Endo Doctor Visit

The day has finally arrived that I needed to take Odette in to see the Endocrinologist.  I have been really worried about this appointment because supposedly we were suppose to have Odette get hormone levels tested-just done with some blood work and get an X-ray to find out what her bone age is.  The doctor walked in, took one look at her and said, "Why are you even here?  Everything I see on her charts looks great and she looks healthy."  The doctor crunched some numbers and said that there isn't anything that we should be worried about.  She wrote an order for some blood work to be done with Odette's regular CBC test next month and told me not to worry.  "We don't do X-rays on kids until they are about 4."  She would never recommend a G-tube for such a healthy kid.  I had a huge burden lifted when she said that.  So, Odette is what I have always thought she was:  A happy, healthy, energetic, special, miracle, amazing little two year old!

 

 Odette LOVED the painting on the wall, especially the purple cow with green polka dots.

 After her appointment we went to Tracy Aviary to see the birds.  She thought it was great playing in the sand, being a pelican, chasing a peacock trying to touch it and watching all "her" birds.  She even tried to pick a fight with a kid because she said they were her birds and he was standing in her spot! 

She is so stinkin cute!

Moments that Matter Most

I have to vent, so if you don't like to hear me vent, you may skip this post.

This week alone I have heard three too many times, "The cancer is back."

Oh how I ABSOLUTELY DESPISE THOSE FOUR WORDS!

My heart breaks when the next words are, "It's terminal or there isn't much we can do for it."

No mother or father should ever have to hear those words when discussing their child.

So, as always this is a reminder to me to take time and enjoy the moments that matter the most.

You NEVER know when those you love most will be gone from you.

And yes you will be with them again, but I can guarantee you will want to have wonderful memories to pull strength from until that time.

Don't take for granted what might be gone tomorrow.

Watch
Moments-that-matter-most
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What Matters Most

This is why...

...I don't particularly like giving Odette her "make her feel hungry" medicine.

It works a lot like Benedryl and she takes it three times a day, so she isn't just feeling hungry, she is very sleepy.  I find her asleep all over the house.  I don't know how comfortable that is, to sleep with the broom, but she was out for a few hours.  Obviously she had been eating something as well because I didn't even get her face cleaned before she was out.

The only plus side is she has been sleeping through the night!  One whole week of uninterrupted sleep at night for mommy as well!

Another mile stone

 A few months ago when I knew that we would be going to Odette's regular check up the day after her one year of cancer free celebration, I knew that I wanted to do something to take to the other families who are traveling the hardest part of the cancer road right now.  Since I have a bunch of girls, we thought we would make a bunch of hair bows.  However, I didn't want to just drop them in a basket.  Then I remembered one of the things that I had a hard time with was back then.  You couldn't bring real flowers into the cancer part of the hospital.  So, we made flowers that could be brought to the hospital.  Thanks to a few friends, we got two pots made-one for the inpatients and one for the outpatients.  I think that they are the prettiest bouquet of flowers!  I think they were quite the hit. We attached a note from Odette. 

 

Today Odette had to get her blood tested.  Usually it isn't a big deal, but she totally freaked out and was screaming and crying.  Didn't help that we had a new phlebotomist and he missed her vein the first time.   However, Odette also had to have an echo done on her heart as well, just to check that all is still okay.  It looked great and she lay perfectly still the entire 20 minutes!

We got similar news as yesterday from the oncology doctors.

Odette is just a little tike.  She looks healthy and is very happy, but we are really concerned about her weight.

Instead of going to check ups every three months, we go back in two months to see if medicine is helping her to eat and discuss what Endo discovers in a couple of weeks.  That was the hard part of the visit.

Today's appointment was awesome when we got to visit with some of our very favorite nurses and cleaning staff at the hospital.  I am so thankful for the PCMC staff who is more than just friends, they are family and we love them! 

GI frustration

It is the week of doctor visits.

Today Odette went to see Dr. Pohl, the GI doctor.

As soon as I saw what the scale said, I knew there wasn't going to be any good news coming.

Of course Odette is the "cutest little stink" but that was the end of happy.

Her weight is the same as it has been for months. (10.1 kg)

Not good to be the size of an 18 month old or younger.

I am having a hard time understanding why she isn't getting bigger AT ALL!  

She eats a big variety of foods now, but I guess not enough.

She is super active-like the energizer bunny!

She does have a very little dad.

No more blabbing...The doctor says:

You need to go and see the Endocrinologist--this appointment luckily I already had set up for the first part of August.  If there isn't a hormone problem we are gonna have to put a G-tube in.  For now we will have her start taking the periactin (make you feel super hungry medicine) and see if that will help with calorie intake.

