Ruby's Rally

The Rally for Ruby is coming up! June 11...fingers crossed for good weather! 

I love this post from Millie's Princess Foundation and the amazing help they are giving for Ruby. They will mach 100% of donations up to $5,000!

http://www.milliesprincessfoundation.org/rally-for-ruby-fun-run-and-bike-parade/

If you're not into fun running or bike parading, come for the auction. There's going to be some amazing things! ...Summer kids classes at the Waterford School, Jim's Family Restaurant gift card,  family photography session, personal training and gym memberships, and ski passes just to name a couple of the many many items.
And I really would just love to see you and say hi, if you just stop by for a bit.
Thank you to Cynthia Stone Stringham, Meagan Graybill, Millie's Princess Foundation, and the loads of you who are helping make this all possible!

Media today

Spent some time watching short videos today...these are worth sharing, worth watching.

The mouths of babes-kids answering church related questions. I think our girls have this memorized :) This one is longer, good for random entertainment.

Refiners Fire-woman who had husband and kids pass away from cancer

Moms, lift up your chin and realize the good you do-this one almost always gets me teary eyed

Our potential-I love this one as relates to how full our lives can be. Do we realize is?

For me, as a member of the Church of Jesus Christ of Latter Day Saints, I know that I can receive blessing from God, but I have to do my part. The man in the video didn't realize how much better life could be. I know that certain area of my life I would like to be better, more peaceful, so I will think about how I can change, do things differently.

And photos for good measure...

The girls got to have an "enchanted" photo session by Kristen Noelle Photography...this is just an outtake from my phone. I'm excited to see the real ones!

Eleven

Tonight we went to Noah and Katie's reception (Mark's oldest nephew). A.MAZING.  Out of a magazine. Tents and perfectly decorated tables. A pond, hammock, live band, candles, catered food, fire pit, and so many friends to see and new people to meet.

The timing for me also added to the beauty of the night since tomorrow, May 26, marks our 11th anniversary.  It made me happy to talk to people there, especially a father who is a few years ahead of Mark and I, who has had life experiences with his family and kids that helped my perspective.

I haven't really been too sad or cried out of pity or sorrow for a while, but today I took some time to do that. I was just not wanting what was on my plate. I thought of the song "Did you think to pray?", specifically the line "so when life gets dark and dreary....don't forget to pray". So, I prayed. I didn't necessarily want to, but I trusted the advice of the song. Then I cried even harder. Sat for a few minutes, then got my butt off the couch and did laundry and cleaned the kitchen, sent some emails for Ruby's Rally coming up in a few weeks. I felt better. And I don't share this for any reason except to remember that as positive as I, or you, may think I am, I can throw a good pity party. And to remind myself that its ok to cry and take a break, then carry on.

So tomorrow is our anniversary, and although the extent of plans beyond the regular is that a friend has offered to watch the girls while we go to dinner (thank you!), I am very much looking forward to it. Love you Mark.

Cycle 2, Dose 2

Last night for FHE we wrote some thank you cards. THANK YOU all you people who have/are/will helping us. Thank you for donating money, and time, and babysitting, and food, and all of the things you have done for us. 

Had fresh orange juliesk type smoothies for breakfast. I usually put spinach and healthy stuff in mine, but sometimes you need something that isn't green or has any hippy food in it. They were delicious!

Went to Siri's First Grade program. I loved it. Singing patriotic songs, songs about what they're going to be when they grow up, wishing on a star. The lyrics of them got me all teary eyed. At the end there was a slideshow, and the 1st graders sat down on the same side as the audience to watch. Ruby went over and sat by Siri, then on her lap. Siri just rubbed her back and loved her. Jane sat down by them. Being a mom isn't like anything else. 

Left a tad early to get Jane with Aunt Liz and us up to the hospital. Ruby did awesome. Less fear and more excitement for a show and goldfish. She did great. A few tears when they took the tape off to deaccess her port, but not bad. We had lunch at the cafeteria downstairs before we came home. She's snoozing now and I have a few minutes before I go get Jane from school and Siri gets home. (Kinda excited for Summer!)

Ruby's CT scan is scheduled for Tuesday June 7th at 10am, followed by another dose and dr visit at 1pm.  As long as her tumors are getting too much bigger, she'll stay on this medication.  Dr Holly asked if I was nervous and I think I said no. Uh, not sure why because yes, I'm totally nervous. May is this bizarre month of enjoying and things are great, but wanting it to be over with already.  It will be good. We've handled this much so far, we can keep truckin. Heavenly Father won't give us more than we can handle. I trust that we can do this.

