Bigger than Life!

On Friday, the kids were out of school.  With the nice weather we had been having, we had planned to go to the zoo and take Odette to see all the animals for the first time.  However, the weather changed all that.  We had a blanket of snow when we awoke, so our plans changed.  It was the best packing snow we have had in a while (at least since I have been at home and able to play in it!). 

 

Brandt and Kathleen had the job of rolling all the snowballs and Katie and I had to use our strong muscles and lift them up.  They were way heavy!  I didn't think that snow could weigh that much!  We had to use the sleds as leverage to pick some of them up!  After each snowball, the kids said, "It needs one more"!  We lost plenty of heads rolling up and over the top!  In the end, we ended up with "Bigger than Life" snowmen.

 

Katie showing us just how big around the snowmen are.  The one behind her earned the title, "The leaning Snowball of Italy".  Needless to say, when the sun came out an hour later, it was the first one to fall over!

 

Kathleen made a family of snowmen, using the sage brush weeds as hair.  They turned out cute.

Once the kids (probably more like mom) were done building snowmen, it was onto the sledding.  (I could just be the picture taker.)

 

Kathleen and Josselyn fit perfectly onto the sled.  However, sledding wasn't enough.  Kathleen, I kid you not, decided she could snowboard on the sleds.  Brandt and Katie of course were very thrilled with this idea!  None of them made it down the hill very gracefully!

 

  

  

 The snow activities ended with a grand snowball fight!  It was a great day in the snow-living life!  Although Odette just watched from the inside with her dad, she still was very happy to have everyone together.  I am sure our trip to the zoo will come soon.  After all, spring is just around the corner...right?!

IF

I have seen the saying "It doesn't get much better than this". 

If this is the case, then why keep trying so hard?  

Why have hope for a better tomorrow? 

I think it will get much better than this. 

Life without sickness? 

Perfect bodies?

Happy Families?  

No Satan? 

It better be much better than this life because that is the only thing that keeps me going on lots of days!

(This is one quote that I strongly dislike.)

One of THOSE days.

One daughter awake crying from nightmares about snakes at 2 am.

Another daughter awake crying at 2:30 am because of a poopy diaper.

One daughter awake crying for mommy at 2:45 am to sleep by her, but she will have to have dad because mom is busy with another little girl and is asleep on the living room floor.

Alarm goes off at 5:45 am.

It's way to early.

Two little girls are already awake.

It's cloudy and yucky outside.

Big kids decide to argue and fight at breakfast.

One kid needs mouth washed out with soap.

Four kids are crying.

One mom is crying and has a broken heart.

Mom has heard "I hate you" too many times this morning.

It's only 7 am.

The kids make it to the bus on time, but with no smiles or happy goodbyes.

I have to say goodbye to my sister for a few days.

Dad can't get out of bed for work.

HEADACHE.

Call the Doctor-"Be here in half hour."

Give one daughter drugs.

Forget to feed the other one.

It's only 8:30.

Get to the doctor 20 minutes late.

Call and order chemo medicine that needs to be picked up today.  

How am I going to get up there?

Girls crying in the car.

Dad's head still hurts.  Very drugged up.

Get home...what a mess!

I sit down and cry.

I can't do this anymore.

I want a room to lock myself in forever, where there is no stressful reality.

Where there isn't so much required from one person.

No time for this right now.

Grab some lunch.

It's some Red Vines licorice and chocolate cereal straws.

Put the girls back in the car to go pick up drugs.

While driving in the car, I hear this song:

I Came To Win

 

I didn't come this far to turn back now, no

To turn my back on all that I believe, yeah

'Cause everything so far is workin' out, yeah

It's even better than anything I dreamed, yeah

 

And I know the war is waging

Waging for my soul

But there's no way you can shake me

'Cause there's somewhere I wanna go

 

And I'm not giving up and I'm not giving in

There's just too much to believe in

And I'm not goin' down and I'm not goin' away

This is my time, it's my day

When there's so much that's at stake

I'm gonna hold on to my faith

And I'm not giving up and I'm not giving in

I came to win

Yeah

I came to win

 

I really want it & I'm not holding back, no

Though it may call for everything in me, yeah

I know it's worth it so I'll do all I can, yeah

Through God's grace I'll taste my victory, yeah.

 

And They say that I can't make it

Or tell me that I'm wrong

But you know I can't believe it

'Cause what I'm feeling is so strong

 

And I'm not giving up and I'm not giving in

There's just too much to believe in

And I'm not goin' down and I'm not goin' away

This is my time, it's my day

When there's so much that's at stake

I'm gonna hold on to my faith

And I'm not giving up and I'm not giving in

I came to win

Yeah

I came to win

(By: Jenny Jordan Frogley)

 

Then I remember why I am here.

