home

Yes... it is true!  We are free from the hospital! (for a few days at least) I can't even put into words how thrilled it made me when they gave us the unexpected news Saturday morning.  I was planning on staying for at least another week.
Tenley and I slept in (after going to bed late) until 9am.  As soon as we got up, the doctors came in and delivered this exciting new!  I was so disheveled... leftover makeup smeared on my face, an Olympus baseball Tshirt and pj bottoms on, and a really bad puffy polygamist looking braid.

But who the heck cares cause WE ARE GOING HOME!

I hopped up and down with Tenley in my arms and she squealed with delight!  From that moment on, I swear she knew what was going on.  No one could rain on our parade!  That evening I took down all the decorations, pictures, and banners in her room.  As I did so I thought, this could be a bad idea... what if they change their minds and tomorrow they say, uh nevermind!  I was on pins and needles waiting for the official go ahead. 

Sunday morning we woke up, watched a couple of movies while she received platelets, and an antibiotic. After changing her lumens, and going through the requirements of home rules, we were free to leave!  My aunt and uncle came to help with the last load of clothes and such.  I couldn't believe we were really leaving and saying goodbye to round one!  I don't think I could have stopped smiling if I wanted to.  

After getting a couple of insanely expensive meds at the pharmacy we  walked outside to get into the car. We were outside!  OUTSIDE!!!  Then we were riding in the car!  RIDING IN THE CAR!!! Then the best moment of all was walking into my parents house and hearing Taryn run from the hallway screaming... "TENLEY! TENLEY!!  TENLEY!!!!!"

It was like Christmas morning for them to be together.  Tenley's face was pure joy.  It took her a few minutes to let me put her down, but after realizing I wasn't leaving she was so happy to take some wobbly steps and let Taryn overload her with love and trinkets.

Ready in her "going home" outfit.  

Can you tell I'm super excited!!!  

I've been wearing this same outfit for two days!

We made it outside...

Taryn couldn't wait to put "jewelry's" on her

SO HAPPY!!!

This was today... skyping Daddy while he is at work.  

Tenley kissed him through the computer about 100 times.

She was so excited to see him saying DADA! over and over!

Snuggling on this chilly winter day, watching shows, and Grandma set up the tree.

Could life be any better at this point?!

The only drama we've had was last night getting everything set up...  A separate delivery man brought all the medication, antibiotics, TPN (liquid nutrition), syringes, lines, more syringes, and just what seemed like a boat load of medical stuff.  

It was overwhelming to say the least.

Luckily, about 30 minutes later the home health care nurse came and we walked through everything together.  Most of it was very familiar to me since I've seen how the nurses flush Tenley's lines over and over again.  I can't believe how much medical info I've been able to pick up in just one month.  

I was insanely nervous about doing this all on my own, and of course after the nurse got everything running and had left, one of the pumps started beeping.  

Oh great.  (ok, that was not my real wording)

Tenley had just fallen asleep and now I have to figure out what this beeping means... Code Error 099/45/09415190 - or something like that is what it said.

Really???  W.T.F.

So, I gave the nurse (Dave) a call and he too was stumped.  

Double great.

After he called the pharmacy, they ordered a new pump and ordered the delivery guy come back over.  

In the meantime... Kim (you know, my other half) was getting a bajillion missed calls from Taryn.  She was calling her repeatedly on my phone and on one message Taryn said, hello... hello.  uh hello Kim?  lalalaaa la laaa lalalaaa.... followed by My mom saying in the background in a crying voice, "they said her body isn't.." click

After she tried calling me, my mom, and the house trying to figure out what this all meant, Taryn answered and just said, "my mom is talking to the doctor."  

You can imagine what crazy horrible thoughts were running through her mind!  

11:00 came and she was on my moms porch sobbing hysterically!  I almost lost her to a heart attack!  

Thankfully we were not that deep into trouble.  Just waiting for the delivery guy and nurse to show up so we could go to bed!  At 11:45 they showed up, got us switched and 5 minutes later they were gone and we were ready to hit the sack.  

AWE, can I just say how amazing it was to sleep 6 hours straight!  At 6 am I had to gice Tenley her antibiotic.  Through her line.  The line that runs straight to her heart.  Yeah, that thought freaks me out.  But I did it, and she was fine, and we went back to sleep until 9.

Today has been wonderful.  My girls love being together, entertaining each other, free to walk all over the house, eat together, and just be.  I love being with everyone.  Not driving back and forth from the hospital... not worrying about the schedule of who's with Tenley next, and what Taryn is doing, and having nurses and doctors in and out all day and night.  

Thankful seems like such a simple word to describe how I feel.  

Yet thankful I am for every minute home.

