Thursday, November 10, 2011

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

Monday, November 7, 2011

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.


Friday, November 4, 2011

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.

Thursday, November 3, 2011

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!!!

Tuesday, November 1, 2011

A New Week Begins!

A new week! It feels a lifetime away from last week. I can't even match each event to each day last week. What a blur.... But here we are, going strong and facing this head on.

Tenley has proven that she is a strong force to be reckoned with! They warned us that by her 3rd or 4th day of chemo, she'd most likely loose her appetite and could get pretty grouchy.
Well, we are on day 6 and she's been eating (most) of the meals and snacking on plenty of goodies! Not to mention, smiling all the while! I haven't stopped praying thanking Heavenly Father for this wonderful blessing.

She basically get's to eat whatever she wants... so Halloween candy, you came at the perfect time. She loves....
chocolate
french fries
goldfish crackers
rice
strawberries
m&m's
loorna doone's - you know mom's just what I'm talking about, the best cookies at the hospital.
and of course... Diet Coke

The only out of the ordinary (but not really) moments I have noticed have been her tantrums. Now, I've seen this girl throw a tantrum before and they can be wicked... but this, this was I.N.S.A.N.E.

On Sunday when I had to change her diaper, her bracelets fell off.
...Whoa... that was it for her.

Like THAT. WAS. IT!!!!

15 minutes later I was sweating, she was sweating, and I think the nurses were sweating.
We're talking arching back, arms and legs flailing, and screaming galore! I finally got her to chill and the nurses decided to change up her benedryl to a different drug. Somtimes the benedryl has the opposite effect. I'm still not positive if it was caused by that, or the fact that she is 19 months old and is used to getting down and playing around to get all of her energy out.
It happened again -luckily with just me there- about 4 more times between Sunday and Monday. I called my mom crying the last time and said I hated seeing her react like this. She reminded me that it was actually a good thing... It shows just how hard she is willing to put up a fight. I'd rather have a tantrum throwing toddler over a lethargic one any day.

Other big news... She walked. By herself. She had not walked for a whole week.
It totally reminded me of Jacob Marley's Ghost from A Christmas Carol. Walking all wobbly with cords hanging down. She was determined though, and I've never felt more proud, it didn't even compare to the first time she walked 7 months ago.

She is becoming more and more used to the idea of having nurses come in and out, scanning her I.D. tag, giving her leg a "hug" with the blood pressure monitor, and checking all the other necessities.
It's been fun getting to know the nurses. They are all our favorite. Robbie told the administrator that as soon as we've decided so and so is our favorite nurse, we get a new amazing one and change our minds. They really have the best ones there. I'm sure Tenley will become one of their favorite's too ;) She is pretty irresistible.

I am dying to post some pictures, but I didn't bring my camera cord... so once I get it figured out, I will have a big post of overload pics! There are some dang cute ones.

I can't believe Christmas is around the corner. I have a feeling we will be stuck in the hospital, but we will deck the halls there and celebrate life as it continues on like it always does.
So life of week two - WE ARE READY FOR YOU!!!!

Sunday, October 30, 2011

Blessings from above

I've been taking a break for myself. I started to get sick Wednesday and by Friday I was coughing a lot and I worried whatever bug was in me would make it's way to Tenley. I couldn't let her get even sicker from me not being cautious enough.

Friday started out as a good day. My very best friend Kim came to visit and we gabbed, laughed, enjoyed the food she brought, and Tenley smiled at her as though she was her second mother. Which in a way she is.

My Mom came by as well, and I was still in a cheery mood. Overall we were in good spirits about everything.

Tenley loves to look out the window. She points at the cars, we marvel at the rolling hills covered in fall leaves, the buildings standing tall downtown, and of course I point out the temple to her each time. It's quite the task to move her around that room though. She is hooked up to an I.V. tower with 4 or 5 cords running from her little body and up to this machine. This tower is usually plugged into the wall with an extension cord as well. You can imagine the tangly mess we can get ourselves wrapped into!

As we looked out the window, and traveled back to the crib for diaper changes, then had to get vitals from nurses, then tried to eat some bits of food, that happy cheery mood I had began to dwindle down. I felt so enclosed in this room I'd be spending hours upon hours in. It all became too real thinking of this life we'd be stuck inside. Then I got a cute picture of Taryn that my sister sent me, sitting in the stands at the Olympus football game.

I lost it... totally had a freak out. Here I was finally in Utah with the beautiful mountains I've been aching to be by. For months I have wished so badly I could be with my family... going with them to Oly games, seeing my little sister cheer, eating at Cafe Rio, running to Target with Kim, doing the normal things I love to do.

I'm finally here, but I can't really be here. The realization set in too fast and I had to escape that room before I closed in on myself. Robbie told me to get some fresh air, to go to the game, or just do whatever I wanted to do. I cried the whole way out of the hospital. I wondered what people thought of me, leaving this place like the building was on fire.

I made it to the car and cried so hard. I prayed and cried and prayed with anger and pain. How can I do this Heavenly Father? How can I live in that room? How can I watch my little baby change into this cancer baby? I want to be NORMAL! All I've been wanting was to be here and to live my old life!!! I want to take my kids to McDonalds and not worry about germs every second... I want them to be able to play together and not have all these scary cords hooked to Tenley. How am I going to do this?!?!

