Who's Lou?

It's done! Rylee's book is published!

I think I mentioned awhile back about my sweet neighbor, Shelley Hanson, who was inspired to write a book about Rylee. Talk about a labor of love- she's been working on this for over a year now. She found a very talented art student at BYU-I to illustrate it (Cali Ward) who completely donated all of her time and talent on this book. I think they did an awesome job! I'm so excited for both of them because this is their first book to be published. And...it's about and for my daughter. How cool is that!

They both put a lovely dedication to our family in the book:

"This story is dedicated to Rylee; her and her family's positive attitudes have been inspirational. A huge debt of gratitude goes out to my right hand on this story-Cali is the reason this book is published and not sitting on my shelf gathering dust. Last but not least, thanks to all those who encouraged me to not let this idea just be an idea. -Shelley Hanson

And

I knew I wanted to be a part of this story the first time I read it. Rylee, you are a brave girl who can teach so many people with your positive influence. Shelley, thank you for letting me be a part of this cute story. I hope this story will be a comfort to children, families and all those affected by tough trials in their lives. -Cali Ward

This is Rylee with Shelley. It was the cutest thing ever-- we took Shelley a gift basket and card, to express our thanks (which we never will be able to enough) and Rylee had practiced a whole line. Shelley comes out and Rylee hands her the basket and says, "Thank you for my book Shelley" and then gave her a great big hug. She is so proud of her book. It's so cute when you ask her what her book is called she says it so cute, "Who's Lou?" with big puckered lips.

Here are a couple pages that I took pictures of. I think the illustrations turned out so good- its got bright colors and is easy to read. Never thought we'd be characters in a book, but there we are.

The story is about Rylee, who is almost two, in the book. Something weird is going on with her, but she doesn't really know what's happening. It talks about her going on life-flight and us telling her that she was sick and that she has Leukemia. She misunderstands and think we said, "Lou-cleaned-me-up instead, so the whole book is about her trying to figure out who this Lou is?

I love how light-hearted the book is. The cancer world can be so heavy at times and this is just a refreshing take on it. I really feel like the perspective this book was written with reflects the approach that we've tried to take in coping and dealing with it all. And...I love how it really captures that true innocence that Rylee has had going through all of this. She probably is wondering who Lou is and when he'll leave her the heck alone.

So...Shelley's plan is to get this out there. She's wanting to get it into Primary Children's (we received a few books there, but none with this approach or as cute) and to our Oncology office and library and other places around our community and throughout the cancer community. And...of course, we'd love for any friends and family who are interested to support it as well.

I know that I feel like all who read our blog have been a part of this journey with us. This book is just so special to us. Not only is it a tribute to Rylee and something for her to look back on, but what speaks louder to me, is that someone acted on something that they felt inspired to do and followed through with it. For that, I hope that other people will care about the book and that it is well-received. What an incredibly thoughtful thing for someone to do for another.

If you want to buy a copy, here's how.

You can buy an online version for $5 or buy the actual Paperback book for $16 on Lulu (link below). You can also view a free preview here.

https://www.lulu.com/commerce/index.php?fBuyContent=8290909%22%3e%3cimg

Or...you can contact Shelley Hanson lsjbhanson@msn.com and order it through her.

To see more of Cali's work: http://www.caliward.blogspot.com/.

[Any proceeds from the book will benefit Rylee and cancer research]

Which, by the way... let me just take some time on cancer research. We were told at diagnosis that there is an 85-90% cure rate with treating Rylee's type of Leukemia. In 1962, only 4% of children with ALL survived (which I can't even type without crying). Back in those days, there wasn't much hope. Even as recent as 1997, there was only something like a 70% success rate. They've made some huge breakthroughs and switched a lot of factors around with the way they treat it (cutting radiation out for one {unless it relapses}) and it jumped 15-20% in success rate.

Here's a quote from an article I read, "Multiple breakthroughs at St. Jude and elsewhere have transformed ALL from a virtual death sentence into a disease that children can increasingly be expected to survive with minimal side effects," Evans said. "Surpassing 90 percent is an important step toward our ultimate quest of curing all children with this disease."

