Christmas Surprises

If someone were to ask us to name the things our family values most, I think time spent together would be near the top of the list.  I can’t speak for everyone, but I’m starting to notice that quite of few of us like orchestrating surprises for the people we love.   It’s not just our immediate family either; it seems to go back a few generations.  

As we’ve spent time together over the past weeks and months, I’ve enjoyed hearing stories of surprises people have pulled together.  My Uncle Jack requested that we share the story of the Christmas surprise from 1981.  As I was less than a year old at the time, I decided to ask my mom and my Aunt Robin to share what they remembered.

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From Jill (My Mom)
In October 1977, my Mom underwent open heart surgery and received  a valve replacement.  In December of that same year, my Dad had a stroke which resulted in the removal of a blood clot at the base of his brain.  Needless to say, my parents didn't travel much.  Unfortunately, they were not present at the birth of our first child, Michelle (February 1981).

Shortly after Thanksgiving 1981, I received a phone call from my sister Robin.  She and my brother Jack were offering to pay our way home for Christmas.  I hadn't been home in over two years, and my family had yet to see Michelle.

So the day before Christmas, my husband Mike, Michelle (10 1/2 months old) and I flew from Durango, Colorado, to Lexington, Massachusetts.  Our son Chris was "in the making." (He was born on my Mom's birthday:  March 1, 1982).

We snuck into the house and strategically placed ourselves in front of the Christmas tree.  My parents and my sister Chrissy were both surprised and overjoyed.  It was an awesome Christmas present for Mom, Dad, and Chrissy.

Thanks again and again, Robin and Jack!   

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From Aunt Robin
For us, Christmas is all about spending special times together.

In the fall of 1981, Jack and I started planning a special Christmas surprise for the family.  Together we paid for Jill, Mike, and Michelle McCotter to fly to Boston for the holidays.  But we didn't tell anyone what we were scheming! 

The McCotter Family: Mike, Jill, and Michelle

A day or two before Christmas, the snow was falling, and it was already getting dark.  Jack and I were headed out to go "shopping."  I was surprised that no one questioned us, as we had never shopped together before, and it wasn't like Jack to start Christmas shopping any earlier than Christmas Eve!  The important thing is that we got away with our story.  


I'll never forget the trip to the airport.  We were so excited to see all our plans come to fruition!  We picked up our “gifts” (remember, we were “shopping”) at the airport and proceeded home.  Jack went in the kitchen door as Jill, Mike, Michelle and I snuck in the living room door.  (This was a first as we never used that door!)  Michelle was placed under the Christmas tree as Jill and Mike sat on the couch.  

Jack was able to usher Mom and Dad into the living room.  I remember them both at the top of the three stairs…  Mom had her mouth open for about ten minutes.  Dad had the most wonderful look on his face.  It was priceless.  I cried—as I often do, even during happy times. 

The Williams Family Christmas Tree where we placed Michelle.

Dad on Christmas morning, 1981.

The Christmas Tree after opening gifts.

The days we spent together were full of laughter and fun.  Paul had come down from Maine.  Chrissy was home from UVM for Winter break.  It was wonderful.  Michelle's favorite gift from Santa was her Big Mouth Singers.  They would make her “belly laugh,” which, in turn, made the rest of us laugh.  It was such a special week.  As always, it was hard to say goodbye. 

Paul and Jill watching Michelle as she played with her Big Mouth Singers. (I wish I could find the picture of Michelle!)

Big Mouth Singers

Michelle loved being thrown up in the air by her dad. It almost gave me (Aunt Robin) a heart attack!

A few days after the McCotters had returned home to Colorado, Jack and I received a letter from Dad.  He thanked us each for the greatest gift he had ever received.  He thought Michelle was such a beautiful baby girl and he was so thrilled to be able to spend time with her and with Jill and Mike, too.  It was the nicest note I ever received from my dad.  In the note he said it was a Christmas he would never forget.  He was right.

