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! 

Unexpected Visitor

You know those days where you actually get all the kids busy doing something and you have a little peace and quite?  You always hope that no one will call or knock on your door because you just want to enjoy the silence.  Well, it actually happened, the first time in a very, long time and I was going to go to my favorite room in the house-no, it's not the kitchen!  Anyway, I heard this paper-wrinkling noise in the laundry room.  I didn't see anything, but could here it behind the dryer.  I didn't dare move anything, so I just shut the door and blocked the crack at the bottom of the door with a blanket until Ken got home. 

Of course, we all thought it was a mouse and by the time Ken would be home, it would be long gone.  (The whole time I was waiting for Ken to come home I cursing Clorox Wipes, Lysol and my broom...obviously if there is a mouse in my laundry room with all the cleaning we are doing, there is something wrong with the cleaning agent, not the cleaners!)  We were wrong, it was still there making noise.  It was inside of the dryer exhaust duct.  I had all the kids up in the kitchen to stay out of the way-didn't want them to accidentally get hit with the broom when the mouse came scampering out!  Then we heard Ken yell and saw something come flying up and into the living room!  No mouse--It was a bird!

The kids thought it was hilarious and were all giggling as Ken caught the bird and sent it outside.  However, this was just the beginning of the giggling.  In less than ten minutes, the noise was back in the laundry room!  You guessed it-that dumb bird, the kids named him George, had gone right back to being trapped!  This time, before Ken let him out, he went and covered the outside entrance with bird netting.  Hopefully this will keep George outside and my dryer working!  (Picture courtesy of Brandt the photographer.)

Bread Making Makes History!

Oxygen

While we were at the hospital this last time, Odette was struggling keeping her oxygen levels up high enough.  They should be above 90, but hers were around 85.  This is partially due to her being very congested.  On Sunday, she was able to keep her numbers up as long as she was awake and playing, but I think secretly that the doctors just didn't want to send her home on a weekend and a holiday, so they said to stay.  On Monday, the situation was still the same, but they said she could go home on Oxygen.

She wouldn't need to be hooked up to it while she was awake, but when she went to sleep at night she needed it on.  Of course, I jumped at being able to go home.  EVERYONE benefits and is happier when we are all together at home.  I never really think much about what the extra work may be when we are home.  The oxygen didn't get delivered until midnight on Monday and yes, Odette and I were still awake when they came. 

It really is a pretty simple thing to do.  Just turn the oxygen on and hook the tube over the end.  I, of course am terrified of all the warnings they tell you about.  I can hardly wait until Monday when I can call and have the canisters picked back up!  Odette however, doesn't like the tube up her nose much (can you blame her?), but she dislikes having the stickers on her cheek even more.  She sits and picks at them, even in her sleep.  Such a stinker, but a very cute one!  Hopefully this will be the only time we have to come home on oxygen. 

Easter Fun

I know the pictures are a little late, but since we weren't all together for Easter, I wanted to wait until I had some pictures of all the kids.  Ken's parents had the three oldest kids for Saturday and Sunday.  They had a lot of fun looking for eggs, coloring eggs and seeing what the bunny had left them...it was even a surprise for me!

Brandt was all excited to let me know that he was able to make one egg be lime green - my very favorite color if I had to pick one!

I also managed, with the help of a friend (I HAVE THE BEST FRIENDS EVER!!), to get the girls Easter dresses made.  Josselyn is in love with hers so much that it has been washed three times this week at least and I don't think it was ever off of her otherwise.  She also is in love with her pink sparkly shoes she got to match.  She is a definite girl!  Odette even sported hers in the hospital for a while until, yes, you guessed it, she puked on it. 

Odette was lucky and loved (as always) in the hospital and received a basket as big as her!  She loved the bubbles and ribbon it was tied up with.  The candy she freely handed over to anyone who came in the room!

Happy Birthday Kathleen

Easter Sunday was also Kathleen's 9th birthday.  It was really frustrating to her and I that we weren't able to celebrate on her big day.  However, we still managed to follow through with some traditions.  A friend brought her nine balloons to school on Friday.  She thought they were awesome!  Although I think she was a little bit embarrassed by them. 

She still got to have a friend birthday party at a neighbors house where they ate pizza, popcorn and way too much candy.  They watched the Frog Princess and played games and had a lot of fun.  I felt a little bad because we usually do fun themed parties, but her birthday just snuck up on me!  (This party was a lot easier too!)

I had thought far enough a head to have a neighbor make her a birthday cake, so when we got home a day late, we celebrated together.  Of course I can't remember anything now days, so I was hunting for some candles.  Little did I know that the ones I found were trick ones.  Everyone got a kick out of Kathleen continually trying to blow out the candles.  The cake was yummy-even Odette got the purple frosting on her head!  (Too bad osmosis for food calories doesn't work!)  I can't believe my Kathleen is getting so big!  We are so glad that she is a part of our life.  Happy Birthday Kathleen!

No place like HOME!

THERE'S NO PLACE LIKE HOME!

When Odette and I walked in the door tonight, we were greeted with cheers, squeals of delight, hugs, kisses and home cooked food!  There really is no place like home!

A Happy Ending and a Bright Beginning

I know that there is a reason that kids are at the hospital.  They are very sick, at least here at the ICS unit.  It is very frustrating and depressing for me at times here to see the beautiful children who strongly and bravely deal with "stuff" they should never have to deal with.  All to often, the worst happens and my heart is left broken.  In order to "heal" my heart, I am always asking, "Is there ever a Happy Ending?  Please tell me the story so that I can have some hope to hold on to."

This week, I finally got to witness someones Happy Ending.  She had been fighting AML for seven months.  (Remember that treatment for the different cancers are all different.)  She finished her last chemo a couple of weeks ago and has been home waiting for her counts to go up and get results from her last Bone Marrow Aspirate.  They got the results and they were awesome!  She is in remission-CANCER FREE, her counts are continuing to rise and she got her central line removed this week!  I am so very happy for this family, that they have survived the nightmare of cancer and can have a bright beginning to life.  I am so thankful that I now have a concrete happy ending to keep me inspired and my hope strong for our happy ending and an even brighter beginning!

If you would like to read her story, click HERE.

Quick Update

"Your going along in life and POOF"

That is what they say in Harry Potter and it sure does seem to fit life.  You never know what the next poof will be.  In our case, this week has been one of those poofs.  Our unscheduled visit to the hospital has ended up to be an extended stay.  I would say that Odette wanted to come and visit her friends here at the hospital because it had been over 5 weeks since our last stay, but when one of her buddies comes in, they aren't welcomed with a smile or a wave.  She just clings to mommy and cries.  She definitely isn't feeling her best.  

Currently Odette has begun coughing a yucky cough.  She is on oxygen because she can't hold her own.  (It needs to be above 90 and she is around 85.)  She is still having fevers at least twice a day, but fortunately nothing is growing in any of her blood cultures.  She is on antibiotics just in case for the fevers.  She is getting nupogen shots because her counts went to zero at the beginning of the week.  Now they are 0.1-not much difference, but hopefully they will go up and her body can have a little help fighting this virus!  I am sure her body aches and the only way she is comfy is curled up in my lap.  At least she sleeps well like this and she looks so peaceful. (Once she starts Kindergarten is when I am planning on catching up on my sleep!)

Hopefully our next POOF will be to come home by Easter and Kathleen's birthday.  I guess we won't hold our breath, but our fingers are definitely crossed that she will beat this virus soon.