Saturday, December 31, 2011

Out with the old In with the new

Another year has come and gone.

What an eventful year it was!  Not the kind of events I ever want to repeat!
Ya hear me... never ever everrrrrrrr!
I am ready for some exciting, wonderful, happy go lucky events to happen in 2012.

2012 will bring smiles

2012 will bring growth to my 2 and 5 year old daughters

2012 will bring all the pieces of my family back together

2012 will bring cancer free goodness

2012 will bring a new aspect on life

2012 will bring a new kind of love and respect for my husband

2012 will bring a forever grateful heart for my children

2012 will bring humbleness for a kind, gentle, always loving Heavenly Father

2012 will continue to bring renewed faith in miracles



Friday, December 23, 2011

a Heavenly voice.

Christmas is pure magic at Primary Children's.  The spirit there is so sweet and brings a feeling that is indescribable.

When I realized we would really be there through December 25th, I was sad feeling bad that Tenley wouldn't be able to spend Christmas morning waking up and running to the tree with Taryn... seeing what Santa had brought.  
It still makes my heart ache a bit.

But..... there are some bonuses to this circumstance.

Every nurse and tech has told me nothing compares to Christmas time there.  So far we have not been disappointed.  Gifts come in all shapes and sizes every single day, carolers sing in the halls, fun trees are in every corner from the festival, ice sculptures, Santa has been a few times, the Jazz players and dancers came yesterday....

but what has really topped this list...
David Archuleta.

I am so glad I just happen to be with Tenley this afternoon.  She has been in such a great mood these last few days.  Playing, eating a bit, smiling, and giggling.  I had just gotten her down for a nap without any struggle, so after she was sound asleep I went out into the hall and was going to head to the cafeteria to grab some lunch....

then I overheard the nurses saying something about "David Archuleta... yeah, down the hall... "

WAIT a minute... WHAT??!!

These past few days I have been listening to his Mormon Tabernacle Choir Christmas Concert CD.  
I can feel the spirit through his singing, and hearing the songs on that CD remind me why we are celebrating this time of year.  

It has brought me comfort and peace as I drive back and forth from Primary's, listening to his beautiful pure voice.  I honestly feel lifted up and ready to take on whatever challenge I will be faced with.

Sure enough he was down the hall in someones room, and the nurses were starting to crowd around waiting for him to come out.  I instantly got super excited and nervous all at once.  I truly love this guy. Ever since American Idol, I have always loved him.  My mom and I even got last minute tickets to his concert a couple of years ago.  

There is something about him that is so childlike and innocent.  I love it... I can feel the pure love of Christ through his countenance.

Even more so now.

I told the nurses I wasn't sure if I should go wake up Tenley and have him visit her.  One of the doctors that was checking on Tenley throughout the day came by and said, "well ya! you better wake her up!!"  I told him if I went back in our room to wake her, he better darn well make sure he came to see us!

A couple minutes passed by and it was our turn.  The lights were off, the blind was closed, and Tenley was slowly waking up and nuzzling into me.  I told him about her story.  I told him how much his voice inspires me and fills me with the spirit.  

Then I asked him to sing my favorite song from the cd.
Silent Night.  (take a minute to listen to this and you'll know why it is my favorite)

Purely Heaven sent. 

a day out on the town.

Taryn loves to be my sidekick.... and a couple weeks ago, we decided to have a girls day, just the two of us.  A lot of my time goes to Tenley, so a day like this was in need.

It started with some lounging jammie time.  Then we got ourselves ready and headed out to do a little Christmas shopping with build a bear in mind.

Taryn was such a good sport following my trail in Nordstrom,  H&M, and a few other places... then she finally groaned "moooooooooom I thought we were going to BUILD A BEAR!"

So to build a bear we went and she picked out two cute hello kitty's - one for her and one for Tenley.
My heart melted as she made her wish for the bears heart... "I wish my sister (thisther) Tenley will get all better."

Then she washed them, and picked out their clothes.  Tenley's got a pair of jammies, and an angel outfit. - very fitting -
Taryn's got a Christmas dress and ballerina jammies.
Then we named them... Bella and Pricilla.  Those choices were all Taryn.

After all that shopping and bear building we got some corn dogs.  While we were eating we talked about how much walking we did in the mall, then Taryn said, "hey, I know a good idea!  I think we should get pedicures now!"

That's my girl.

So that's just what we did... But before that we made a pit stop at fresh market to grab a few groceries.  While we were there, we got a picture with a big polar bear standing in front of a huge truck filled with what we guessed were Santa's presents.
Even the grocery store was a fun adventure!

Pedicures were great... Taryn chatted with the workers and told them all about her thisther in the hostible.  They remembered us from getting pedicures there over a year ago... and they recognized me as Mary's daughter.  They even knew I wasn't Lisa or Amy!  Now that is impressive!

