breathing difficult, and it hurt.

Billy didn't sleep well last night, and this morning was worse.  We found out that Billy's NG tube had come out too far, so it wasn't working like it should.  The doctors tried--without success--to push it back in place, so they had to replace it.  The new tube is stiff and uncomfortable, and Billy's throat hurts so much he can't really talk.  The doctors are concerned about the pressure on his lung, so they want to take some "pictures" of what's going on inside his body.  Tonight, they planned to do another CT scan with contrast, meaning Billy's NG tube would be clamped off for several hours so that he could drink the "contrast" (dye).  Once he finished the contrast, he'd have to wait a few hours, and then go downstairs for the CT scan.  He had a scan with contrast done 3 weeks ago, and it took 7 hours.  3 weeks ago, those 7 hours felt like a long time.  Tonight, 7 hours without NG suction seemed like it would last forever.

What is a CT Scan?
CT scans can be done with or without contrast.  They give doctors a detailed image of the inside of the body; it's far more detailed than an x-ray.  When the scan is done "with contrast," it sharpens the images of the structures inside the body.

Billy's CT Scan
Billy tried to ingest the contrast, but it didn't work.  He couldn't keep the liquid down.  He was miserable and in a lot of pain.  It's just not going to work to do a scan with contrast today.  Billy is sleeping now (thankfully!), and they're going to try to do the scan again tomorrow.

What About Draining the Fluid?
The doctors need to see where the fluid is before they can drain it.  The scan will give them the images they need, so they can determine how--and if--the fluid can be drained.

When Will We Know If the Herceptin Worked?
It takes a few weeks for herceptin to have its effect.  It has been 5 days.  So we should know something in another 2 weeks or so.

How to Pray

• A restful night for Billy.
• That Billy would be able to tolerate the CT scan.
• That the doctors would be able to determine the source of Billy's pain, and that they would be able to help him.  
• That Billy's body would get rid of the excess fluid, or that the doctors would be able to get a clear enough image so that they could drain the fluid.
• Billy's stomach and intestines to start working, so that he could enjoy some of his Thanksgiving favorites.

Thank you for your support and your prayers.

Camaraderie

I’m just a civilian, but from what I understand, Billy’s journey in the army is fairly commendable.  In December 2002, Billy enlisted in the army as a private first class (E3, toward the bottom of the army's ranking system).  After completing two deployments (Iraq and Afghanistan), he spent several years in the Old Guard in Washington D.C.  After a while, he decided to go to flight school to become an army pilot.  By April 2009, he finished Warrant Officer Training School, and was promoted to WO1.  From what I understand, becoming a Warrant Officer by the age of 24 is fairly uncommon.  But then again (and Billy’s friends would all agree), Billy’s not a common kind of guy.

Billy completed his aviation schooling in mid-August this year.  He completed a PT test around the same time, and officially graduated from flight school on September 2, 2010.  He’s officially a Blackhawk pilot.

Billy showing my mom the controls inside one of the older Blackhawks at Fort Rucker.

As my parents and I spent time with him in AL for his graduation, we often heard soldiers asking each other, “So where are you headed now?”  Army soldiers and members of the National Guard come to Fort Rucker for aviation training, and then get sent out again.  Some return home to places like New York or North Dakota.  And others get sent out to new places.  When people asked Billy where he was headed, he’d smile and answer, “Hawaii.”  As one might expect, it was an enviable assignment. We all joked about needing to plan a trip to see him.  It was a good excuse for a tropical vacation.

When news of Billy’s diagnosis hit Fort Rucker, people were shocked.  The word spread quickly, and people rallied together to show their support.  Captain Barnes and Major Smith called my mom and spent time trying to work out plans to get Billy to Walter Reed Army Medical Center in Washington D.C.  One of Billy’s flight instructors would call me almost daily to get an update on “Mac.”  No one expected something like this, and people worked to do whatever they could to support Billy.

I can see that my family’s presence is good for Billy.  He looks forward to spending time with us, talking, watching movies, and just hanging out.  But there’s something different that happens when army guys come in the room.  Friends from the army provide a kind of support and camaraderie that family doesn’t have.  Army support has been a key piece in Billy’s fight against cancer.

Just this past week, he received a HUGE care package from a whole slew of people at Fort Rucker.  I’d love to give credit to all of the contributors—but I don’t know who all of them are.  In the box were t-shirts, hats, an American flag, medals, and a letter.  I watched Billy’s face as we hung things up around the room, and I could tell he appreciated the gifts.  The box spoke volumes.

Sometimes they call it "Mother Rucker."

My favorite hat from Fort Rucker.

