Oh hey

Just a note to say hi. Having a beautiful week with my side of the family. There will be another Ruby story on KSL,

Sunday at 10pm.

The good stuff

Wanted to update, so starting with pics

I love that Siri stole my phone and captured Jane's cheesy soccer pose so well ;)

This park visit ended up in water tag and happy kids

Picked up their art at Color Me Mine and visited Grandma Carol

Jane's upstart graduation. I loved seeing how proud she was of herself

a new item for our trip to Cali and other future water fun

A surprise visit and yoga with Grandma Sandy

I loved just watching them play and enjoy the sun and water

She has a few pair of boy underwear in her drawer, and lately, that's all she picks to wear. 

We were given a tea party photo shoot from a friend, they love getting dressed up and I love pics of my kids, I can never get enough. Thank you!

this workout, took all the lazy in me and shoved it in my face

and this morning, a bike ride before it got too hot

This week has been more relaxed, less busy. But the challenge has been with my temper. I have been pretty impatient with the girls. I apologize to them waaaay more than I wish I needed to. One would think that knowing our Ruby is likely going to pass away from cancer would replace any tension. It does, but not completely. 3,5, and 7 year olds are still who they are. And I'm still a mom learning how to have a 3,5, and 7 year old. And 3 girls seem like sugar and spice, but guess what, they totally stink. Probably not as bad as boys, but they are still gross. They sure clean up well though.

Mark has been reading this book...

“Son,'he said,' ye cannot in your present state understand eternity...That is what mortals misunderstand. They say of some temporal suffering, "No future bliss can make up for it," not knowing that Heaven, once attained, will work backwards and turn even that agony into a glory. And of some sinful pleasure they say "Let me have but this and I'll take the consequences": little dreaming how damnation will spread back and back into their past and contaminate the pleasure of the sin. Both processes begin even before death. The good man's past begins to change so that his forgiven sins and remembered sorrows take on the quality of Heaven: the bad man's past already conforms to his badness and is filled only with dreariness. And that is why...the Blessed will say "We have never lived anywhere except in Heaven, : and the Lost, "We were always in Hell." And both will speak truly.” 
― C.S. Lewis, The Great Divorce

just regular fun

By Saturday night Mark and I just looked at each other wearily and agreed, we were spent. This week had some amazing things. But too many fun things, too close together, with Ruby not sleeping through the night, started to make things more tiring and less fun. Its been a couple weeks that she's been getting up 3, 4, 5, 6 times.  I felt so run down yesterday. I had been dwelling too much on losing Ruby this week, missing her while she's still here. I got over that useless mindset. I realize it may come back. Between the worry of cancer, and the perks of cancer, and all the rest of life right now, I was just tired.  Doing normal fun-sprinklers, chalk, popsicles-the regular summer stuff sounds great.

I do want to share a few things that we got to do and loved though.
-Mark and I went to the temple and dinner. Its calming for me. I feel at ease when I'm there. Not scared and anxious and worried.
- Getting a new car. Its taken some getting used to the new/niceness of it. I have just been used to, and comfortable, in a beater car really! Having a/c that's cold within seconds, playing music from my phone, going more than 55 up Parleys...its enjoyable :)
-Saturday a friend had spare tickets to Cavalia. That show you probably haven't been to but have seen 9 jillion billboards for. It was amazing!  I had Ruby on my lap and she kept saying "that's so dangerous".
-Taking Siri on a special date. Time alone with her is rare and valuable.
-Millie's Princess Foundation run. They put on an incredible event!  Pretty sure every Disney princess was there.

Ruby and Jane have had colds for over a week. Ruby's nose has been so stuffy, it makes it hard for her to suck her thumb (which I am trying to hard to get her to stop!) But, she uses it as comfort so I'm sure that has made sleeping harder. And she's 3, and I wonder sometimes how she feels. Would I be able to tell if I had so many tumors in my lungs?  I tried giving her a small dose of melatonin for the first time last night. She slept through the night, which means Mark and I slept too. Today was a better day.  It was a sunny beautiful sabbath day. I woke up feeling refreshed and got Father's day breakfast cooking. Sausage, has browns, english muffin egg sandwiches, juice, and fruit. Delish. Loved seeing Siri and Jane give their gifts to Mark that they had made.

Some of you have asked 'what now?' for Ruby. The plan is to enjoy our trips coming up. We will then likely try the oral drug when we get back. We will keep our spark of hope that this disease will miraculously leave her body. We will enjoy the moment, the day, that we have with each other.  That's the plan.

the best and the worst

To start with the good or the bad. Let's start with the bad. Then maybe by time I'm done writing I'll be cheered up by all the good.

