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."

MMMMMMM....

Yummy!  All from our strawberry patch.  I wonder if the kids are going to share with me?
(I guess if not, there is another bowl this size to pick again in a couple of days.  Now you see why last year I was so very worried about weeds in my strawberries.  They are one of the kids favorite things that we have growing in our backyard, besides the raspberries.)

A Day of Rest

I have always been told that Sunday is a Day of Rest.

I don't think that rule applies at our house.

Sunday seems lately to be the out of control day for everyone.

Yesterday was no different.

We will just leave it as four kids cooped up inside for too long because of yucky weather makes for a little bit of craziness.

There is also always something going on with Josselyn around.

It was now 6:30 at night.

Time for everyone to get ready for bed.

Maybe there would be some rest.

Give Odette a kiss on her forehead.

She feels warm.

Take Odette's temperature.

100.3

Guess I am going to the hospital.

Got there by 8:30.

Took a little while to reach the oncologist.

Hospital phones were being "difficult" to say the least.

Must have been new nurses because I told them how to access the port.

Maybe I will go get my nursing degree.

At least then I could get paid for some of my knowledge I've been collecting!

Finally got some labs drawn.

Now was the waiting game.

After an hour we finally got to talk to someone.

They did Odette's exam.

"She has an ear infection."

It wasn't revenge of pink eye part 2.

(Her eyes were looking pink and gooey again in the afternoon.)

Her counts are up.

ANC is 2.9.

That means we don't have to get admitted.

Got an IV antibiotic for "just in case" and to "cover our bases".

Hold on, "She's taking metheltrexate?" 

"I don't know what we give her for an ear infection."

Amoxacillin can't be at the same time as the metheltrexate.

Wait for another hour.

Got a prescription for omnicef.

They say "fill it in the morning."

I think to myself, in all my free-time between swim team, piano and swim lessons.

"OK"

We are free to go home now.

I watch the clock change to say MONDAY 12 AM

Odette finally falls asleep when I put her in the car.

Get home at 1:15am.

Now maybe some rest...

But it is Monday!

First Swim Meet

Brandt had his first swim meet this past weekend.  

Fortunately for us we had a few things in our favor.

It was at an indoor pool, and while it did "feel like Equador" it wasn't freezing cold and raining on us like it would have been at any outdoor pool.

Grandma babysat all three girls!  (Thanks Grandma!)

I was able to complete all my volunteer time in one meet--Hurray!

Grandpa came and sat with Brandt.

They had a great time.

Brandt moved up to a different age bracket this year.

He had to double the distance for all but the IM.

Brandt did awesome competing in a freestyle relay, IM, backstroke and breaststroke.

It's going to be a great swim season!

This picture is courtesy of Brandt.  Says I need to be in more pictures.

Peace

As we go through life experiences, we are continually adding groups of people to whom we can relate and turn to for help and guidance.  Each group that we add, we have something in common with and hence we can turn to them to find the answers to the questions that we seek or to find joy and pleasure.  For example, when we get married, we now can relate to those who are married and can discuss topics easily with people we have this similarity to.  Then, you add some children, so you can now easily relate to those who are married and have children.  Maybe you have interests in photography, so you have connections to others who share this same interest.  With the different groups that you have inside of your circle, you are able to communicate, find answers, support and joy.

When Odette got sick, our family added other cancer families into our circle.  Even though I hardly know the other parents, I feel a connection to them.  I can communicate with them.  I completely understand their emotions, because I too feel the same.  In a way, we could all offer some hope and peace to one another because we were "walking in their shoes".  No, I can't take away all the pain, but I could help them to "bare their burden" and try to "lighten their load".

I really love the people I have added to my group because of the experience with cancer.  The people are wonderful, the cancer is another story.  I have really struggled with finding peace and sharing peace with these people when things get, well lets just say unfair.  Watching little children suffer has to be the most difficult, rotten and heart breaking thing for anyone to experience.  Especially innocent, beautiful and perfect children.

While contemplating the difficulties a few of my friends have been experiencing lately, I have been filled with frustration and anger.  Those people smoking cigarettes should be the ones dying.  Then came the sweet music to my heart.  Where can I turn for Peace?   I was then reminded that there is only one way to have that peace that I so long to have and was in desperate need of.  I just need to turn to the Savior and he will "calm my anguish."  It's something that we all need to find ourselves and can only attempt to share with those around us.  To all my dear friends, I pray that you may find the peace that you need and desire as your families are struggling at this time.  I know it is available, just reach out your hand...

Blank Slate

Why on earth is Odette's head like a blank slate to her sister?  Every time I turn around, Josselyn has "tattooed" Odette's head with pen, marker, lotion or stickers!

Luau

One thing that has been absolutely wonderful through out Odette's cancer experience are all the opportunities available for the family to participate in.  Children with Cancer Christmas Foundation is one group we have been involved in. Each year they help provide Christmas for families with cancer kids and they have a summer luau. Last night was the luau and it was great fun!!It was held in Provo at the Tahition Noni building. They have a beautiful "park" behind the building complete with waterfalls, a pavilion and absolutely gorgeous flowerbeds. It was like we were on a tropical island. When we first arrived, we were given lays of flowers and orange t-shirts. We all thought it was cool that the shirts were orange, of course. There was a photographer there to take our pictures. To bad we weren't all dressed cute for the occasion, but we got them taken anyway.

