Normal Kid

If it weren't for the feeding tube, no one would know that Odette has cancer.

She is your normal 18 month old child.

She is into EVERYTHING!

She has figured out how to open up all the cupboards.

And empty out anything that is in them.

She loves to push things around on the floor.

Stools, pots, pans and feeding tubes.

She likes to try to sit inside of the pans.

She thinks she so cool because she can go up and down the stairs.

We have two gates up.

We also move the kitchen bench to block the rest of the stairs.

She loves her three year old sister.

Who couldn't love that silly girl?

Probably because she helps her do "naughty" things.

Like climb onto the piano or the window seal.

She loves her even when she tries to carry her around the house.

She loves to laugh.

She finds it funny to crawl real fast after you and then fall down on her stomach.

Peek-a-Boo is one of the funniest games to her.

For some reason biting is funny.

She bites really hard!

It can bruise you!

She thinks it is funny to lick you.

She teases me every day by pulling on her feeding tube.

Three times I put it in today.

I don't think she is laughing about that one anymore.

She loves bubbles.

Even when Josselyn pops them all before she can reach them.

They make her squeal with delight.

She loves our dog.

She drinks water out of the tub.

She sleeps...most of the time in her own bed.

She does most things that any child her age would do.

Except eat food.

I have had to fish paper out of her mouth.

And beads from her sisters necklace.

Maybe that means food is next on the menu?

There you have it.

She is just a normal kid...

With cancer fighting super powers!

Port Update

The last time that I wrote about Odette's port, I was full of emotion and very frustrated.  She and I did survive the healing process after her surgery and just as promised, it was worth it.  So, I decided that it was now time for me to fill you all in on what we think of the port now.

If you look closely by Odette's left elbow you will be able to see the bump of her port.  Since she is so small and doesn't have a lot of fat it is very obvious that it is there.  It is obvious to her that it is there.  She constantly tries to pull on it and if she bumps it, I am sure that it hurts her because she will hold it and cry.  She doesn't like to have her port accessed for a long period of time.  When we were at the hospital last time, it really bothered her.  When she gets her labs done every Monday, she cries for the two minutes that they get her blood and then she is happy and laughing again.  So, the bad really isn't so bad.  (I guess that is easy for me to say...I'm not the one getting poked.)

The good stuff is that she can get as messy, dirty and and wet as she wants and we don't have to worry about getting a line wet and infected (we haven't had an infection since she got her port--AWESOME!).  This is great since her new past time, if her siblings don't shut the bathroom door, is to splash in the toilet.  The very best thing about her port is she can have a bath!  Odette absolutely loves the water.  She loves to stand by the tub while I brush my teeth and try and turn on the water.  If her leg could reach over the side I am sure she would climb right in!  She definitely knows what the word "bath" means.  She loves her bath or shower.  I would have thought she would be afraid of the shower, but she thinks it is great to get her face all wet!

Another One Bites the Dust

SCHOOL YEAR THAT IS!

Today was the very last day of school for the two bigger kids.

I don't know why, but I am always emotional the last day of school.

Maybe it is because I have great memories of school.

Being young was a wonderful experience for me.

Maybe it is because it marks another milestone that my children have reached.

I really don't want them to grow up.

They are so much fun and soon will be teenagers.

Then I am not sure what they will be.

I will for sure still love them no matter what!

Brandt has passed the 5th grade and now is "at the top" of his school.

He can hardly wait to be in the 6th grade...I wonder why?

He had a great year and was very successful.

He learned more responsibility for himself and getting his homework done and turned in.

He also started to grow.

And as he reminds me frequently that he is now almost a teenager!

He is most excited for summer because swim team begins!

No sleep in days for us!

Kathleen finished the 3rd grade.

She is really sad that she won't be seeing her teacher all summer.

She loved Mrs. Bryce and all her classmates.

Her class made a movie and she was one of the stars!