A very special American flag, and a letter that explains it.  That story to come later...

Many of the soldiers at Fort Rucker now don’t know Billy.  Fort Rucker—for most—isn’t an army destination.  It’s like college—a place a soldier goes for training to prepare him for army assignments elsewhere.  But the soldiers who are now in training at Fort Rucker wanted to show their support for one of their own, so they dedicated an early-morning PT session to Billy.  Last Friday, they gathered early (I don’t know what time exactly, but it was dark!) to run in Billy’s honor.  Here's an article about the run.

The banner from the run.

An early morning start!

Running Together

Finished!

A video from last Friday's run. (Edited by my brother, Bobby.)

Thank you to everyone who has shown their support.  My family greatly appreciates it, and I know it is helping Billy to fight hard.  I know what I’m about to ask might seem impossible, but please join us in praying that he’ll be able to fly high again.

On the Matter of Prayer
On the subject of prayer, amazing things have been happening!  I sent out a quick message yesterday afternoon, asking people to pray...

They want to do a CAT scan (with contrast) today. It requires inserting dye into his body, which means turning off the NG suction for 2 hours. (This will be very difficult because of the fluid that builds in his belly & makes him nauseous.) Pray for God's protection, for his body to tolerate the dye, & for his belly to be calm through the whole procedure. Pray for a successful scan! Thanks!

Billy's stomach has not been working for over a month.  That's why he has the NG tube.  It pumps the extra fluid from his stomach, so that he doesn't get nauseous.  Throwing up all the time isn't good for his esophagus.

When I heard about the CAT scan, I got a little nervous.  Thus far, Billy hadn't done well when the NG tube wasn't pumping.  Too much time without suction would be miserable.  I wasn't sure he'd make it.  To make matters more intense, Billy would have to ingest 600mL of contrast--and keep it down--until the CAT scan was over.  It seemed impossible!

So that's why I sent out the message.

And late last night, I sent out an update...

Guess what! There was a miracle!  Billy was able to keep all of the liquid in. No nausea! They stopped the NG tube at 5pm, and started him on the contrast fluid. He finally got enough in him by 9:45pm, and they took him down for a CAT scan at 11:15pm. We were back in his room by midnight. 7 hours! I was amazed...seriously. Thank you so much for praying! 

I'm seeing evidence that prayer works.

We got the results of the CAT scan this morning, and I'm even more amazed.

Several weeks ago, when Billy was septic, the doctors told us that it was no longer possible to remove the fluid in his abdomen without an invasive surgery.  The reason was that the fluid was in thick little pockets all over the place, rather than one large collection like before.  Making several punctures all over his abdomen would have been fairly traumatic--as would a massive surgery to "rinse out" his belly.  It seemed like there were no options.

So my mom started praying that the little fluid pockets would all come together.

Guess what!  The CAT scan showed a large pocket of fluid on his left side, near the place where the surgical team made the incision last Saturday.  That means that Billy could have a far less invasive procedure done to drain the large pocket of fluid!  The surgeons plan to take him for surgery sometime today to insert a catheter to drain the fluid.  It's probably infected, and antibiotics probably aren't going to take care of it, so a catheter seems like the best option.

Meanwhile, Billy went for a walk a few days ago, and he went even farther today.  He told my mom that every time he walks, he feels stronger!

His will to live and his will to fight are inspiring.  I am honored to have him as my brother, and I am grateful to everyone who is supporting us and praying for us.  Thank you so much!

Ways to Pray

• God to stop the cancer in its tracks--that despite what modern medicine says the odds are, Billy would be able to beat this!
• Billy to be able to fly again
• Steady hands for the surgeons as they insert the catheter, with no complications
• Billy's body not to need antibiotics anymore (they're stopping one more of the antibiotics today)
• Perseverance and good health for my family as we work to support and care for Billy
• Creativity in battling the boredom associated with being stuck in a hospital bed!

Thanks for praying!

Hurry Up! ...and Wait...

We got to the hospital around 11:30am today (Friday), and Billy was conked out.  Actually, he was wiped out for most of the day.  It turns out that there were a few issues last night—a blood clot in his port, waiting on doctors for orders for the anti-coagulant, and waiting for the anti-coagulant to kick in so the clot would go away.  It meant halting the flow of the chemo for a while, and then starting it up again.  Needless to say, Billy didn’t sleep much last night, so he was extra-sleepy today.

In the middle of all of this, we’re all getting tired—or maybe it’s just me.    When I’m tired, frustrating things seem even more frustrating, and funny comments make me laugh for a long time.  There were a few humorous moments today.  I’m going to attempt to capture them—but it’s hard to deliver the punch line well when so much of the humor comes from facial expressions and voice inflections.