There were lots of games for the kids to play. Here they are digging through the saw dust to see what treasures they could find. The kids enjoyed playing basketball, throwing bean bags to hit Shrek, flipping pennies onto Alice in Wonderlands tea party table and shooting a nerf gun at some bad guys. Josselyn was great at this one and hit the target with all 8 rounds she had!

There was a fun craft to do, which was of course where Kathleen wanted to spend most of her time! They "colored" fish with skewers. When they did, "magically" other colors appeared.

There was some very yummy food. Rice, Pork and tropical fruit. The kids favorite food part was the dessert--brownies, sugar cookies, lemon bread and some lemon covered mini cupcakes. I think I ate my share as well.
Cosmo the cougar was also in attendance. Brandt and Kathleen thought he was cool. When he held his hands out to Odette, I thought that she would cry or cling to me, but she almost jumped out of my hands to get to him! When he was holding her, she just kept patting the head part and looking at him weird. Josselyn, was completely terrified of him. She wouldn't go anywhere near him. She would see him coming and RUN! She kept calling him Todo (we had just watched Wizard of Oz) and would yell for him to come to him and then hide. By the end of the night, she would sneak up behind him, touch him and take off in the opposite direction. It was way too funny!

Josselyn and her friendly personality made a few friends. She was pushing our friend from Primary's around in his wheelchair. She also made a friend with a lady, who held her hand and walked all over with her looking for treats and prizes. Thank heavens she was willing to play with her because Odette wanted to try and walk around and she doesn't move as fast as Josselyn!  (I don't think many people do!)

The end of the evening we had some hula dancers perform and some fire dancers. It was great! The kids thought that it was so cool when the fire dancer put the fire on his feet for seven seconds--I guess they were counting! Hope you enjoy the short clip we managed to capture. 

When we were leaving, we were given a fresh pineapple and some Hawaiian chocolates. Yummy! Such a great time to be among people who completely understand one another and the crazy life cancer brings.

Best News

I am sure by now everyone knows how frustrated I have been with Odette's lack of eating and her continual puking.  However, we got the best news this week.  The GI doctor called today.  He says that all of Odette's "stuff" came back looking normal!  The previous allergic cells that were causing her all sorts of problems are gone!!  This is so exciting because...

• Odette can quit taking another drug!  
• And it is the very expensive drug!
• The "puke phase" of her therapy should be over!
• We can slow her feeds to increase her appetite.
• Hopefully she will eat, before they decide a G tube is the answer.  (I know I need everyone's faith and prayers for this one.)

I think this is the best news I have gotten this week!!

Week 46

Today was Odette's day at the Oncology Clinic.  We had to get up and leave by 6:30 am.  This wouldn't have been bad at all except Odette was awake from about 11pm until 3am.  I am not sure if she understood that I wasn't going to be feeding her because she had to be NPO for her procedure or if she heard the word hospital and kept having nightmares.  Whatever the reason was, we started the day off exhausted.  Luckily I was able to keep my eyes open while driving to PCMC.

When we got to the hospital, Odette was as happy as could be to see all of her friends.  Her wave is teh sweetest of all!  Lucky for us, one of her favorite night nurses was slow leaving to go home and we got to see her!  That was the beginning of great news.  At the clinic, we did the usual routine and weighed in.  Odette, in the last three weeks has managed to gain 0.3 kilos!  I was hoping that she had gained weight, but wasn't thinking she actually had.  She gained in three weeks what had taken previously 9 months!  We need her to be up to 9kg in order for us to take away the feeding tube completely and see how hungry we can make her, so she might eat.  But how awesome it was to know that she is growing!!

The next great thing was when the doctor came in.  She opened up Odette's file and said, "Have you seen this?" and she held up Odette's road map.  Of course, I had seen it (I practically have the thing memorized!) and instantly replied, "Yes, we only have six weeks left!  But I'm not really counting."  Both of us smiled and then I got all teary eyed and said, "I remember when you first gave us the entire road map and thought it was going to be impossible.  However, I decided to take one step at at time and now look...those steps have added up and our family only has one more big leap to make and we will be out the door!"  I was so filled with gratitude and amazement at that very moment.  I know for a surety that Nothing is Impossible with Faith, Trust and a little Pixie Dust.  My smile was huge and I am sure that I was beaming.  (I know I can't explain my feelings any better than that, you just have to trust me that it is an awesome feeling.)

The rest of the visit was routine.  The chemo wasn't ready to give before we went to our RTU appointment, so we went down there first.  When they were about ready to take Odette back, they informed me we would have to wait a little longer because Odette's chemo for her lumbar puncture was the wrong stuff.  (Thank heaven's that they check that stuff a few times!)  The chemo eventually came and they took her back.  I cannot describe my distaste for that experience.  So glad it shouldn't be to many more times.  I gave her a kiss and she was asleep and I just have to leave her laying there, praying all goes well.  Of course, I know she is in good hands, but that pulls at your heart strings.  Both procedures went smoothly.  The GI doctor came and said she looks great!  We will know the results of her scope by the end of the week.  Hoping to drop yet another drug.  She woke up quickly, which means grumpy.  After about 10 minutes of food running, she calmed down and fell asleep and didn't wake up until we were almost home.

We went back up to the clinic, got her chemo that was now ready, collected her beads of courage, said hi to a a couple more of our friends who were now at work, spend our wad of cash on prescriptions and came home.  Odette did great today.  She is such a happy fighter!  I love to watch her interact with the other patients and parents and bring smiles to their faces.  Sometimes smiles are hard to come by around the cancer unit.  Maybe there is reason to the trials and chaos that we all face in our lives, even for someone as little as my Odette.