    

Sisters Forever

Taryn has been curious, yet so understanding of all this.  She gets that Tenley is sick and has to stay at the hospital.  She woke up one morning and coughed, then gasped and said, "Mom I need to wear one of those white masks so I don't get germs on Tenley!"
She understands more than I give her credit for.

My Mom told me one afternoon Taryn was pretty tired and in need of a nap, she took her in the girls room and rocked her, then said do you want to lay down in Grandma's bed?  Or Amy's bed?  Or this bed? All of which Taryn cried no...  Then she asked, Do you want to lay in Tenley's crib?
Her answer was Yes.

She laid in Tenley's crib and cried for 20 minutes.

These sisters are never really apart.  They are 3 years apart, but really they have never been apart.  They know life as being together.  Waking up together, eating together, riding in the car together.  All of which I took for granted.  Their world has changed dramatically, and I am so impressed with how well they both are taking it.

Taryn is having sooooo much fun playing with new and old friends, being spoiled by Grandma, getting her makeup done by Amy every morning, and basking in all the attention she is getting.
She eats it up.
But she is smart, and has emotions just like any other girl.  She misses her Tenley, and every now and then she has break downs just like the rest of us.

Monday morning was school.  I was at the hospital, and as my mom got her ready and was driving her to school, Taryn cried saying all she wanted to do was go the the "hostible" and see Tenley.
So what would any Grandma do?
Take her strait to see her sister.

I am so glad she did, because starting that day, Monday November 14th, there are no kids allowed to visit under the age of 14 at Primary's.  Luckily they got approval for this one last visit.  It was just me, Taryn, and Tenley hanging out watching Tinkerbelle, eating yogurt, and playing with toys.

I prayed that their visit would be a special one knowing it may be Taryn's last time there throughout Tenley's treatments.  Thankfully we will have our week long breaks in between treatments, and I am hoping by the time they allow young kids to visit this next spring, we will be done and out of there for good.  I hope.

It was a special visit indeed....

Be Still

Dear little Tenley,

        Remember the last time we were together at the hospital? Almost 20 months ago?  I remember it like it was yesterday.  Especially our last night there.  I had the nurses take you to the nursery so I could get some sleep, but really I couldn't sleep.  I called and had them bring you back at 4 am.  The lights were glowing softly as I stared at your sweet face.  I smelled your little head of dark hair and talked to you quietly.  I listened to you breath. You were so sweet and perfect wrapped up tightly like a burrito, with your head rising up and down to the beat of my chest.
It was our little quiet time before going home the next morning.  

Now I sit here day after day cuddling you just the same.  These last few days it seems like your favorite thing to do is be still in my arms.  Resting at ease knowing the comfort of being held close by Mom.  I am so glad I can provide that comfort.  I wish I could just get inside you and take this all away.  I hold you just the same as those early days of your life.  You listening to my heart, and I listening to you breathing.  I find myself smelling your little head and missing your blonde hair.  A temporary reminder of what we are going through.

These be still moments are peaceful and therapeutic to me.  It is a break from the outside world.  Not many moms get the time to rock their babies as long as they want.  I have felt guilty in the past for not spending much time rocking you and putting you to bed at night.  I love that I can do that now, if anything... knowing that it makes you feel safe and comforted makes me want to do it all the time.  You are strong, you are brave, and you are a blessing to me every day.

We watched this together today, and every word in the song is exactly how I feel.  It made me cry, because it is so true. You'll be here in my heart.... always

I love you sweet girl.
Love,
Mommy

Living the life of AML

AML: Acute Myeloid Leukemia.

That is what we are dealing with day to day.  Actually it is more like hour to hour.  The good and the bad are back and forth.

Yesterday for example... I spent the night and woke up with Tenley around 7:30.  We watched Mickey Mouse and tried eating some oatmeal, then tried applesauce.  Neither one she wanted. I could tell just by the way she was holding her mouth that she had mouth sores.  They go all the way down her throat.  One of the symptoms they told us to expect.

  BAD NEWS = 1 point

As the day progressed we heard good news.  Her ANC count was coming up, which means her white blood cells are making a comeback!  I sent everyone a text with this exciting news!  They are only at 100 (a normal count is between 1500-3000)  as soon as she gets to 500 it's bye bye hospital and vacation at Grandma's!

GOOD NEWS = 1 point

But.... don't hold your breath because good news doesn't last too long in hospital land.  The little broviac line has been giving us a hard time.  Last week it tore and had a small leak which had to be repaired immediately.  Well, that first repair didn't work, so they repaired it a second time... and guess what, that one didn't work either!  So finally at 1:30 am they had the I.V. team come along and fix it as well as place an IV in her hand (because each repair has to have 4 hours to set) and she had to get her chemo, so the hand IV was the only option.
That was last week... back to yesterday... that little line tore again.  In a new spot.  You can imagine my melt down as they had to take off the dressing that covers this line on her chest, and go through all the trouble of fixing it again.  Tenley is not a fan of lying still.  Especially for this deal.  There were two nurses plus me holding her down, while another nurse did the repair.  After getting it all taken care of, I held her tight and snuggled her while she was able to calm down and watched her favorite movie Tangled.