They also gave us the royal treatment and glitzed up Taryn's toes.  She loved it!!

After finally getting home, we started dinner and then decided to make the gingerbread house my mom bought before Thanksgiving.  After I finished the roof, I told Taryn she was in charge of doing everything else.  I kept adding stuff and putting things on my way until she said... "what the heck mom, I thought you said I was doing it!"

This was the Best. Day. Ever. (Taryn's words)
and I couldn't agree more.

And thanks to a very gracious thoughtful anonymous friend, the build and bears and pedicures were free.

making her wish

giving them a good scrub

oh ya, I spritzed her with some Justin Bieber perfume.
Check out that shy/embarrassed face... haha


Bella and Pricilla

Thanks for the fun day cute girl!

Saturday, December 17, 2011

a Tenley update

Ok - sorry there are no pictures!  I left my camera at the hospital, and I haven't downloaded any for awhile.  They will come, I promise!

So it has now been 12 days since we started round two.  Tenley has been doing so great!  She really came back with much more gusto and personality.  So much that she took a dive, literally, out of her crib one day.  

The first day back my mom and I got to work making her room cozy.  All the while, Tenley just sat in her crib, laid back on a pillow, ate some doritos, and watched a show.  It was like... Ok, here we are again, let's just get it all started!

So we did... that evening the chemo began.  We finished chemo this past Monday (December 12th) and she sailed through without any issues!  No throw ups, no fevers, just a few whines when getting vitals - which included eyedrops, but other than that she was golden.

A few days ago she started to get a pretty sore bottom.  Thankfully we had a super genius nurse named Dave who switched her normal baby wipes for some damp cotton pads with some special cream to spray on it... after using those plus the diaper rash cream, her bottom is back to baby soft happy bum cheeks!

Slowly she has been losing her appetite.  Last week she had a blast sitting in her own high chair eating on her own... she even figured out how to use a fork, and stabbed chicken nuggets over and over again one afternoon, eating them one by one.

Today... not so much.

Today was a big change, actually it started more last night.  My mother in law was with her throughout the evening, and I got to the hospital around 9:45.  Tenley looked really tired and ready for bed.  All she would eat that evening was popcicles.  I got the room ready for bed, and around 10:30 was ready to rock her to sleep with a bottle.

No way josé was she taking that bottle.

Ok - so I figured I'd just rock her for a bit, and then she'd doze right to lala land.

Um, ya... not happening either.

Finally around midnight I decided her mouth must be bothering her.  I knew she was so sleepy, but she just could not give into sleep.  I had the nurse give her some morphine, and thankfully she dozed off soon after.

BUT - this little girl is a trickster.  Just when you think she couldn't possibly be more sound asleep, and you try to make the switch from the rocking chair to her crib, she grabs at you like a monkey and cries as if she was faking it the whole time.

I rocked her from 10:30pm - 1:30am

Now don't get me wrong... I love to snuggle this girl, but those rocking chairs are not the most comfortable, and I was getting anxious and tired.  Really emotional, mind racing, crazy person tired.  Finally at 1:30 I got her squealing monkey grabbing self to lay down while I hovered over her, still holding her tight.  Slowly I had to pull away, and I made it into my own non-bed.

5 o'clock came in a blink of an eye and the nurse tapped me and said Tenley was running a fever... which required them to change her claves (on her tubes from her chest) and some blood cultures done, and yadda yadda I couldn't think straight so who knows what else they had to do.

After all that and rocking Tenley back to her "deep sleep" the whole process began again... but this time I was never able to fully get her back into the crib.

I rocked her from 5am - 8:45am

Thankfully a wonderful gal came to relieve me, on her one year wedding anniversary as well.  ANGEL!

I took that break, headed home (to my mom's) stopped by her ward Christmas party to be with Taryn, and then made the drive back up there.  Taryn came along and we brought a cute poster with a collage of pictures of Tenley, our family, our old life.

As we walked into the room Taryn ran up to her, and then gently kissed Tenley and ran her hand across her face.  She understood that Tenley was not at her best, and needed soft quiet loves.  She kissed her over and over and whispered I love you Tenley... then she showed her the poster and Tenley loved looking at it, pointing her finger at everything.
Watching my girls together is always my favorite.

My mom was with her at this point, and after she left, Taryn wanted to head to the kids playroom...  Thankfully she absolutely LOVES going there and has no fear whatsoever going with whatever volunteer comes to get her.  She stayed there for 3 hours today playing.

During those 3 hours... guess what I was doing.


Total rocking time = 9 hours and 45 minutes in a 19 hour time frame.
When I am a bajillionaire, I am buying that hospital some awesome luxury rocking chairs and amazing pull out chair beds.

Or maybe I'll try to invent some, yes... that would be the best idea, then I could pay off all these hospital bills!