Earlier this afternoon, one of the nurses was in the room, trying to help us figure out why the bottoms of Billy’s feet were a particular color.  He had just gotten back from a walk (yay!), and the bottoms of his feet were a dark reddish purple.  “I think it’s the chemo,” the nurse said.  “He’s on ‘something’ and ‘such-and-such’ and 5FU…”  In the middle her sentence, Billy interrupted.  “Wait.  What’d you call me?”  It took the nurse a minute, and then she realized he was messing with her.  In the middle of serious situations, his wit comes out, and everyone laughs. 

The conversation continued.  “There’s a side effect of chemo,” the nurse said.  “It’s called hand and foot.”  Again, Billy interrupted.  “So you’re telling me I’m going to get mad cow disease?”  Again, we laughed.  He delivers his jokes with such dead-pan humor.  His face says he’s completely serious.  There’s no hint of a smile.  He delivers the joke.  It takes us a minute.  We all laugh, and his face turns up in a grin.

Billy, on a walk with army buddies Trevor (left) and Chris (right).

At the same time, the day was a bit frustrating.  Billy still isn’t able to keep liquids down, so the medical team wants to figure out if there are any blockages in his GI tract.  They want to do an MRI.  However, MRIs use magnets to produce images, so if there is any metal in a patient’s body, an MRI isn’t a good idea.  Billy got hit with some shrapnel during the war in Iraq, so he did have some metal in his body for a while.  He thinks it’s all out now, but the physician wants to make sure before we get an MRI.  So we need x-rays.

As preparations were being made for those things, we started to notice some swelling in Billy’s right leg and foot.  The nurses were concerned about a blood clot, so they sent Billy down to the 3^rd floor for an ultrasound.  The procedure felt like it took forever.  I think they took him downstairs at 7pm.  He didn’t come back until 9:30 or so.  And that was just the ultrasound.  He still had the x-rays and MRI to have done.

I’ll spare you all the details.  The summary is:  the process was utterly frustrating.  I think we’re all getting tired (Billy especially), and the inefficiency of things sometimes feels like too much.  Tonight, Billy was really tired.  And he had to wait for 30-45 minutes for a nurse to come and move all of his machines from the transport rack to the “Christmas tree” (the rolling stand that holds the IVs), so he could lay down and go to sleep.  We finally said good night to him around 12:30am.  And he still hadn’t had his x-rays (though the nurse said that the x-ray tech would be coming tonight to take the pictures).  Frustrating.  Especially when you’re really tired, you have a tube down your throat, and there’s lots of stuff blocking your throat.

Update on Moving
We’re still working on moving to Walter Reed—but there are no conclusive plans yet.  It sounds like we won’t be moving this weekend.  Hopefully, it will happen early next week.  We’ll keep you posted.

Some Ways to Pray

• The first round of chemo is done!  Pray for it to knock out a lot of the cancer.
• An efficient transfer to Walter Reed.  Also, that Billy’s body would handle the move well and not be too drained.
• A place for my family to stay near the hospital in D.C. (assuming we go to Walter Reed).
• Billy has an NG (Nasal Gastric) tube in his nose and down his throat.  It helps to deal with his nausea, and the fluid building up in his stomach.  However, the tube doesn’t seem to be working right.  It causes a lot of discomfort, and makes breathing difficult at times.  Pray that we’d figure out what’s wrong, and that the tube/suction would start working right. 
• Rest and good health.  It’s hard to rest.  There’s a lot going on.  But we’re all tired.  Billy needs us to be healthy, because the chemo is going to attack his white blood cells (as well as the cancer), and we need to be healthy when we’re around him. 
• That Billy’s intestines/bowels would start working again—and that he’d eventually be able to eat food again. 

Thanks again for your prayers!

What a Day!

Phew!  What a day...  It's amazing how so much can happen in one day, and yet it feels like an eternity.  The time crawls and flies at the same time.  We have good news to share!  Billy was moved from the ICU to the 5th floor tower today (the floor where cancer patients are treated).  It's a good move.  It's calmer up here, and he's sleeping really well right now (it's 12:00am as I write this).  His sleep seems deeper and more rested than it had been in the ICU--where there was always light and more noise.

It's nice to be on the 5th floor.  The cell signal is stronger, and Billy can receive texts and messages in the room.  We're also able to be in the room and get messages and texts.  It feels a lot less like a cave, less detached from the outside world.  There's sunlight too.  Billy hasn't said anything about liking his large window--but it's nice for the rest of us.  :-)

If you'd like to send mail, we have an address for you!

