the diagnosis//part 2

An ER nurse led us to a room.  It seemed busy, but calm.  Nurses in plain blue scrubs were everywhere.  I am sure there were doctors in the mix but I couldn't separate them.  Hailey laid on a bed while the Mr. filled out insurance paperwork and documents allowing them to do whatever tests were necessary.  I spoke briefly with the ER doctor about her symptoms.  A nurse started in IV and I was surprised at how brave Hailey was.  She was laying on the hospital bed, as calm as if she had just woken from a nap.  I was seeing everything in slow motion.  I am sure angels were with us at that very moment.  Because I felt a calmness I know wasn't coming from me.

We just wanted answers.  What was causing the swelling in Hailey's head? Why was there so much fluid?  Was she going blind?  Where do we go from here......

She hates needles.  If there was ever a time for her to be brave, it was now.  A male nurse came in to draw Hailey's blood.  She just laid there and let him do his thing.  She didn't cry.  I held her hand and she squeezed mine so tight.   He left with a handful of blood-filled vials and she began to sleep.  All of the commotion was wearing her out.  We waited.  It wasn't long, I am sure, but it seemed like forever.  Another nurse came to escort us to the basement level to do a CT scan of her brain.  The walls were painted cinderblocks.  It was tacky.  And quiet.  The basement was so quiet.  I appreciated the quiet.  It didn't take long and the tech was extremely nice.  Everyone was nice.  I could only guess that they really loved their job.  That working with children was way better than working with grumpy adults.  We went back to our designated ER room after the scan was over.   She was tired.  I could see the energy slowly leaving her thin body.  She laid down on the bed again.  After a short wait, the results were back from the CT scan.  The doctor asked if we wanted the good news or the bad news first.  I wanted the bad news first.  I always want the bad news first.  She explained that there was a lot of fluid surrounding her brain.  So much fluid, in fact, that the sutures surrounding her brain had not fused any of the bones together.  It was the same fluid that was behind her eyes.  The good news was that they couldn't find any masses in her brain from the scan.  We sighed a very small breath of relief.  The CT scan didn't give us definitive results.  We knew more needed to be done.  That this was just the beginning of what would be many tests.

The next test was an MRI.  I've had one before.  I  knew what was involved.  Any masses or tumors would be more visible with this kind of test.  Again, I went with her.  Again, to the basement.  I tried to keep the conversation casual with the nurse that escorted us to the testing room.  Hailey rode in a purple wheelchair and I walked briskly to keep up with the nurse as she zig-zagged her way through the basement corridors.   I tried to show Hailey that there was nothing to worry about.  I was trying to be brave for her.  The MRI tech gave me a locker to put my wedding rings in so that it wouldn't pull me toward the machine.  I sat in a chair in the corner of the room near a table of magazines while Hailey was prepped for the test.  She selected music to listen to through a set of headphones while I put disposable earplugs in my ears.  MRI machines are loud.  She closed her eyes and the test began.  A small mirror above her head was angled so that when she opened her eyes, she could see me.  I smiled at her every time her eyes met mine through the reflection.  She was so brave.  I am sure angels were with her then, comforting her in a way that I could not.  I looked at home decor magazines and sat in a white chair in the corner while the machine took images of her brain.  Half an hour later, it was over.  We were escorted back to our room in the ER.  I didn't say much on the way back.  Hailey was quiet too.

We got back to the room and the Mr. was waiting for us.  He looked anxious but I didn't have anything to say.  It was just another test.  The results were not immediate so we had to wait.  Again.  Hailey looked really tired.  Her poor sixteen year old body was giving up.  Maybe she felt like she could let go of being brave on that hospital bed.  The nurse came in and checked on her.  She had a fever.  He left the room and returned with a mask on and some tylenol.   How could she possibly have the fever?! She was fine just a few minutes ago.  My heart was starting to race.  She fell asleep.

There was a knock on the door.  Amidst all the craziness, the Mr. had gotten in touch with the missionaries serving in the hospital area.  We wanted Hailey to have a priesthood blessing and the Mr. needed another worthy man to administer the blessing.  One of the missionaries is from Virginia and we shared shared stories about our time there.  Virginia holds a very special place in our hearts and in some small way, it gave us comfort to talk to that 19 year old boy.  We shook hands after our 10 minute visit together and they left as quietly as they had come.

We waited.....