Thursday, December 15, 2011

Taryn's Dance Anthem

This is what you get with Aunt Amy in a half hour - an awesome music video.  
Choreography, setting, music and wardrobe by Taryn.

you . are . so . sweet

Sunday, December 11, 2011

Remembering Traditions...

I love holiday traditions... whether they are new or old.  One of my favorite traditions growing up was going to the Nutcracker with my grandparents.  

It started when I was about 4.  I wore a fancy new dress, and had a beautiful fur coat with my hair ready in curls.  My grandparents would always get a room at the Inn on temple square.  I can still remember how beautiful those rooms were.  So elegant and lovely.  I loved to collect all the mini lotions, shampoos, and conditioners.  I would set them all up on my dresser at home, keeping a piece of the lovely Inn part of my own room.  

here I am in my fur coat waiting in the lobby at Capitol Theater

We would always go to the afternoon matinee show.  I loved seeing who was playing the part of Clara and dreamed of being her.  The music became so familiar to me, and I still to this day can picture all of the different dances and scenes when I hear pieces from the Nutcracker. 

After we had dinner, which was usually at the hotel... we would walk around downtown looking at the lights on temple square and watching the carriages ride by on the street.  I also remember walking past the glass window scenes on the sidewalk of ZCMI.  I always felt so special and happy walking alongside my grandma and grandpa.  

When we made our way back to the hotel room, I would have a present waiting for me.  A new nightgown or set of pajamas... which were usually made by my Grandma.  I would wear them and dance around the room acting out the ballet and playing with either a new nutcracker doll, or clara doll.  There was usually a fun little window seat in the room where I'd sit and stare at the lights across the street, and watch the people pass through with their shopping bags and puffy coats.  

After a few years, my sister Lisa joined in, then my cousin Emily, then our other cousin Tabby, then Amy... until one day it was all the girl cousins.
The last year I went was when I was a Junior in high school.  

This year Taryn was lucky enough to go.  My grandparents got last minute tickets... and even though the Inn on Temple Square no longer exists, and the window scenes at ZCMI are something of the past... the nutcracker remains the same.  

She was thrilled to go.  

We talked about it for days leading up and we read stories of the Nutcracker, watched the Barbie movie of it, and listened and danced to Grandma Mary's book that has a little Clara that spins around and around playing the song over and over and over again.     

Taryn has talked about her favorite part every day... "The part when the tree grows and the magician raises his hands and it gets bigger and bigger!!"

She was so excited to show off her new dress!

as far as her Christmas list goes, this is what she wants:
1. Pretend Puppy
2. Barbie
3. Nutcracker

I love that she got to experience the magic of the Nutcracker with my Grandparents, and I am glad they got to experience it with her.  I'm sure it will be a memory she will hold onto and cherish, just as I do.  

practicing her ballerina moves

                                                                                           Grandma Great and Taryn in their matching red coats!

Monday, December 5, 2011

Seeing the light

We are in remission!

Yup, REMISSION!  I never knew that word could bring me such joy....

Yesterday we "checked in" to ICS ready to start round two.  They really need like a concierge and some sort of baggage claim area... at least for us.
We had wagon after wagon loaded up with so much stuff.  Most of it we had never even unpacked from the back of my mom's car.  I figure we might as well make this room feel like home since we will be contained there for the next few weeks.

As we were unpacking and adding our glitz to the bare walls, one of the many docs came in to give us a run down of our plan for this round.  After talking for a few minutes she said, "oh and I have some good news for ya!  Tenley is in complete remission!  Everything came back clear and there were no signs of any cancer!"

I couldn't believe the news!  I wasn't expecting to hear about the bone marrow results until later this week.  I didn't even know how to react... this means her body accepted the chemo and she is less likely to relapse.  To me, this determined everything.  From an outward appearance, I knew she was doing well and was obviously feeling great, but I was so worried about the clockwork inside and what was really happening to her body.

Now I know.

It is hard for me not to just expect the worst... and to assume this is just my course in life and the scary hard road is what I have to go down.  It's been engraved into my mind ever since experiencing the loss of my Dad and how much bad news we received day by day.

Even through the many blessings and miracles, Satan still finds ways to drown our spirits and tries to make our worst nightmares come to life.  And they will if we let him.

Not today.  I was not going to let those thoughts overtake me.  This time I am on the winning side, and I have full confidence that Tenley will continue to stay in remission and we will make it through these undertows that keep wanting to pull us down.

Last night after I got Tenley to sleep (at 10:30!!) I laid down, but felt so much emotion surging through me.  I cried with an overwhelming gratitude to Heavenly Father thanking Him for answering my prayers and the many prayers of others.  I felt astonished seeing them answered right before my eyes.

