Brain Tumors and Blessings

As you have noticed (if you are here from before) I have revamped the blog. Every once in a while your closet, makeup and even blog need some updating.
I also edited the tabs down a bit also. The "Threads" tab is anything to do with fabric. My slight obsession...fabric. You can always spot someone who speaks fabric, because they feel their way through stores. We HAVE to feel it!
The other tabs I feel are pretty self explanatory. But I am going to add in another one. Parenting. NOT that I can offer much in the way of advise. Just some things I never knew I never knew until I had kids (and NO that is not a typo). I have learned so much about myself since having kids. I don't think I would have learned .01% of that without those darn kids (that I am really excited go back to school on Monday!)

So to get us started, I was thinking about when Avery got diagnosed. One of the first blessings we got was she was actually misdiagnosed at first.

They day we went to do Avery's MRI I took all the kids with me. It was suppose to be a quick 30 minute procedure and then we were going to do some fun stuff while in Seattle. It had been scheduled toward the end of the day, but there was an ice cream shop the kids wanted to try. And it was summer, so no school. So we all loaded up and went. The other kids got to hang out in the sibling room making crafts, meeting Miss Washington and playing games. Thank goodness for great children's hospitals and all their amenities. But after her being in there for almost an hour the tech came and told me they had to do contrast.
Now, I am not a nurse, but even I knew that they don't do an MRI with contrast unless there is something they are trying to see. And honestly, I didn't panic. And when they said we couldn't leave without seeing a doctor, I was still calm. The doctor explained she had a brain tumor and the radiologist wanted to admit her right then. But he (the neurologist, the only doctor we had at that time) felt she was fine to go home and we would schedule appointments to see other doctors right away. It didn't sound odd. Somehow, it felt right. I don't know how else to say it. Maybe it was because ignorance is bliss and I had no idea how this would affect us. But somehow this didn't feel like a kick in the stomach.
The doctor was saw was actually transferring to another hospital in another state, but said he was going to make some calls and we would be meeting with Dr. Ojemann on that Wednesday. This was Monday.

We did go for ice cream, but my head was starting to process the information. The minute I got home I looked up Dr. Ojemann. He is the HEAD of neurosurgery at Seattle Children's. I at least knew that you do not see heads of departments unless something is really wrong! That's when all the worse case scenarios started playing out in my head.

I had made a crockpot dinner and got the kids all eating when I decided I had better call our bishop. To those of you not LDS, it's a pastor. He wasn't home, so I left the message with his sweet wife. I think all I said was, "they found Avery has a brain tumor." She said she would pass along the message. I hung up the phone and walked over to the table. Before I got even a bite in, there was a knock at the door. It was our bishop. Now this might not sound unusual, but he lived about 15 minutes away. So when his wife called him, by some miracle (not small) he was within 5 minutes of our house! He came in and stayed with us for the evening.
When Chris got home, he came in and put Avery on his lap and for the first and last time that I have ever seen, cried. All the emotions from his dad's tumor and surgery came flooding back and the thought of your child having to go through that I guess was too much even for him.

They did get us in that Wednesday afternoon. It was just Avery, Chris and I that went to Seattle that time. After checking her in we met with the "team". That day it was Dr. Ojemann and Dr. Olsen. They said brain tumor board had met that morning and Avery was on the list of discussions. There were conflicting opinions but with either option, this was basically nothing to worry about.
Most thought it was an optic glioma. Just some discolored tissue, they said like a freckle. Not really doing much. Not growing or causing any issues(I WISH!). I just about laughed out load. Honestly. I had worried for two sleepless nights over a freckle? Seriously? So we went home...totally relieved!

This is our home in Washington. Built in 1903. It had three bedrooms (kind of) and ONE bathroom...don't ask. Oh and no garage. But we did have chickens, bunnies and fat squirrels.




It was summer in Mt. Vernon, Washington. Our first summer there. We had moved from Las Vegas and I was tired of being cold...all....the...time! Not kidding. For example, my mother-in-law came for the 4th of July. The high was 65 degrees. I REFUSED to turn on the heater....in JULY. So I baked a turkey. I figured having the oven on for four hours should heat the 100+ year old house enough I wouldn't have to turn the heater on. And all spring I had suffered from seasonal depression. I didn't know how bad it really was until I took the kids to Utah and had been sitting out at the pool one day, when I realized I finally feel like me again. It was the first time I had ever encountered any type of depression. I had no idea how bad it had gotten. But sitting there in the pool that day I seriously was re-energized.