The results took a little longer this time.  Realistically, I'd say it was about 1/2 hour before the doctor came back into the room.  And her face did not look the same as it did when she gave the results of the CT scan.  Her face was serious.  Almost sad.  Her eyes looked sympathetic.  She didn't ask if we wanted the good news or the bad news.  She got right to the point - that the MRI results didn't show anything abnormal in her brain.  No cysts.  No tumors.  Nothing was wrong with her brain.  Then she paused.  And carefully told us that there was something wrong with Hailey's blood.   Her labs had come back & Hailey's white blood cell count was extremely high and her red count was low.  My mind started to process what she was saying and I asked her what that meant.  She said she couldn't tell us exactly what was wrong, but that a doctor was on her way to explain it to us.  My mind started to process this, too.  She was a doctor.  But another doctor was coming to tell us what was wrong with Hailey's blood. A special doctor.  A doctor that would be treating Hailey from here on out.  My heart sank and the tears wanted to flow but nothing came out.  I really didn't know what to say.  I could tell the Mr. was processing all of it just was I was.  The ER doctor knelt down by Hailey's bedside and held her hand.  She had the look of a worried mother and I knew that her heart was breaking for Hailey, me and the Mr.

A few minutes later, the anticipated doctor came in the room.  She politely introduced herself, shook our hands and walked the few steps from the door to to Hailey's bedside.  Our ER room was small.  She knelt down and explained that something was wrong with her blood, that her white count was very high.

And then the question came out: "Have you ever heard of the word leukemia before?"  Hailey shook her head yes and then no.  She had heard the word before but had no idea what it meant.

The Mr. was sitting next to me.  I looked at him & he looked at me.  Did she really just say what we think she just said?!  We were both scared.  Our eyes clearly showed it.  I had only seen children with leukemia on St. Jude's commercials.  None of them had hair and they were much younger than Hailey.  

"Am I going to die?"  It was the only question she asked.  The doctor assured her - and us - that Hailey would live a long and somewhat normal life.  This type of leukemia was not going to kill her.  That is all Hailey cared about.  That is all we cared about.

The doctor - Hailey's new doctor - explained that Hailey's white blood count was 609,000.  A normal child's white count is roughly somewhere in the 6,000 range.  That's a huge difference.  Huge.  The white cells were everywhere.  So many that her spinal fluid had nowhere to go but up into her head.  That was the cause of the excess fluid & blood behind her eyes.  She was not going to go blind.  Her doctor assured us Hailey's vision would eventually return to normal.  But what would not be normal from here on out is the life Hailey is going to live.  The doctor explained that some red blood cells look different from others.   Some are called blasts.  Simply put, they are white blood cells that have not formed correctly.  They multiply quickly, take over the bone marrow and prevent red blood cells, healthy white blood cells and platelets from producing.  It turns out that Hailey had some blasts in her blood but not very many - not enough to diagnose her with a more serious type of leukemia.  More specific tests needed to be done in the hospital lab, but the doctor was sure Hailey had chronic myeloid leukemia or CML.  I have a chronic condition - one I have had to live with since I was four years old and will have to live with for the rest of my life.  I know that routine doctor visits are just a normal part  of life.  And now these visits were going to have to be a regular part of Hailey's life.  Chronic meant she was in this for the long haul and we were going to be cheering her on & supporting her every step of the way.  Living with CML was going to be her new normal.

"New normal" - it was a term we used a lot in the beginning.

All of the motherly-type feelings started swelling up in me and I knew Hailey and our family were going to be tried like never before.  I texted my mom and typed the words that were so hard to say in person - "Hailey has leukemia."  I would have lost it if I had to speak those words out loud.  She replied and said she was coming on the next plane out.  We quickly made arrangements for a family friend to pick up our other kids from school.

Hailey was being admitted as a patient and our room on the 5th floor of the hematology/oncology wing was ready.  As we walked out of the room, the doctor kindly asked if I had any questions.  I paused and replied, "I really don't know what to ask right now."  My mind was blank.  I didn't know anything about leukemia.  She assured me that Hailey was going to be watched over and taken care of during her time at the hospital.

The ER doctor and nurses in the common area were quiet.  Their eyes looked sad and sympathetic as we walked by.  They knew that we had just received hard news.  They new that we were hurting inside.  They knew that our lives had just changed in a way none of us expected.  I tried to muster a smile, as if to say thank you, as we walked toward the elevator.  Hailey was escorted in a wheelchair.  The Mr. & I walked behind her.  Hailey was still being brave.   I was trying to be brave too.  But I was in denial.  My daughter does not have cancer.  My daughter does not have cancer.  My daughter does not have cancer.    Maybe if I said it enough, this nightmare would disappear.  No one ever said the "c" word.  It is not a nice word.