Got an email from Dr Holly today.  The staining results came back from the biopsy back in March and it showed that less than 1% of the cells have the 'lock' that the immunotherapy type drugs try to unlock. So, no wonder it didn't work. And, the next drug, Pembrolizumab, has just about zero chance of working either.  Another option, or maybe our only one, is called Everolimus.  I think its like an oral chemo. I don't know. I've done a little googling, but don't want to do a lot. Pretty much any other drug is going to give her side effects.  We have been so very blessed to have her as her normal self all this time. We haven't had to see her suffer, we've had the opposite. All joy (minus those tantrums from lack of sleep, lots of sugar, and just being a 3 year old).

We gave this broken jeep to our neighbors. He rigged up a new big battery and gave it back to us. The girls new fav. Everyday, all day (until it has to charge again:)

Ruby gets to go to a few dance classes courtesy of the lovely miss Danielle. 

Love seeing Ruby's cute little bum in those leggings

I think about the moms who's child goes straight into surgery or to chemo just as they heard their child has the big ugly C word. Just today a mom posted about their child starting chemo M-F for 6 weeks, being sedated every day and having to fast. How is that not torture? The strength these moms have is inspiring. I have to remember things like this to keep me positive and thankful and not in a bubble of sadness. You make yourself look through windows instead of in mirrors. I am trying to brace myself for when she may not start to feel well.

So in the meantime, we distract ourselves from the worst and get to experience the best. We got to go with our new friend, Joe, to the Zoo on Monday morning. It was mild and cloudy. He volunteers there with the giraffes once a week. So of course, we took time to feed the giraffes.

Tonight I took the girls to the Aquarium where the Mascot Miracle Foundation put on an event. Besides seeing all the aquarium sea life, the girls got their nails and faces painted, then danced and met mascots. Siri loved the Salt Lake Bee :)  He danced with her, I loved watching! Ruby, was terrified. After a while she warmed up and would give a high five.

And last night. Ruby had her Make a Wish Proclamation Party-where they tell you that your wish will be granted. Just before we went to the park, Heather with KSL came to our house and asked me a few questions. Not sure when it will air but I'll let you know.  The party was way above and beyond hearing a proclamation. We drive up to the Draper Historic Park and there are balloons, pink, purple, white, blue, everywhere!  It was our own magical party. Face painting, crown decorating, snow cones, ice cream, and the best-Elsa, Anna, and Christoff came. Ruby clams up around lots of people, especially ones she doesn't know. She did it at her Rally, and same thing last night. But, after a while, she wanted to hold Elsa's hand and be with her. She sang with her in the microphone and talked about her today.  It seems so cliche, another Frozen themed party or wish, but when I see it for Ruby, Siri and Jane, its the best. All of this was sponsored by the Bank of England. The area manager, and his family, did all the work. His wife sewed bags for us to take on our trip, their kids were there to help with everything.  It was humbling to realize this family had been working on this for so long, thinking of us.

Ruby's wish was to get a pedal bike from Elsa. We had talked to her wish grantors (the volunteers coordinating everything) that DisneyWorld would be awesome.  Not only did she get the most Frozen themed bike and helmet you could imagine, but we also get to go to Disneyworld!  When they told us that, I want to forever remember Jane's face as she looked up at me. Biggest smile. She 's so excited to go on a plane. Jane and Ruby have never been on a plane, and have seen the ocean just once. They've never been to Disneyland/world/anything. We moved the trip from September up to next month.  I've heard it so hot in Florida in July, but we don't care.  We just want to make memories together and pray Ruby will feel well.

It is hard not knowing. Will she feel well for a month, six months? Maybe something will work for her? Maybe her time will be short?  I have to push the questions aside and just try to relax, to sleep, to only think about what we have control over.

I want to tell my neighborhood thank you. Ever since Ruby joined our family I feel like we've been high maintenance :)  I'm sick of it, believe me! But I can't deny I don't need/want help. The meals, and cleaning, and babysitting are priceless.

We are planning to be at Millie's run on Saturday.  I am excited to be there to support someone else. To not be in the spotlight, but at the same time understand, from experience, what this event really means. It will be 3 years, on Saturday, that Millie passed away.  We lived in the Flamm's neighborhood at the time she was diagnosed. I'll never forget going over to their house, with many other women, to help clean top to bottom. She had had a round of chemo and needed things to be germ free.  I thought of the devastation their family must be feeling. Wondering how they were keeping afloat. Others. Family, friends, strangers, and their own personal struggle and strength to keep on keeping on.  That's how I think. I hope to follow their example.

Rally for Ruby

I wasn't super excited to get there Saturday morning. I was so grateful for all the volunteers and time put into it, but I kind of just wanted to get it over with. Sorry, that is being honest. And then, you see all these faces that you love...I had the best time. I loved it!  Mark and I had so much fun being around all of you. Thank you for coming. Thank you for helping us to feel so loved and surrounded and happy in such heavy and hard circumstances. 

toozopia and swimsuit wedgies

We watched Zootopia. Ruby always calls it Toozopia. 

