"I want Jingle Bells!!!"

Every December 24th,

we attend a Christmas Eve service at our church.  

I love it.  

 I love the Christmas carols,

 and the lights,

and getting dressed up,

and seeing everyone in their black and red Christmas attire. 

 I love the "cold" weather and the atmosphere of love and kindness. 

 The "fruit of the spirit" are almost tangible.

In previous years, we used a babysitter,

or my parents watched the boys for the evening service. 

 But last year we decided to brave it,

 and take the whole family. 

John and I found seats near the back (for three reasons).  

I found a few programs for the boys to color,

dug through my purse and found a few pens,

and held my breath. 

It started out okay. 

The music was loud (hooray!).

The singing was loud (yay!).

We breathed a little sigh of relief

and sang along to a boisterous "Joy To The World!" 

But then came "Oh Come All Ye Faithful".... 

a slower moving, more emotionally-focused song. 

 Not exactly Andrew's cup of tea. 

That is where the trouble began.  

Andrew did not like "Oh Come All Ye Faithful" 

and he quickly made his displeasure known. 

He started yelling out requests:

"Jingle Bells!!!  Jingle Bells!!!

Jingle Bells!!! Jingle Bells!!!"

during the softly sung,

 "Venite Adoremus, Venite Adoremus, Dominum."  

 We tried denial for a few more verses;

we tried shushing;

we even tried muffling,

but to no avail. 

 He just kept getting louder,

"JINGLE BELLS!!!" 

and louder, 

"I want JINGLE BELLS!!!"

So I took him outside.

There, in my brand new Christmas outfit,

I followed him all over the church grounds

as he climbed and jumped off every cement structure in his view.  

I found a parent of another ejected two-year-old.

We talked

while we waited for our "lucky" spouses to emerge from the service. 

It was one of those times in life

when you don't realize how sweet it is until the moment is gone. 

It was just Andrew and me

(which was, at the time, a rare one-on-one opportunity).  

But I don't remember appreciating it.  

I remember longing to go back into the church and sing, and sit. 

I remember resenting that I had been the parent nominated to leave the service,

and griping in my mind about having to follow an active two-year-old

around the church parking lot. 

"Don't I do enough of this every day?"

 I grumbled to myself.

I wish it were possible to always enjoy every moment.

To treat each day with awe and wonder.

To appreciate the gifts I have.

And always find the joy.

I didn't see it as a sweet time for Mama and Andrew.

I missed it.

 I keep envisioning this December 24th. 

If all goes well this week, 

it will be Andrew's first time back to church since the tumor was discovered.

I can't wait to sit in the pew with him

and see things through his eyes.

I can't wait

to see what he does.

If he yells out "Jingle Bells!!" 

I might raise him above my head

and join him

and laugh

and cry.

Or we might leave again.

And this time,

I will enjoy the moment

in the chilled air,

adoring him

as he grabs my hand

and climbs cement blocks

and races through the prayer garden,

happy and playful.

Lucky me.

Day #2 "Celebration:" Sepsis and the ICU

Sunday, the day after my "amazing day" post, was a terrifying day. 

I woke myself up early (about 4 a.m.)

 with a dream that shocked my eyes open. 

My family and I were riding in my Dad's motor boat on a lake. 

Suddenly, we came to a HUGE wave. 

The boat tipped up, to an angle greater than 90 degrees,

 and flipped upside down on top of us. 

My panicked thought before I woke up, was,

 "ANDREW!" He can't swim!

 I must rescue Andrew."

Later that night I was in the ICU, fearing he might die.

Sunday started out nice enough. 

 We went to church, ate some lunch,

 and John and I went to Cardinals/Broncos game with some friends. 

We had free seats

(why else would anyone go to THAT game?).

 I was looking forward to some relaxing adult time.

We made it through the first half. 

Then, thankfully, I checked my phone. 

 It was SO LOUD in the stadium that I did not hear my phone ring. 

Four times. 

 It was the babysitter, getting more and more panicked. 

 Andrew was at home shaking, with a fever of 102.5.

We immediately left the game, raced home, put Andrew in the car,

and raced to the hospital. 

When we first got there (around 6 p.m.), he actually seemed okay. 

His fever was lower, his blood pressure was normal.   

 However, around 8: 45, things quickly turned. 