It was December 4, 2014.


the diagnosis//part 1

I am pretty sure there is a single day in every person's life that changes everything.  It happens whether you are ready or not.  And it makes you figure out just what you're made of.  Sometimes it is a process and sometimes it hits you like a tornado and you have no time to prepare.  Sometimes decisions need to be made quickly.  So quickly you don't have time to think about the decision itself.  You are kind of on auto mode.

December 4th, 2014 began just as any other day.  We started to drag ourselves out of bed at 6:30am, just as the Mr. was leaving for work.  I had 30 minutes to make sure everyone was up and dressed before going downstairs to unlock the front door for Hailey so she didn't have to fumble through her pocket for her house key.  She attends Seminary every morning at 6am during the school year.  This year they studied the Doctrine and Covenants.  She loves Seminary.  She promptly walks through the door at 7:05am and heads upstairs to get ready for school.  By 7:30am sharp, the littles are situating themselves in the minivan so I can drive them to school and Carter is walking down the street to his bus stop.  It was a cloudy morning.  It was drizzling outside.

Hailey had a doctor appointment that morning.  She had been complaining that her vision was blurry and I wanted to get her eyes checked to see if her prescription had changed.  We are relatively new to the area and didn't have an optometrist established so I took her to the first office I could find on our insurance list.  When we were sitting in the waiting room and she told me she couldn't read the titles of the magazines on the table in front of us, I knew something was wrong.  But my gut didn't tell me that anything was horribly wrong.  Not yet, anyway.

Five minutes later, we were sitting in the office with the doctor and she looked at the detailed pictures that the assistant just took of her eyes.  In a quiet voice, she said the words papilledema and hospital.  Actually, it was a full sentence....maybe two.  But all I heard were those two words.  She told us to go directly to the hospital and my heart dropped.  I had no idea where to take her.  We were new to the area and had no need for a hospital up till that time.  The doctor quickly made arrangements at a nearby hospital and sent us on our way.

But all we could do is just sit in the van in the parking lot and cry.  Crying out of fear is a lot different from crying because you are happy or sad.  I never felt so helpless in all of my life.  My daughter was hurting and scared and I felt like nothing I could say or do could comfort her in that very moment.  She was desperate for answers and I had none.  The bad feeling in my gut was suddenly there.  I had never heard the word papilledema before.  All I knew was what the eye doctor just told us: bleeding and swelling behind her eyes.  Both of them.  Was she going blind?  I had no idea.  It sucks to be a parent and not know important things or have all the answers when life  throws you a curveball.  We sat in the van in the parking lot were both crying so hard.  I kind of forgot that I needed to keep myself together for her sake.  I called the Mr.  I could barely speak.  The words just couldn't come out.  It cried the words, pushing out choppy sentences containing only the important information - papilledema and where to meet us.

We headed to the hospital and headed straight for the emergency room.  There was a girl sitting at a desk.  She had brown hair and had a kind voice.  I asked her if the hospital had any eye doctors on call.  She said no.  Putting all of my trust in her, I asked if she knew of another hospital we could take her to. She recommended Cook Children's.  It was a 20 minute drive downtown.  I could make it that far without crying.  I called the Mr. again.  A co-worker was just starting to drive him toward the first hospital.  I instructed him to turn around and head to Cooks.  It is just blocks from his work.  A wave of   relief washed over us when we turned to corner to the ER and saw him waiting on the curb in his bright orange coat.  He tried to smile at me through the corner of his mouth but I didn't smile back.

I parked the van in a small, free lot across the street and rushed Hailey into the ER.  The nurse at the desk asked me what Hailey was there for.  I handed him a sticky note that the eye doctor gave me with the word papilledema written on it so he could write it correctly.  He wrote it down on a sheet attached to a blue clipboard.  And in the column next to it, he circled the word red.  Red.  I knew it was bad.  I've watched doctor shows before.  Code Red always meant something bad.  We had not even sat down for a full minute when we were called back.  Everyone else in the waiting room looked like they had been there for much longer.  Hailey didn't look sick.  Their kids did.  It hardly seemed fair.  To them, anyway.  My daughter was losing her vision.  She was scared.   For the first time in her life, something was seriously wrong.  And our lives were about to be forever changed.


carter loves to run

At the beginning of the school year, Carter signed up for Athletics.  It's like a PE class on steroids.  All the kids who want to play a sport during the school year are required to take Athletics.  Carter's intended on trying out for the soccer team in the spring so he had to take the class the entire school year.  Shortly after school started, Carter's Athletics coach asked him to participate on the cross country team.  He was on the B team for the first race and by the end of that race, he had earned a spot on the A team (which was mostly 8th graders).