She is excited for summer to be able to play with her friends!

Little does she know...

I am so glad that kids were so successful this year with all that has gone on at our house.

Not a lot of attention was given to them or their school work from me.

Their dad did a great job taking over in that role.

They did terrific! 

I am so proud of them.

They are wonderful children!

Now, on to summer vacation....

I Want a Bad Hair Day!

I am so very excited to announce that our website is up and working.  I am so very grateful to all the wonderful people who helped to make it possible.  YOU ARE TERRIFIC!  There is no way that I would have been able to do any of this without the help I received.

The website is great!  There are still a few little things that need to be done, however, you can now purchase items with our "I Want a Bad Hair Day" logo on it.  Soon you will be able to set up fundraisers, donate to a cancer fighter and make special order purchases.  New items will be added soon as well.  Also, a portion of the proceeds each year will go to help a leukemia fighter with their expenses.  Even with insurance, the bills can add up to a mighty sum!   Thank you all for your continued support and prayers for our family.  We couldn't be here today without you lifting us up!

I hope you all will check it out and share the site with your friends, neighbors and family!

I Want a Bad Hair Day!

Life is hard...

Life is hard...

• when your child has a life threatening illness
• when you have any number of children
• when the weather is yucky
• when your child has cancer for the fourth time
• when a parent passes away
• when your child passes away
• when your spouse is called up for service for an entire year
• when a loved one has strayed
• when your spouse is terminally ill
• when you are out of work
• when you have a mound of laundry to do as tall as you
• when you live far away from your family
• when your dog chews up everything and he isn't a puppy
• when you live too close to your family
• when you are depressed
• when you have teenagers
• when you are single
• when you are married
• when your wife has to have C-Sections
• when your dreams seem so far away
• when you lose your best friend
• when you are a single parent
• when you are self-employed
• a returning "old" college student

FOR EVERYONE!


No matter how hard your life gets...

• a smile will make things seem better
• remember you are a Child of God and will receive great blessings
• learn from your hardships
• love those around you
• forgive frequently and easily
• endure happily
• pray continually
• have patience
• have hope for miracles to happen
• put your trust in the Lord

YOU WILL GET YOUR HAPPILY EVER AFTER!
(It may just take time.)

Snow

Yes, today was a snow day!  When Josselyn first got up and looked out the window this morning, before she even said good morning, she said, "What the heck?  Mom, why is it snowing?"  Then, she proceeded to laugh and say, "I am going out to play!"  She first got dressed in sandals, a dress and no jacket, but was back in minutes and saying how cold it was.  She then switched to snow boots, dress, coat and gloves.  She had fun running all over for almost an hour!

Family Visit

This last we were all excited to get to see some of our out of state family.  My brother Richard and his wife Becca came up for a day and brought their two little boys.  They are the perfect age for my little girls.  They had a great time together.  Odette thought that Greg was a doll and continually was trying to pull him around.  She was also obsessed with his pacifier and kept taking it away from him.  The two older kids...well they were perfect for each other...both into everything!

Josselyn helped Bryce get dressed in the morning.  Don't you just love the clothes she picked out for him?  I am sure if she could have convinced Aunt Becca, he would have had painted fingernails!

We also went down to the park, just for a few minutes to try the swings and slide out.  It was fun for the little time we were there.  Josselyn and Bryce just wanted to play in the water fountain!

I am so glad that some of my family came for a visit!  It was so much fun!  I can hardly wait until Odette can travel and we can all go and visit all of our cousins!!

Exciting

There have been a lot of exciting things going on at our house.

Here is a quick overview.

Kathleen was brave enough to try out for the swimming team.

She didn't make it, but she tried!

Last year she didn't even dare to swim without a life jacket on!

I am so proud of her!

Kathleen also went to girl scout day camp.

She made candles and learned all about things a pioneer used to do.

She loved making the yarn dolls and has made one for everyone in the family.