I remember what is really important.

I remember that I can't let Satan win.

I remember that I am loved without ends by many people.

I remember who I am and I have renewed strength to continue on.

I get a phone call and someone is going to get the chemo drugs for me.

Take the girls home.

Messed up melting chocolate to cover the desert my sister made.

Doesn't bother me, I just throw it away.

It's not important.

Played with the little girls.

Had a yummy snack with my big kids and talked about school.

Worked together and got our jobs done.

Ate eggs for dinner.

Because fancy doesn't matter.

Talked to my mom and told her I loved her.

Because family matters.

Got one child to scouts.

Got three other kids bathed.

Covered each of my kids up and told them I loved them no matter what.

Because that matters. 

My family is important.  

They inspire me to continue on.

They remind me every day that I didn't come here to give up on life,

I CAME TO WIN! 

Promised Pictures

I promised a bunch of pictures when I finally figured out how to get them off of my camera without a USB cord.  If I would have known, all along on Ken's new computer you could just put your card right in, then I wouldn't be doing this post!  (I think I gave my brain away to my four children!)  You already would have seen the lovely pictures!  Here they are in no particular order.

Last time we were admitted to the hospital, a couple of the other leukemia patients opened up a nail salon in the play room.  Since Odette still had counts, she was able to go and get her fingers painted.  She thought it was cool, but the best part was trying to chew on the bottles of paint.

Hospital visitors who brought us a big bat to "beat cancer".

Odette with her Uncle Nate.  She loves to see him and she also thought it was funny to steal his hat!

Odette and Aunt Lizz.  We love when she comes to visit...it means that mom will go and eat some dinner!

Odette absolutely loves all of her nurses, but she will always cuddle with Andi-sometimes better than with her mommy.  (This is good when I need to eat or shower.  Yes, even though I live at a hospital, I still have the normal tasks to take care of!)

Odette was more than upset when they put the IV in the wrong hand and she couldn't get her thumb out to suck on.  She cried for a couple of hours until the Dr. was convinced that she wouldn't just get used to it.  After 9 months, I think we are going to have a hard habit to break in the future, but right now I am thankful that she has a thumb!

Odette figured out how to reach out and get all the beeping machines.  She figured out how to push the buttons and take the syringes off. 

Kathleen at Cosmic bowling with her dad for girl scouts.  Obviously Ken is taking the picture!

Josselyn outside trying to catch snowflakes on her toungue.  The flakes were huge this day.  She got lucky and got a couple to land in her mouth, but her eyes were covered!  She thought it was great!

"All you need...."

When the family went to Disneyland in the fall, they brought Odette back a shirt.  It says:

"All you need is Faith, Trust and a little bit of Pixie Dust."

By now you should now that I love quotes.  I think that maybe someday, I will have a room that the wall is just covered in happy and inspirational thoughts...kind of like covering your wall with Calculus problems...then you should know all these great things as you get older and be a smarter person...right?  This quote is no different, but I was thinking that it is exactly correct about life.

FAITH

 If you have faith, anything is possible. 

"...the Lord is able to do all things according to his will, for the children of men, if it so be that they exercise faith in him.."   

(What do you want him to do for you?)

"...he that endureth in faith...the same shall overcome..."

(What do you want to overcome?)

"God has provided a means that man, through faith, might work mighty miracles"

(What miracle do you need?)

"Whatsoever thing ye shall ask in faith, believing that ye shall receive in the name of Christ, ye shall receive it."

(What thing are you in need of?  Do you have enough faith?)

If you have faith, then you have HOPE.  "Hope is the best medicine." 

Hope is what makes life a little more bearable...hope for a brighter tomorrow... or a little more sleep for the night...or kids that get along...

TRUST

Trust that there is a reason to why things are they way they are.  If you have trust that things will work out okay, it is easier to accept your life and be happy with it-the good, the bad and the ugly.   If you have some trust, you will be able to find joy.

"...whosever puteth his trust in him the same shall be lifted up at the last day..."

"Trust in the Lord thy God and he shall direct thee."

"...go to battle with [your] might, putting [your] trust in the Lord..."

"But if ye will turn to the Lord with full purpose of heart, and put your trust in him, and serve him with all diligence of mind, if ye do this, he will, according to his own will and pleasure, deliver you..."

 

 

PIXIE DUST

 This is what we all give to each other.  A hug, a smile, some words of encouragement, a prayer, service, dinner, homemade bread (Mmmmm);  with all this pixie dust and a happy thought, we are all able to "fly".  

So really, there isn't much more to life if we have our faith, our trust and our pixie dust!

