Wednesday, September 30, 2009

One year down, 1.25 years to go.....

Well, we did it! Today we have officially survived our first year of cancer. I must say that it feels much better to be where we are right now, than it felt a year ago.

{A look back at Rylee through her first year of cancer. }
It actually feels like the year went by surprisingly fast, yet there were a lot days, some very hard days within that year. It stirs up a lot of deep emotion for me as I reflect back on this past year. Considering where we have been and where we are today, I must say that ultimately, I am just so grateful that we have arrived. So glad to see that year behind us. I really hope that I never have to endure one that like that again.

Last year, when we were in route to Primary Children's, aboard Life Flight, I knew that we were in for it. I looked around... Rylee was laying there, very lethargic with an IV coming out of the top of her head. Two nurses were monitoring her every breath and held a bag of blood on ice, ready to transfuse at any moment in flight ....I realized at that moment that life as we knew it was gone. We still had so many questions and answers and many unknowns, but I knew that this would be a defining moment in our lives, something that would change everything.

{Who said kids don't come with an instruction manual? Kids with cancer do. This is our cancer bible that we were sent home with from PCMC. I've read it cover to cover. If you ever need to do a report, I've got references galore!}

And you know what? It has. Absolutely. The journey has been unexplainable. It's been difficult on so many levels. We lost health, we lost a piece of Rylee, we watched her morph from one thing to the next as effects of chemo, drugs and poor health set in. We've been in and out of hospitals, went from one procedure to the next, from this lab to that appointment, have diligently given some type of medication daily. We've fought several battles, had many inconveniences, a few set backs and have had our hearts broken more than once. We've been sanitized, isolated and had to miss out a time or two. There have been highs, lows, frustrations and tender mercies.

But you know what? It has all been worth it. This is Rylee today. She has grown up on us in the middle of the fight of her life. She was a baby of 18 months at diagnosis and is now a 2.5 year old little lady. She's now in a big girl bed and is learning how to use the potty. When we arrived at Primary Children's we were told that she was lucky to be alive. Her blood counts were at a dangerously low level. That shakes you. When I look at all that we've gone through, no matter what-- it has been worth it. Worth it to have her here with us, worth it to experience these milestones, worth it to hear her laugh and listen to her talk and remind us what life is all about and what really matters.

She's not been feeling great today. She had treatment (spinal tap + chemo) on Monday and she's starting to feel it. She's also a litle emotional from her montly dose of steroids this week. This has all become part of our new normal. But, we'll continue fighting. We'll get her well. I really feel like the worst of it is behind us.

{Wow! Look at all that hair. Thanks $8 Hannah Montana wig}

So..tonight we're going to enjoy a very normal night as a family. Something that we didn't have for much of the year. Today is a celebration. A celebration of our survivor, Rylee. To celebrate what we've gotten through, to celebrate what is behind us, to celebrate what we've learned.

"There is no obstacle too great, no challenge too difficult, if we have faith." (President Gordon B. Hinckley)

{Heads Up: While I've shared much of our journey on our blog, there are several aspects that I feel have been left out. I could honestly write a book about many aspects of our experience, but who has the time to write a book? Certainly not me. Instead, I've decided to share a little more depth of our experience during this month that marks our one year cancer anniversary. This is really more for our family history than anything, as I plan to do a blog book, so I'm sorry if it feels like I'm beating a dead horse. }

Monday, September 28, 2009

General Conference Pack

Hey, if anyone is interested in printing off a conference packet for your kids, let me know and I'll email you one. Our Primary Presidency sent us one that's updated for this next conference. I'm sure there is some way to just add the document right here, but I'm just not that blog savvy.

Friday, September 25, 2009

We've got a crawler...

Jaden just turned 7 months! He started crawling about a week before his 7 month mark(about two weeks ago). He used to get so frustrated about wanting to move. Now he's on the go and keeps us on our toes. He's already crawled off our bed, had a close call down the stairs and crawled to the tub, stood up and fell on the tile floor. I can't keep up with this kid!
He's still a little ball of energy. I'm not kidding when I say he really can't hold still-try holding him. MAJOR wiggle worm! Thankfully his spitting up/fussiness has decreased quite a bit now, but we've still gotta keep the burp rag close after eating. He still loves being held, is not a great sleeper at night, but does pretty good with naps. He is adored, mauled and fought over by Jace and Rylee, which has made him pretty tough. He's a pretty good sport with those two. He's got a cute little giggle and an adorable smile. I love his dimple. He's been babbling and says, "da,da,da,da." He can now sit, stand, crawl and even cruise around the furniture a bit. His life is like a flash in front of my eyes.
Where has 7 months gone?

Thursday, September 17, 2009

Slow Dance

I've been in deep thought tonight.

Thinking a lot about cancer(surprise, surprise), thinking about how many lives it affects, wishing they had a cure, wondering why they don't. Did you know there are over 100 different types of cancer? And they are usually caused by one abnormal cell. It's a mystery with so many dependents. The finder for a cure would certainly be heaven sent(besides a multi-billionaire)-it's too complex otherwise.