I read something very exciting a few weeks ago. This Dr. was saying that he believed that in as early as 5 years, he thinks they will be able to treat Leukemia and other cancers with at-home medication, eliminating chemotherapy entirely. That would have changed so much....and they are getting so close to figuring this one out. We knew early on that it was a blessing that Rylee got Leukemia and not another cancer- it's about the only one that comes with much hope in terms as ever using the word cured. I'm just saying....if there ever was an opportunity to support a good cause...cancer research is the place. Mostly because as a parent...that remaining 10-15% failure margin means everything. So...buy a book (about a darling girl you know) and support our quest in getting closer to the cure.

Winter Blahs

Well, nothing brings out the worst in me like tax season and a never-ending winter. I swear I've been the grouchiest mom ever! Seriously ask my kids. Turns out that over-extended parenting hours + stir craziness isn't the best combo for me.

Needless to say, we've all needed a break.
The sun was actually out one winter day, so we decided to bundle up and go for a winter walk. It actually felt rather refreshing.

Here are a few scenes from our winter walk.

Buried mailboxes.

Sunken trampolines.

Iced rain gutters.

Giant snowman.

Of course, I threw in a little slave-labor to assure nap tiredness. We were trying to break all of the frozen snow off our driveway.

Jaden couldn't have been happier. He was made for the outdoors and could enjoy it for hours. He kept carrying this rake a shovel around like he was there for hire. He busies himself carrying them in and out of the garage, to the end of the driveway and back, up the stairs, down the walk way, etc.

He's going to LOVE spring and summer this year. I can't wait. Go away dreaded winter!

Jaden's One!

He's one! Couldn't tell you where that year went, but here we are a year later. It's been a dramatic year and this little guy has certainly contributed to the drama. He's a ball of energy, which adds a lot of excitement (and exhaustion), but he's also brought lots of joy and love to our family. He has kept us on our toes and brought life to a year that we probably would have rather crawled in a hole. He's is adored by his bro and sis and keeps us laughing (or sometimes crying if he tackles you, bites you or scratches you-little stinker!) He's intense!!

For Jaden's 1st Birthday, we decided to go swimming at Green Canyon with some of our family. With all of his energy, he gets stir crazy and needed to get out. Felt like a good break from the long, cold winter we experience for way too long here in Rexburg.

He loves the water and was perfectly content splashing and kicking around.

After our swim, the cousins gathered around for some cupcakes.

And we sang Happy Birthday to Jaden. I had to help him with the candle.

And he had no problem devouring the cupcake. He loves chocolate.

(I may or may not have eaten quite a bit during my pregnancy with him.)

Of course, he opened a few presents. It's mostly comes down to necessities when you're the 3rd child.

But..we splurged a little on this little 4-wheeler. Perfect for a wild man.

Of course, even before we could get the wrapping off, he climbed straight up on the seat. Evil Knievel in training. I should have known.

Happy First Birthday Bubby!

Never a Dull Moment...

Life moves at a rapid pace around here.

Saturday night, Jace & I were enjoying ourselves at the Peking Acrobat show at BYU-I. Like any good audience member, I turned my phone off- not worried, knowing that Jaden & Rylee were home safe & sound with Justin. I'd be home in a short two hours.

Well....my heart got pounding just a bit when I turned back on my phone to see a couple missed calls from Jus, with a text message that said, Call me. NOW! You never know what that might mean in our world.

Well...turns out after I had been gone for less than a half hour, the master or disaster (a.k.a. Jaden) decided to tip the sofa table over on top of himself and get a big gash in his eyebrow, requiring 5 stitches. You'd think that I'd be shocked, distraught and a bit shaken when I found out, but since we frequent the ER as much as most people go to the grocery store, "trauma" hardly phases me anymore. Poor bubby- 5 stitches & a black eye.

There is never a dull moment with this kid around. Just last week he had a bloody, fat lip from running too fast on our cement floor in the basement. And..I found out that he can scale shelves at the store. Here's more proof of his rascally ways. I have a feeling this won't be his only trip to the E.R.

Still cute, even with a fat lip- hardly phased him.

"Hum...a stroller meant for dolls that rocks back & forth? Might as well give it a try. Oh, and in my mouth? A wet wipe stuffed as far in as I can get it. What?"