Brandt tried out for swimming as well.

He is a fish.

I think both of the kids are in this picture.

He will be swimming at 7 am all summer.

That means he is fast...its early!

Brandt also gave a talk in Primary on the Holy Ghost.

I didn't even help him prepare it.

He did awesome.

I am so thankful he has a testimony.

Odette decided that she can go up and down the stairs!

She also is walking around the furniture like crazy.

She was brave enough to let go and just stand up for a few minutes!

She might just walk sooner than I think!
Odette also is sleeping in a big bed now.
I figured it was better than the front room floor-for both of us!

Josselyn said the Article of Faith in Primary last Sunday.

She loves to talk in the microphone.

She loves to sing "I love to see the Temple"

She brings sunshine to our home, as long as things go her way.
Here is her "mad face".

Rainbow

Josselyn says, "When you see a rainbow, that means its going to be a great day!" 

Hope you all have a great day :)

Chin Up!

You all know that music is somewhere I often find a little hope or strength to continue on.  

I have had many songs lately that have helped me out.

Most of you will think its funny that I have found some peace in this song.

From Charlotte's Web...

Chin Up  

(Click to listen)

Chin up, Chin up

Everybody loves a happy face!

Wear it, Share it

It will brighten up the darkest place.

Twinkle, Sparkle, 

Let a little sunshine in.

You'll be on the right side.

Looking on the bright side.

Up with your chinny, chin chin!

Chin up, Chin up.

Put a little laughter in your eyes

Brave it, Save it

Even though your feeling otherwise

Rise up, Wise up

Let a little smile begin.

You'll be happy hearted once you get it started.

Up with your chinny, chin, chin.

Chin Down, you can't help frowning

Turn round, started clowning.

Think sad your troubles double

Think glad they burst like bubbles.

chin up, chin up

Every time your spirits wilt.

Chin up, Chin up

Give you attitude an upward tilt

Twinkle, Sparkle

Let a little fun begin.

You'll be on the bright side

Looking at the right side

Up with your chinny, chin

Chin up!

Sure, life might be challenging.  

It might not be what you thought it would be at this point in your life.  

However, if you keep your chin up you will see a lot more than all those pot holes in the road we call life.

You will see the flowers.

You will see the blue skies.

Best yet, the sun will be able to shine down on your face!

Mondays

By now I am sure that you have figured out that Mondays are a big deal at our house.

Yes, Monday means the work/school week start all over again.

There are always piles of laundry and dirty dishes to do on Mondays.

It is early out day, which means less time to get those chores done!

We are all tired from our exciting weekends.

It means that once again Friday is five days away.

Monday brings all these things to my house as well.

However, Monday also means several other things.

It is our Orange for Odette day.

(In case you forgot, Orange is for Leukemia)

It always brings tears to my eyes to see everyone on Monday wearing orange.

Doesn't matter if it is around the neighborhood or the hospital.

We see lots of you sporting your orange-even if its not your favorite color.

We are so very loved by so very many!

It is our start chemo day.

We either go into the hospital fora lumbar puncture or we start a different oral chemo at home.

Our next lumbar puncture is June 1st-a Tuesday because Monday is a holiday.

Currently we are doing two chemo drugs at home-6MP and Metheltrexate.

Soon it will be Predisone (steroid) again.

We only have nine more Mondays to go until our final evaluation of treatment!

It is the day that we have our blood draws done.

Our home health nurse, Chris, comes every Monday.

She is one awesome nurse.

She has to access Odette's port and draw 2 mL of blood.

She then takes the blood to the hospital for them to do a CBC.

She can draw Odette's blood in under 2 minutes with minimal tears.

Odette loves her.

So do I.

I have never been one to care to much about certain days of the week.

Now, I am so thankful for each day I am given.

Grateful that Odette has made it through 48 Mondays.

And grateful that she should have many more to enjoy!

The Best Friends

Everyone needs a friend.