 His blood pressure started going down. 

His heart was racing. 

His breathing was labored. 

His fever climbed to 103.7.

We later discovered he had sepsis.

Bacteria from his gut had leaked into his blood stream.

 I have feared this from the beginning of treatment.

The possibility of sepsis is the reason we have rushed to the ER every time his temperature gets over 101.

(The chemo destroys his white blood cells

and makes him both susceptible to infections,

and unable to fight them off.)

Around 9:30 p.m., we were moved to the ICU.  

His blood pressure continued to drop for several hours.

 I lay next to him in his hospital bed,

holding an oxygen mask over his nose,

moving it frequently to keep up with his roving head. 

Whenever I relaxed, or dozed off, even for a short period,

his oxygen absorption reading went down

and an alarm would sound. 

Every 15 minutes a machine would automatically take his blood pressure. 

A sound would signal the cuff's activation,

and with each processing beep, I would hold my breath and pray. 

For a very long time, until 4 am, his blood pressure seemed on a downward trend.
  Lower and lower. 

 "Scary" does not begin to define it.

Around 4 am, after ten hours of fluids and antibiotics,

his blood pressure stabilized,

his fever was gone,

and all of the other "vitals" were back to normal. 

Thankfully, the antibiotics were doing the trick. 

Thankfully, right now he is sitting here next to me at the hospital, 

decorating a  gingerbread house and frosting a cookie. 

He will continue to get antibiotics for 14 days.

Through Christmas.

But thankfully, the doctors have worked it out

so that after one more day (or two) in the hospital,

I will be able to give him the medicine at home.

Just when I tried to relax.

It almost seems like punishment for relaxing and celebrating.

I let my guard down.

Saturday night

for the first time since April 17

(the day we discovered the tumor)

I dared to pray

"Dear God,

I am cautiously giving Andrew to you again.

Your arms are bigger.

You love him more.

Your arms reach places that I cannot.

I put him in your protection."

And then this happened.

I don't know what to think about prayer anymore.

But then again,

Andrew is smiling.

Chemo is done.

Antibiotics can be given at home.

Christmas is coming.

I am thankful.

An amazing day.

I woke up about three times,

every night,

all week long,

checking Andrew's tubes

and changing his soaking diaper

(from the constant fluids being pumped into him). 

So I'm tired. 

But I have to tell you about my day :)!!

This morning, 

the first thing I heard was Andrew yelling at our six-pound dog

(with an over-active tongue): 

"Ruby!

don't lick my beautiful Mommy!" 

Andrew (and his pump) and Ruby had been dumped into bed by my husband. 

He was done dealing with all three boys downstairs,

and didn't find it fair that I was still sleeping. 

After hearing those sweet words,

I didn't mind the "wake-up" call.

About half an hour later, the alarm on Andrew's pump went off:

  Reservoir Volume: 0.0.  Empty!

The last round of chemo:  DONE!!!

We (my husband) took some pictures of the tube removal process.

  But I wasn't wearing make-up,

they were blurry,

and really,

does anyone want to see the removal of a needle...

ummm...

probably not. 

Andrew's first act of freedom

was to put an ornament on the Advent calendar

my Grandma made for me when I was a child. 

You have to be fluent in counting to use it,

because some of the felt numbers have fallen off. 

I think Andrew may have picked out day #21,

but no one stopped him.

(try not to notice the mismatched jammies, 'kay?)

We got dressed, and headed to our favorite bakery. 

 Can you believe Andrew had another cupcake?  

When all of these celebrations are over, I think he may go through withdrawals.

Then we headed off to the park with our non-cupcake baked goods. 

Our church was having a little breakfast get together,

so we brought along some sparkling grape juice

(I thought it was apple cider, but nope),

some Christmas cookies and muffins. 

We drank the juice out of plastic cups and toasted Andrew,

and hoped for a better 2011. 

Not exactly champagne, but it was nice. 

The boys played on the playground with their friends

and had to be dragged away from the fun.

My husband never does anything half-heartedly. 

Next on our agenda,

was a full-day of field trip activities

so that Aaron could earn more "belt-loops" for his boyscout uniform.

I have yet to see any of these "loops", but we spent the day earning them: 

picking up cigarette butts,

getting a tour of the nearest bank,

going to the post office...

Which reminded me

that it had been a while since I had been to the good ol' P.O...