All of his races were 2 miles long and he always placed somewhere in the middle, which is quite an accomplishment considering the sea of boys that ran in each race.  The cross country season is hot and most days he was training in 100+ degree weather.  I half expected to get a call from the his coach to tell me he had passed out on the side of the road from heat exhaustion while training.  That never did happen, thank goodness.  Carter even qualified for the final race (he was one of two boys from his school to qualify).  And again, he finished somewhere in the middle.

I know that it can be hard to fit in or find your niche when you move and have to go to a new school.  It's even harder when you are shy.  He found his bearings pretty quickly and LOVES to run.  Now we can't keep him from running.  It's become a part of him.  I hope it stays that way.


the Alamo

Shortly after arriving in Texas and settling in to our temporary rental apartment, we had the opportunity to take the kids to see the Alamo in San Antonio.  The Mr. had an appraisal to do in the area for work and it seemed like the perfect time to get away for a few days before school started in the fall.

Luckily, our kids are great travelers (they really always have been).  They were totally up for a little road trip.  We don't need to bring much to keep them busy during long drives.  We play the Alphabet Game and I Spy and charge up the laptop, propping it on top of the cooler and pillows so the kiddos can watch a movie to break up the monotony.  And Tatum always wants to sing Down By The Bay at least 10 rounds through.  Have you ever met a moose that gawked like a goose?.......Down by the bay!

(I think someone forgot to tell the kids to smile.  It was bright, hot and they were so ready to get into an air-conditioned building.)

Our family likes to sightsee.  Daytrips to visit historic sites are always on our to do list.  More than going to amusement parks, I'd say.  We're kinda mellow that way.  Except Disneyland.  I'm sure we'd like that quite a bit.  We've been talking about it a lot lately and have decided to start saving our pennies (literally) to go one day.  Anyway..... back to the Alamo.  The heat of the day reminded us of summers in the Arizona desert and we were all too happy to get inside the actual building to cool off.  It was crowded but we were able to find a quiet spot  in a corner and talk to the kids about the battle that occurred there so long ago - a bravely fought fight to protect freedom in Texas - and that it happened right where they were standing.  We looked at artifacts on display and admired the beautiful wood doors.  We learned that the Alamo is considered hallowed ground so taking pictures inside the structure are not allowed.

We explored the grounds for about half an hour afterward.  The kids loved the koi pond and I was taken with the desert plants.  It was shaded and peaceful and I wanted to stay longer but the kids were getting anxious so we decided to head back to the car and make the four hour drive home.  We purchased snow cones from a street vendor and opted to walk down the River Walk on the way back to the car lot.  It was lined with shops and restaurants and the smell of food came from every direction.  What a treasure to have in a desert city.

We always love going on little work trips with the Mr.  Hopefully, he will have another one soon!


holiday gift guide: affordable workout gear

In between all the hustle and bustle of the holidays, I have to remind myself to take some time out  just for me.  Keeping a regular exercise routine is important for my sanity - especially when life gets a little crazy.  My go-to workouts are pilates, walking and kettle bell exercises.  I find these workouts challenge me (and make me sore in places I never knew I could be) and vary enough to keep my body on its toes.  

If you're like me, splurging for pricey exercise equipment is just not in the budget.  But you really don't have to shell out big bucks to get quality items.  I put together a fun little gift guide for you that won't break the bank.  In fact, everything you see is just $60 or less!

Items going clockwise:
1. Active Mesh Top:  These Old Navy tops are perfect for working out - stylish, cute & cheap!
2. Puma Rio Speed tennis shoes: These Pumas are perfect for that cute, I-just-worked-out look.
3. GoFit contoured kettle bell: Kettle bells great for working your whole body and the contoured design doesn't hurt your arms.  They come in various weight amounts.  (I used this kind along with Bob Harper workout DVD's and LOVE it!)
4. Fitbit Zip: This is a super cute pedometer for the walker/calorie counter in your life that syncs to your phone (I really want this to make it into my stocking this year.  Hint hint.)
5. Gaiam Pilates MatThis mat from Yogaoutlet  is sooooo good for pilates.  I was doing pilates on my plain old carpet for years and this mat has changed my life.  It's thick and fabulous.  If you do pilates and don't have one - get one!)
6. Marika Kitcket Legging:  I wear these cute pants from Yogaoutlet for my pilates workouts.  They give the right amount of stretch and come at a great price - a perfect piece to add to your workout attire. Yogaoutlet.com has a fabulous selection of workout clothing and gear for all budgets.  Give them a look see!

