A Play

Our family got the chance to go to a play on Tuesday.  We don't get to do a whole lot as of late, so this was really fun.  It was a play put on by Kathleen's girl scout troop.  It was absolutely adorable, with the very best actors ever and was the perfect length of time!  Even Josselyn sat still through the whole thing! 

This year the girls have been learning all about water.  Their play was about what you can do to conserve water.  The girls wrote the play all themselves.  Kathleen was a water droplet that was saved by a girl scout because she didn't waste water.  You can save water by taking shorter showers, watering a tree instead of poring water down the drain and swimming in a lake instead of a pool.  At the end they sang a cute song about the water cycle.  Great job Girl Scouts!

Kathleen has had a great time this year in girl scouts.  We are sad that next year we won't be going to this troop and will need to find one closer to home for her to be a Jr. girl scout.  However, she has made some great friends that I am sure she will be keeping in touch with!  Thanks Andi for a great girl scout year!!

Couldn't Resist

What do you think her hair will look like when it comes back?

Playing dress up was way too much fun! 

I personally am voting for red with a little curl.   

Only time (a month or two) will tell!

Hospital History

Today Odette surprised us all by making her counts go from 0.1 to 0.6!  This meant that she was able to go home.  Of course I was very excited, so when the nurse told me at 5:00 in the morning, I almost called and woke everyone up!  I was packed and ready by 9:00 so when the Dr. came in he said, "I guess I am a little late to give you the good news!"  Odette new that something was up because she played, for the most part, happily in her crib while I took two wagon loads of stuff out to the car.  After I took all our stuff out to the car, it was Odette's turn to ride in the wagon.

  She was very excited to sit and play in the wagon while we waited for everyone to do their part so that we could leave.  While waiting, I was very emotional.  Of course I want to be at home with my sweet family, but the nurses here at the hospital have become part of my family.  They have loved us, cared for Odette like she was their own and watched her grow up from infant to toddler.  (She is going to walk soon!)  For some, I know more about the nurses and their lives than I do with my own real family.  I love all the staff at PCMC.  They are truly terrific!  Finally the heprin flush was sent up and we were able to unhook Odette.  I signed our release papers and we went out into the hall...the first time in over a week!

Since it was Odette's last in-patient chemo, it was her turn to ring the bell to say she had made it.  I was already tearing up and to see the smile on her face and see how excited she was to ring that bell made my heart overflow.  As she rang the bell, all the nurses in today came to cheer and say farewell.

Odette didn't want to stop ringing the bell, even though it says to ring it three times.  To her it was an exciting new toy that she was disappointed she hadn't discovered earlier.  What an awesome feeling to know that our stays in the hospital are history.  (Providing we don't get any fevers.)  We are moving on to our brighter tomorrow that I often thought would never come.  In a few short weeks, Odette will be completely done with her treatment and be able to say, "I did it!  I am strong enough!"  Farewell to our great new friends.  We will never forget you.  You will be a part of our hearts forever!

(And of course we will be back for visits...wouldn't want you to miss her laughter for very long and I know she will want to show off her new pigtails!)

WHY?

Why is the sky blue?  Why do I have to brush my teeth?  Why does the dog get to sleep outside and I can't?  Why can't I play with my friends?  Why am I sick?  Why can't I wear the same clothes everyday?  The why questions go on and on with a three year old child.  However, I don't think that it is just little people that ask.  To ask "Why?" is in our nature.  When talking to a good friend about trials in life, she said she was still stuck at the "why" phase.  In return she said I probably completely understood and was past this part.  Yes, I do understand the questioning "why" phase and actually haven't moved out of it myself.  My biggest "why" is "Why can't just all the people who choose to smoke get cancer because they chose to.  Little people didn't choose to get cancer-they are perfect."  However, in contemplating "why" for the past months and years on somethings, I have come to some conclusions.

You will probably never completely know or understand why in this lifetime.  Don't let that bug you.

Don't dwell on why because you can't change random dumb luck.

Sometimes you will get a small glimpse of why...learn from that.

Othertimes, those around you will get an answer to a why by watching you.

Most of the time "why" seems really unfair and unreasonable.

Don't question why for to long or you will drive yourself crazy!

When all is said and done, all your "whys" will be answered and you will see with perfect knowlege.  Your entire crazy life will make complete sense.

Until that day comes

Smile

Pray

Live

Work Hard

Laugh

Be Positive

Love

and Hold On.

In time you will have your answer.

Down are the Counts

After enjoying eight days of freedom to roam the hallways, Odette's counts have finally dropped.  It has been really weird because they were up so very high for a while and then in one day they were gone.  I am actually really thankful that they are finally down because now we can pray for them to come back up.  Once they start coming up, Odette will get to ring the bell and we will be on our way home! 