I stumbled across a blog (a friend of a friend) tonight that told of another family just learning that their 6 year old son was diagnosed with ALL (same as Rylee's- it brought many emotions to the surface), reading about another friend who is in the middle of her battle with cancer, finding out a few months ago of a good friend of mine's mom diagnosed with breast cancer. Then, I started looking down my blog list and realized that many of you have experienced cancer in one way or another. Next month is breast cancer awareness- tonight I wanted to pass along a poem that a friend emailed me awhile ago in tribute to all those who have fought, are fighting or will fight this terrible disease. I'm sure they learned to slow down and realized what life is really all about.


"Slow Dance"



(This is a poem written by a teenager girl with cancer. It was passed along by her doctor.)

Have you ever watched kids on a merry-go-round? Or listened to the rain slapping on the ground? Ever followed a butterfly's erratic flight? Or gazed at the sun into the fading night?

You better slow down.

Don't dance so fast. Time is short. The music won't last.

Do you run through each day on the fly? When you ask how are you? Do you hear the reply?When the day is done, do you lie in your bed with the next hundred chores running through your head?

You'd better slow down.

Don't dance so fast. Time is short. The music won't last.

Ever told your child, we'll do it tomorrow? And in your haste, not see his sorrow? Ever lost touch, let a good friendship die cause you never had time to call and say,'Hi'?

You'd better slow down.

Don't dance so fast. Time is short. The music won't last.

When you run so fast to get somewhere, you miss half the fun of getting there. When you worry and hurry through your day, it is like an unopened gift....thrown away.

Life is not a race. Do take it slower. Hear the music...before the song is over.

------------------------------------------------
I hate to name names, but I was shocked when I realized how many of you have also been affected by cancer (You'll know who you are). And this is just from those who read my blog.

Thinking of:

Amy H.'s father-in-law
Allison's friends
Amy S's mom
Katie C's mom
Jenny J's brother
Hailey's mom
Meagan's sister
Charakie's husband
Audra's brother-in-law
Jillian's mom and mother-in-law
Stephanie W's husband
Nicole's mom
Toni's mom
Katie' E's daughter
Rich's dad and sister
Tiffany S's husband
Vince's sister and wife
Angie herself
Leilani's mom
Tracy's mother-in-law
Sydney's sister
Ardath's husband
Bev's dad
Our families granddaughter, niece and cousin
Jace and Jaden's sister
Mine & Justin's daughter
Rylee herself

Leave a comment if I forgot anyone or if I named anyone wrongly. I think it would be interesting to note what kind of cancer too. Seriously, Race for the Cure!

Saturday, September 12, 2009

I'd love to do a post but....

1. Old computer got a virus

2. New computer took awhile to get here.

3. Trying to get familiar with new computer- anyone a fan of the new Word program, how about Vista? Not sure what I think about it. Maybe I should have gotten a Mac? Change takes awhile.

4. All of my pictures, files, life are on the old computer- tyring to figure out how to transfer it over without transfering the stupid virus as well.

5. Have a ton of enrichment stuff that I'm trying to figure out/organize. Speaking of organization- anyone feel qualified to teach a class on organization? Let me know any recommendations from people in this area. Or...I'd love to hear your best organizational tips- the class is on creating a system (homework, mail, housework, kids toys-anything that needs organizing). Or..if you have a picture of something really organized, email it to me for ideas!

6. Life moves at a rapid pace. I always have more to do than gets done.

7. Silver lining is that we have been busy, so updates will be fun once I get to them.

Saturday, August 29, 2009

Jace Turns Five!

Happy Birthday Jace!

DSC_0892 copyweb


Five years ago tomorrow (Aug. 30), we welcomed our first son into this world. Amazing how fast it has gone. Jace is growing up so much. We threw him a carnival themed birthday party and invited all of his friends and he had a wonderful day!

Our computer got a virus, so I'm using my SIL's computer, but I'll post more details of his party once our new computer arrives.

We love Jace & and appreciate all of the help he is to us and Rylee and Jaden. He's had to deal with a lot this year and has learned quite a bit about sacrifice, compassion and selflessness. Our family wouldn't be the same without him. He's a great boy & we're lucky to have him.

Thursday, August 20, 2009

What's grosser than gross?

It's true...you learn something new every day.

My kids always think that flies are bees. To try to teach them that flies are harmless, I picked out a book on flies at the library. What did we learn? That flies are disgusting and not as harmless as I assumed.

Here's what it said. Gross!

Houseflies lay their eggs in rotting, smelly vegetables or in bad meat. (Yes those little white things headed for the food are fly eggs- YUCK!) Sometimes flies lay their eggs in our food. Female houseflies...come into our kitchens and eat our food. Flies squirt juice onto their food (which is really our food) to make it very soft. The flies then suck the food throught their feeding tubes.

The fly lays hundreds of eggs. After about two days, the eggs hatch into larvae. THe larvaie of many types of flies are often called maggots.

You might want to think twice about leaving food out uncovered or for long periods of time.

Makes me want to throw up.