Will McCotter
8900 N. Kendall Dr.
5 Tower Room 5220
Miami, FL 33176

There were lots of visitors today!

• Trevor (a buddy from the Old Guard in D.C. who now lives in FL)
• Kelsey (a friend from D.C.)
• Nate (all the way from Germany, and he really surprised Billy!  I got to meet Nate and Melissa in April 2009, when we were in AL for Billy's promotion to Warrant Officer; it's really nice to see him again!)
• Uncle Paul
• Melissa
• Judy and Doug (Melissa's Parents)
• Pastor Matthias (Tyler and Melissa's pastor)
• Jill (Billy's and my mom)
• me :-)

And thanks to some amazing "support staff" who have helped us with anything we've needed.  We haven't had to worry about leaving the hospital at all.  They've brought us books, chapstick, food...anything we've needed...

• Adrienne (from AL)
• Laurie (Melissa's sister)

So how is Billy?
He's hanging in there...trying to "get through," as he says.  The move from the ICU was difficult and tiring.  Also, it's been an ongoing effort to get the pain medication dose right.  He's taking a painkiller that's 8x stronger than morphine.  His pain is never really fully gone, but it disappears enough for him to sleep.  About 45 - 60 minutes later, he wakes up and asks for another dose.  He's alert for a bit as the pain increases.  Then a nurse comes to give him another dose.  He drinks some water, and he's out again.

In the past few days, he had been throwing up a lot.  Every time anything went down, it would come up within 10 minutes.  This morning when we came in, Billy had a drainage tube in his nose.  It goes down his throat, and pumps out liquid from his stomach.  Whenever Billy drinks water, the liquid in the tube changes from dark green to clear.  In other words, whatever Billy ingests comes right back out.  He's still not getting any nutrition, because the cancer is so strong, and his stomach is under huge duress.

New Treatment
So with that in mind, Billy has decided to start chemo.  He knows it's a poison in his body, but he doesn't see any other choice.  We're hoping that the chemo will halt the cancer enough so that Billy can start holding onto nutrition.  Pray that it works!  We're also giving Billy some supplements that we're hoping will help him to heal.  Pray that his body absorbs things, even if the nutrition is in his stomach for only a few seconds or minutes.

I have so many thoughts and questions these days.  There's so much to read and research, to try to figure out what's best.  It's hard to process it all.  During some moments, it's really fun to have everyone together.  The picture below was taken soon after Nate and Kelsey arrived.


From the left:  Melissa, Kelsey, Nate, Jill (Mom), Doug Lyew-Ayee, and Billy


(Note:  People always ask about the "leg things"...they're compression cuffs that help keep his blood circulating and prevent blood clots in his legs.)

At that point, the room was full of energy, and Billy seemed pretty excited to see everyone.  Even though the pain medication makes him tired, he fought to stay awake to be with people.  After he slept, we would all tallk and hang out.  It's good time to be together.

But then moments come that are harder.  I remember that we're in a hospital, and Billy is lying there in a bed with tubes and wires all over him.  I remember that there's a horrible disease inside trying to take his life.  Then, it gets hard.  When my mom told me his diagnosis last Thursday, the world seemed to come to a halt.  The only word I could say was, "No!"  And I couldn't seem to believe that it was possible for him to have such a thing.  Being here, I have something to do.  I try to help the nurses as much as I can.  And when Billy needs water, chap stick, his cell phone, anything...I try to be on top of it.  The past three days have been filled with looking out for him.  I'm so focused on that, I forget that life last Wednesday wasn't like this.

In thinking about the future, life feels hard.  Billy's situation isn't good.  Yes, he has made some progress.  I think we've found a pain manament regimen that's working.  The anti-nausea medication finally seems to be helping.  And he seems to be resting well tonight.  But he still can't keep anything down, and that's the serious part.  He NEEDS nutrition if his body is going to heal.  He NEEDS nutrition in order to be moved anywhere (and we still don't know where) to receive further treatment.  But in order to get nutrition, his stomach has to stop revolting.  We're starting chemo tomorrow, hoping that will work.  Please pray for it to work!  And not just to work, but to work quickly and effectively.  Pray for it to knock out as much cancer as possible, so that his body can hold onto healthy food!

Thanks again for all the prayers and support.

Oh, and one more thing I almost forgot!  We have a way for you to help, if you want. Krystian is trying to get together a care package for Billy, and he's putting together a digital picture frame. Could you dig up whatever pictures you'd like to include and send them to msmarcy1223@aol.com? He needs them by 9pm CST on Wednesday, September 29. Thanks!!!