I cried because I read this and it made me miss Robbie more than ever.  I wanted him to be here to hug me and share this exciting moment... knowing our baby was thriving and fighting, giving her all to conquer this demon.
I cried because we were starting the chemo process all over again.  We had built her up, brought her back to herself....only to bring her back down.
I cried because I wanted all the hard parts to be in the past and to leave them there... I don't want them to resurface.

This time will be different though.  This time I will have the reassurance that after the storm we will see the sunshine again.  For this is just a short season and one that I am grateful for.  Without it I would not feel His love so strong and pure.  His spirit so close, at times I feel as if I am in Heaven.

I know I am being molded into the daughter He wants me to be... and one day I will tell Tenley the story of how she shaped me into the mother I could only dream of becoming.

Friday, December 2, 2011

Feeling Strong

Today started off with me and Tenley heading out the door at 7:30am.   We picked up my sister Lisa after Tenley had been screaming in the car all the way to her house and she continued until we got to Primary's.
She has always hated being in her car seat... especially if Taryn isn't there.

We got to the hospital right on time and Tenley chilled out.  She was even willing to wear a mask throughout the halls!  After going to a few different floors and doors, we found our way to the bone marrow clinic.  This is where the kids who are outpatient come in to get their chemo.  For us, we were just getting some labs drawn, vitals, and a review of the last couple of weeks with Dr. Wright.  (who I love by the way... she is just that... Right!)

As we sat there waiting, Lisa blew bubbles and Tenley loved it.  Then we played with the stethoscope...  Tenley really has caught on to these medical tools that are used on her almost daily.  She had fun playing doctor, and kept putting them on and then folding them up and waving bye bye like she was all done and leaving the room.  So Funny!!  Lisa and I were getting a kick out of it!

When the nurse came to draw blood from her line, Tenley handed her one of the lumens like, yup... I know just what you need.  I was so glad she was being so willing and easy going... Having an ANC of 1,000 really makes a difference!  So far everything was running on time and there was hardly any waiting involved.  

For the few minutes we did wait for Dr. Wright, I heard a little boy in the room next door.  At first I thought he was yelling, but then Lisa and I stared at each other when we realized he was throwing up.  Hard.  Then he would cry the saddest cry in between.  
It was awful.  My heart ached thinking of this little child being overtaken by this poisonous chemo.  It all seems so unfair.  I teared up and Lisa started crying.  We sat there stunned realizing what world we were dealing with.  These kids endure more then they ever should have to.  It makes me want to bottle up the good days like today.  Monday we start chemo all over again.  I am praying it goes as well as last time (hopefully even better now that we are starting with higher counts!)

After talking with Dr. Wright we made our way to RTU and soon met the anesthesiologist.  I am drawing a blank on his name, but Lisa (who worked at Primary's for years) said he is like the head honcho for anesthesiology.  Yes!  It was comforting to know we were in great hands.  Immediately I thought of the numerous prayers being offered upon us, knowing we were being blessed.  Soon they were ready for Tenley.  I took her into the room where there were about 7 different nurses and doctors, and after some crying from Tenley and getting the medicine into her line, she was falling asleep and calmed down.  

Lisa has watched a lot of kids be put under and said, "now this is the part where most parents start bawling."  I know having Lisa there made me feel like I didn't need to freak out and worry about Tenley... so we walked across the hall and grabbed a quick breakfast.  About 30 minutes later Tenley was waking up and was so delightful!  Completely different than our first go with general anesthesia.  The doctor explained that it can be very different each time they come to, and it depends a lot on how they feel that day in general.  After he said that, the light bulb turned on in my head and it made total sense as to why she was so hard the first time.  It was our 2nd day after being admitted and her counts were super low... plus we were all sleep deprived and emotionally drained.  Yeah, no wonder she flipped that first time.

After eating some goldfish, sour gummies, and sipping oh you know... diet coke.  
We were good to go!  Just like that!  We had been there a total of 2 1/2 hours... that seemed like a blink of an eye compared to the weeks I spent there last month!  

Dr. Wright helped me feel less stressed when she told me 85% of the kids are in remission at this point.  She seemed really upbeat and positive and I asked her if having Tenley's ANC jump from 200 to 1000 in a few days time is a good sign of being in remission... she nodded her head and said of course that is a good sign.  We will know for sure next week when they have the results from the procedure today.
I am hopeful at this point and feel like Tenley is fighting the good fight!  

Tonight I was thinking back on the month before her diagnosis.  Her personality was not there.  It wasn't like it all happened overnight, so to notice it wasn't very obvious to me... but she was so whiny, sad, only glimpses of looking happy, never wanting to walk around, only wanting me to hold her.  Now seeing her, I can totally tell what we had been missing.  She is such a happy little gal!  Scrunchy smiles, goofy grins, wanting to run, climb, and toddle around.  
Tenley is back and I love it!   

 - Taryn and Tenley riding in the car tonight to see Christmas lights... see she loves having Taryn with her! -