Got some medical records for insurance purposes. 

Still surprised me when I read this. No one would ever know by looking at her...

And this. I'm not sure what the conversation was between Jane and Mark, but this was the result.

a trip

Months ago I put on the calendar that we'd go camping this weekend at a National Park or somewhere similar in southern Utah. Only, I didn't actually do anything about it until last week. Some families do this stuff all the time, but we don't, so it was a bigger deal. I knew it would be chilly, and bagged the camping idea.  Last Monday and Tuesday I finally reserved places for us to stay Fri/Sat and went from there. My friend Emily works for the Utah Department of Tourism and has done all sorts of awesome stuff along scenic byway 12. Although we didn't do as much as I thought we would, we did as much as we wanted to and could :)

At Capitol Reef we had a picnic among the red rock and deer, ate fruit pies from the Gifford House, and hiked Hickman Bridge. We stayed at Circle Cliffs motel (which only has 3 rooms total but is totally funky and awesome) in Boulder. We played on the grass at Boulder Mountain Lodge and ate at Hell's Backbone grill-amazing food in the middle of nowhere. Loved it.  I've seen pictures often and have always wanted to go to Calf Creek Falls. Its 6 miles roundtrip and I knew it would be a lil slow with the girls. Mark carried Ruby in the backpack most of the way (she snoozed part of the time on the way back). The trail has number markers 1-14. Those kept Siri and Jane motivated, especially on the way back! Once at the waterfall it gets a lot cooler. I took my socks and shoes off for a bit but that water is coooold. It would be even more refreshing on a hot day.  The weather was amazing-usually cloudy, and mild. Pants or shorts were fine, jacket or no jacket. 

I'm not a scenic drive kind of gal. Ever since I can remember, I haven't loved driving just to drive. I get motion sickness fairly easily. So I am thankful I was fine this trip. The views were beautiful. Utah is so cool and weird. After Calf Creek we were all super tired. We detoured to Kodachrome state park but only managed to park and look at the views. The girls were too tired to hike so we headed onto Tropic where we stayed the night.

This morning we went to church (a young couple spoke and I loved their message and personal stories on love and charity). We hiked to the "mossy cave" and "tropic ditch" waterfall...its just off the road before you get to Bryce Canyon. It was beautiful! Short and sweet. We took the long way home via Richfield, Salina, Levan.  And then, when we got home, we stayed in the car a few minutes longer. Why? Because we had to finish Harry Potter book #2 we'd been listening to all along! Siri had just finished book one before we left and Mark is loving her love for it. It made the drive so different-being excited to get in the car and drive. Thankful the car ran as it should, we were healthy and no one got hurt. A successful trip!

Click here for pics by Mark

News

As we're finishing dinner, we have the TV on waiting for Ruby to come on channel 5 at 6:30pm tonight.  You can watch it here.  I was really impressed. I felt so scattered when she was asking me questions, but you'd never know:) I gave them lots of info and pictures. I thought Heather did an amazing job of piecing Ruby's journey together.

After it was over, Siri tells me she wants to spend the $6 she has on a blanket. I tell her she shouldn't, she has so many. She goes to her room crying. I go talk to her. "I don't want the blanket for me. I want to buy it for you! I saw how you looked when you were watching the TV" (I probably got a tear in my eye). I realize, she didn't know before, but knows know, that Ruby has cancer and it could take her life.

 I felt so sad for Siri being worried. She's only 7. The innocence was bliss. Sad that she knows now and is worried. "I don't want Ruby to die. She makes me laugh" Siri says through her tears. We talked about how we believe families can be together forever. That we will all eventually die. That we never know what will happen. I told her we have to make the best of things. I want her to laugh and play with Ruby everyday.  She cheered up. Everyone helped clean up the kitchen (rare that the girls all help). She brought me this card she wrote.

seriously, this girl. She can be dramatic with the best of them, 

but she is more tender and thoughtful than I could imagine.

 They got in jammies, watched a show, had a treat. Peaceful. We had a Family Home Evening lesson on Heavenly Father's plan for us. That we get to make choices every day.

I am getting really excited for this event for Ruby in June, especially the auction-there is going to be some amazing things to snag! Here are a few more helpful links...