He assured me that it isn't anything that I am not doing.  Many kids struggle to play "catch up" after going through an ordeal as Odette did and need some more help.

So I am not sure what to pray for;  that it is a hormone problem (I haven't heard happy things about children on hormone therapy) or that we have a g-tube to feed her extra calories a day.  Neither one sounds to exciting, but as I have learned, the Lord knows what is best and whatever happens it will be okay.

After all, Odette is a fighter.

Neither of the two above are as hard as cancer...

Odette had way to much fun walking through Target as a quick stop after our appointment.  She loved wearing the baseball "hat" and driving the truck through the isles.  I think she looks like a little darth vador in the first picture. :)

July 4th

Last year we celebrated freedom from chemo along with the AWESOME FREEDOM of our Country.

This year, we celebrated these same things along with freedom from cancer!

Odette absolutely loved the parade, the food, the fireworks, the slide...and a barrel of monkeys!

Princess Ball

The Hopekids put together a Princess Ball.  They sent out the coolest scroll-like invitations by email to all the princesses, had a fancy place for us to eat at with the cutest servers, a Cinderella coach for rides, balloon shapes, cupcakes and of course all the princesses were in attendance.  It was so much fun!  Kathleen went as Aurora, Josselyn as Snow White and Odette as Cinderella.  It was great to mingle with other families that have lived in the cancer world with us. 

 

 Odette drinking out of her fancy glass.  It didn't break and she drank most of it!

 A ride in Cinderella's coach.  Odette LOVED the horses!

I took over 50 pictures and had to just pick a few.  It was so much fun!  I am so lucky to have my princesses!

Dentist

Seriously, Odette is the best patient for ANY doctor visit!  I had forgotten that we had started having her get her teeth cleaned six months ago because we were concerned that she might have some serious dental issues given the chemo and the amount of puke that came in contact with her teeth.  

She was so cute at the dentist office.  She climbed right up on the chair, laid down and opened up her mouth.  She held perfectly still the entire time.  The only thing we couldn't do was the fluoride because she wanted to keep swallowing it.  Guess nothing tastes gross to her anymore!

Two years

Two years ago today, I was uncertain if I would ever see the day that Odette would be the girl in the above picture.  (Uncertain is a nice word, more like terrified half to death.)  Of course, when your child is diagnosed with cancer, there are so very many emotions going through you; fear, uncertainty, helplessness to name a few.  However, I quickly learned in the beginning that those feelings that I experienced in the first few hours needed to be replaced if I was going to survive the road map that was then placed in front of me.  Faith, hope, trust and courage were what I was going to need to make it.

The past week I have been thinking a lot about what has happened since two years ago.  I actually do this quite frequently; at least every time that I am to take Odette to the hospital for a check up.  It is amazing to me, how grateful I am to the Lord for blessing me with this experience.

Now, I know you are thinking, "Hello Stephanie, didn't you say all the time that cancer sucked?"  Yes, I did say this quite frequently and I still think that it does, but WOW what great and marvelous things have happened in my life because of this experience.

I know that Heavenly Father is indeed in charge of all the details of our lives.  And, he indeed works in mysterious ways.  (Odette having cancer I consider as mysterious.)  One just need put their faith and trust in Him and they will be in awe at how everything seems to "just work out".  I have had the opportunity to walk with the Lord through my difficulties over these two years.  And when I couldn't walk, I was carried.  Sometimes, what seems to be the very hardest, is actually the answer to a prayer that we have been praying for.  Indeed this is how I view Odette having had cancer.  I have been taught, made stronger and had many prayers answered all through her.  A miracle happened two years ago, that I will be forever grateful for.  I love you Odette!

Another month gone by

I can't believe that it has already been another month!

Usually I don't really want to take Odette up to PCMC.

However, I was very grateful that today was her day.

She hasn't been eating well lately.

Having random fevers.

Sleeping a lot.

Of course, and I really do try not to let my brain go here, you know what I am thinking.

So I was antsy to see what her counts were today.

I was so happy when I saw that they were all perfect and normal.

She didn't even have an ear infection.

Must just be some virus gong around.

So the only not so great news for the day was that Odette lost a pound.

We will be seeing the doctor the first week of August about this.

Otherwise, our next appointment with oncology will be her one year mark!

She is as cute as ever.

Ate her chips.

Told everyone about her black chicken.

Got to love Oliver, the dog.

And showered everyone with "blow kisses" today.

That is my Odette!