"Ahh! A mirror that attaches at the top, but not the bottom? Give it a good pull and off the wall it comes. I've tried this one a few times."

"Open drawer, climb inside. Stand up, open drawer above me. Get stuck. Then mad that I can't get myself out."

"What's this? A car with a door that opens? Well, I'll go around and jump in the side without the door."

" I knew this wagon would be good for something."

"My sister uses fingers for picking, I use them for chew toys- and it hurts!"

"I see a laundry pile. I will toss it to & fro and roll around in it, even though it's dirty."

"Toys should not be in a basket. Dump."

Already using the toilet.

"One puddle in the whole yard, I'm there!"

"Who said toys are for playing with? I can dance up here too."

"You've got glasses? They're mine!"

And he's not even one yet! He's got a lot of curiosity and hardly any fear. That sounds like trouble to me. Oh boy, we're in for it.

Tooth Fairy

Where has the time gone? Jace lost his first tooth this past Friday.

A few weeks ago, the dentist discovered that it was rather loose. I hadn't even thought about him being old enough to loose a tooth yet. It seems like he just got his teeth. The one right next to it is pretty wiggly too, so I'm sure that it won't be long until the bottoms are out.

When he left for school on Friday morning, his tooth was basically hanging by a limb, but he didn't want me to pull it.

He said that when he was eating his snack at school, it fell out. He lost it at first, but then his friend told his teacher and she found it on his chair. He brought it home from school in a little plastic sack. It didn't even bleed.

He's been having fun putting his tongue through the hole and feeling all the different foods through it. It makes him seem so much older.

The tooth fairy made her first appearance at our house that night and was a little nervous. I think she scrambled for what to do. What's a fun tradition? How much do you pay for a tooth? Well, she decided to create a little fairy dust in the sack, along with a dollar. We're in recession- how much can a kid expect? I'd love to hear what the tooth fairy does at your house - we've got another one coming soon!

2009 Rewind

Boy, oh boy! How do I possibly sum up a year like we had? Let's just say that we had our plates full!

Ode to 2009:
To the world, it was the year that....
-The first black President of the United States took office.
-The King of Pop, Michael Jackson died.
-The Internet conceived yet another social networking site, Twitter.
-The Swine Flu (H1N1) pandemic swept the nation.
-The miracle plane landed on the Hudson River.
-Jon & Kate split up (& traumatized their 8!).
-Even Oprah announced that her show will come to an end.

Pretty big year!

In our little corner of the world, it was a pretty big one too. It looked a lot like this:

I spent much of my time just like this. On the couch- sick baby on one side, fussy baby on the other. It was truly a year that I just had to "let it go." My priorities were not to have an immaculate house, it was not spent doing hobbies and I cut out a lot of the extra stuff so I could focus on what was immediate and necessary. Some days my kids just needed me, so that's all I did. There were several times through the year that Pres. Hinckley's story of "forget yourself and go to work" ran through my head as I thought about all that I wasn't accomplishing. Honestly, I was just trying to survive day to day.

Our kitchen often looked like this. You'd think I'd be embarrassed by it, but under our circumstances, dishes were the least of my concerns. I did what I could do and occasionally others came & helped. It's hard to believe that all in a year, I was pregnant, had a baby, recovered from a C-section, was a nurse to a child with cancer, was exhausted with a fussy/spit uppy baby, served as enrichment leader, turned 30 and experienced one of the busiest schedules of my life with endless Dr. appts, hospital stays, carpools, speech, sports and just keeping up with being a mom and trying to keep a somewhat decent house.

Oh, and how could I forget the dreaded laundry? When Jace saw this picture, he said, "who did that to our laundry room?" It made me feel better that this isn't necessarily typical, but no joke..I have not been caught up with laundry the entire year. I swear a newborns laundry alone is hard enough to keep up with, but you add a sick child's laundry, then add extra potty training laundry, etc. You get the idea...it's basically impossible to keep up with it. Just when I would...someone would spit up, throw up or pee on their sheets, creating yet another load! I'm still working on getting caught up.

