What's next?

A lot of people have asked me now that we have our good news...

"What's next?"

I wish it was Disneyland, but there are a few other things that we will be doing first.

Odette will still be on one medicine, Septra, for three more months.

This is to protect her until her counts come up to "normal".

Don't want any yucky bug hindering her.

She still has her port in and will for a few more months.

We will schedule the removal of that at our next visit.

For at least a year we will have monthly blood tests.

This is just to make sure that we catch the leukemia if relapse occurs.

(Of course I pray every night that this never happens.)

After a year, we will still be having check-ups until the 5 year in remission mark.

(Told you cancer care lasted a LONG time!)

We will be trying to get more food in her mouth more frequently.

Not so much just around her mouth.

We will also be trying to get her to drink more--32 ounces is our goal.

Or 600 mL's of liquid and a total of 1000 calories.

Right now, I am lucky to get 4-6 ounces down a day.

Any ideas of what she can just lick and get her full calories?

If we can't convince her to eat good like her big sister, and mother,

We will be planning on a G-tube in August.

Not what I want, but Odette is on her own schedule with what she wants to eat.

And last but not least, we will be PLAYING a whole lot more.

Not too much sunshine though--don't want a sunburn!

If you want to join in the PLAYING, just let me know!

We are up for almost anything 

As long as you can bring sanitizer and a feeding tube along!!

Waiting is Over

The phone rings...

Could it actually be the hospital calling?

It is!

Odette is "clear and perfect"!

She is CANCER FREE!

Way to go Odette!

Thanks to everyone who became our angels, prayed and fasted for us!  We have experienced so many wonderful blessings because of you.  Thanks for helping out with our Miracle! 

Zip a dee doo dah

Ever been in a really long, dark tunnel?

You thought that you would never make it to the end.

Every now and then you think you see a flicker of light, but then it is gone.

That is how a lot of life over the past year has been.

A little flicker of hope, but still complete darkness in the tunnel.

There was no end.

I was never going to make it out into the sunshine...

or so I thought.

And then today

Today, Odette pulled me out of that dark tunnel.

I was completely immersed in sunshine.

From my head to my toes.

The sun was so bright and warm, it dried up all my tears.

My heart was so very full.

I was doing my very happy, happy dance.

I am so very proud of Odette's accomplishment.

She showed me what life was all about.

She helped me learn so much.

And through it all, she has been an AMAZING GIRL

A FIGHTER

MY HERO.

Today Definitely is a

Zip a dee doo dah Day.

Thank you Odette for showing so many of us what life is all about.

Odette with her R.T.U. Buddies.

She was happy when she woke from anesthesia today!

And she was showing off how good she can walk, even on the cold hospital floors.

Odette playing with one of her other friends.

Odette getting her Off Treatment Gift from the Oncology Clinic.

They all sang to Odette.

It was great!!

 And this time, Odette got to ring the bell for being "DONE, DONE"

No more chemo treatments ever.

She has won her fight!

There is plenty of sunshine coming her way!

What a WONDERFUL Day!!

Swim Lessons

Kathleen and Josselyn both got the opportunity to take swim lessons in the middle of June.  They were both very excited to do so.  I was worried about having Josselyn take them because I didn't know if she would behave for the teacher or just want to play and splash in the water.  She has absolutely no fear of the water.  It ended up being great!  Kathleen remembered everything and was braver than she ever has been with water before!  She even learned how to tread water and now thinks the deep water is fun.  Hurray for Kathleen!

Josselyn did well in her class and passed it with flying colors.  She even surprised me and for the most part, except some excited splashing at the beginning of class, listened to her teacher.  I think if she continues, she will be able to be on the swim team in just a few short years!  Yeah for Josselyn!

The Simple Things

I think that whenever you have a life changing event and have to face the uncertainty of tomorrow, there are many things that you actually start to recognize or appreciate.  Many things that at one point in life may have been considered an annoyance are now one of your greatest joys.

• watching my flowers bloom--last year I was looking at white hospital walls and a stop sign out the window.
• lickery kisses every day and not just every few weeks.
• the smell right after rain and even the ability to run around out in the rain.
• holding and rocking a little person in the middle of the night.
• very colorful walls at home that brighten my spirits.
• hugs every night from each of my family members.
• a fridge in my house to cook whatever, whenever I want to.