My little tantrum made my cold feel so much worse. I calmed down, but my voice sounded hoarse and my head was pounding.

That evening I sat at the computer and read and re-read the messages that so many have left me. I felt a gratitude of love from each and every one. Amy and Connor were playing with Taryn while I sat there coughing and hacking away. My mom called while she was out running some errands and suggested I get a blessing. I had received a blessing from Robbie our first night at the hospital. It was beautiful and comforting, just like blessings always are... but he was there and I was here. It was a Friday night and I knew most of our close friends and family were out. She said, have Connor call his Dad, see if he is home.

He was home, and said the missionaries had just popped in right before we called. My mom walked in the door and we decided to go just the two of us over to the Johnson's home. Doug was dressed in a suit and tie. Of course the missionaries were as well. Those boys were so sweet and listened to our every word as we told them about Taylor and asked where they were from. South Africa, and Seattle. We talked about Tenley and me feeling tired and worn down. While I watched these two young men, I thought of Taylor. I was so happy they were there.

As these three priesthood holders stood tall around me, the one missionary from South Africa anointed healing oil upon my head. As he placed his hands upon my head I felt that power of the priesthood in a way I never have before. It ran through my body and was undeniable the faith this young man had.

Doug gave me a beautiful blessing. It was also powerful and brought peace to my heart. The blessings he offered upon me have made themselves known. They are real blessings from Heavenly Father and I have faith in His words. I know they are true words of God, and all I have to do is accept them.

Before we left the Johnson's, the missionary from South Africa said he wanted to share something with us. He told us that in his patriarchal blessing, it says while he is serving the Lord, his priesthood power will be strong as he blesses those in need. My eyes ran over with tears. I told him I felt that power and how grateful I was that he was there. I'm so grateful that they listened to the promptings of the spirit and came to the Johnson's house that evening. Yet another miracle I have seen in this last week.

So, having my faith rejuvenated, my day off yesterday, getting a lot of vitamin C, and a couple of good night's of sleep, I woke up this morning feeling recharged and ready for this week! I know Heavenly Father is watching over me and will always no matter what.
That is a blessing worth living for.

Friday, October 28, 2011

We Can Do Hard Things

Here I am wide awake. It's almost 5 am. Tonight Robbie took over at Primary's so I could get a good nights sleep. Falling asleep is hard, and so is briefly waking up... all the sudden I remember again why I have this pit in my stomach and my jitters begin to rise. The worrisome thoughts overtake my mind and the tears begin to flow.

I lay next to my sweet four year old wondering how her little mind is processing what is going on. Sweet thing fell asleep with me snuggling her close as she cried because she wanted to watch more of her barbie movie... It was already 11, and I knew she needed her rest too, but my heart hurt as I knew she was also crying for other reasons.

So many people have commented on how much they admire my strength as we start this long road. My friends, that is not my strength. It is yours. Your prayers are like calming medicine to my soul. It is something I find hard to describe. When I feel consumed with anxiety and fear, the moment I say a simple prayer my breathing relaxes, my shaking hands stop, and it is as though I am warmed from the inside out. I know the only reason I am not crying in despair all day long is because of the numerous prayers being offered upon my family and I.
The Holy Ghost delivers them and I feel them, literally feel them.

Yesterday (Thursday) was a good day. Tenley did great throughout the night as her first dose of chemo ran through her little body. As the nurse hooked her up at 10 pm, I didn't know whether to burst into tears, or feel the gratitude of modern day medicine. Such mixed emotions with every single thing.

I want to document the Hard Things we have accomplished so far...

- Hearing the diagnosis.
Very hard... learning the unbelievable is happening to your helpless child was like a slow motion punch to the stomach, but we did it. Slowly, I am adapting to the cancer lingo. The doctors avoided that word along with the "L" word (leukemia) until they were certain. It is becoming easier to say.

- Surgery to receive her picc line (actually is called a Broviak line) as well as getting a spinal tap.
For the doctors this was no big deal, they do it all the time. For us it was a very big deal. It was surgery. The doctors and nurses were kind with their words. One nurse as she was describing the procedure said, "so she is just getting a line in..." She then corrected herself and said, "I am so sorry, it is not a just to you... I understand it is a big deal, and sometimes we forget that because we see it done all the time." As they gave Tenley some medicine to make her sleepy before they took her into the O.R., I told her to be brave and that even though Mommy and Daddy couldn't be with her, Grandpa and other angels would be right by her side. Brave she was... she did great and hasn't bothered with her new little cords.

- First round of chemo.
I stayed the night with her and she slept so well. The nurse had to add some new routines to checking her vitals. Eye drops, and diaper changes every 3-4 hours. As well as the regular checking her temperature, listening to her heart, and getting her blood pressure. Diaper changes are now a little more work.... gloves on, cotton balls added, ointment, and of course the diaper itself. I feel it has been such a blessing that she has been sleeping so well. She hasn't ever been the best sleeper, and I can usually count on her waking up once or twice a night for a bottle. Since being admitted that hasn't been the case. It could just be because she really is tired, but I know her angels are helping her get the rest she needs.

These three Hard Things I can now check of our list! I know we will have many more along the way, but through prayers, scriptures, love, laughter, and most importantly through Him...
We Can Do Hard Things.