Rally Ruby Facebook page

Fun Run and Bike Parade registration


Hike to Rocky Mouth Waterfall today
(reminder: they pick out their own clothes)

come party

Hi my friends and family and maybe a few strangers :)

Wasn't yesterday's warm and sunshine nice? Which also makes todays contrast of clouds and rain enjoyable too. My sister in law's birthday was yesterday so we went on a bike ride...something we'd love to do monthly, but it usually happens maybe once every other year! It was a perfect day to be outside on a ride together.


 Jane was the bees knees at her soccer game, scored a few goals, did her best, and had fun.  She may have been a little totally angry when her sisters were offered post game treats (each of them do that sometimes-I get that they want to be different and special), but she chilled out by time we got home.

A kind neighbor brought some plants over and Mark worked for most of the afternoon in the garden. I've mostly given up on the garden-between terrible soil, aka rocky sand, and bugs, I lost motivation. But, I fully support his efforts :)

Ruby had been up for waaaay too many hours in the night Friday night, and woke up Saturday with more congestion, mild eye goobers, and a fever. It was gone by evening, and didn't act sick, but I still didn't feel like I could take her out. She and Mark stayed home, Siri was at a friend's, and Jane and I went to a bday party at Liz's for her husband Dan who also had a birthday yesterday. Yummy food and fun to see their friends. Last night I told Ruby I'd give her a prize if she stayed in bed all night. Which she did! The catch is that I'm still waking up in the night this past week, and having a hard time getting back to sleep. May is longest month of my life! I'm enjoying it, and at the same time want her scan the 2nd week of June to just be here already. Earlier this week I felt like I got a cold, but maybe allergies. Stuffy head whatever it's been.

What I really want to post about is an event that our friend Cynthia, and many more, are working hard to put together.

Saturday June 11

 9-11am

Fun Run and Bike Parade

7500 S 2700 E. Cottonwood Heights, UT 84121

 There will be face painting and a silent auction. Yes, its a fundraiser for Ruby, but I really want people to just come and have fun with us. If you don't want to enter the events or buy tickets...I don't care. I hope you'll come anyway just to say hi and enjoy a morning together with us (and nice weather fingers crossed). Whether we are related, I see you often, or its been years, I hope you'll come if you're not on a fun summer vacation :) I'll post more details soon.

And tomorrow, Monday May 16 at 6:30pm, KSL channel 5 is doing a story on Ruby if you want to watch or see it online later.

Visiting Grandma Carol's new office

A visit to the Baking Hive-decorating cupcakes and watching a show?! Spoiled.

Siri's rosy red cheeks at her school jog a thon

Cycle 2, Dose 1

Today we started cycle 2 with dose 1 (which is her 3rd dose).

Last night she woke us up crying screaming at 12:48am. Oh man those kids get your heart racing faster than the stairmaster! I held her in my lap in the bathroom. I thought she was going to throw up. But she just writhed in pain for a few minutes. She calmed down and we laid her down in her bed. Bless Mark he ended up sleeping on her floor the rest of the night. This morning she woke up like no big deal, happy as can be.

After smoothies and toast we got Siri off to school and dropped Jane at Missy's (thank you!). It was nice to not have bad traffic or accidents on the way to Primarys. When Ruby had to take her shirt off to get her port accessed she got scared and started crying. It didn't last long. She winced and said it hurt when the needle when in, but maybe just the pressure was uncomfortable (we put numbing cream with press n seal plastic over her port an hour before her appt so she can't feel it). Dr Holly was gone so we had a quick visit with another dr. The pharmacy was still making up the Nivolumab, however the heck that is done, so that wait seemed a little long. She watched The Gruffalo and Cinderella, in addition to playing a few Toca Boca apps she loves. We got there about 8:50am and were out of there by about noon.

People ask how the day went and while I was there I got tired, was thankful, then mad, then sad, then bored...I really don't have much room to complain. It was a good morning. We get to be at home, go to the clinic, then come back home. No side effects so far, nothing out of the norm. Ruby is most certainly abnormal when it comes to cancer treatment and I'm so glad! Praying it will work for her.