So...

 the plan was for me to check my P.O. box

and then give Aaron "a tour" of the rest of the building

(we are nerds, what can I say).

John would stay in the car with the other two boys.

But when I got to my P.O box,

it was full of keys!

10 of them!

to 10 bigger lockers!!

10!! 

I should have gone outside, summoned John for reinforcements,

 and then opened all the lockers.

But it was too exciting. 

And I am too impulsive. 

Aaron and I opened locker after locker

and had a huge pile of boxes sitting in the middle of the P.O aisle. 

Then I realized that our car was kinda far away

and we couldn't just leave the packages in the post office

and come back for more...

 so I tried to pile seven of them in my arms and two in Aaron's. 

I was about ready to balance the last one on my head,

but then a kind man

(or perhaps just an incredulous one),

seeing our blissful "distress,"

offered to help. 

He carried several of them to the car with us.  

I think he probably muttered

"nutty lady"

under his breath,

or at least in his mind,

the whole way to our car.

But I didn't care.

I was too busy giggling. :)

Aaron never got a tour of the post office.  

But I think we may have created a "forever" memory.

Here are picture of the boxes.  Thank you all so much, what a fun surprise! :)

(try not to notice the cheerios, 'kay?)

After our field trips,

we headed to the Rainforest Cafe for dinner with my parents, brother and aunt. 

Andrew growled at the Cheetahs,

and warned other children: 

 "Get back to your seats before you are eaten!!" 

He was serious.

 (I have no idea what Sammy is doing.

Perhaps praying that his food would arrive soon? 

It took about an hour.)

Then we drove home. 

And opened all of the packages.

Thank you all!!  So sweet. 

Stay tuned for the next "Hats" edition.

I have lots of pictures to take!!

Champagne is still waiting. 

Maybe tomorrow.

I think we gotta drag this celebration out for awhile.

It was an amazing day.

Chemo is DONE!!!



Three more days.

Well, chemo was a go! 

Tomorrow is day number three of five. 

Still holding my breath.

 I am trying to remember the lesson I learned my freshman year in college: 

"Don't wait to celebrate." 

Instead of choosing a fun elective for my one month "interim" class,
 I chose the required course, to get it out of the way.

 The next year, I switched schools.

No "fun elective" for me.

I missed out on Europe.
I got a classroom discussion on moral development instead.

So Saturday, after I take the tubes out,
we are celebrating. 
We are cheering. 
We are crying (well, at least I am).

And then we will brace ourselves for the first of many scans.

Right now, it just all feels surreal.

I don't really feel anything.

I think I'm waiting for Saturday to see what comes bursting out.

All week I've been looking through photos, 

putting together a digital photo album to document these last seven months.

(A huge, massive deal which will probably include several volumes when I'm done)
It has been taking up a lot of my time and emotions.

While I was searching, I found some pictures of Christmas past.

2007

Andrew, 3 mos.

2008

 2009

                                                                

2010

Thank you all for the support over the last seven months.

Three more days.

The champagne is waiting.

Hats: a somewhat wintery edition

Time for more hats!! 

 I save each card, each picture, and all of your kind notes.

  They mean so much. 

I will keep them forever.

Now to begin.

Andrew has received a few winter hats along the way. 

They were too warm to wear when they initially arrived. 

However, the time has come.

We have also received many new ballcaps from various places.

Thank you!

"Mr. Froggy" has become popular headwear in the neighborhood.

(John's friend made him.)

Alberta, Canada sent this along with a ballcap back in October.

It has been cold lately, so he can finally wear it. :)

When we were in Houston, back in July,

Mississippi sent us a winter cap in addition to a ballcap.

Have you been to Houston in July?

The thought of putting it on his head made me sweat.

We had to save this one.

It's perfect now :)

Alaska!!  Cold enough to be in the "winter edition,"

even as a ballcap.

San Miguel Allende, Mexico

not so wintery...

Tennessee 

Another one from Australia.

 and London, England

(a bonus from Alaska. Her friend just returned from England and brought this back for Andrew.)

Thank you all for the sweet hats and extra goodies that accompany them!!

We are grateful.

the last two miles

Almost at the finish line. 

I feel like I did near the end of my marathon in 1996. 