If Avery had been correctly diagnosed, we would have been dealing with that instead of on vacation in the nice warm sun!
So there you have it. A wonderful bishop and his wife right exactly where and when we needed. A tumor that was so out of character they didn't know what it even was. And sunshine, blessed sunshine. Where the peaceful happy moments roll. Do you have sunshine in your soul today?

My New Years Resolution

About three years ago a good friend of mine turned me onto a new idea. Instead of a New Year's resolution she picked a word to focus on for that year. I LOVED the idea! So for the past three years I have done this. My word for 2014 was HOPE. It's shown up in my life all over the place.

I reached out to my fb friends to get some ideas for this year. I wanted something with action. One suggested ENJOY. I had joy last year, and even though it's close, ENJOY had action to it. I strongly considered this one. I also considered EMBARK. It also is part of the youth theme in our church this year. But it didn't feel right.

At the same time I was considering word options, I got a neat opprotunity. A friend of ours is putting together some really great podcasts and asked Avery and I if we would share some of our story and some of the things we encountered in the way of challenges with cancer. I had been thinking it was time to start sharing some more of the journey we had taken. Not just the treatment updates, but how it actually feels to have a child with a brain tumor. And all the hardships and all the great things we encountered. Then, I had it. That's my word.

SHARE

I was watching "Heaven is for Real" (if you haven't seen it, you MUST). The father talked abou when he thought he might loose his son. He said "something inside me broke". This resonated with me. I felt like cancer had broken me in a very deep place. I was blessed this year to move to Arizona. Where we weren't the cancer family. Where no one had seen Avery sick. I was able to heal. She was able to be a regular kid (for the most part). I still carry the scars. The memories and lessons of those two years. When I see another family in the middle of their struggle with childhood illness, I feel it deeply. But I can read those stories now. I can offer support to those mothers. I can use that experience to help. I am ready to share. I want to share.

You might learn all sorts of stuff you never wanted to know about me. TMI to the max. But, I am hoping by sharing with you that I will help you to feel something. Or think of something you have never thought of before.

To start our story we have to start at the beginning. Not like the beginning of all man kind, but with my kids. It's funny how their birth stories actually reflect a lot of how their personalities are. I don't know if your kids are like this but here is how mine go.

Nathan. He came two weeks early. My labor was short (four hours) and very hard. My epidural worked for about 10 minutes. The second dose, for about 5. By that time it was too late for any meds. So basically I had him natural.

Avery. She came right on time. My labor was shorter and harder. The nurse sent us home and she was born on the living room floor. (NOT kidding) It was just me, Chris (dad) and the 911 operator. One day I will tell you the WHOLE story. And obviously, no epidural or meds for pain.

Payton. She came early. My labor was short (four hours) but the epidural worked perfect. It was my easiest labor. I actually enjoyed it. I never thought I would ever say that!

Hallie. Came over three weeks early. Chris was in Seattle. I told him not to go. But in Hallie fashion, she took her time (8 hours) and made sure everyone was at the party before she made her entrance. Oh and epidural did work fine.





What this translate into:

Nathan. He is our practice kid. He makes sure we are prepared for his sisters. Really he is a good kid and doesn't challenge us too much (hopefully that doesn't change!)


Avery. DRAMA QUEEN. Had to make a grand entrance. Had to do make sure we all had something to talk about...for years!!


Payton. Wants everything fair and easy. Loves to be on a schedule. Wants no one to hurt or feel bad. My easiest baby and the only child that can handle diabetes.


Hallie. Total yellow personality. Loves a party. Loves to have fun. She did try to come early and let us know, even though she is the youngest, we were not to forget her in any way. We never have.


There you have it. My first SHARE. And don't thing that this blog is the only way I am going to be sharing this year. I am also starting a little business. I am going to share some of my sewing skills and rent modest, beautiful dresses. Mostly for prom and home comings. I will also be sharing in all aspects of my life. You will most likely hear about most of it.