In case you want to pencil it in, KSL (channel 5) is doing a little story on Ruby on Monday May 15th at 6:30pm. I have no idea how much detail, or not, they'll go in or how long it will be, but it will be fun to see her story on TV.

that lil bump under her skin is her port

Auntie Liz is the most fun Aunt

I just loved seeing Mark's brother (Uncle Steve) surrounded by his nieces on Sunday. He has 4 older boys so its different to see him in this type of situation :)

P.S. I have a membership at Vasa...by default because my old gym, Crossroads Fitness, went out of business. Crossroads has been taken over, redone, and is a new gym called Thryve. They doing a 3 month free pass so go get one and hopefully I can see you there sometimes!

I like to road bike. I don't do it as often the past few years, partially because of laziness, other exercise that's more convenient or efficient, and I'm afraid of getting hit by a car. But around December my ankle was still hurting off and on from a sprain and I was having more spasms in my lower back (both have gone away for now thankfully). So when my sister in law, Sheri, asked me if I wanted to enter the lottery for the Little Red bike race I said yes. I've never done a bike race, and thought this would be easy on my body and motivating. We got in and are entered to do 100 miles! Farthest I've gone at once is 75. I'm excited for the challenge and to spend time with her and other lady bikers. Crossing fingers for nice weather June 4th! I have been going to spin class but have only ridden outside twice so far this year. The weather just won't cooperate on Saturdays :)  I woke up Saturday morning and the road was dry so I went out for a ride from 7-9am. I didn't dress warm enough so I rode slower than normal and had to stop once in a while to get my toes and fingers warm, but I'm glad I went out.

While I was riding I listened to a few podcast episodes from Power of Moms. I heard about it through my friend, and Mark's cousin, Erin. They can be a little cheesy, but if you listen give them a chance. One of them talked about all those moms out there who are carrying personal burdens, theirs or someone else's, but put on a brave face. Some things you just don't put in instagram, or even tell anyone but your journal. We may feel alone, but remember that all those other people out there...they have a hard thing going on right now and probably feel the same way you do.

Happy Mothers Day

Easter 2016

Rubys birth day

Gifts the girls made at church today

I think knowing what other people are going through is partly what makes it hard to accept help. I'm sorry, I just feel dumb sometimes. Yesterday morning Liz, Ruby, and I went to part of Jane's soccer game (which she was a star at, love her), and went to the last part of a High Fitness workout my friend Abi and others did for Ruby. I didn't want to go in, I hesitated. Glad I finally got my butt in there. Just as we went in Ruby reminded me she put her shorts in my purse and wanted to change. I took her in the hall and she took off her sweats and into 'workout shorts'. I love that she wanted to be working out too. Wow. The combo of crying, sweating, and seeing Ruby doing the workout too...I'm glad the music was loud because I was bawling. It was her fav "Fight Song".  I look down and see her punching and following along. I cried because of the people who were there for her, and me, and my family. Because she's fighting and doesn't even know it. Because I'm sad it may take her. Because I'm overjoyed that she is totally normal and no side effects so far. Because I love her so much.  I know of some of the hard things that have happened to some of those women, and current things I don't know about. I'm grateful that Ruby could bring us together. Those who came please know that I love and appreciate you and know you are loved and you can get through your hard things right now.

Earlier this week Heather Simonsen from KSL came to our house to do an interview with Ruby and I. A friend of ours contacted KSL seeing if they'd want to share Ruby's story. We hesitated at first...I kind of felt like this isn't a big deal compared to a lot of peoples stories, or that I don't want to be on camera, what will people think of me? But after Mark and I talked about it, we hope that this can be uplifting and bright spot on the news. I have no idea how it will be presented....they filmed a lot of Ruby and I just playing which I loved. The few questions I answered I felt like I was so jumbled in my words-distracted by background noise and Ruby. I didn't say everything I wanted to say, but I'm hoping my part will be a snippet as they went to the hospital to interview Dr.Holly too.  It's not official yet, but pencil in June 11 on your calendars as we may be doing a fun event for Ruby. As we get more details or if the date changes I'll let you know. After the High Fitness get together yesterday it got me excited...my favorite is just being together and seeing people that we know and love. I love that Ruby's health issues have helped us to get to know people more easily and more deeply.

Again, I feel like we are being blessed beyond what we can hold. The love and help are overflowing!

Took Siri to the park for lunch one day, her friends were happy to see her when I dropped her off :)

Heading to Siri's soccer game

Snoozin!

Went on a lil jaunt in the woods off the quarry trail

Loving the rain, especially since our sprinklers are broken :) Looking forward to sun too this week which always makes the girls soccer more enjoyable. Ruby will get her 3rd dose (dose 1 of cycle 2) on Tuesday.