Make sure you don't have to have a life threatening experience in order for you to recognize and appreciate the simple things.

Walking Fool

A week ago Odette decided to start letting go of the furniture and would take a step and fall over.  I was so excited, but figured that we had a good month until she would really be walking.  Well, she proved me wrong.  She doesn't crawl anywhere anymore.  She walks until she falls over and jumps right back up and starts over again.  She is so funny, waving her arms all over and saying whats sounds like "woe" the whole time!  The nurses said at the hospital that once Odette was out of there and chemo was less she would develop quickly.  They definitely weren't kidding!  She is a walking fool!

Independence Day

The Fourth of July has always had a special place in my heart.

Maybe it is because:

• It's the day after my birthday.  I have always joked that all the fireworks were for me.
• I absolutely love my country.  Wouldn't want to be anywhere else.
• I love patriotic music!
• The spirit I feel and the goosebumps I get when I see a flag at the beginning of a parade.
• It is an excuse to sew matching clothes for my kids.  (I can still get away with this only on the fourth of July with the older kids.)
• Celebrating the men and women who fight for our freedoms we enjoy is an honor.  Thank you to all of them who do what I can't do!
• I LOVE fireworks.  Someday I may make it to the Stadium of Fire.

This year I have a new reason to add to my list.

Our family is celebrating another type of freedom.

Today, Odette is free from her chemo drugs!

She got her last dose this morning.

Another great reason celebrate today!

Do you see what I see?

Cowabunga Bay Bash!

What great memories we made to replace our old ones of last year.  For girl scouts end of year celebration we went to Cowabunga Bay by the VF Outlet Mall.  The girl scouts had rented a couple of cabanas for the occasion.  For this reason, I felt it would be okay to take Odette.  She would be out of the sun and away from everyone except the few girls and her best friend Andi.  She wasn't going to be getting in the nasty water by any means.

We all had a terrific time playing in all the water.  The slides were great fun, and yes, I even was convinced by Brandt to go on one.  My favorite was just walking around the lazy river with Josselyn because the water was warm.  Obviously I liked it a little too much because I have some really nice red shoulders.

It was great!  Since we were in a cabana, we had "room service".  We got to order our food and get it delivered.  The kids got a huge slice of pizza and a small ice cream cone that was quite large!  When they were bringing our food, Andi mentioned that it was Odette's one year anniversary for being a cancer fighter.  They brought her out a crown, balloons and a cake to celebrate.  I was very impressed and the cake was tasty!  Of course the only thing Odette ate was her crown, which eventually popped.  (She did try some fruit punch out of a straw...)

For Me

I use to think that I would never forget any of my "amazing" life experiences.  As I have gotten older, I have learned that you do forget them, no matter how big an impact they have on you.  So today, I am writing what I wish I could forget, so that when I want to remember I can.  For the past 365 days I have been living and re-living my experiences that came with having a child diagnosed with cancer.  This, for a moment is what I wish to forget.

Ever had a bad feeling that just keeps nagging at you that something is wrong?  You search and think of everything possible, but can't figure it out?  That was me.  My mom was in town spending time with me and the family and we were planning to go on a vacation to New Mexico.  I wanted to see my brothers, sisters, nieces and nephews.  I had had three new nephews born in the past month and was so excited to meet them.  I love my family and couldn't wait to go and play!  But something, somewhere was wrong.

Thursday night we were going to my Aunt's house for dinner.  I had decided to put some socks on Odette because it was still cool in the evening.  This is one of the many miracles that I would be grateful for.  While at dinner, she managed to get her socks off.  She was, after all, six months old and loved to play with her toes and couldn't do that.  When I went to put the socks back on, I noticed little brown, freckle like spots all over her legs.  Weird.  I showed Ken and he immediately said, "Take her to the doctor in the morning."  Ug.  Not what I wanted to do, I was packing for vacation!  But, I also knew that I didn't want to bring some illness to new babies.  (I did call  a friend whose husband is a doctor at the Arkansas Hospital for Children and asked what he thought I should do.  Of course it was go to the doctor as well.) 