Focusing on the ground;

staring at my feet;

putting one foot in front of the other;

searching for a soothing song to sing to the beat of my footsteps;

fearing that my knees might implode, or my heart might stop beating, or my lungs might collapse...

right before the finish line. 

People are walking in front of me,

chit-chatting about la-di-da,

and I am in excruciating pain.  

I want to scream "get out of my way!" 

but I am so depleted I can hardly gasp for air. 

Yeah. 

Just like that. 

I'm so afraid something will disrupt the completion of this chemo,

 I can hardly move, or talk, or blog.

 If all goes well, the last chemo begins next Monday. 

I am so desperate for it to be done by Christmas.... 

What an amazing gift that would be, for our whole family.

However, I will admit that the Christmas season is definitely serving as a beautiful distraction.  Our Arizona weather is actually COLD!!!  I have been wearing my winter coat in the mornings and scraping frost off my windshield!!  I love the Christmas lights everywhere and blaring carols in the car.   Every night before sleep, my jammied boys cuddle in my bed for a live broadcast Christmas show on ABC, or CBS, with commercials and everything, just like when I was little.

I let my boys decorate the Christmas tree this year, all by themselves.  I think I am going to leave it that way.  A few ribbons strewn around the middle and a bunch of ornaments clumped at the bottom.  They keep taking them off, looking and talking about them, and putting them back on.  It's sweet.  Sammy was so excited about unpacking the Christmas village houses, I told him he "could be in charge of them."  He set them up the way he wanted to, and is so proud.

I hope you all are enjoying the Christmas/holiday season. 

I can see the finish line ahead.  It would be nice to stop running, and breathe again.  And sing songs on Christmas without having to worry about chemo the next morning.  That would be

really

very

awesomely

amazingly

overwhelmingly

nice.

Please pray that it will be so.

Wow.  It's midnight.  Happy December to you all.



Gratitude...attempt #2

Last Tuesday, after posting my angry blog, I went to bed, still frustrated. In the middle of the night, Andrew woke up screaming, kicking his legs in pain, and crying that his eye hurt. Yup. That eye. I think my whole body stopped moving. Lungs, heart, everything. Terror. I took him downstairs, where John was still working and gave Andrew a bowl of cereal. He seemed happy enough, so I decided on denial.

That worked until Thursday morning when he woke up and his eye was puffy and he again complained that his "eye hurt." I was panic-stricken. During our scheduled doctor's appointment that morning I could hardly admit my fear to the nurse. I saw Andrew's life, and my own, taking a dramatic nose-dive.

Thursday morning they scheduled a CT scan before he began his previously scheduled chemo. I held my breath for several hours and sat in numb, silent hysteria until the doctor stuck his hand through the door with an "OK" sign. It was just a sinus infection, on both sides. It affected the one eye more significantly, probably due to all that has been done to it (surgery, radiation). He's on massive anti-biotics, but he is okay.

Wow. The moment after his original scream Tuesday night, I realized how much I had been taking for granted. I realized how silly I was to have spent my day worrying about the future, when the day itself had been happy, and Andrew had been happy. I realized how dependent I am on God for everything, and that everything I have is a blessing from him. And I have SO much.

We spent three VERY long days in the hospital. We arrived at 8 am Thursday morning and left at 8 pm Saturday evening, exhausted.

They gave Andrew medicine to "sedate" him for the CT scan, but it turned out to have exactly the opposite effect. He turned into a raging, writhing, miserable lunatic for 12 hours. He was literally attempting to dive out of his bed, headfirst. He screamed at me. He hit me. He screamed that he "hated me." Over and over. Every so often, he would calm down, put his head in my lap and sob. I would hug him and comfort him. Then he would ask for food, I would make it, and he would throw it at me. I kept trying to appease him, and please him, and make him happy, but he just kept screaming. If he could have punched me in the face, he would have. (He reminded me of myself, in my conversations with God.) It was exhausting, for both of us.

On Friday morning, the hospital staff and patients celebrated Andrew's last inpatient chemo. We sang the "hokie pokie." He "rang the gong" and licked the frosting off of three glorious cupcakes, blue, chocolate, and pink. (The dye in the cupcakes was so bright, his face was dyed pink for 24 hours. I'm not sure what was more toxic, the chemo or his cupcakes :).) I took about 2000 pictures while also trying to videotape. Surprisingly enough, none of it turned out very well. I needed at least one more hand.

