Another Trip

This last week has been a difficult one for Odette.  She seemed to be suffering from having surgery, but just in the evenings.  During the days she was happy and playful and the one puke a day didn't seem like such a big deal.  Last night after getting the kids to bed, Odette grabbed the thermometer and handed it to her daddy.  She thinks that all her medical supplies are her toys and she wanted to play with it.  He took her temp just for fun and that is when the craziness began once again.  SURPRISE-her temperature was 100.6.  Not high for a normal child, but for her, it was a trip to the Emergency Room.  Our emergency bag was grabbed and out the door we went, leaving crying/sleeping children behind with Grandma.  Once again our families life is not in our hands.

When we were in the ER, they hooked her up to all sorts of things.  She had at least 5 cords/tubes connected to her.  They suctioned her nose because it had been a little runny.  (She is getting teeth.)  Her oxygen wouldn't go above 85 so they started her on some oxygen.  At midnight they decided they would be keeping her at least overnight because her counts were so low.  They dropped a tremendous amount in 6 days, which has me really worried.  She also had a very high heart rate, which can be caused by the fever, low red blood cells or a virus-maybe all three!  No matter how you looked at it, she was feeling miserable.  Crazy since she was so happy when we first discovered the fever.

Odette is such a trooper.  By the time we got into her room it was about 2 am.  She slept off and on the rest of the night.  Today the doctors informed us that her chest x-rays looked clear-no bacterial infection.  She has a respiratory infection, similar to RSV, but hopefully more mild.  She will be starting some nupogen shots to get her counts to go up and will be on oxygen until she can keep her levels about 90 on her own.  She has smiled very little today and you can tell she doesn't feel so great.  Even when her dad brought her the bunny to cheer her up she poked at it and then proceeded to suck her thumb and try to sleep.  I am sure at home she will love to wrestle the bunny.  Hopefully home will be soon...

Just Let Me Cry.

I have a testimony.

I know that there is a reason for things to happen.

I know that Families are Forever.

I know that my Savior Loves Me.

I know that someday we will be resurrected in perfect form.
I know that miracles happen.

But even though I know these things,

there is still pain and tears

heartache and sorrow.

I know that time will heal my heart.

But just for this moment,

Just let me cry.

I know it’s hard to see.

But the pain I feel isn’t going away today.

Just let me cry.

Till every tear has fallen.

Don’t ask when...

and don’t ask why.

Just let me cry.

I have felt joy,

the kind that makes my heart want to sing.

And so my tears are not a surrender,

I’ll feel that way again.

But for now...

For this moment...

Just let me cry.

I know it’s hard to see.

But the pain I feel.

Isn’t going away today.

Just let me cry.

Till every tear has fallen.

Don’t ask when...

and don’t ask why.

Just let me cry.

~Hilary Weeks

Mere Coincidence

One of the only things that helps Ken's headaches is for him to drink Gatorade/Powerade

It can be expensive when everyone in the house thinks they need to drink them.

They are on sale at the store for REALLY cheap.

Mere Coincidence?

I don't think so.

The little girls dressers are falling apart.

So much so that Josselyn can hide inside of hers.

The neighbor calls and says, "I got new furniture.  You want some dressers?"

Mere Coincidence?

I don't think so.

The kids really want some homemade bread for dinner.

I haven't had time today to make any.

The doorbell rings and a friend hands the kids a loaf of bread.

Mere Coincidence?

I don't think so.

Clothes are ruined from all the puke and wash they have gone through.

I don't want to buy any more.  She will grow soon.

Someone is getting rid of the exact size clothing that I need.

Mere Coincidence?

I don't think so.

The hospital bills are getting expensive.

Would be nice to not put this bill on the credit card.

A deposit has been made in Odette's account for what the bill is.

Mere Coincidence?

I don't think so.

It's the kids birthdays.

We always have a party but can't have people over.

"I'll do the kids birthdays at my house", says the voice on the end of the line.

Mere Coincidence?

I don't think so.

It has been a really difficult day.

I feel like I am a failure at being the mother I am suppose to be.

A note is given to me reassuring me that I am doing a great job.

Mere Coincidence?

I don't think so.

There are so many things that I can't do right now.

I want to keep my family prepared.

Visiting Teacher says she will do my canning for me.

Mere Coincidence?

I don't think so.

A daughter in love with dresses.

I would love to make her a bunch but haven't the time.