Last night as I went to floss Siri's teeth, she said her gums hurt. as she opened her mouth it was obvious her tooth was infected. Today we went to the dentist and she left with one less tooth. She did great and didn't have any pain.  Hoping it heals as normal.

Last night Ruby told me that if the medicine doesn't work she will die. "I don't want to die. I want to stay here with you". Are you kidding me? Don't say that Ruby! Why are you saying that?  I was so sad. I talked to her about how we don't know, and that we will all die, and we all get to be together in heaven. And it will all be ok.  I think Siri told her.  I quickly went to Siri's room and asked her. She denied it, but either way, I told her not to talk about it with Ruby. She's too young to understand it all and is scared, and we don't know what will happen. Tuesday night after we put the girls to bed, Siri came out and handed this note to Mark. We read it together before we went to bed. We were both just sobbing. Siri is tender. Love her. 
This is hard.

I have felt better about getting out and seeing people.  I needed some time to understand what the scan means, but I feel better. I had some emails back and forth with Dr Holly to openly talk about what I didn't want to talk about when we were at the hospital Tuesday.  I don't want it to consume every conversation though, or at least not the sad parts. There are so many reasons we have to be grateful right now.  Ruby hasn't suffered any side effects yet, she didn't have to do chemo/radiation. She is still herself. We get to be at home, close to her hospital. We are surrounded and being carried by family, friends, and neighbors-thank you people! Having Mark being self employed means he doesn't get any paid time off, but he has flexibility to be with us just about whenever we need. 

Speaking of Mark. Months ago I was talking about 'best case scenario' or the 'biggest blessing'. He asked what that would be and I said for the drug to work. He asked "Would that really be the biggest blessing?"  I was speechless. I'd never considered that. I appreciate that he had. Ever since then, I have had so much more trust in God's plan of whatever lie ahead. No, of course we don't want Ruby to pass on so soon. But I acknowledge our view, minds and understanding are so limited. 

“Have we not great reason to rejoice?” How blessed we are if we recognize God’s handiwork in the marvelous tapestry of life. Gratitude to our Father in Heaven broadens our perception and clears our vision. It inspires humility and fosters empathy toward our fellowmen and all of God’s creation." Dieter F. Uchtdorf.

I am so happy to have the families Mark and I do. I love our siblings. Families are the best. Thank you.

See y'all tomorrow morning. The weather should be nice and mild. It's going to be amazing.

The stripe suits Jane and Ruby are wearing are darling. They also give Ruby a wedgie easily.

 I love it :)

thanks Liz o for watching the turkeys while I looked at cars w Matt

this morning. usually she slowly opens the door while I'm in bed reading and comes and lays by me. Lasts about 1 minute until she get bored and goes to look for Mark.

It's ok that it's not ok

What do you do when you find out the miracle drug you were banking on didn't work?  You say a prayer, shed tears, and go do something fun.

We picked up Siri and Jane from Grandma's and went home for some quiet time. Ruby took a nap, the girls had some computer time, I laid around like a blob and around 5 it was time to get out. We've never gone bowling as a family. I didn't realize how fun it would be!  Loved it, and the girls loved it more. I got a turkey, but Mark still beat me. I have memories of going to Olympus Hills to bowl, and it being kind of dark and gross. We went to All Star lanes on State and 106 and it felt surprisingly light and nice. Still super greasy and a need to wash hands after the game, but less gross than my memories :)

We got dinner at Pei Wei then hike to the Rocky Mouth waterfall above wasatch blvd. It was what I needed. To get out and up. We had a visit from Mark's brother and he gave us two beautiful plants (I love house plants). Good to chat in the back yard and be with him. He's very uplifting.

We are trying to think about what we do next.  There is drug that is on trial right now that we could try, but its not in Utah yet. Dr Holly is going to try to get it approved through insurance, or push to get the study here (its in the works, just not set up yet). Until then, I feel like we need to understand that our time is short. How do we want to spend it with Ruby?  What memories do we want Siri and Jane to make with her?  Oh that is just about the worst to think about.  It's all the worst, so I'm thinking hour by hour, maybe day by day.

Today as we drove around, when we'd come to stop lights there would be an exhaust smell in the car.  We just fixed a catalytic converter and a few other things, but maybe another needs repair. I only say this because I want to get a different car, and I'm afraid of being judged by people.  I don't want people thinking we're wasting money on unnecessary things.