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Mom and Aunt Robin:  Thank you for telling the story again for all of us!  Aunt Robin:  Thank you for the pictures, too.

So How is Billy?
He’s amazing, really.  He seldom complains—though I can usually tell from his face when things are hard.  We have difficult conversations with the doctors, and he just takes them as they come.  It’s not like he doesn’t feel how hard this is; he just doesn’t complain about it.  He tries to make the best decision he can, given the options he has.  And he’s grateful for every day he can spend with family and friends.

As we talked with the oncologists earlier this week (and what a week it was!), he said that some of the most important things for him and this point in his life are to spend time with family and friends.  We’re trying to do that as much as we can.

The medical side of things, though, makes this a bit more challenging.  Billy’s pain has gone up quite a bit.  The doctors can’t figure out and clear reason why, so they think it’s probably because his body has become more tolerant of the dilaudid.  (For those who are curious, the PCA works a lot like my insulin pump.  The basal is supposed to cover is base pain needs; and the bolus should handle the “spikes”.  If the PCA is well-adjusted, the basal dose helps round out the “spikes,” so they’re not so intense.  Billy’s decision to keep increasing the basal indicates that the base level of pain has increased.)

Every Monday and Thursday, the nurses draw blood for Billy’s labs.  This week, we heard some difficult news.  The bilirubin level (in the liver) is continuing to rise, indicating that his liver is working less and less like it should.  He also had an increase in his white blood cell count this week (normal is 4-10; he's at 11+), which is either from an infection in his blood stream or from the cancer itself.  The doctors are running more tests, and we will know by the end of the week whether Billy has a blood infection.  If it is an infection, Billy can receive antibiotics to treat it.  If not, it’s hard to say what could be done.

Billy has also had 2 major nosebleeds this week.  Both have interfered with his NG tube, and both have required the attention of nurses and doctors.  We don’t really know why they’re happening.  I only mention it, so you know more how to pray.

So given all of this, we’re taking one day at a time, and we’re trying to spend as much time together as we can.  That time looks different now than it did two weeks ago.  Billy is much sleepier now; he seldom makes it through a full movie.  Time together looks different than it did six weeks ago, when Billy had a lot more energy to go for walks and joke around with family and friends, and when he and Bobby ganged up on me in the gun fight.  Now, he misses lots of phone calls simply because he’s sleeping when his phone buzzes.  But time also looks really different than it did nine weeks ago, when Billy was in the ICU with a septic infection.  We’re grateful for any time we get to spend together—and even though Billy’s health seems to be “headed in the wrong direction,” as the doctors put it, we’re still hoping for miracles.

Thank you for your encouragement and your prayers!

Billy's Christmas Tree

I know many of you are curious to know what kinds of things we have decorating Billy's tree, so I thought I'd share some photos.

From the LaBlues

Blackhawk Helicopter (Ft. Rucker) (From Wes & Adrienne)

Boston Red Sox Snowman (From the Stanvicks)

A Soldier Named Billy (From the Stanvicks)

"Mr. McCotter Head" (From Kelsey)

A Grill (From Kelsey)

Holiday Wishes (From the LaBlues)

Snowflake (From Michael and Karen)

From Bonnie and Steve

Freedom Star (From the LaBlues)

Texas HUGS (From Alice)

Anasazi Ladder (From the Clarks)

USA Nutcracker (From Aunt Linda)

Flying High (From Uncle Paul)

Weimaraner Puppy (From Mike and Kristie)

Patriotic Christmas Garland (From the Stanvicks)

Weimaraner Puppy for Christmas! (From Mike and Kristie)

A Hippopotamus Ballerina (From Aunt Robin)

Flying High & Fighting Hard (From Our Family)

Ask Me About BILLY (From Our Family)

The Christmas Tree

Thank you to everyone who has sent ornaments!  Billy has enjoyed opening them, and they've brought many stories and smiles.  Thanks for helping us to celebrate Christmas!

