Being open and vulnerable to feeling joy

I love my family.
I love my ward and neighbors.
I love fresh produce from the neighbor.


I don't like feeling too busy.
I don't like going to bed too late.
I don't like crumbs under my bare feet in the kitchen.

I've been listening to some lectures by Brene Brown. I have loved the listening of it (usually while doing dishes, working out, making food, folding laundry), vs reading . It has given me encouragement to keep opening my heart. After June 7 when we heard Ruby had to stop immunotherapy, the tumors grew, with a baby on the way and worried about all that can go wrong, I was really feeling closed, bracing for the worst, practicing dealing with bad news.  Over the summer I've been able to relax, hear good news (Ruby's tumors have stayed the same, baby is healthy), and savor it.  Bonus: no cavities for me at the dentist yesterday. PS  Predentive, and a peeled  lemon in my smoothie, are my new favorite.

I feel joy. Mark and I walk across the parking lot as the kids run ahead, and I think "I really like my family".  I love right now. I thank Heavenly Father for another day, healthy, happy, safe. At the same time, I know hard things will come. We are going back to diapers, naps, nursing, not sleeping, fitting another person in our 3 bedroom living space...thats all the stuff I know will happen, and there is the unknown. I'm still excited.

I have hope that the doctors predictions can continue to be wrong, or different. Its a must, to have that hope. Its hard to plan, in our situation, with cancer doing who-knows-what in Ruby's lungs. To not assume everything will be perfect with this pregnancy. So instead of looking forward to that next trip, or holiday, or whatever, I get to look forward to after school, working out, walking around the neighborhood, (although not really bedtime-the brushing/flossing specifically).

It's not all fuzzy warm peaches. I feel like I have to qualify this post. I'm not all "Seize the day" over here. There is plenty I'm avoiding right now by doing something I enjoy, writing on my blog. Dishes, dirty floor, organizing/cleaning out clothes. And that pile next to my computer. Always a pile.

As I look at the childhoodcancerwarriors instagram account each day, I am reminded of reality, of the sadness and pain others are going through (as parents and children), and its a good reminder. I get another day with my people, my family, the girls.

family dinner in Park City

We got a surprise visit from Elsa and Anna!  My girls loved them more than any other Elsa and Anna they've ever met. Thank you to those who sent them and the Build a Bear gifts!

Siri's first day of 2nd grade. Glad I took this real quick and she was not feeling well from 6am-right before I hesitantly took her to school.

Through Millie's Princess Foundation we got to see Beauty and the Beast!

Glad I added this pic, it reminds me to write about this part of cancer. Everything I have read encourages more or mostly eating fruits and vegetables. Cut/limit sugar. I'm no doctor, but our cells like quick energy, cancer cells included. Our cells will convert fat or protein to glucose eventually, but I don't like the idea of making it so readily available-especially in worse forms like high fructose corn syrup. Yes, fruit has fructose...but also a load of other good stuff like fiber and nutrients. Not that sugar in general will guarantee the cancer to grow faster, but it certainly doesn't seem like it would help. Cancer also likes a more acidic environment...which can also be created by sugar. And most importantly... lots of sugar messes with your insulin, higher levels could influence tumor growth. No doctor here, but I haven't read anything yet that suggests sugar over a green smoothie.

Ruby isn't on any other treatment, so nutrition is all I know what to do to help her right now.

This. Is. Hard. Yes, for me as a normal healthy person, but especially feeding a 3 year old.  I want treats, I want to give the girls treats! I have felt like I hurt others feelings who have good intentions of giving a treat as a gift or kind gesture. Please don't feel bad! Its just not what her body should have right now.  So thank you first for reading this post, and for helping me feed Ruby as best I can.  

Sleepover at the Thack Shack and a hike to Donut Falls

Jane's 1st day of Kindergarten! 

Love that there is a cute group from our neighborhood

She requested oatmeal with peanut butter and sprinkles for breakfast :)

This was my favorite part of the day...seeing sisters walk home from school together.

Mustard

Mark doesn't like mustard, or most condiments for that matter. So when Siri asked me "Does Dad like mustard?" and I said no, she was confused because he's always saying the word mustard in this funny voice.  The girls think its hilarious. He's just impersonating the Mad Hatter from Alice in Wonderland. Families all have our funny quirks right :) I, on the other hand, love mustard. And pickles and ketchup, no mayo though.

Ruby had her last dance class of the summer, Jane had her first soccer game, Siri two teeth pulled and a cavity filled. We got a visit from Mark's good friend Blake and his fiancee Kristen. We are more than excited they're getting married in a couple weeks in Alaska! Our girls don't like Blake they loooove him. We went to Cowabunga Bay for the first time, I played Bunco, and we spent a couple days in Bear Lake with Mark's family. Back to school this week. The summer has been fulfilling and fulfilled and now I'm ready to put up a few fall decorations and have non-90+ degree days. No winter though, just, mild fall like baking granola, eating fresh peach pie and tomatoes and going on walks and leisurely bike rides around the block kind of fall.

Dance class with Danielle

swimming with Blake and Kristen

I've been not getting up early this summer, but when I do, I'm glad

Cowabunga Bay

Bear Lake

They won their first game, go Lightning!

Posting this picture per Jane's request. 

She loves to do headstands lately.

And a note on the kid with cancer. Sometimes I still don't want to believe it. We'll do another scan sometime in October I think. She still is just as usual, no symptoms or signs of sickness. 