BAD NEWS = 1 point

Later that evening Tenley was in such a good mood playing with me.  She was walking around the room, looking out the window, coloring, and then we danced to some Christmas music.  That was her favorite.  I was feeling so relieved that she was happy, the line was fixed, and slowly her room was becoming more homey.  It even felt comforting to be in this little space we have made our own.

GOOD NEWS = 1 point

Well, like I said before... something was looming around the corner.  It was shift change for the nurses and for me too.  Brett (my brother-in-law) was coming to spend his first night on duty.  The new nurse was impossible to understand.  She was from Mexico and had the strongest accent.  As she was trying to tell me her plans for the night and what meds she'd be starting Tenley on, I felt confused and frustrated not knowing what she was saying.  All day we had been so careful with the newest repair on Tenley's line.  The only thing they pumped into it was her antibiotic.  Which was on a very slow flow.  All of the sudden this nurse was hooking a ton of things up that we were behind on, and I felt like it was all too much.  It was too many fluids making their way into this fragile line, which then goes into my even more fragile baby.

BAD NEWS = 1 point

You can guess what happened next.  Another leak.  The repair was no longer repaired.  I had left and was on my way home when this news came.  I had already thought that it wouldn't hold up, but gave that nurse the benefit of the doubt.  I don't know if it was really her fault, or just the repair itself... but I couldn't take it.  Not again.  Luckily Brett was up for the challenge to be Tenley's knight in shinning armor.  I debated going back up, but decided sleep was in need, and so was the attention of my four year old.  I was so angry with the nurses, for not fixing it right... for not being careful enough.  I called the charge nurse and told him my frustrations.  He said I.V. team would be fixing it as well as placing yet again another IV into her little hand.  He also said they would make sure to keep Tenley comfortable and give her medicine to keep her calm, but not totally sedated.  Wish I could be sedated!

BAD NEWS = 1 point  GOOD NEWS = 1 point for Brett :) 

Thankfully the I.V. team got it right and made it known that they should be called first everytime to fix these things.  OK - lesson learned.... I.V. team rules...  I picture them like this coming in....

they take their job seriously. 

So, today was uneventful.  Which is what I like.  We like boring.  Tenley was restful, cuddly, and of course cute as a button.  Her line is working, and for now the good news is outweighing the bad.  

GOOD NEWS = 1 point + 1 more for this video....

GRAND TOTAL

GOOD = 5

BAD = 4

Family of Four

This weekend had many ups and downs. Tenley finished her chemo treatments for round one on Saturday morning.

Ten days worth... we made it through with flying colors - and floating lights from Tangled!

Robbie also came back Friday afternoon, and that brought a lot of happy smiles from all his girls. My heart calms and my shoulders start to relax as soon as I see him. I know we have so much support from our own family members and many friends... but we are Mommy and Daddy. No one can replace that. To have him here with us makes life feel somewhat complete.

This weekend made me really miss our old life. The usual, pretty boring, day to day stay at home life. I miss waking up with both my girls and watching Disney Junior. I miss putting Tenley in her high chair and dumping cereal on her tray to keep her occupied for a few minutes. I miss figuring out what we should do that day to keep busy. I miss planning dinner...

Dinner for the 4 of us.

Now it rarely is just the 4 of us. Robbie and I are coming or going from the hospital, Taryn is playing with friends and neighbors (which she absolutely loves.) The hours quickly pass day by day, and before you know it another week has passed. Time feels strange. Days and nights no longer have a routine. It's almost like having a newborn again, just living hour by hour whether it's am or pm.

Yesterday was a teary day for me. Tenley was showing the normal expected signs that come along with this process. She had a fever, was very tired, didn't want to eat much, and had the sick eyes all mothers recognize.

Robbie spent the night Friday and Saturday, and he too noticed this change. We went out to dinner just the two of us Saturday night and it was nice to spend quality time with one another. Of course we talked about Tenley most of the night, but we were able to have a few laughs talking about Taryn and her silly personality, checking out the crowd around us, and staring at each other like, what the heck... is this real life?

I love him more than he knows.

By Sunday afternoon we were getting ready to say our "see ya later's." Before we headed back to the hospital, we decided to grab some lunch with Taryn. Just the three of us went to Wendy's. This cute older couple told me how darling my little girl was and it immediately made me tear up. Normally it's, "look how cute your girl's are." -Plural- I wanted to tell them how cute my other daughter is too... Then I went to grab a high chair without realizing I didn't need it.