How is Billy?
He has been in a lot more pain recently, and the oncologists haven't been able to figure out why.  Billy had an ultrasound and a CT scan this past week, and neither have showed any reason for the increased pain.  His small bowel seems to be about the same.  The blockage is the same.  He doesn't have a lot of new swelling.  So they're thinking that Billy is probably becoming resistant to dilaudid (the pain medication he has been on since September).  They've increased the dilaudid for now to try to address the increased pain, and they're thinking about trying other pain medications in the future.

At this point, Billy sleeps a lot.  He seems to be sleeping more since they increased the dilaudid a couple of days ago.  Even with his increased drowsiness, he still gets up for almost-daily walks, and he still likes to watch movies with us in the evenings--though he falls asleep a few times before we get to the end.

It's movie time now...so I'm going to go.  But before I do, here are a few things you can pray for...

How to Pray

• For Billy's Liver and Small Bowel.  His bilirubin has been increasing.  The blockage in Billy's small bowel is taking its toll on his liver.  Pray for his liver to hold up, for the bilirubin to go back down, and for the blockage in his small bowel to release.
• Pain Management.  Pray that the doctors would be able to figure out a pain management regimen that works really well for Billy--one that addresses his pain effectively but also allows him to stay awake and interact with family and friends.
• Family Time.  Pray that we'd have good time together as a family as Christmas approaches.  When we heard about Billy's diagnosis, I told God I wanted one more Christmas with Billy.  Just one.  And that's all I want this year.  

Thank you for praying.

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!

Fun Surprises!

Life has been a lot more fun over the past week or so.  Things are still a bit unfamiliar, and life is very different than it had been—but now that Billy’s infection is somewhat under control, daily life seems a lot less heavy.

Saturday was a great day!

Bobby, Danny, and I got up around 9:00am to do some “corporate exercise” (as Bobby called it), and then we went for a run.  We washed up and prepared to meet my mom and our friend, Melissa, for lunch in the courtyard.  (Every weekend, there has been some kind of free catered lunch for everyone “on post.”  This week, there was all kinds of German food for Oktoberfest.)

As I sat down to eat, my mom came up to the table, and someone covered my eyes from behind.  I felt the hands…definitely a woman’s hands.  They were small.  Smooth skin.  A ring on the right hand.  None on the left.  “She’s definitely not married,” I said.  Everyone laughed.  I had a suspicion in my mind, but immediately dismissed it.  It couldn’t be Sara…but it was!  My room mate, coworker, and friend—Sara—had driven down to visit me from State College.  I LOVE surprises—and few people ever manage to pull them off for me.  But somehow Sara does—and she gets my family to help her do it.

(She met Billy through facebook last February when she was trying to figure out the recipe for my traditional birthday dessert.  And my mom had known since Wednesday that Sara was planning on coming!  Those three are so sneaky!)

We all finished lunch, and then Sara and I headed to our rooms to drop off some mail she had brought for me.  I started to show her around, and then I realized she had already been there!  On the bed was a turquoise-colored bin, full of some of my things.

Evidence that someone had been in my room...

I turned to put some leftovers from lunch in the fridge, and I saw more evidence.  It had been nearly empty earlier that morning, and now it was fully stocked!  I was blown away.

A fully-stocked fridge.

“What in the world?” I asked, confused.  “Your mom helped me load the fridge earlier,” she said with a smile, clearly pleased that her surprise had worked so well.  But she wasn’t done with the show-and-tell.  “I know you haven’t been able to cook here,” she said, “so I brought you a few things.”

But before you’ll understand how amazing all of this is, I need to share a little more about myself.

On August 20, 1993, I was diagnosed with type 1 diabetes.  I had gone to the doctor’s office for a sports physical for 7^th grade volleyball, and we found out that day that there were tons of large ketones in my urine, and my blood sugar was 732mg/dL.  (Normal is around 80mg/dL.)  I was admitted to the hospital that afternoon.