Someone to laugh with.

Someone to cry with.

Someone who knows all about you.

Someone who cares all about you even when they do know all about you.
To have just one friend like this is a blessing.
To have many is beyond blessed.
I am beyond blessed.

I have the very Best Friends anyone could ask for.

My friends call me and check up on me.

My friends run my grocery errands on their "time off" from their own children.

My friends babysit my very busy child.
My friends send love notes to me in the mail.

My friends bring over treats when they know I've had a bad day.

My friends put off their own work to help me when an emergency arises.
My friends help me pull my weeds, even though there are weeds of their own that need pulling.

My friends listen to me cry, frequently.

My friends know my girls love dresses.

My friend knows that I love to dress them the same.

 My friend knows that I know how to sew, but knows my time is limited.

My friend knows that making children smile is rewarding.

My friend did a great job!

I have absolutely the Best Friends anyone could ever hope for!
Thank you to everyone who is my friend.
You are loved and appreciated.

Disclaimer: Watch out the next time you do your friendly deeds.  Your picture just may appear!

GI Checkup

Yesterday I took Odette in for her GI check up with Dr. Pohl.  We have been doing check-ups with him about monthly, but we are always inpatient when we see him.  This time it was at the new Riverton Hospital-Primary Childrens Outpatient Clinic.  That is a very nice hospital.  It was fun just like Primary Childrens, but it seemed so big, roomy and amazingly clean for all the traffic I am sure it gets.  I forgot my camera, but Odette was in love with these really tall cylinders that were full of balls, beads and bubbles.  The stuff just floated around as the water changed colors.

For the most part, we got excellent news.  Odette has gained 0.2 kg, which means she is up to 18 pounds!  (We can almost turn her around in the car seat!)  This could be because she has finally quit puking.  For about two weeks now I haven't had to clean up a barf mess.  She is also on really high calorie formula to help her gain weight, so between the two, I think it is working.  I was promised she would quit puking someday, but I had a hard time believing it would ever come.  Prayers are answered, sometimes you just need to be more patient than what I have been.

Since she is growing and looking well, we get to stop two medicines!  Hurray, I think that this should only help her feel more "normal".  We are hoping that stopping the prevacid(helps with reflux) and reglan(helps your stomach empty faster) won't make her start to puke again.  If she does, we just start these up again.  I have to admit, I am really stressing about stopping the drugs cuz I love our puke-free home now, but stopping them also will save big bucks every month and her feeding tube won't be getting easily clogged with the prevacid.

Our last item of business was that Odette needs to have one more scope to make sure that the allergic cells they found in her intestines the previous scope are gone.  Then we will be able to quit the singulair and all her GI issues should be resolved!  We are trying to get it so that she only has to be put out once and do the scope when she goes in for her last lumbar puncture on June 1st.  If this doesn't work out, because GI is such a busy group (it is like a two month waiting period to be seen), we will plan it for July and have it done in Riverton.  I can't believe it...the end really is coming!  I am soon to have just a regular, busy body, moody, non-puking, almost two year old daughter that doesn't have cancer!

Quite the Adventure

Kathleen has been wanting to go and get a pedicure for a while, and of course I am always up for anything other than mopping the kitchen floor.  Yesterday we finally got our chance.  It worked out perfectly because we got to go with our friends that live in South Jordan, right by Grandpa and Grandma so I could have a babysitter for the other kids.  I even left Odette because I wouldn't be too far away if it ended up that she needed me.  (She behaved well and even ate some pizza flavored goldfish!  The only issue was when the wrong button got pushed on the feeding pump and I easily walked them through fixing that over the phone.  Thank you Grandpa and Grandma!)

We first went to Kneaders for lunch.  I didn't take pictures because, well most of you have seen what 8 and 9 year olds look like when they are eating!  It was awesome-Kathleen ate all her lunch and fruit tarts are delish from there.