The news today makes me more excited for Saturday. To be supported and lifted and see happy familiar faces at the Rally.  P.S. register your kid for the bike parade if you haven't yet, they'll get a sweet backpack worth more than the entry fee :)
I emailed Ruby's Make a Wish volunteer and let her know that trip probably needs to be sooner than later. We had hoped to go to Disney World, etc in Sept/Oct.  The resort there for Wish kids, called Give Kids the World, is booked through July, so Mark and I need to think about if we still want to go to Florida or what else may be an option.  We do know we are still planning to go to California with my family the end of June. Looking forward to beach days.

I want to remember how giddy happy Ruby was to be swimming yesterday in her blue suit. She'd lay her head back as I'd hold her arms and swirl her in the water. I want to remember her little voice belting out songs in the car or her bedroom "Let it Go" "Fight Song" "Bombs Away". I want to remember her little hands on my cheeks, talking to me as I put her to bed.

Thank you for the messages of love today.  Thank you for understanding I don't feel like talking. If you have been in the situation where you knew your child could pass away soon, or if you had a sibling pass away, I want to hear what memories you have, what you loved that you did, or wish you would have done.

Right now

We love you. We love our family. Our girls are feeling like gold. Tumors have gotten bigger. No more Nivolumab. 

Maybe another "mab" drug. Not sure yet. Just feel like being with our family. Don't feel like talking right now sorry. 

Feeling a little heavy. Wanting to have fun together. I said a prayer after Dr Holly left the room and felt peaceful. It's still sad. And sucks. But there are so many people who know how I feel right now, including my Heavenly Father and Jesus Christ. We aren't invincible, no one goes untouched. Thinking of all the good things of the situation, between tears. More later.

Caramel popcorn

My neighbor, Debby, watches the girls once a week or so while I go workout or do whatever. This morning she had all 3 since Siri is out of school. She sent me home with a bag of homemade caramel popcorn. She's the best. I think I'd eaten 1/2 the bag by time I got home, and it was delicious!  Sometimes, I'm ok with eating my emotions :)

Since we're not going to have Ruby sedated for her scan, her clinic appt is going to be at 11am instead of 1, yay!

As with most everything in life, the more prepared we are, the less we have to be afraid of.  Going to church yesterday helped me feel more prepared for how I will handle tomorrow. Going grocery shopping this morning makes me more prepared to feed the girls lunch today. Feeling, in general, at least right now, prepared.

Less than 2 days

We wait for the oven to preheat, the kids to get their shoes on, the doctor to call us back.  But this, this waiting has been a new kind of waiting for me. Wanting it to come and not wanting it to come. Being in a relatively innocent state. Life is as usual. Looking forward to a summer morning tomorrow, swimming, a birthday BBQ for my mother in law.

But D Day is Tuesday, at 10am to be specific. I am hopeful that Ruby will be able to hold still for her CT Scan as I told them I didn't want to sedate her. We then have a clinic appt to see her doctor and get another dose of Nivolumab at 1pm.  Maybe we'll go to lunch or the zoo or somewhere between appointments.

It will be good to know, either way.

And the Rally on Saturday will be great, either way.



We will celebrate that the drug is working, or we will celebrate that she is alive and here with us now and feeling good and that we are loved and supported beyond what I ever could have imagined. People I never thought would/should care, do.   Either way, it will be a good morning for us to be together with you and I'm thankful for your love. It's literally overwhelming and sometimes hard to take in.  Why would she be so nice? They donated that? I haven't seen her in years! You are amazing.

Like this mrs who runs Shinehappylife...she's a friend of my sister in law. It's not like we see each other every day, but she wants to help.  She makes bath and body stuff that has non-scary toxic ingredients.  She's doing a couple items just for Ruby and all sales will go toward Ruby. We've tried the bath bombs and they are so cool! My girls love them.  Another friend I only see a time or two a year since she lives in AZ stopped by today, brought us flowers. She had 3/4 of her little kids with her and is driving back home alone...but she took time to come see us.  You people!  Too kind.

This weekend Siri got to go sleepover at my mom's with her cousin Sam. She loves being there (perhaps most of all to not share with or have little sisters buggin'?). I left Friday evening with my sister in law, Sheri, for Logan. We stayed there with a few of her friends then got up early Saturday to do Little Red Riding Hood aka the best bike "race" ever. Its more of an event than a race. Loved it. Beautiful course, all through small towns, farms, and almost entirely on backroads so you're not riding with much, if any, traffic. By lunch we'd done 50 miles and felt great. By 75 miles it had gotten hotter and we were needing a rest. Mile 87ish Sheri got a flat, and although it took a while, it gave us a good break and we charged to the finish. I'd do it again...especially because I've had enough time to recover...I'm not sore, sunburned, or sitting on a donut :)

Mark was busy with Jane and Ruby going to his niece's baptism, Jane's last soccer game, and a court of honor for a couple young men. It was good to be home today as a family.