Oh heyyyy

Hi people,

Sorry no posts lately....lots of living in the moment. 

Playing with Annie on the trampoline on a mild fall afternoon while sisters are at school. 

Playing the game Apples to Apples before bed. 

A trip to St.George. 

Visiting friends and family.

Waiting at the end of the driveway, watching for sisters to come around the corner as they walk home from school.  

Making plans. My mom's 70th birthday and a girls weekend while my sis is coming into town. Ruby and I are heading to St.Jude in a couple weeks. It will be short and sweet but I hope to learn more and get some insight as to what we could do if we need to change treatment for her. Mark is getting his "man surf trip" plans organized. This will be the 5th year! 

Last week Mark was asking me about my goals. Long story short, I ended up doing deeper thinking than I have in a while and recognized I've put future goals to the side. Living in the moment is so warm and I love soaking it in. But I also have really avoided thinking about the future. It's scary. It makes me worried, and sad. Do you feel that way? 

What if the disease spreads? What if she starts feeling sick? 

So I just avoid it.

With Melanoma you are never considered 'cured'. You would be N.E.D...no evidence of disease, but it could come back any time. And with Ruby, just keeping the tumors stable is a miracle. I haven't yet made any goals, but I know I should, and need to. Especially long term goals. Mark is always learning, studying, growing, progressing. I don't want to be left in the dust so I gotta get off the couch and join him!

Ruby will have her next infusion of Nivolumab Halloween morning...I can't remember what dose this is...28 maybe.  She had her last soccer game today. I don't think she'll miss it as she asks, multiple times a week, when we can go swimming. I want to put her back in swim lessons just to get her more time in the water since she loves it so much.

Annie is 11 months old, turns one next month! So thankful for the little crawling bunch of sunshine she is. Her top two teeth are coming in so she does a great job of drooling all over the floor and then crawling over it. Counts as mopping right?

Jane had her last soccer game of the fall season today. I love that she loves it, and is great little player! I love that Jane is always up for a trip to the store, or a bike ride to the park with me :)

Siri cracks us up with the songs, rhymes, and jingles she makes up. We are looking forward to her piano recital coming up! Practicing is not on her top 10 list of fav things to do, but she's talented and its worth the effort. I also love so much seeing how she's transformed from a super shy preschooler to an outgoing caring 3rd grader.

Mark and I are working on not giving into wanting to make cookies after we put the kids to bed at night, and yard work.

Thank you for reading this. For thinking of our fam. Thank you for all the love and friendship. For the prayers and help on Ruby's behalf. We love you.

day trip to the cabin

Visited Dead Horse Point State Park and Arches/Moab

Hayes Tough Dream Ball!

Loved being gathered with so many amazing people and other cancer fighting families.

Nurse Becky is her fav

Our attempt at a selfie. It was windy. And I have 4 kids.

sister time in St.George

Workouting.

Mom bod after 4 kids doesn't get in shape as quickly as it used to.

Trying to be patient with myself. I'm older and creakier! 

Our neighbors dog had 8 puppies. Looooove it.

Make a Wish trick or treating!

We'd never been before. Pretty sure we left with 25lbs of candy. After they gobbled up a handful of candy I offered to trade the rest for trip to Claires. They happily picked out a couple pairs of clip on earrings :)

fun times today! Got to have lunch together between Ruby and Jane's soccer games

Ruby update

Already 3 months since Ruby's last scan. We did a chest CT today and her usual infusion of Nivolumab (Opdivo).  I'm thankful she's doing well, but there is some new growth. The 2 bigger ones in her right lung have grown a bit. In Jan 2017 the biggest one was 20.3x27.1x8.14 and is now 19.9x38.2.17.3. So the bigger ones have grown, and "no new right or left-sided nodules are seen, most of the remaining nodules are stable in size or minimally increased".  Her oncologist, Dr Whipple, is going to get a few other opinions to see if there's anything we should change, but for now we're staying the same course.  

I'm still doing my best to feed me and my fam as best I can and try to keep fun, love, happiness and peace in abundance. Its hard with 4 little kids! but its worth all efforts :)

1/2 marathon

I ran my own 1/2 marathon last Saturday. I'd made it a goal to do a race after I had Annie. I took what I'd need in case I did the whole thing, but thought I'd stop after a couple miles if I felt too sick or gunky respiratory wise.   I think my body was happy to be out! A perfect morning for a long run.

Icing Smiles

Icing Smiles
Click on the link above to read about them.
Amazing.

I heard about them through other cancer moms. A couple months ago I looked into having a cake made for Siri. Little did I know that the cake would be incredible and the baker even more amazing!  As we were texting back and forth, she accidentally text me in Italian. So all I knew about her was that she was from Italy, and volunteers to bake cakes through this foundation. I love her already.  Well I drive to the pick up location (thankfully Liz was with me to help hold the cake on the ride home!) and it was Sweetaly!  A gelato place I've heard rave reviews about. The baker was Laura, one of the sisters who owns the business. Such a kind and talented woman. We bought a few little extras and then were floored when she brought out Siri's cake. Siri had requested a Calvin and Hobbes theme, vanilla and orange type flavors. I didn't have high expectations...I mean, they're making it for free, and I don't know how many of the volunteers are professionals.

This woman is a pro.

It was exactly what Siri wanted, and it had a serious wow presentation...but even better? The cake was SO GOOD, complete with multiple layers separated by Bavarian cream. The cake was enough for 30 people and weighed at least 15lbs.

The original Sweetaly is the one on 3300 South and is where they actually make everything. They don't have as many gelato flavors as the other stores because its a small retail space, but that's where you'll find Laura. Go visit her!

best worst sick day and a birthday

102.9 fevers yesterday. It broke last night so I'm feeling better now. Yesterday, was hard. Yesterday was also awesome. When I started feeling sick Tuesday, my neighbor, who I haven't talked to in a few weeks, called to see if Ruby could come play. Yes, please and thank you! So helpful. There could be no more literal way that my prayers could have been answered. God is aware of us and we are each others angels! It sounds so cheesy and non tactile, like fluffy feelings or something but its real.

Yesterday we saw another neighbor who offered to have Ruby so I could rest while Annie took her morning nap. As I was offered help, it made it easier for me to ask for help. I hesitated and actually cried because I was embarrassed, but I know I needed help. And my dear Liz crashed on her mountain bike yesterday and got a concussion so we were both useless :)

I asked Mark to not go to Young Men's last night. He made dinner (Swedish pancakes for Siri's birthday eve) and took Annie with him (she was being a screaming boss baby) to Ruby's soccer practice. Jane got a ride to soccer practice, 2 neighbor friends came to help clean (I knew I needed help when the floor was so dirty Annie was choking on stuff but I didn't even have the energy to vacuum), and another friend came to help decorate for Siri's birthday after the kids were asleep. I tried to spread the word its Siri's birthday today to help her feel special. 

Once again, the hardest times also bring out the best and help me to be grateful.

Today our dear Siri celebrates another birthday. I am thankful to get to be her mama!

I love when Mark writes poems, he has such talent and love