My cancer kid

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YES!

There are so many things in life that get us down and want us to not believe in ourselves, but I found this address given by Steven Colbert to a graduating class and I thought, if we did this many of us would be much happier at the end of our lives.  So I hope you enjoy this!
"Say 'yes.' In fact, say 'yes' as often as you can…. You are about to start the greatest improvisation of all. With no script. No idea what’s going to happen, often with people and places you have never seen before. And you are not in control. So say 'yes.' And if you’re lucky, you’ll find people who will say 'yes' back. Now will saying 'yes' get you in trouble at times? Will saying 'yes' lead you to doing some foolish things? Yes it will. But don’t be afraid to be a fool. Remember, you cannot be both young and wise. Young people who pretend to be wise to the ways of the world are mostly just cynics. Cynicism masquerades as wisdom, but it is the farthest thing from it. Because cynics don’t learn anything. Because cynicism is a self-imposed blindness, a rejection of the world because we are afraid it will hurt us or disappoint us. Cynics always say no. But saying 'yes' begins things. Saying 'yes' is how things grow. Saying 'yes' leads to knowledge. 'Yes' is for young people. So for as long as you have the strength to, say 'yes.'" – Stephen Colbert, Knox College Commencement Address

The Honeymoon is over...

    I am not referring to Chris and I. This is about Payton.  And no, I didn’t just marry off my soon to be ten year old.
     So for anyone without a type 1 diabetic, this is when the pancreas REALLY stops working.  Usually when diagnosed the pancreas works about 2-5% still.  For some this is over in a few months.  For Payton, it’s actually taken almost a year.  And we had about a year and half of testing and watching before that.  So we count ourselves lucky to have had the slow induction into insulin, testing and carb counting. 
    Payton has been on the pump for almost four months now.  And we are super grateful that we had that time to get that part figured out before the big changes hit.  The pump is NOT an easy device.  It does amazing things, but it also requires a lot more work.  Testing at least four times a day and constant downloading to reassess settings.  But the trade off is being able to change as much as once an hour how much insulin she is getting.  That’s cool.  And then you can have it give you 50% of the insulin up front and the rest over time.  Like when you go to a movie and eat popcorn.  You don’t want the insulin all at once when you are snacking.  OH and the BEST thing???  You change the site once every two to three days.  It’s like having one shot verses at least four a day.  And if Payton has lets say a Christmas party, she can snack away without having to give a shot for every few items she eats.  SUPER COOL!

Technorati Tags: Type 1 diabetes,Diabetes,Diabetic pump,diabetic,insulin

Rearrange my life

Okay, I know it's been FOREVER!  So I will try to post at least a few times a week!
Here is an update.
    Payton was officially diagnosed with type 1 diabetes on January 6th.
    We moved to Arizona.
     We have lots of new doctors, teachers and friends.
      I rearranged my living room yesterday and it feels awesome.
      I am working on my books (really, I can't believe it either).
Seriously, it's been a crazy few months.  But after about a month in this house, something was bugging me about the living room.  So yesterday with the girls help, I moved the furniture around.  Several times.  Sometimes, even on paper you can't tell.  You just have to move it, and move it again.  And keep going until it just feels right.  Now, every time I walk past it, I sigh.  It feels right!
   Next will be the master bedroom, but first I have about three more boxes that need tackling.
Have an awesome week!

Chickpea salad

So I attempted the 27 day cleanse.  Got to about day 10 and felt hungry and deprived. Seven pounds lighter, but it didn’t seem worth it.  So I am just trying to eat better.  My friend Anna gave me this idea, and it was delicious!!  No feeling like I am missing something.  And super easy too!!

Faux chicken salad AKA Chickpea Salad

1 15 oz can chickpeas (or garbanzo beans, same thing) drained and rinsed

2 Tbsp sour cream, plain greek yogurt or mayo

1/4 cup sunflower seeds

tomato sliced

sprouts

whole wheat pita bread

Put chickpeas, sour cream and sunflower seeds in a bowl and mix.  Use about 1/3 of mixture to top pita.  Add tomatoes and spouts.  Enjoy.  YEP, it’s really that easy folks!

Technorati Tags: chickpea,chickpea salad,garbanzo beans,vegetarian,healthy eating