A distant friend volunteers to tackle the task.

Mere Coincidence?

I don't think so.

Odette is feeling more crappy than normal.

I have no idea what is wrong or what to do.

A voice whispers to me to get her ears checked.

Mere Coincidence?

I don't think so.

Why do I go to church?

The kids are out of control and I don't hear much.

What I do here is an answer to my prayers from the past week.

Mere Coincidence?

I don't think so.

Gained a lot of weight from all my stress.

Don't have much self worth.

A comment of how pretty I look in green brings a smile to my heart.

Mere Coincidence?

I don't think so.

Having to be at the hospital a lot.

It can be lonely and frustrating.

A friend from years past works there and shines light through my clouds.

Mere Coincidence?

I don't think so.

Tears streaming down my face for who knows why.

Screaming children and a messy house.

Husband knows its been a rough day and brings home my favorite ice cream.

Mere Coincidence?

I don't think so.

There are many things that can be written off to mere coincidence.

However I have learned different.

I know the Lord is intimately involved in the details of my life.

He knows exactly what I need.

Nothing happens randomly.

There is a reason that everything in life occurs.

It is because it is what we need.

Weather we think it is at the time our not.

So the next time something happens and you say

"what a coincidence"

Think again.

Look a little closer.

You might just see the hand of the Savior.

Silly Kids

We have a home health company that delivers all of the medical things that we need for Odette each week.  It is very helpful-most of the time.  I had just moved the boxes to be out of the way of the stairs because I was feeding Odette.  The two big kids walked by the boxes and started laughing hysterically.  Lately, laughter when the two of them are together is rare.  It is usually arguing and name calling.  Brandt took a picture of what they were laughing about.  I am sure you can guess what they thought was so silly and what they had figured the home health company had brought to Odette!

"Tulle" much fun!

Kathleen's girl scout group is learning about water this year.  (Some times I wonder how well she is paying attention because her showers have gotten longer and hotter!  But hey, she hardly ever will brush her teeth so I guess she is learning to conserve some!)  They have been doing lots of fun things besides selling cookies.  They will be putting on a play that the girls wrote at the end of April.  They have water drops in their play that they decided their costume could be a  blue tutu. 

In my attempt to be an involved parent in all my children's activities, and because I love to make stuff for the kids and haven't learned how to say "No", I volunteered to make the tutu's.  It's not like they are hard, right? 

I was right.  Making the tutu's is not hard...when you don't have little helpers.  It sometimes was a fight to try and get a strip of tulle away from the girls because "we need that piece"!  All three of the girls had a great time rolling around, throwing, hiding in and evidently licking the tulle.   There was lots of giggles from all the girls.   

Surprising enough, we finished making seven tutu's and we didn't even get any puke, or blood, on them!  And we made some great memories.  It was "tulle" much fun for all! 

Stuff

Here is some more "stuff" about what has been happening at our house for the last 24 hours.

• I got to stay up late last night to do some feedings with Odette since she had to go without food all day and I didn't want her to get dehydrated.  While I stayed up holding her and feeding her, I watched New Moon.  It's not any better than Twilight-glad I didn't waste time or money on it in the theaters.  (Sorry to all who love it...I know there are a lot of you)
• Odette slept awful, even with mommy right by her on the front room floor.  Everyone else slept all night in their beds-even Josselyn!
• Odette smiled at the kids this morning, but refused to move anywhere.  Hence, I got the dishes done and the laundry started.
• I was reminded that I have awesome friends when I need to take Odette back up to the clinic to be checked out because her surgery sights were still bleeding a little and she was trying to get a fever.
• I still wanted to punch the little surgery doctor when he came in to check out Odette, even when he said he could de-access her.  I know, I just need to forgive him for being a doctor.  His life must be way difficult...I'm being serious!
• I know I am not as stupid as I usually look.  Odette does have seadiff and maybe that is why she is puking again.  She will be taking a medicine for 14 days to get rid of it.
• My house was quite for a couple of hours since Grandma took all the kids to girl scouts and her house.  I no longer owe $2000 for cookies!
• Odette puked out her feeding tube and so I changed sides it is in...probably not a good idea.  Looks like she is going to just pull it out.
• Took a nap for 1/2 hour on the living room floor with Odette's pretty brown eyes just watching me.
• Paid the last of the bills so our deductible really is met and done!
• Odette is still grumpy but no longer has a fever, will crawl to get into someones lap and is smiling.