Playtime

So, every time that we have come home from the hospital in the past, Odette has always felt so sick that she hasn't had the desire to do much of anything.  She usually just would want you to hold her, or sit next to her and hand her toys when she would drop them.  This was okay, because I didn't worry to much about if I got the floor mopped because she was just sitting in the front room.

However, this last time things changed.  Since she has figured out how to crawl, she is everywhere!  She is finally feeling good enough that she wants to explore--everywhere!  (She is obviously feeling better because she hasn't puked for 10 straight days and is eating some rice cereal!)  She thinks that she is so funny when you say, "What do you think you are doing?"  She laughs and grins her cheesy grin and crawls away as fast as she can go!  She looks like a frog when she does this!

Her very favorite thing to do is to try and get the plug safety covers out.  Thankfully I know that she can't do this!  I often need to use a knife to get them out myself! 

I am so glad that she wants to play and giggle.  I don't even mind sweeping and mopping all day long-it is way worth it to see her happy and healthy!

Wonder

• Sometimes I wonder....."if I'll make it through even one more day."  Those days come when you can hardly open your eyes, yet you find yourself making breakfast, washing dishes and doing laundry and think, "when did I get out of bed?"  I guess that means I can make it through another day because someone is going to carry me through the duties of my day.
• Sometimes I wonder...when will the song, "Just put one foot in front of the other", from the Christmas movie, will ever leave my head.  Although, I have to admit that it has been some of the best advice over the past months for me.  Just keep walking and "soon you'll be walking out the door."  Hopefully we'll walk right out this cancer door never to have it open again!
• Sometimes I wonder...does Ken think I do nothing all day?  I am a morning person.  I get up and try and get everything done early, because by 1 in the afternoon I am ready for a nap and the kids get home from school.  But as I was thinking the other day, I wash the dishes in the morning, but by the time Ken gets home again, the sink is full because I have prepared 2 more meals.  I do the laundry, wash and fold and put away, but when he gets home, the kids have come home, changed their clothes and the laundry baskets are no longer empty.  Vacuum, but then you walk all over the carpet and have Josselyn home all day...I am sure you get my point.  I know Ken knows I do what needs to be done...even when it doesn't look like it.  Thank Heavens!
• Sometimes I wonder...is what I have tried to teach my kids getting through to them?  Is it enough to help them be the great, wonderful, successful and happy people that I know they are suppose to be?  Because the last 8 months, I haven't been so good at teaching them anything at all.  I hope they are getting all the information that they need when I am slacking...
• Sometimes I wonder...why do things happen the way they do?  Is there really a reason to some things?  I can see looking back why I have met certain people, or lived in a particular home, but the little things... Why do kids have to get every cold that comes their way?  Some things are just plain annoying and I think that is their only point.  They are the "weeds"  to torment us in life I guess.
• Sometimes I wonder...if people think I am crazy and then I tell myself, "No worries, they don't think, they know."  :)

What a week!

Life is always a challenge when I come home from living at the hospital for a few weeks.  It takes a while for me to get back into the routine of being the full time mom and nurse.  This week has been extremely crazy and full of "interesting" things happening with each child.  Even though it has been a wild week, I have still managed to keep up with everything and smile-for the most part.  Thank heavens that Ken ended up not working all seven days this week so that I could have two extra hands. 

Odette

Has antibiotics four times each day which means that she is "tied" down and can't move as quickly as she would like. Hence she is grumpy unless I am lucky enough for her to sleep through it!  For me, it means really late nights and early mornings.  (On the bright side, I finished reading a book-haven't read a book in years- and crocheting a blanket while keeping myself awake during med time!)  She also has done well with her speech therapy this week and ate a Tablespoon of rice cereal!  Hurray!  She also thinks it is funny to climb one stair, turn around and say "no-no" while shaking her head.  She keeps me running-literally!  I forgot--only 1 puke all week long! 

Josselyn

She is always my entertainer, but this week was a crack up!  Our fridge broke, and so we had a repair man over.  When he came in she looked at him and said, "Are you Santa Claus or what?"  When he didn't answer, she said, "You must be a grandpa then."  When our home nurse comes to take care of Odette, she is always "helpful".  This time, she wouldn't quit hugging and kissing her.  I had to pull her off, to which she responded, "You are the meanest momma ever" and ran up and slammed her bedroom door.  (I thought I still had a few years before the serious drama began!)  On Friday afternoon, she was changing her clothes and started just screaming and crying.  She came down and I asked what was wrong.  She told me a friend poked her ear with a stick (a friend she hasn't seen in weeks) and continued crying.  After two hours of silly stories, none of which made any sense, and non-stop tears, we discovered she had an ear infection.  10 days of antibiotics for her.  That should be a piece of cake-she loves to eat anything pink! 