Mr. Jace had a pretty big year. He graduated from preschool and started his second year of preschool(after we had the big decision to send him to Kindergarten or not). He started his first year of sports- he did swimming lessons and soccer. He continued with his second year of speech- working on the letter R. At times Jace has had to take a back seat and although it hasn't always been easy for him, he's been very unselfish, understanding and a big help to us with the other two.


Here we go. Where do I ever start with Rylee? She's fought cancer, lost hair and grew hair. Said bye-bye to binky, potty trained and switched to a big girl bed. She got surgery to replace her central line with a port, had a few hospital stays, took medication daily, was visited by the home health nurse weekly, got treatments monthly and spinal taps every 3 months. She got to be part of the Primary Children's Miracle Network telethon and... She got to swim- yay! So thankful for all that's behind us with her.


And our little bubby. Certainly the only thing I could think of for awhile with this kid was how much of this he did. Not to mention all the spit up. Wow! It was not easy. And how can a blame the poor kid- he was not exactly born into the most calm situation. He's been a little high maintenance this year. We started out with blood in his tummy, then finally threw in the towel with nursing-(thinking something I was producing was making him so sick), then exhausted options trying out 7 different formulas, got no solutions from Dr.'s, so we just endured it. Finally at about 7 or 8 months things got better. And...after an entire year of not sleeping through the night, I'm happy to report that we've just recently gotten a couple nights of sleep. Yay!

But.... to redeem him, Jaden is turning out to be quite the little charmer. We've gone from colic to cute and are appreciating him much more now. He's totally intense and aggressive and full of energy. He's sat up, crawled, walked, gotten teeth, said first words, climbed stairs, ate solids, was blessed and all that other fun first year stuff. It's been quite the ride with him! He's definitely added an extra spark to the year. He has brought an increase of love in our home this year and almost look back thinking that things would have been boring if I took away all the action he has caused. He is so full of it!

I can't leave Justin out. He's managed to hold us all together this year. He is such a supportive husband who has equally shared the challenges of this year. He does whatever it takes. Things were hardest during his busiest season, yet he always balanced both. He's helped me in every way including housework, watching the kids, calming a fussy baby, giving me a break, taking Rylee to the ER, staying nights at the hospital, spending lunch hours helping with kids or appointments, etc. He is an involved dad who takes an active part in playing with the kids, knowing what they've got going on, supporting them, etc. He has been an excellent provider, taken on every financial aspect, has filled out a lot of forms, stays on top of all the bills and insurance stuff and has been there no matter what. I'm so grateful also to have a worthy Priesthood holder in our home- we've needed it quite a few times. I seriously don't know how I'd survive without him. He's also managed to serve as 1st counselor in Young Men's and fulfills all of his duties with that. It really is the busiest time of our life.

For our family, we enjoyed our annual vacation to Bear Lake and Jus and I had fun getaways to Lake Powell with our friends and Las Vegas with ourselves. Much needed! Life should be enjoyed, not just endured.
In our cancer world, I'll never forget all the work that this thing produced this year. Flushing it with saline and heparin every day, cleaning/changing the dressing (shown in picture), covering it for baths, having it restrict Rylee from hot tubs and swimming- what a pain. I don't miss this thing one bit. Getting the port was such a relief and eliminated a ton of work. Good bye central line.

Couldn't forget this one. Here's our little family camped out at Teton Oncology (practically our 2nd home this year). Treatments have just become such a part of our life, especially the first part of the year- we were there monthly, weekly or sometimes daily. I'm so thankful for their good staff who are awesome.

And...even though this is a little graphic, my dad's accident was also a huge part of our chaotic year. So much had happened, I honestly felt a little numb during all of this. We're beyond grateful for the blessings he has received in his recovery. He's come a long way from laying there in the ICU- it really could have gone the other way and I'm so glad it didn't.
Basically it feels like anything that could have happened, did happen this year. We will not miss 2009 at all- it's been our hardest one yet and are glad to put it behind us.

But...despite all that's happened, we're happy to report that we survived it and "Everything is OK." All is well that ends well, right? We are certainly looking forward to a better 2010!

{P.S. This tile was given to us by Justin's sister. The acronym IS OK stands for In Scriptures, On Knees- good reminder to rely on your faith and things really will be okay.}