Friday morning, thankfully, my mom watched the other kids while I took Odette to her 10:00am appointment.  Dr. Pavich took one look and said "Has she been sick at all lately?  That rash is petechea.  Can I show all the other nurses it?"  I was baffled.  Ok, sure you can show them and no she hasn't been sick.  She has slept A LOT and hasn't nursed so well for the past couple of days, but that is it.  He, in a nut shell said, "Don't worry then, it probably is nothing.  Just for good measure, go get her blood drawn at the hospital."  Of course in my mind, I was thinking,  Blood?  Its just a rash.  I went home to make lunch for the kids and my mom said to just take Odette and go do the blood now and she would keep the kids, so we were off to Timpanogos Hospial.  I called Ken on the way and told him what I was doing.  His voice was calm but you could hear nervousness.  I told him not to worry because the doctor had said it was probably nothing.  He said, "I am worried because it is something."  He had been researching the word petechea on the internet.  He was already way ahead of what I knew.  I got the labs drawn and went home to wait.

By a little before 5pm the doctor still hadn't called with the results.  I couldn't stand it any longer.  I called the office and was very surprised when they actually let me talk to the doctor instead of a nurse.  I didn't even get put on hold.  When the doctor started talking to me I grabbed a notebook because I had my mom and Ken attempting to listen.  Of course I was trembling and crying.  This is what I wrote:

• blood counts really messed up
• blood transfusion
• cancer
• leukemia
• primary children's hospital
• go NOW
• they are waiting and have a room for you

After the doctor finished saying what he had to say he asked.  "I am sorry.  That is a big load I just dumped on you.  Can I do anything?"  All I could get out was, "Can you tell me how to get there?"  Course Ken still had his head about himself and had already printed a map out.  I hung up the phone.  Grabbed the diaper bag and a box of diapers and asked my mom if she was okay to watch the kids.  (I didn't realize then that I was asking her to watch the kids for the next 10 days of her vacation.)

We jumped into Ken's car.  Me in the back watching Odette.  I was definately worried.  I had done as the doctor had said and hadn't worried all day.  Now, I was panicked, terrified, worried and uncertain.  I was freaking out so much that I had to have Ken pull over a couple of times on the way because I was making myself physically sick.

We finally got to the hospital and found where we were suppose to go.  Room 4407--My new home for what would be 27 days.  Dave was our nurse.  I don't remember a whole lot of what he said.  We were instantly thrown into a new form of communication.  Doctors and nurses speak such a different language.  I was very confused and just kept thinking, when can we go home?  People kept coming in our room.  Doctors, residents, nurses, techs, blood collectors and more.  It seemed like they were constantly poking Odette.  She got an IV placed, she got more labs drawn-found out her blood type and started to give her a blood transfusion and some platelets.  I was so confused and the tears just kept coming. The only things I remember that were said by someone were:

• We know she has leukemia, but we don't know if it is the good or bad kind.  We should know tomorrow.
• You don't have to use your own diapers, they are provided by the hospital.
• The cancer road is hell.  Be prepared because there will be lots of fighting.  
• Let me know if you need anything.

We didn't eat. We attempted to sleep, both in the 1/2 size twin pull out chair or in the rocking chair holding Odette.  Someone was always coming in.  It was noisy.  I was scared.  I prayed like I have never prayed before in my life.  Odette, me, my family, we were all in need of a serious miracle.  (We have gotten our miracles, they just took some time and patience.)

In the morning, the doctor told us that we were lucky.  It was the good kind of leukemia, however she was a high risk case and we would be using very high doses of chemo drugs so all of her treatment would be in-patient for quite a while.  (Never in my wildest dreams would I have guessed 7 months of living in the hospital, with five more months speckled with hospital stays, would be in my future.)  We were told that surgery for a central line would be in the morning and we would start on her road map of chemo treatment in the evening.  That is fast.  Can't we think about it?  Do we need to have chemo?  I don't understand.  I know I was numb to everything I was being told and just barely was able to shake my head and say ok.  The day was filled with lots of teaching of everything that was going to be happening and what was going to be watched to see if things were working.  Fortunately I remembered a lot of the teaching even though it didn't make sense at the time.

The rest is a blur to me.  We have had numerous surgeries, transfusions, infections, puke, tears, sleepless nights and more.  Miraculously days, weeks and months have passed.  (Hopefully my journal through it all will be enough to remember.)  However, the first 48 hours of our cancer journey are perfect in my mind.  I relive it almost everyday.  I can hardly wait until this is all just a memory.  Something of the past.  Something that I can look back on and say, "I lived through that?  WOW."