 The sun is sending a few warm rays through the clouds for now.

What's done is done.

Do you ever wish that you could go back in time and change something?  Nothing necessarily big, but just a little thing?  Today, that is what I am wishing.  I think in all of my excitement of Odette being able to be "normal" by having a port, I put myself before her.  And now, I am reaping the benefits of my selfishness.

Today, Odette went in for surgery.  Surgery is never a little thing, especially for someone who is frequently low on the essentials to keep a body working great.  Odette was scheduled to get a port.  This is another way for her to receive her chemo treatments.  This is "hidden" under the skin.  This meant that she wouldn't have to cry during dressing changes that occured at least weekly.  No more worrying about flushing the line or if she was chewing on the line or if it got in her diaper or was being crawled upon.  It wouldn't matter how messy she got so I might let her try more foods.  Most of all it meant she could get wet-all the way wet!  To me it sounded like a dream come true and for all the people I talked to it was the greatest thing.

I think in all my excitement, I forgot what Odette was going to have to endure once again.  Now, as I sit here holding her, I am reminded and I feel awful.  She got a port and all that went well.  However, the doctor, who must think that I am the stupid mom, didn't leave it de-accessed.  Now she has a huge bump at the lower end of her rib cage...she isn't going to crawl or roll anywhere with that!  It needs to stay accessed for the entire week until her next blood draw.  She is bleeding from the two cuts and she is in an obviously large-for her- amount of pain.

A bath is definitely not worth what I made her go through today...socks, a plastic glove and lots of tape worked just fine over her PICC line (which is now history) to play in the water.  I know that by the end of the week her body will start to heal and things will look up, but for them moment what's done is done.  I have a little miserable girl that the only thing I can do is hold and tell her it will all be ok...I hope.

Music Appreciation

This month at the elementary school is Music Appreciation Month.  Yesterday Kathleen's piano class was asked to play music during the lunch period.  She practiced and practiced this last week.  There wasn't even any tears!  When she got up yesterday morning, she said she was really nervous.  I told her I had a surprise.  I had found her a dress for a dollar that she really liked.  She was so excited that she forgot about being nervous and gobbled up her breakfast.  Brandt told her, "what if you mess up?"  She replied, "You just keep on going and pretend you didn't."  His question didn't worry her at all.  (Yeah for simple distractions!)

She obviously followed what she told Brandt.  When they came home, the first thing that both of them said was "that was awesome"!  She loved playing on stage at the school.  I think this was great practice for her.  Maybe it will be some motivation to keep practicing.  Then she will have plenty of chances to do it again! 

Another Doctor Visit

I have always said that with Josselyn there is never a dull moment.  Right now I am wishing that I hadn't jinxed myself by saying this.  It seems that every time I turn around, she is eating chap stick, climbing on top of the fridge to get something that I have hidden from her, sneaking into her big sisters bedroom to get the "cool" stuff (makeup or markers), emptying the dress-up boxes all over the living room, changing her clothes for the 100th time that day, sneaking out the back door to torture the dog, eating all the candy/chocolate that she can find or getting into the DVD's to start her a show.  (This list could go on and on!)  If I am lucky only one of the above happens per day, but on weeks like we have had, we make it to the end of the list by lunchtime!  

Last weekend, Josselyn unfortunately got her hand slammed in the van sliding door on the way to the ward activity.  Lucky for us, nothing was broken and she just needed to wear a brace for the swelling to go down.

This week has been crazy with her...I think it is the two boxes of orange sticks that she snuck and ate!  Today, while calling the doctor to ask about Odette's ears I went in the other room so I could hear because the kids were getting their snack-always a loud affair.  After I hung up I hear, "get mom Josselyn, there is a lot of blood!"  I run into the kitchen and Josselyn has blood all over her same hand that got squished in the door, a butter knife on the floor and a baby bottle pop candy in the other hand.  Yes, she had cut her hand trying to open up the candy.  Immediately Brandt handed me the phone as I was telling him how to hold Josselyn's hand to get it to stop bleeding.  Kathleen was crying and starting to get in the car already.  (I think they know the routine by now!)  Josselyn screamed the entire way to the doctors office and most of the time we were there.  (Thanks to our great camera man Brandt!)

They cleaned the wound and decided it needed stitches.  This meant a shot.  "I don't want a shot!  I don't want a shot!", could probably be heard clear down in the waiting room.