It’s amazing how a diagnosis can change everything. 

It’s hard to explain all the ways that diabetes has affected my life.  I don’t let it limit me from living life as fully as I can—but it certainly makes life more challenging.  I try to eat carefully, to exercise daily, and to keep my blood sugars in my target range as much as possible.  It requires a lot of time, effort, resources, and perseverance—among other things.

In type 1 diabetes, something crazy happens in the immune system.  For some reason, the body decides that the pancreas—or, rather, the cells in the pancreas—are the enemy.  It’s the job of the immune system to kill enemy objects in the body, and so the immune system attacks some of the cells in the pancreas.  Those cells make insulin.  When I was diagnosed with type 1 diabetes in 1993, it meant that my body would eventually no longer be able to make any insulin.

Why does insulin matter?  Well, when you eat, the food gets broken down into sugar.  The digestive system places the sugar in the blood stream.  Insulin allows the sugar to pass from the blood to the muscles, so that the body has energy.  Without insulin, the sugar stays in the blood, and the muscles starve.  The muscle tells the liver, “Hey, we need more energy!”  So the liver says, “Right, I’m on that,” and starts breaking down fat and turning it into sugar.  The sugar goes into the blood, and the liver thinks it’s done.  But there’s no insulin.  So the muscles repeat their message.  The liver breaks down more fat.  And the blood sugar continues to rise.

That’s why, on August 20, 1993, my blood sugar was 732mg/dL.  It’s why my body had lost so much weight (20 or so pounds over 2-3 weeks).  I was a very sick kid.

To deal with this situation, a person with type 1 diabetes takes insulin.  And checks her blood sugar level often.  And exercises.  And watches the kinds of foods she eats.  And drinks water.  And takes vitamins.  And does any of the 50 other things that people with diabetes do to be healthy.  It’s a daily job, and it’s a big job.

Eye damage.  Kidney damage.  Damage to the circulatory system.  Heart problems.  Gangrene.  Amputations.   It’s not good.  Every time the blood sugar goes too high, it can cause damage.  And low blood sugars can be dangerous.

Lots of things affect the blood sugar.  Exercise can make it go down.  Food makes it go up.  Different kinds of food affect the blood sugar in different ways.  Insulin makes the blood sugar go down.  It’s a crazy balancing act.

Usually, I check my blood sugar often.  To control my levels, I take a certain amount of insulin, based on the carbohydrates I eat.  So to take an accurate dose, I count the carbohydrates I eat.  Often, I weigh my food on a scale, or measure it with a measuring cup.  If I can’t measure, I have to guess.  Sometimes I’m right; sometimes I’m wrong.  Some foods are easy to guess—like green vegetables.  And some foods are really tough, like breaded chicken tenders or pizza.

Here at Walter Reed, we have a place to stay, but it’s sort of like a hotel.  We don’t have a kitchen, so we eat in the cafeteria most of the time.  (And the cafeteria has lots of foods like breaded chicken tenders and pizza.)  That means lots of guessing for me.  Also, unfortunately, the cafeteria food here isn’t all that healthy.  Ironically, the hospital cafeteria food can make controlling my blood sugar really difficult. 

And all of this is what makes Sara’s surprise for me so amazing.

Before she came, she spent hours and hours cooking for me...

• She made my special kind of pasta and measured out individual portions.  Then, she put each serving in a baggie, and labeled each bag with the nutrition facts.

Barilla Plus Pasta (Made from Beans!), divided into 2oz Portions, each in its own baggie--and all in a big bag with the nutrition facts written on it!