Next we were off to get our nails done.  I think the girls changed their minds a dozen times of what color to choose.  Me, I of course chose lime green until it was too light and so I went with red.  Kathleen and Lauren each chose pink and Andi was the brave one with turquoise.  (I think I will try that next time--they were way cute!)

Kathleen got some really cool flowers done on hers.

While the girls were waiting for us to finish they were playing outside.  Andi scared them by pushing the honk button on the keys since they were right by the car.  You should have seen them jump!  We were taking longer than the girls wanted and they needed to get something out of the car.  Andi just gave them the keys to get what they needed.  When they came back in they had giant grins on their faces and announced, "We locked the keys in the car!"  Of course we thought they were joking and trying to trick us after the horn honk....

...nope!  We checked it out and there were the keys, right on the driver side seat, with the money to pay for our pedicures.  When asked how it happened Lauren replied, "I sat the keys on the seat, locked the door with my hand and shut it!"  The innocence of youth!  The car has a keypad for occasions such as these, but it is a new car and the code hadn't been memorized (now all four of us have it memorized!) and the spare key was even still inside the car.  The only option we had was to call a locksmith.  While waiting for the locksmith, the girls of course were entertained with their "fancy" new shoes and were using them as wings to try and fly.  We also got a nice picture of everyone's toenails when the sun went behind a cloud.

And finally, after what seemed like hours, Bob arrived to save the day!  Lauren had been told she was going to pay the fee for the locksmith.  We asked Bob what kind of discount he gives to 8 year olds who only have $1.25 in their purse.  He did not have a sense of humor to say the least.

Sixty five dollars later and another silly memory made, we were on our way home.  My final synopsis of the day would be--If you take two girls and two moms out for the afternoon, you are bound to have quite the adventure!

Frustrating Food

Odette hasn't been eating food for a very long time.
She would eat a little every day, but never enough for her to grow.
She is suppose to eat at minimum 900 calories a day.
I can eat that in a couple of bites!
Currently it takes 6 feeds of 5 ounces each time to reach her minimum.
She has had a feeding tube since the first of July last year.
She never learned to drink out of a bottle or cup because I was nursing her when she got sick.
She used to love mashed potatoes and gravy.
It was one guaranteed thing she would eat.
Then Thanksgiving came.
High dose of ARA-C chemo.
Hasn't eaten anything by mouth since then.
Everyday we try to get her to eat.

Odette thinks that squishing her food is what you are suppose to do.
She thinks it is great to hold it close to her mouth and say "Mmmmm".
But it never goes in.
Every now and then we get lucky.
She will drink some water out of her sippy cup.
Not any calories.

We have got all sorts of fun dishes and silverware.
Some bowls stick to the tray so they don't get thrown over.
She has figure out how to get the suction to break and over it goes anyway.

We have tried sweet things.
Sometimes a sucker gets a lick before the floor gets it.
Since she likes to put all food on the floor, we have tried putting it there to begin with.

She kicked it all over.
I think one cheerio got licked.
To her, food is a toy.
Or a choking hazard.
One time, I was making dinner and she wanted the tomato.
I gave it to her.

She played with it.
Licked it.
Sucked out a little juice.
Gave it back to me.
Most of the time, she thinks food is meant for rubbing on her head.

I wish that it would give her calories this way and I wouldn't worry.
Odette's feeding tube is getting annoying.
She doesn't want to hold still.
It only has a six foot radius.
She has figured out how to get out of her high chair.
I thought she would eat if she could imitate her siblings.
So far no luck.
I have been told that steroids make you feel hungry.
As of late, they just make her grumpy and mean.
Not hungry.
I want her to eat.
Life could be easier.
We could go to places.
Like Disneyland.
Until she decides to eat consistently,
I will still continue to give her food to try.
Even though it is hard for me to throw it all away once she is done playing with it.
Maybe someday she will do something other than this with her food.