Sunday I woke up with my own sinus infection and my period. I still feel icky and have a bad headache. Blah.

Earlier today I wrote, and then retracted a post about gratitude. It was a very cognitive, in my head, "trying to figure things out" post. It exhausted me, and it didn't feel real as I posted it, so I took it back.

I am grateful for so much. I can't walk two feet in my house without tripping over my blessings. I realize that everything in my life is a gift. But the last week or so, I have honestly felt like crawling into a deep dark hole and staying there. I start to worry that depression might take over and I wonder if I can I keep handling this... I guess part of it is that I dread the next few days. I fear what that orange "medicine" is going to do to my son this time. I am also finding myself terrified of "life after chemo." I thought I would be more excited, but I am finding myself so scared.

But I AM grateful.  I am grateful for a God who can handle my rage. I am grateful for a God who keeps on loving me, even when I call him a liar and a sadist. I am grateful for a beautiful husband who loves being a father and enjoys his children. I am grateful for my sweet and precious children. I am thankful for my dogs. I have a house, food, clothing, and a comfortable bed to sleep in every night. The list goes on and on.

It has been a long, emotional week. But I am grateful to have lived it.

Happy Thanksgiving to you and yours.

Coffee at the mall, with God

Ahhh...I'm actually sitting at my computer. 

I would have joined you earlier for coffee but... I was at the mall!  On a "should have been blissful" all-day shopping excursion.  My mom watched Andrew and gave me some time to myself.

Unfortunately, "time to myself" proves to be dangerous these days.

I just sit and obsess too much.  I sit and jabber at God so much.  All day. Every day.  He's probably up there thinking (much like you, dear readers) "Enough already!! Haven't we hashed this through before?"  Alas.  Yes.  Yes, we have.

 So, I had my coffee and conversation with God today.  I'm afraid I did all the talking.

It went something like this:

Me, searching through the sweaters at Nordstrom Rack:  Thanks! (tons of sarcasm there).  I knew it was too good to be true.  I could hardly believe my blessings.  I was so amazed at my three beautiful boys, how they were mine(!), and so sweet, and so cute.  Of course!! You saved pediatric cancer for my child.  For me.  But "oh how you love me."  mmm hmm.  Go sell crazy somewhere else.

Later (ordering a decaf ginger cookie latte at Coffee Bean and Tea Leaf and noticing that "Jesus" was a barrista):   I wish I had the faith that some people have. Where they can cling to You and believe that You are good even when their baby is diagnosed with cancer.  Are there really people like that?  Because, wow, that is impressive.  I'm not there.  Right now, I am SO ANGRY at you I wish I could punch you in the face multiple times.  But of course, you are invisible, untouchable, impermeable God and I am mere, weak, pathetic, human throwing punches that won't touch you in the least.  Happy for you.

And then as I wander through the CD racks, I reflect, feeling slightly worried that God might retaliate for my brazenness and lack of "appropriate humility:"  Really, things have gone quite well so far.  Maybe You have been involved more than I know.  Maybe I am not giving you credit where credit is due.  Maybe you have been protecting Andrew through all of this. I hope so.  Are you there God?  It's me, Julie.  Are you there?

And then I ask myself:  What do I want from God? Andrew is at home with Grandma, happy, playing, and making platelets.  He usually handles the chemo well, he likes going to the clinic...  Am I giving God a chance at all? Is there anything he COULD  do to show me that he loves me and that he cares?  I'm afraid I need a "mene mene tekel upharsin" moment, maybe on a sticky note.  "THE CANCER WONT COME BACK" would be nice.  But, that's not going to happen, is it? I won't get any confirmation that I will be alive tomorrow either...  Such happy thoughts for a day at the mall.


Me, considering a black sweater jacket at Buckle:  Why do you torture us God?  Why do you allow SO much pain? I think about my friends who have been through horrific family deaths, or multiple bouts with cancer,  and a friend whose wife died giving birth to their brain damaged (due to birth complications) child.  I want to believe that God will only allow us to be tortured to a certain degree and then provide mercy once we have met a pain threshhold.  But no.  Doesn't seem to work that way.   And I grow very afraid.  Terrified.  We are coming to the end of the chemo.  The moment(s) of truth is arriving.  Did the chemo kill the cancer?   I am so scared.