Once they numbed it with the shot she calmed some, but was very intent on watching what they were doing instead of concentrating on the movie they had turned on for her.  She was afraid of the scissors.

Two stitches later, a few pink suckers, a cool bandaid and a big hug from dad, she was all better.  Hurray for the color pink and daddy's magic touch!  She is now the proud owner of a cool story to share with one and all that will come into contact with her in the next couple of days! 

What would you do?

The doctor comes in.  This is the moment you have been waiting for.  What is next to do to keep your child alive?  The doctor says, "I'm sorry, we've tried all we can.  There is nothing else more that we can do."  What would you do?

I haven't been in this situation, and I hope to never find myself there.  However, a number of my friends have found themselves in exactly this situation.  It is probably bad, but I almost always put myself in their shoes-I'm half way wearing them already.  I think of what my feelings and emotions would be.  What would I do?  Then, as almost always happens, I hear a song in my mind.  This time it is Live Like you were Dying.  This music brings tears to my eyes as I realize all the things I would do are things that I should have been doing all along.

I should be:

• Living life with the people I love most.  Taking time to enjoy doing things with them and not so concerned about things of non-importance.
• Telling people along the way how much I love them and thanking people for being great.
• Forgive instead of holding a grudge.
• Not be concerned about the material things of life.  They don't go with you anyway.
• Be a good friend.
• Try a little harder to be the person I am suppose to be.
• Speak kinder of myself and others.

I'm sure there are plenty of things that each of us would decide to do if we knew a loved one was soon to be gone.  I think that maybe if we think about it, we would actually "Live Like we were Dying" and then we wouldn't have any regrets when the time actually came.   I don't know...What would you do?

TIE A KNOT

We all have trials.  Some are big and some are little.  I am sure that we don't even recognize some of our trials as a trial because it is a simple one.  (If there is such a thing.)  And sometimes we are required to help others through their trials or rely on others through our own.  No matter how you look at it, a trial is a struggle for each of us to make it through.  This is easier said then done if you ask me.  

A few years ago when I was going through what I thought was the hardest thing ever, I had a very good and wise friend.  She told me,

"When you get to the end of your rope, tie a knot and hang on!"

I think of what she told me quite often.  I don't think she has any idea of how helpful this was to me.  Sometimes during a trial, there isn't much that you can do.  You just need to hold on.  If you hold on, eventually "the light will come".   I have a CD that I discovered soon after she told me this thought.  The song is called HOLD ON and is absolutely beautiful.  (I couldn't find it by the author on my CD, but this version is great also, so click and listen.)

No matter what your trial is, have faith and remember to just tie a knot and hang on.  Before you know it you will be climbing back up your rope and the light will come.

Beautiful

At Christmas I was very humbled by all the kindness and generosity towards our family.  In particular was that of someone who offered to donate her skill of photography.  She didn't even know our family, but because she was doing her calling of Visiting Teaching, she was able to help one of my very good friends.  She did a photo shoot called "Glimpse of Santa" where many of you were able to donate money and she took the pictures.  I was unable to take my own children down to do the pictures, so she came to me.  I am so impressed with the pictures.  They turned out amazing.  If you would like to get more information, click here.  Otherwise, enjoy the following.  (I couldn't get a slide show to work, so hopefully you can just scroll on down!)

Odette's Plan

I know a lot of people have asked what is the rest of the plan for Odette.  As I have said before, plans never work out exactly as promised, but here is what we think will happen:

• March 22nd: Odette goes into the hospital for the day.  She will get her spinal, remove her PICC line and put a port in.  We will start more chemotherapy that is oral.  These I just do at home each morning with her 9am feeding.  She doesn't even realize that she is getting them.  Her butt and disposition are what you notice a change in.
• Weekly blood draws.  These happen every Monday and we have a home nurse come to draw Odette's labs.  We do this to check her blood counts.
• April 12th: We are admitted for, what should be, our last inpatient stay.  We are there for count recovery.  This means that Odette's blood counts will drop to zero and we are there until they begin to come up.  (.5 is usually the ok to go sign.)  This will be for about three weeks.
• May 3rd: Odette has a Bone Marrow Aspirate and Spinal and once again we start oral chemo at home.  This time it includes steroids.  I have decided these are yucky because she is so mean and grumpy!  We do the oral chemo's for four weeks.
• May 31st: Another day spent in the hospital getting a spinal, Vincristine and starting other oral chemo for five more weeks.
• The week of July 5th.  Go into the clinic for an end of therapy evaluation.  We are done with treatment!