Odette is really sad that she isn't allowed out of her room anymore and will cry while she sits in her walker banging on the door.  Mom just isn't as cool to play with as everyone in the hallways.  She is sleeping a lot more, so hopefully that will help her feel better.  It is just the waiting game now and praying for no fevers.  It usually takes about a week for her counts to start heading in the upward direction.  Maybe this time we will be lucky and be home for the beautiful weekend!  (It's amazing what a positive attitude can do!)

Ten Months

Ten months ago today:

I didn't even know how to get to Primary Childrens hospital.

Now, I could drive here with my eyes closed.

I knew leukemia was cancer.

Now, I know in detail how it works and how to treat it.

I thought the best pain killer was tylenol.

 Now we aren't even allowed to use it - oxycodone is better.

All the faces at the hospital were unknown.

 Now they are some of my best friends.

The white hospital walls were lonely

 Now I know I can decorate to my hearts content.

I would push the nurse button for everything because I was uncertain of what was going on. 

Now I push it because I only want to be the nurse at home!

Getting Odette a feeding tube seemed unreasonable. 

Now I know it is the best way to help her.

Listening to the Dr. talk was frustrating because I didn't speak his/her language.

Now I have knowlege and can speak in medical lingo.

Puke was something that Odette never had done.

Now if it doesn't happen daily I am surprised but celebrating.

I missed the flowers at my house that were just beginning to bloom.

Now, I get to enjoy the new blossoms from my living room window.

I knew medical bills could be expensive.

Now I know why people put jars out with faces at the Artic Circle.

Projects and perfection mattered to me.

Now, I know my family and doing my best are what is important.

We were the new diagnosis.

Now, my heart breaks each time I hear the words "new diagnosis".

"How am I going to do this?", was my main question and concern.

Now, the answer to this question is through YOU and the SAVIOR I will do this.

A "year" of treatment seemed like an eternity.

Now it is only 3 months away.

Tears came freely.

Now, they still do.

There was much fear.

Now faith has replaced it.

The darkness that engulfed me when I got the news was tangible.

Now, hope prevails and light surrounds me.

I wished that this wasn't happening to me and my family.

Now, I am grateful for the blessings I have received.

The Three P's

Today was a day of record setting with the three P's for Odette.  I think I will want to remember this...someday, so here are the records.


PUKE:  I knew the day was coming for the chemo to hit, but I was secretly hoping we could bypass the puking phase.  I, of course was wrong.  Today Odette managed to puke and completely drench herself twice, puke out her tube and soak through a few layers of bedding.  I guess we will up the anti-medics frequency and slow down the food rate and see if that will be helpful.  Poor Odette was trying so hard to not puke but was unsuccessful.  Hopefully today will be the only bad puke day.

PEE:  You know when you have a new baby and every time you put them in the bathtub there is a fountain?.  I thought we were way past this stage, but once yesterday and once today, Odette managed to soak her bed when her diaper was being changed.  What did she do?  She laughed, sat up and tried to splash in it!  I think she is going to like swimming this summer!!

POOP:  Since Odette has been sick, she has always had lots of poop.  (dang antibiotics!)  It isn't unusual for me to have to change my pants because she has gotten me.  However, today she set a new record!  She was playing in the crib and the nurse said "I think she stinks".  Odette, of course can't make it easy to change her diaper, and tries to crawl away.  It is on her legs, feet and stomach.  We get her laying down to try and clean her up and she gets it on her hands, which in turn grab me.  After going through four layers of bedding, a dozen cleaning wipes, a couple of changes of clothes (Yes, I had to change mine too!) and lots of laughter from everyone in the room, we had the mess cleaned up!  This was definitely one for the record book!