**This post was done in collaboration with Yogaoutlet.com, however, all opinions are my own.


turning 37 (for real this time)

Yes, it's true.  As of Monday, I am officially 37 years old.   For real this time.  And here's how I figured out that I wasn't really turning 37 last year.....

On my birthday last year, I told the world on instagram that it was my birthday and that I was oh so happy to be 37.  A few weeks later, I mention during a conversation at the dinner table that I liked being 37.  No, loved being 37. My sweet husband looked at me and said, "You are not 37.  You're 36."  I looked at him and said, "No way.  I'm 37!"  He said, "No, you're 36.  I had to check church records last week for something and saw that you are 36.  So you're not 37.  You are 36."  I burst out laughing, thinking of the ridiculousness of going a whole year thinking I was a whole year older than I really was.  I tried to quickly do the math in my head, but I am really bad at math unless I have a paper and pencil in front of me, so I just had to trust him.

So this year I am telling people that I am 37 for real this time.  And Noah made me a birthday card that says, "Happy Birthday Mom!  You're actually 37!"  It was the sweetest.  So here's to being 37.



October was a good month.  We managed to get through it with zero sick days and lots of family time.  I got a new calling at church, teaching the 13 year old Sunday School class.  I'm pretty sure they are still trying to decide if I'm cool or not.  Ha!  Nana & Grandpa Vern squeezed in a visit to see the kiddos and the new-to-us house.  Granpda went to town on our overgrown trees, and pruned them to his heart's delight.  It was cool to watch a 94 year old be in his element.  I hope I am that passionate about things at that age.

We ventured out to a pumpkin farm for our Family Home Evening activity to pick out pumpkins for carving and decided to splurge and do our first-ever corn maze.  We paired up and went in different directions.  And somehow, we all made it back to the end at just about the same time.  We went at dusk it was all lit up with Christmas lights.  We've talked about putting up lights in the backyard for months now and this pretty much sold us on the idea.  We picked out 3 medium-size, squatty pumpkins after the sun had set and headed for home.  We set them out on the front porch and left them there, uncarved until November 1st.  With all the business of other things, we just didn't get around to carving them and I am secretly grateful we skipped the wet, seedy mess this year.  I painted them instead (which I'll share soon!).

Halloween totally crept up on me.  Because we had only just moved into our house two months before, my mind was on other things - like what furniture we need in the dining room so we can actually start eating in there.  I have a solution for that, but no money.  It seems that is always the case......  Anyhow, the Mr. & I managed to slip away on  a hot date to Target and browsed the Halloween section for simple costume ideas.  Somehow, I had convinced everyone in our family that we were going to be lumberjacks about a week before.  Tatum, our super girly girl, was totally opposed. The boys were on board and Hailey seemed pretty indifferent.   When we found lumberjack beards velcroed  to plaid hats in the costume aisle and I knew it was meant to be.  I whipped up some axes with cardboard and duck tape.  Once Tatum had it in her hands, she was hooked.  No more princess costume for her.  No sir.

The boys were super funny with their beards, moving their mouths underneath to make them wiggle.  Carter is normally pretty quiet, but if you pay attention, he's pretty funny too.  It was pretty obvious from the start that the beards were a good idea.

I took all these pictures in 10 minutes flat because we had to rush to the church building for some trunk-or-treating.  The Mr. & I passed out candy while the kids walked around with friends and filled their bags with treats.  Then we went trick-or-treating with new friends around a block in our neighborhood. Carter scored a full size Snickers bar and made me promise I wouldn't eat it.  Because I did last year.  It's not my fault he left it on top of the fridge for two weeks.  He should have known better.  Chocolate does not last in our home.

On the way home, I told the kids I thought this year was our best Halloween ever.  It was the first year we all dressed up.  It was the first year no one cried about wanting or not wanting to dress up as a certain super hero or animal or whatever.  It was the first year everyone wore their entire costume the entire night.  It was the first year the kids were totally happy.  Which totally made my heart happy.

We finished the night off with our traditional watching of It's the Great Pumpkin, Charlie Brown.  We kind of love that movie and watch it a handful of times during the year.

Oh October, I kinda liked you.   Too bad you couldn't stick around a little while longer.