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.

Rocking.

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!

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

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!

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.

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! -

our new routine

Have you been wondering what we have been up to?  

Well... for starters, we live indoors.  Not much escaping this house... which I like, but it also gets pretty boring.  

This last weekend was great.  Robbie came to town!!  The moment he saw Tenley was priceless.  He hadn't seen this girl of his for while.  A lot has changed since he left.  Last time he was with her she had blonde pigtails, was living at the hospital, and pretty much was at her very worst the day he left.  So to see the changes in person was a tender moment.

Thanksgiving was easy going.  Just our family of four, my mom, and my sister Amy.  We did something totally foreign and ordered our dinner through Harmons.

Yep, that happened.

Note to self (and mom) - never ever do it again.

I guess it was fitting for our circumstances.  We tried our very best not to complain because on Thanksgiving complaints aren't really allowed... that would be like an oxymoron or something.  

Really what mattered was that we were together, in a warm house, enjoying each other, and the blessings we have.

Now - being home, you'd think it was this big break. Well, mostly it is, but there is also a lot to remember and keep up on.  After having home health come the first 2 nights, I was on my own.  Not completely, I definitely made phone calls to make sure I was doing everything right, but it was me... all up to me to get Tenley's meds going.

Taryn wearing the backpack with Tenley's TPN and helping Tenley walk with her cords

Here's what our schedule looks like:

6am  2pm  10pm - antibiotic flush.  This means I have to clean one of her lumens (one end out of the two lines that are part of her broviac central line going straight into her heart) with an alcohol wipe for 15 seconds, then it dries for 15 seconds.  Then I push a saline solution into it to make sure it's all clear and ready... then the antibiotic goes in very slowly.  I push 1/2 cc every 30 seconds, about 5 cc's worth.  Then I flush it once more with another saline syringe, clamp it off, and we are good.

At night starting around 7, I start getting her TPN and lipids ready.  These are bags of liquid nutrition that run 12 straight hours.  The TPN I usually pull out of the fridge around 5 so it isn't so cold.  Prepping all of this takes a lot of concentration... for me at least.  I have to add vials of vitamins to the main bag, using a syringe with a big needle.  After adding that, I get the lines ready and have to prime them with the liquid running through them.  This means I get two machines to hook the lines into, then go through the program on the machines making sure they are set right and after priming them I have to clean Tenley's lumen and hook it all up.  I'd say only half of the time I get it completely right the first time.  Usually there is some sorta kink, air bubble, or just something not working right...

(see I am seriously concentrating, and Amy has become my assistant... oh and Tenley fell sound asleep this night while I was getting her all hooked up.  Normally that doesn't happen)


THANKFULLY Tenley started eating enough that we were able to stop doing this 2 nights ago!  

WHOOOOOOOOT WHOOOOOOOOOOOOOOT!!!!!!!!

So now I don't have to worry about cords, beeping machines, and wondering if I am doing it all right!  

But oh how I miss our old bedtime routine.
Bedtime... oh man, bedtime used to be so easy for us.  We did baths, jammies, and once 7:30 rolled around, all it took to get Tenley to sleep was a warm bottle of milk and some rocking.

That was it.

Nigh Night.

Now, we have no routine whatsoever.  None.  Nada.

It is survival mode with sleep here.  There is no certain bedtime.  10:00pm, 1:00am, 12:45am, 9:00pm.  It doesn't seem to matter.

Some nights I'm rocking Tenley for what seems like 2 hours.  Others she has ended up in a twin bed with me.  Last night was a dream come true.... Since she isn't hooked up to the machines, I don't worry so much to just let her have a little fit and cry it out.  I got her in bed before 11 and after rocking her and giving her a bottle (yes, she is liking them again!) I put her in the crib and after only 10 minutes she was asleep.  Then I heard her cry for a minute around 4 am.  Next thing I knew it was 8:45.  Taryn and I slept together in my mom's bed.  I was the first one up.  The FIRST ONE!  Yes, I did push the dismiss button on the 6 am alarm for her antibiotic, but a few hours late wasn't going to be the end of us!  We needed sleeeeeep!

I feel like we are finally starting to get back on somewhat of a schedule.  Maybe.  At least until we start this next round and go through it all over again.  Tomorrow we have labs drawn and will find out what her counts are.  If her ANC (the main overall white blood count) is up to 500 we will go in Friday morning for a Bone Marrow aspiration, as well as a Lumbar Puncture.  This will help them to see how well the chemo worked.  The goal is to see her in "remission."  Then the next few rounds of chemo will be to keep it all away for good.