This week

THIS WEEK

• Has been out of control crazy!
• I haven't been able to find a computer to work.  If I find one it works until I need to put a password in, or the one I have now is missing a lot of "stuff" on my screen.  (Sorry if this post looks retarded!)
• Odette finished her five days of chemo with only one puke and only one tube replacement!
• Odette has made a new friend with a little boy who they call Critter.  He is a precious little boy that for his first birthday got diagnosed with AML.  Odette grabbed his hand and started talking to him right away.  It was almost like she was telling him everything about the hospital and that all will be ok.
• Brandt is anxiously awaiting going to Clear Creek on Monday-we actually got him packed on Wednesday!
• Kathleen can hardly wait for the next girl scout meeting because they are putting on a play for all us parents!  She is also so very excited for day camp with her scout friends in May.
• Josselyn is no longer allowed to eat chocolate because it affects her just like her daddy--she is even more naughtly and mischevious than usual.  ( I know, you didn't think that it was possible!)
• The kids and a great friend helped me to plant asparagus.  Hopefully it won't die while I am away.  Brandt assures me that he will take good care of it!
• Odette's counts still haven't dropped.  We are waiting for them to drop and then we give her some nupogen shots until they start coming back up and we can go home!
• I discovered the best cookies-they are like oreos dipped in chocolate.  Mmmmm....no wonder I look like I do!
• Odette is still walking the hallways and smiling and waving at eveyone.  She melts everyones hearts, including mine every time she says hi and does her big cheese smile.  (When I can get pictures I will.)
• Odette's other favorite place of the hospital is sitting in her window seal watching the cars.  We have a view of the parking garage.

I'm glad this week has come to an end, and I am so excited for next week.  That light at the end of the tunnel actually is there and is getting brighter every day!  Thanks to all of you who are hanging in there with us until we reach that light!

Mixed Emotions

Today is the beginning of our very last inpatient chemo!  I am so very excited to know that we are nearing the end of living at the hospital.  Maybe the feeding tube will come out soon and other than a bunch of oral medicines, life can return to what we called normal a while ago.  I know that we will be on medicines for at least until Christmas time until Odette's counts are back up and she is "healthy".  A few  medicines sounds heavenly!  We also do love all of our new friends at the hospital and are always excited to see them and hear them say, "Odette is the most beautiful baby ever!"

On the other hand, I really don't want to go back up to the hospital.  That is where I see my happy baby Odette get sick and feel miserable.  We are stuck in a teeny tiny room for what feels like an eternity and it can be super boring.  Odette has figured out that she doesn't like it here in her room and will scream when we go in after being in the hallway.  (She can be in the hallway when she isn't getting chemo and her counts are above 0.5, which is for a couple of days.)  It is also where I see so many sad things happen, that I haven't figured out how to deal with yet.  My heart breaks every time a new cancer patient comes, when someone is really sick, or when one earns their angel wings. 

This time on our trip I tried to prepare for EVERYTHING that would come our way:

• I didn't spare in what I packed.  I don't care if it takes me a dozen trips to get it all in the room.  I want my now mobile and very smart Odette to be as "at home" as possible.  The entire back end of the van was full of all sorts of fun toys for her, as well as a play yard so she can feel like she is crawling all over the floor.
• We made some special thank you treats to share with all of our nurse, techs and doctor friends.  They are bags of jelly beans that have a tag attached that reads, "Life's 'bean' better with you in it. --Love Odette."  These people are like our family and we truly love them all.
• We got some disposable cameras and decorated some note cards so that all her friends here could write Odette a message and take a picture so that they can always be remembered.  (I hope the nurses cooperate in this!)  Odette will know how to read before I know it!
• I brought things to keep my mind occupied...so many things that I am sure I won't know where to start, but at least I will feel at home!

So here we go...to get our last chemo...to our friends...to our sea of orange shirts(it is Monday)...so that we can return home successful!

A trip to the Zoo.

Some of you may wonder why going to the zoo would be on our list of things to do.  You might think to yourself, "Don't you live at the zoo anyway?!"  We have been waiting for Odette's counts to be up so that we could do something as a family.  We haven't gone and gotten out of the car together as a family for a very long time.  We figured the best place to go would be somewhere outside so we weren't trapped inside with a bunch of germs.  Besides, we have been waiting to see that new baby elephant since it was born!

The baby elephant was very cute and "small".  The kids loved it and thought it was so cool when it climbed up and reached in its trunk to get some food.  We also discovered that we, as a family, weigh similar to a baby elephant.  I think it was Odette that put us up that high!  (521 pounds in case you can't read it.)

Odette was having a great time, even though she had a mask on and was behind a bug net in the stroller.  She waved at everyone and everything!  Each time that she saw an animal she would say "dog, dog" and then growl.  It was very cute.  She loved the noise making elephant and so did Josselyn.

The last animal that we saw was the ape.  Of course we all stood in front of the "Do you measure up?" sign.  I am not sure how accurate it really is, but height wise and arm length, all of us measured up to be some sort of ape! 

I am sure if we had gotten Odette out she would have been pretty close to the infant size ape!  Josselyn thought it was great fun to try and be the same size as all of them!

It was great to get to spend some family time together.  It was nice to have two adults instead of just one with the kids.  I know that all the kids had a great time.  The only regret I have is that I wish I had been brave enough to get some pictures of all the people that would walk by and stare at Odette.  Some were pretty funny!