While considering various wall art today, I read a poster today that said, "Sometimes God calms the storm, and sometimes He lets the storm rage and calms His child."  Sounds so uplifting and soothing.  But I thought...screw that!!!  I don't want to be calmed.  I want the storm to stop!  I don't want consolation prizes!  I don't want toys from the toy closet to make me feel better.  I don't want hugs.  I want my Andrew.  Please dear God.  I want my Andrew.

Me, picking out three small ski hats and warm gloves for our hopeful trip to the snow:  I wish I could be more faithful, and stick with my "surrender" idea. I wish I could stay in those moments where I feel like I can handle it.  I wish I could let go, and trust, and feel at ease with whatever comes.  But today I just feel sad and worried and terrified.   Whenever I think about my little boy, and his happiness and glee, and his plans for kindergarten, I get SO angry.  I wish I were in a place where I could just be grateful for each day.  Not today.

Sometimes I feel like this whole world is a Jurassic park experiment gone bad, and the creation gets all the blame. 

But the idea of "no God" is worse to me than a seemingly absent God, so I keep praying, and hoping, and asking for forgiveness for wanting to punch Jesus in the face.  (The God one, not the barrista.)

A verse that I did find helpful today:  "Trust in the Lord with all your heart, and lean not on your own understanding.  In all your ways, acknowledge Him, and He will direct your path."  Proverbs 3:5-6

Praying for hope, and trust, and faith, and forgiveness, and peace, and life.  Once again. 

I hope your coffee conversations were a little less intense than mine.

Run, Andrew, Run!!

There was quite a build-up.

Daddy had Aaron and Sammy running laps at dusk,

practicing for the "big run" on Saturday morning 

(100 yard dash courtesy of Sammy's school). 

They raced from the neighbor's house to our mailbox,

from the mailbox to the garbage can,

and back to the neighbor's house. 

Several times. 

Their faces were determined; their feet were quick.

Andrew and I were the spectators and cheerleaders. 

Andrew couldn't run because he was
connected to his chemo tubes. 

He cycled around the driveway on his bike,

while I pushed the handle and wore his fluid-filled backpack.

We cheered "the brothers" on. 
And then I gave them the "winning isn't everything" speech.

I was trying to downplay John's excited hype over
how they were going to "WIN!" 

and reminded them that racing could still be fun, 

even if they lost. 

Even if they did not get a ribbon. 

(That's what moms say, right?)

Andrew was not interested in the race.  

He was just going to "play on the playground." 

Saturday, 8 am: 

After a long week of chemo, tubes,

constantly wet diapers, and threats of the "moorgency room"

(if the tubes were to come dislodged),  

I was able to remove Andrew's chemo tubes.  

Hooray!! 

An hour later we arrived at the park, ready for the big run.

I stayed in the car and put on my make-up 

while John took the boys and gave them one more pep talk. 

When I met up with them, all THREE were in blue. 

Ready to go. 

I immediately assumed that Andrew
would back out at the last second.

 I had already resolved that
"at least the money was going to the school,"

and at least "Andrew likes the shirt."

The races began.

Aaron ran first.  He got third!!

Sammy ran next (with considerably more competition). 

He wasn't as happy with his results.

:(

Poor buddy.

I was still sure that Andrew would back out. 

There was a long wait between the races.

I was sure Andrew would grow bored and run away to the playground.

 But when the loud speaker called for "three-year-old boys,"

 there he was. 

Fresh off chemo,

wearing his dragon hat,

feet on the starting line,

 and ready to GO!

His brothers were on the sidelines:

Daddy coached him one last time.

The race started. 

"Go Andrew, Go!!!" I screamed.

 His eyes immediately searched for me on the side-lines. 

(oops!)

 I was sure he was going to run straight towards me,

duck under the boundary tape,

and quit.

But he didn't.

He saw me.

He smiled.

He ran towards me,

and kept right on running

towards the finish line.

He was several feet behind the slowest runner.

But he kept running.

He was the last one across.

But he didn't care.

I was wiping my eyes

as the race volunteer took him to the medal table.

He did it!

He was so proud.

And then he ran to the playground.

He kept that medal around his neck the whole time.

That'll teach me.

Once again.

Never underestimate Andrew.

Never.

And

Winning is definitely NOT everything.