I am crazy insanely over the top worried about the results these tests will bring.  I sooooo badly want them to bring good news.  I want that dang cancer to be dead!  Killed off!  I know all of your prayers make the world of difference...
So I am asking you to each say a prayer that we will have good news.  That this process is working and the cancer is being killed off.  I know having faith is key.  I need all of yours.

My batteries have slowly been recharged being at home.  I'm still not sure when we will be admitted to start phase 2, but I know it will be soon.  Prayers are what keep us going...

So when you begin your bedtime routine and say your prayers,  please keep my Tenley a part of them.

The Faith of a Child

Matthew chapter 18
1 At the same time came the disciples unto Jesus, saying, Who is the greatest in the kingdom of heaven?
2 And Jesus called a little child unto him, and set him in the midst of them,
3 And said, Verily I say unto you, Except ye be converted, and become as little children, ye shall not enter into the kingdom of heaven.
4 Whosoever therefore shall humble himself as this little child, the same is greatest in the kingdom of heaven.
5 And whoso shall receive one such little child in my name receiveth me.

We are told multiple times to become as little children in the scriptures.  It is obvious that children have unwavering faith.  They don't question the why's and how's of the world.  They live simply, and follow what their hearts tell them.

A sweet girl I know named Lilly is the perfect example of this simple and unwavering faith.  Lilly is the little sister of my sister Amy's friend Adelide.  She is thirteen years old, autistic, and has the most vibrant personality of anyone I've ever met...  Through the last few years my family has grown to know and love Lilly's family.  Her mom, Sara, is one in a million.  I would describe her as the salt of the earth... she is warm, nurturing, kind hearted, and beautiful.  She is also one of the best cooks I know!  There have been numerous occasions when I hear Amy saying what an amazing breakfast, lunch, or meal she's had in their home.  

Lilly loves her mom's cooking as well.  

This last week in her young women's group, they challenged the girls to fast for someone.  Lilly had never fasted before, but she wanted to for my little Tenley.

Friday morning she got up to go to school, and before she left, she and her mom said a prayer for Tenley.  She left not having any breakfast... and when Sara picked her up that afternoon she was happy to report she had made it all through school without eating anything, and had kept a prayer in her heart remembering Tenley.

After school they went to Costco.  Now of course Costco is the place for food samples galore.  As they walked through the store, Lilly told her mom she wasn't feeling so good.  Sara told her it was ok for her to eat something.... that she had fasted long enough and Heavenly Father knew what was in her heart, but Lilly was determined to make it 24 hours.

She told her mom she felt weak and thought it would be best if she sat in the cart.  So as they made their way through Costco, she sat in the cart and closed her eyes so she wouldn't feel tempted by all the samples of food.

Lilly made it the whole 24 hours.

The next morning was Saturday.  The morning that brought me unexpected joy...  You see, the doctors who have watched over Tenley had already made up their minds that she would not be ready to go home for her first break.  None of them were prepared to send us away, but somehow Tenley's counts made their way up, just barely enough to change one of their minds.  Dr. Lemmon, who is the head doctor of the Oncology department made that decision.  He as well as a few other doctors came in to deliver that news.  I could hear the confidence in his voice as he said Tenley was well enough to leave the hospital.  The other doctors kind of raised their eyebrows as to say... surprise!    

After hearing about Lilly and her determination to fast... even though it was hard for her, I am positive this miracle came because of her.  Who's to say her faith wasn't strong enough to do so? 

I believe it was.

On Sunday we were discharged, and Lilly was brave enough to stand in sacrament to bear her testimony, a strengthened and humbled testimony.  It was another hard thing for her to do.  She is shy and has a hard time talking in front of a crowd, but she told everyone about the miracle she was a part of.  That because she chose to fast and stayed strong, Tenley was able to go home.

It brings tears to my eyes to tell this story.  I truly believe that she changed our course.  It has been such a happy time at home, surrounded by family, and being here all together.  I can't even describe how thankful I am for her unwavering faith.  

She will forever be a part of the miracles we have been blessed with through this journey. 

Lilly, this thanksgiving I am especially thankful for you. 

Adelide    -    Lilly    -   Sara