Kathleen

She has been practicing her piano lots since the group of kids she takes lessons with will be performing at the school for music appreciation week.  She is excited for this, but asked if she could sing instead?  I guess I need to find a choir for the summer.  She also went with her dad on Saturday, cosmic bowling with her girl scouts group.  In her words it "was totally awesome".  Now, I get to sew one more patch on her sash.  We are also playing catch up on her spelling words.  I had her write them three times each and it took 4 sheets of paper!  She is getting really good at her cursive writing as well!  Now if I could get her to keep her room cleaned up!

Brandt

After not having his new glasses back for a few weeks because he broke them playing basketball the first day he had them, he was excited for a neighbor who picked them up for him.  Then, the next day, I got a phone call from the school.  Yes, Brandt had been playing basketball again.  This time, he had hurt his hand and it was all swollen.  After a trip to the doctors office and some X-rays, we discovered it wasn't broken, just jammed really good.  His hand is still really bruised.  He also got to go and see the new "Lightning Thief" movie.  I asked if it was good and he responded, "The book is by far better, but the movie was awesome!"  He also rearranged his room this week and has decided that I need to make him all new blankets because he wants them all to match each other......maybe in all my free time!

PICC line

I would post a picture of Odette and her PICC line, however somewhere between here and the hospital I have lost my USB cable and hence cannot transfer pictures for the moment.  Eventually I will get another one and then I will have a whole post of pictures, but until then I hope you don't mind a lot of words.

Before we came home from the hospital, Odette got a PICC line.(Peripherally Inserted Central Catheter)  She needed to get this to replace her central line that was removed due to infection.  It was suppose to be something that could be done "bedside" with minimal anesthesia.  However, Odette had the max dose of anesthesia and was still so wiggly that it was unable to be done. Since she maxed on the drugs, they had to wait until the next day to try again.  This time they took her to flouroscopy.  (No idea how to spell it, but it is where they use lights to see the veins.)  This time they were prepared for her and got it in quickly, even though she was still awake and moving.  Thank heavens!  Her poor arms look like they have been used as pin cushions.  (Oh wait, they had been-4 IVs and 4 days of blood draws!) 

The PICC line is temporary until it has been a few weeks of antibiotics to insure she doesn't get another infection with a new line.  It works the same way as her central line did.  We also need to decide, since she is older (I would say bigger, but she isn't) if we want another central line or a port.  A port would go under her skin and then she could play in the water all she wants and there is nothing for her to chew or pull on.  The downside is she would need to get poked to access her port at least once a week...there is numbing cream  though.  Right now, the PICC line is great.  I just cut a tube sock in half and pulled it over her arm and she doesn't even notice anything there!   Now our biggest problem is the diarrhea from all the antibiotics-2 antibiotics already for 10 days!  Her butt is struggling!  Thank heavens I have the greatest butt cream ever! (Thanks Dad)  I have tried 4 kinds of diapers and nothing seems to hold it in...the best are the Pampers Cruisers, but even they have their moments.  Oh well, once she is done ruining the carpet we can get hardwood floors!!

Half Way

We recently (yesterday) returned home from finishing our round of chemo that marked our half way point.  I know!  It seems that we have been at this forever and I know most of you are worn out from having extra children, cleaning my house and running my grocery errands for me.  (Aren't you thankful for winter because you haven't had to help take care of my yard for almost 4 months!)  It has taken us 8 months (well in two more days it will be) to get to this point.  Fortunately it shouldn't take us 8 months to finish up the second half of the treatment because it is the "easier" chemo.  (The doctors say easier, but after last week I don't know that I would agree with that.)  We should be home for all of the treatment except for another two week visit in April.  For this I am really excited.  Maybe we can actually be a family again and be done with this "divide and conquer" craziness.

 I have given up on counting how many transfusions and tube replacements Odette has had.  All I know is it is a lot and I am going to need to be donating blood as often as possible for the rest of my life!  I am just grateful that we have lived through stuff this far and are able to tell the tale of our fighting princess, who wakes up with a smile each and every morning.  (That is hard to do even without a lot of crap going on in life.)   I am thankful to all of you who have helped us make it this far.  It definitely isn't a short or easy road to walk on with us.  (If you get tired and need to take a break I completely understand! )  I am also very grateful for a supportive husband who tries hard to help me with all that Odette requires and all that I don't accomplish during the day and three other little kids that are trying hard to be patient.  I also am very thankful to a loving Heavenly Father who compensates for my weaknesses and gives me the strength I need to make it through every day when I usually don't have the energy to even get out of bed (or off the couch).