• She made spinach and beef enchiladas on low carb tortillas (my favorites!), and wrapped each one in its own Ziploc baggie.
• She bought me two containers of FAGE  Greek yogurt, because that’s what I usually eat for breakfast every day. 
• Because veggies are so easy for me to guess on, and because they’re so good for me, I’ve learned to cook them in all sorts of fun ways.  I love to eat them!  And I love to teach people how to cook them.  This past year, I introduced Sara to roasted veggies, and she loves them that way.  So guess what!  She roasted a bunch of veggies and packed them in bags for me!
• And…she got everything together so that we could make some my favorite slow-cooker chili recipe.  I already had the slow cooker with me.  She brought kidney beans, canned tomatoes, tomato sauce, a can opener, containers of spices, measuring spoons, diced peppers and onions, and already-browned ground beef!  It’s all ready for me to combine in the slow cooker, so that we can eat some delicious, healthy, carb-counted meals!  

Ingredients for my favorite chili recipe!

We have no way to brown the ground beef, or cut veggies, so she did all that too!

I’m here to care for Billy and to be with my family.  If I absolutely need help, I’ll ask—but if I can do something on my own, I will.  [I know, I know.  I should ask for help.  People tell me that all the time!  And they tell Billy the same thing.  We don't listen very well.  :-)]  I don’t want to take things I don’t need, and I don’t want to ask too much of people.  I would never have thought to ask for such a gift!  And I am blown away by how much Sara knows me and loves me and has made it easier for me to be here.  Food is a simple thing, really.  But for me, it can be so complicated.  Sara’s work made food easier.

It wasn’t always this way.  When Sara and I first started living as room mates, we didn’t always get along very well.  Sara didn’t understand why I spent so much time preparing food.  But she’d hear me talk about diabetes, and she heard me talk about the ways I felt really loved by my brother Billy (especially the ways he’d do things for me or spend time with me).  Sara was determined to love me, so she started to get creative… 

It’s not that diabetes is a drag.  I certainly don’t want to burden anyone else with it.  But if I’m completely honest, it hasn’t been the easiest thing for me here.  And without me even saying much about it, Sara knew what I’d need, and she worked to make that happen.  And she surprised me with all of it!  It’s something Billy would have done.  One of those ninja-like moves.

It makes me think of Billy, and of my mom.  The three of us love surprises, and we love surprising other people.  So Saturday was a good day…full of some of my favorite things and favorite people.  And Sara finally got to meet some of the family I have talked so much about.  She’s definitely a keeper!

Michelle and Sara

So how is Billy?
He’s doing well!  Despite being stuck in a hospital bed (it’s too painful and draining to get up and walk), he smiles often.  His sense of humor is very much alive, and he seems to get a kick out of all the times my brothers pick on me.

The infection in his side is still healing.  One of the surgeons made a small incision on Saturday morning, and the infection has been draining ever since.  The surgical team is hoping that the infection will drain all the way and heal fully.  His white blood cell count is at 7, and the normal range is 4-10, so his immune system seems healthy.  If the infection in his left side heals fully, they want to try stopping the antibiotics to see if his body handles it well.  If there is no fever at that point, they can discontinue the antibiotics altogether.  We’re praying for that.

People have been asking about chemo.  When’s he getting the next round?  Chemo is incredibly hard on the immune system; it can knock a healthy immune system down to almost nothing.  So it’s important that a patient have a very healthy, infection-free body before any chemo gets administered.  Billy can’t have chemo until the infection is all gone.  Chemo is also hard on the liver, and Billy’s liver hasn’t been working at its full capacity.  Until his liver is working right, he can’t have more chemo.  So those are some things you could pray for—a healthy immune system, no infection, and a fully-functioning, healthy liver.

Billy also hasn’t been able to eat, but he’d like to!  So please pray for his intestines and his stomach to begin working properly.  Billy would love to take out the NG tube and to enjoy food again!

For now, we’re taking things one step at a time.  The step we’re on is caring for the infection in his side and waiting for that to heal…

Thanks for all of your visits, words of encouragement, cards, letters, gifts, and prayers!  We really appreciate it!