My head was spinning. How can I sit here and eat. It just felt sad and lonely without Tenley there. My family of four was incomplete. I couldn't stop the tears.

We went to the hospital and Taryn played while Tenley sat on my lap and snuggled. Taryn thinks the hospital is pretty awesome. She loves going with the volunteers to the playroom and making crafts. So off she went to play... Robbie said his final goodbyes and his Mom left to take him to the airport.

I sat there with my baby rocking her. We turned down the lights and closed the blinds. As I sat there holding her and singing her primary songs I tried to finger through her hair that was sticky with medicine she had spit out earlier. At that point I felt her hair coming out more than it should.

Not now... not yet.

I'm not ready for this part. But this part is here. Her cute blonde hair is shedding more and more. I can't get myself to give in yet. Last week was so much easier seeing her acting happy... so much happier than she had been for weeks.

Now it is all too real.

I spent the night with her, held her close and prayed to keep this sweet spirit that has been constant in her room. It hasn't left, and it is a sacred one. I know that as these hard days come, Heavenly Father will stay by my side. I know he will bless my family of four and bond us together in a way only made possible through this experience.

Thankful for Guardian Angels

November 4th.

This is the second year we see this date and remember so much.

The leaves on the ground, the chill in the air, the ever changing autumn skies. They all remind me of this day.

It's a rare thing to see life's broader picture. I never knew my Dad's passing would or could ever make sense. He was so healthy, so young, so strong, my Dad. Why did he have to be taken away from our family here on earth?

Now I see a glimpse of why. Tenley is so young, so strong, and in a short time she will be healthy again. She has pieces of my Dad in her appearance as well as in her spirit. I see it. I know my Dad is with her constantly. If he was given the chance to stay here on earth, but in return could risk seeing Tenley leave it in two short years, there is no way he would take that risk. He wouldn't have given it a second thought.

It makes sense why she has been doing so well through her first round of chemo. Perfect sense. I'm not saying we will never have hard sick days, but I have peace in my heart knowing during those days she will have my Dad and other angels by her side. Helping her in ways only heaven can.

I will never forget the love, service, prayers, and fasting that were offered to me and my family two years ago. It is all too familiar as we go through it now. It warms my heart and I often think of this scripture as I have seen it come to life...

Mosiah 2:17 And behold, I tell you these things that ye may learn wisdom; that ye may learn that when ye are in the service of your fellow beings ye are only in the service of your God.

I have seen the hand of God through so many. It is an amazing thing to see. I know as each of us face trials throughout this lifetime, through prayer and an open heart we can all see this beautiful act. It is a part of our plan being here on earth. He provides miracles through each of us as we listen to the spirit and follow it's promptings. Everyone at one time or another will face life changing trials, but through the atonement we can face them and come out stronger than ever. I know this to be true.

These words from Joseph Wirthlin describe it perfectly...

"The dial on the wheel of sorrow eventually points to each of us. At one time or another, everyone must experience sorrow. No one is exempt... learning to endure times of disappointment, suffering, and sorrow is part of our on-the-job training. These experiences, while often difficult to bear at one time, are precisely the kinds of experiences that stretch our understanding, build our character, and increase our compassion for others... The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with years of rejoicing and gratitude."

As this month begins and we celebrate Thanksgiving, I find my heart ever so thankful for His plan. I know He oversee's everything and when we don't understand the why's and the heartache we face today, He does. He wants us to be happy, to find joy in this life.

Today I find joy in my guardian angel. The one who has sent us many miracles and blessings.

Thank you Dad.

I love you.

PIctures are here....

I finally got my camera pictures downloaded! Most of my card was already filled of pictures from The Andelin family farm/Pumpkin Patch in Sparks, Gardner Village, Taryn dressed as the cutest Minnie Mouse, and my family showing our love for food at Cafe Rio.

All blog worthy events... and I want to get to them at some point.

but these pictures pull at my heartstrings and make me smile all at the same time.

very blog worthy pictures...

Our first day after being admitted into ICS at Primary Children's

messy hair from a crazy couple of nights....

This rocking chair is where we spend most of our time

(puffy eyes from a lot of tears...)

SISTERS!!!!

Seeing each other for the first time in a few days!!

YAY!!!!

Happy drinking a jamba juice...

Playing with her favorite things:

Aunt Lisa's quiet book and Daddy's ipad

BEST

DADDY

EVER

Me and my Kim

The view from our room.

Sweet baby cheeks

One of my favorite moments thus far...

Sipping diet coke, eating french fries, and watching Tangled.

I love you my booga baby!

You make me so proud!!!