The Sweet Sound of Laughter

The other day Brandt tripped over the stool in the kitchen. Odette thought it was so funny and was laughing at him hysterically. He entertained her for over a half hour by doing this. By the end, the two of them were laughing so hard there were tears! The sound of laughter was music to my ears!

RTU

Today Odette spent the day at the hospital for her scheduled chemotherapy.  It was so nice to go and say hi to all of her friends, but even sweeter to know that we would be on our way back home in a few hours.

When we go to the hospital now, we go to the oncology clinic.  There we check in just like at a regular doctors appointment.  Odette gets her temperature and blood pressure taken and then they weigh her and see what her height is.  I am so excited that Odette has finally reached 8.01kg, which is a little over 17 pounds!  It only took her 9 months to go up from 7.44, but she finally did it!  Maybe she will get to ride forward in her car seat before she is two.

Once this general stuff is all done, we are assigned a room and we go and wait...just like a regular doctors office, except we get to see more than just one doctor.  No wonder the bills get so high.  They may all be in the room at the same time or all staggered out.  We usually first see the nurse who is really the one that does everything.  She accesses Odette's port.  This consists of some spray freeze stuff to numb the skin and a needle getting poked into her, then the needle is taped down and a dressing cover put over it.  Odette screams the whole time, not necessarily because it hurts-it does hurt mind you, but a lot of the screaming is because she has to be held down and not move.  Then the nurse takes a blood sample to run all sorts of tests on and then administers the chemo.  The one we got today was Vincristine and it is just pushed in through her line in a couple of minutes.

Next we see the Nurse Practitioner.  She/He listens to Odette, checks ears, nose and mouth.  Then they will explain what procedures are being done for the day and check if we need prescription refills.

Lastly we see the Doctor.  All they usually do is listen to Odette, say how cute and beautiful she is and say "See you next time."  Why do they get paid so much?

While these three people are doing their job, we also get visits from the Child Life Specialist who brings toys to play with, the psychologist to make sure I'm still at the same level of crazy, the Nutritionist who makes sure I know how to feed Odette or help her improve on her feeding and almost every nurse will poke their head in just to get a smile and wave from Odette.

Today, we also had a trip to the RTU.  I don't think I have ever written about this place in the hospital, even though we have been there several times.  It is the "Rapid Treatment Unit".  This is where we go to get our spinal taps/lumbar punctures (where they put three different chemo drugs in Odette's spinal fluids to make sure the cancer cells aren't able to survive there) and our Bone Marrow Aspirates (What they check to make sure that Odette has no signs of cancer cells in her bone marrow.).  It is kind of like a mini surgery room.  I get to take Odette back and they give her some sleepy medicine and once she is asleep I leave and they do their jobs.  When she wakes up-today it was only about 20 minutes total-I go back and get her and we are able to go home.  What a great day it ended up being.  Odette came home happy and laughing!  Now to keep her that way since we start the steroids this week as well!

Super Heros

When I was younger, a hero was someone who could save the world.

They wore a bright colored outfit.

They had unbelievable powers.

They were in the movies.

Everyone new who they were.

Everyone wished they could look like them.

Have powers like them.

Be them.

Now as I have gotten older, had more experiences, I know what a super hero is.

They are kids who forgive a nurse after the shots for the day.

Kids who, although they feel terrible, have a smile on their face.

They are kids who have a zest for life and LIVING each day to its full potential.

They are kids who never give up hope, no matter the odds.

They are the nurses who care for and love their patients like they were their own.

They are fathers that take over the mothers job so that the mother can be with her sick child.

They are the mothers who love their children without end.

They are parents who have children lose the fight and they continue on in their lives with courage.

They are grandparents that help make ends meet.

They are friends who shed light in the darkness.

They are neighbors who give up their afternoon to offer a variety of service. 

They are total strangers who drop money into a donation jar.

They don't wear capes or fly through the sky.

They are regular people.

People just like you and me.