There will be another story with Ruby and our neighbor, Joe Venus, channel 5 on August 31 at 6:30pm. Joe goes to our church, and has also been an artist much of his life. He was inspired to paint/draw Ruby as he was touched by her spirit when he saw her. She does that to some people :)  I just squeeze her and kiss her instead of draw her since that's not in my skill set. Although that would be a kind of fun(ny) to compare my drawing to Joe's. 

I'm feeling good and little baby is cooking well as far as I can tell. With baby #1 I think I couldn't even get maternity clothes to stay on me until 20 weeks. Now at 21 weeks with #4 I can't fit most of my regular clothes. Quad screening blood tests all came back normal, I checked out healthy at a recent physical with my regular family physician, and the dermatologist didn't find anything weird to remove. Now just the dentist next week and I'll be ok on dr visits for a while!

20 weeks pregnant, one month until Siri turns 8

I look at Instagram a lot, too much. Something I'll get better at. Less screen time is good for us all! (...as I write on the computer to update this blog...) So I was feeling like everyone was having fun outside, but not me. I didn't feel less than or anything because of it, more the opposite, like get your buns out of the house and out there in nature!  So, we've done more of that this past week :)

Went to Seven Peaks with the Miracle Mascot Foundation and Millie's Princess Foundation. 

The girls loved it. I felt like I was having fun because they were having fun, but was working hard to tolerate the grossness of it. 

Oh bless Siri's teeth. We've been to a few orthodontists to get opinions. Her teeth are so crowded. She has to get 2 baby teeth pulled and a cavity filled this week. Braces won't be for a while, but there may be help she needs before then.

Went boating with Mark's brother. Ruby's first time behind a boat!  I was a wimp and didn't even get it, but it was so nice to be out on the lake and see the kids so excited.  A sleepover somehow came up, and Aunt B, the loving aunt that she is, had all 3 girls over. They didn't want to come home :)

And Siri's first piano lesson! I have yet to get a piano or keyboard, trying to figure that out, but wanted to start lessons. Her teacher lives around the corner from us and is enthusiastic about Siri learning. I hope this is something Siri will stick with for a long time. I took piano for a bit when I was young, but refused to practice and quit. I regret it!

Lucky Siri gets all the new, and nice, hand-me-downs.

Scootering didn't keep her from wearing those heels.

She turns 8 one month from today!

Trying to eat healthy takes as much reminding, remembering, and effort as anything else in life like exercise or spirituality. I want to feed Ruby, and the rest of our family, as best I can. Generally this means less refined carbs, sugar and hot dogs, and more vegetables and fruit. Thank you for helping and supporting me in this!

This saucy guy and I got a night away at Snowbird. As we hiked to the top of the tram, we talked about his work, books we're reading. I loved it-being with Mark, talking, all while being in such a beautiful place. While we were on the ridge, I was thinking....I wonder if Ruby will be alive next year at this time?....I couldn't hike anymore. I had to stop, cry on Mark's shoulder literally, and take a few to catch my breath. He lovingly and confidently said "She will be always be with us. She is ours forever".  We started again and talked about our favorite things about her. The way she comes into our room in the mornings and snuggles by me. (Usually) waiting patiently as I read my scriptures.  The way she sings with so much gusto. Her love for the water. 

This is the 3rd summer we've swapped Liz and Dan. They watch the girls, then they take a turn and we watch Sam. This time we got to stay at the Cliff and have a fancy dinner thanks to the wedding coordinator Mark knows up there. Thank you Christena!

The kids dancing while we were away

the ridge up to the Tram

Breakfast at The Atrium

Mr Moose as we were pulling out of the parking lot

Friday afternoon I took the girls up to my Mom and John's to play and sleepover. Mark stayed home to work.  Typically when we go to my moms in Marion (near Kamas) we go for a few hours for family dinner and then go home. The girls loved talking to Papa John, and playing trains. Siri practiced the piano a lot and I stayed up too late watching the Olympics. Such a peaceful place and beautiful to wake up there all nice and cool and country.

Yesterday we went up to the Fetzer cabin for the day

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another from our hike to Cecret lake. Lately these girls have been such giggly spazzes.

a light heart

My heart is light tonight and full of happy and thankful and joy.

Ruby had a CT scan this morning. No tears when they accessed her port or during the scan. (Last time she really struggled and cried). We waited quite a while to see Dr Holly, but Ruby was content with the princess toys and her imagination, with some chocolate milk and crackers.  We are immensely grateful that her tumors are the same. She said they may be a few mm bigger, but not really measurable and no new tumors that they could see.  YAY YAY YAY!  I was bracing myself for them to be double the size. Dr Holly doesn't know why. Could it be from the previous immunotherapy?  Maybe the cancer cells have just slowed for the time? And in my mind I'm thinking, maybe our fasting and prayers?  I don't know why either, but I feel like this news is a gift right now and I can keep loving my family and girls (in addition to the real stuff like trying not to yell every time they leave their stuff in the hall/table/bathroom floor).

We are planning to do another scan in 2 months, but nothing until then. I love not doing medical stuff for my kids.

I was feeling so tired this afternoon. I did a little bit of a workout at home and got a lovely visit (and cheesecake-savored that tonight, thank you!) from a friend. Then we tagged along with Mark up around Alta. He had a photo shoot so I wandered with the girls. It was raining for a while and I'm glad we held out. The sun broke out and it was chilly and beautiful.  A friend saw us in the parking lot and I loved chatting and being with our kids, swinging them on the chair lift. It got me a lil excited for fall :)