There you have it!  The end is in sight, but there is still much to do.  We hope by the end, Odette will be off of her feeding tube and eating on her own, but the chemo drugs make things taste yucky and she doesn't feel well all the time, so chances are we will have the feeding tube for a while.  They will also leave her port in for a while because we will be going in for check ups to make sure that the cancer doesn't come back.  I am not sure for how long they will leave this in.  9 months ago I never would have thought that the end would get here.  It seemed so far away, yet now it is quickly approaching!  Thanks to all for your thoughtfulness and prayers so that we could get where we are today.

Spring Break?

For the past ten days we have had a visitor at our house.  Her name is Katie and she brought lots of excitement with her so we made lots of grand memories while she was here.  She was here for her spring break.  I know it is way early, but when you go to school in Denver and the weather is even yuckier than here, you need a break now to try and get away for some warmth.  Besides the fact that now is when her term was over!  Odette was in love with her and loved to take pictures with her.  This time, she didn't want to smile.  Every time we said "say cheese" she would stick her tongue out and touch her nose.  (Yes, she will eat boogers, but not real food-isn't that a normal kid thing?)

We made lots of banana bread one day.  To be exact it was 6 large loaves and 9 baby loaves!  Why you ask?  I love bananas, but I would buy some and then end up at the hospital and no one else would eat them, so they would get stuck in the freezer.  Needless to say, my freezer was overflowing with frozen bananas!  Now it is just the bread!

We organized all of the medical bills and paperwork from the year 2009.  That was a mess!

The girls played in the tub.  This is one of Odette's favorite things, and since she has the pick line in, it is a much easier thing to do than before.

Katie has a best friend named Kya that came over a few times.  Josselyn loved her and was obsessed with her hair.  She played beauty parlor and put as many clips in as she could find!

Katie is obsessed with pictures of feet.  She and Brand went down to the lake one night to check out the ice.  Good thing it didn't start to melt until two days later!

We drove through the car wash.  This made Josselyn really nervous, but she loved it when the soap we got hit with was pink!

The park was great fun.  Brandt kept going down the slide and then shocking Katie.  In a video she made on her camera, you could hear the electricity!

Odette always thought that she was very special when she got Aunt Katie's phone.  Her goal every day was to try and get it.  She figured out that if she would cry loud enough, Katie would just give it to her!  She isn't spoiled at all!

Katie is going to school in culinary arts in Denver.  Why on earth would I want to cook while she was here?  We made a couple of yummy desserts, hence my ever growing spare tire!  One is called buckeyes and they are made out of peanut butter.  The other ones are Oreo "things".  I can't remember the correct term.  These were awesome and I am sure to make them again.  Josselyn like them, so much so that she took a bit out of each one to insure that she got them all!  (It didn't work, but don't tell her that!)

 We celebrated Katie's 20th birthday!  She is my youngest sister, and now I no longer have any teenage siblings.  I feel really old now!  She didn't hesitate to rub in the fact that I am old!

Katie taught Brandt how to long board and guess what he wants for his birthday now?  Guess I better start saving those pennies and watch KSL closely!

I forgot to take a before and after picture, but Katie helped me with something that has been bugging me for at least six months and that is my yard.  We got all the dead winter stuff cut off and raked up.  The only thing we couldn't quite finish was the trimming of some of the bushes because we couldn't reach far enough off the rock wall.  It sure does look a lot better.  Now I am in the mood to pull out all the grass that grew under the snow, just haven't figured out how and when to do that.

We delivered girl scout cookies.  This is only half of what Kathleen sold, but as usual I forgot to take the picture when we had them all.  She was so excited to sell 540 boxes of cookies, but wasn't as excited to deliver them all after the first night was over!  I still have a few more to take out, but for the most part we are done!  Hurray!!

Odette liked Kya also and crawled up on her back and just layed there.  It was very cute.

We had a grand time with my sister being here and appreciate all that she helped us do.  Ken and I went on two dates, one to lunch and the other to grocery shop.  (Grocery shopping is one thing we have always loved to do together, even though we spend way more money this way.)  We also were able to take Odette to the urgent care when Josselyn pulled her elbow out of socket and come home to bathed kids and dinner.  Having family is great and we are so thankful for the time we get to spend with them.  Thanks Katie for coming-even though the risks are great!