Scanxiety x2 and teeth

I wanted to share a slice of what I've been feeling: very anxious. Last night I didn't sleep well, and the few nights before that.

I have an ultrasound tomorrow (19 weeks) and instead of being so excited to find out the sex of the baby, I'm very anxious and worried about seeing a heartbeat. The more kids you have, the more you know what problems they could have. And this momentous ultrasound is when we found out about the growth on Ruby's neck when I was pregnant with her. Seeing a heartbeat, and a healthy baby, would seem a miracle to me tomorrow.

I shared my worries with a friend and she said that its understandable as I've kind of been building up a wall around my heart the last few months. It's true. I anticipate the worst, and am trying not to be completely shattered by it.  At the same time, I've felt more hope about Ruby's health the last few days. Since that ultrasound when we found out there were issues, we've always been told what the worst is, and most often it never has happened.  Although there doesn't seem to be a cure that can be given by Ruby's doctors, I still have hope that there is more we don't know or understand yet.

Ruby has a CT scheduled for this Friday morning, August 5th.  We haven't decided on a next step of treatment yet as we want to see what her lungs look like. I expect the cancer to have spread, but you never know, I don't know. I need some proof. She's as silly and healthy looking as ever. I love her rosy cheeks, blue blue eyes, and her lips. Her mouth has its own character, its Ruby's. 

speaking of character...Siri's teeth. wow.

And this sis...lost her first tooth today! 

She came with me to visit an older sister in our ward, 

it fell out as she was eating her animal crackers.

#phonestealer

Today we enjoyed first ripe tomatoes from our garden this summer

And other fun things from July...

You can read Liz's post about going to the cabin

Fav party at my Aunt Joans for the 24th of July

A visit from Jenn!

Swimming with cousins, including Miss Leah.

Liz works out so she can throw kids into pools

Yesterday: Jane and Siri setting up their own yard sale.

It rained shortly after they got all set up so they'll be back at it sometime this week I'm sure. 

These two have done a boat load of fighting lately.

I'm thankful when there are breaks and they do things like this.

Siri says this is a jelly bean

This guy. Whew! Good thing we have each other.

I don't like him....I LOOOOOVE him!

(that's a joke in our fam...the girls will say "I don't like this (activity, food, whatever) at all. I LOOOOOVE it"

P.S. I just made these yumos Mark made rosemary butter to go with. 

Jenn you would have loved them!

What now

What is the next step for Ruby's treatment?  I don't know.

I went in with Ruby, just to talk, to Dr Holly last week.  They took her vitals as usual, but I assured Ruby this would be just a talking visit.

We have a couple options. None of which are cures, all of which are guesses as to if they may stabilize the tumors in her lungs, and unsure of the side effects.

I don't know yet if will try one, some, or none. I plan to try one of them.
I don't know how Ruby will feel on them, that may indicate how long or short she can try them.

-Everolimus-oral drug, not typically used in melanoma, but a genetic mutation she has indicates it may work. (denied twice by insurance, may be able to get directly from the drug company)
-Pembrolizumab-like the Nivolumab she tried, not likely to work since Nivo didn't, but possible
-Ipilimumab-not proven, maybe bad side effects, but possible

For the most part her doctor has been able to tell us what to do. Now its up to us to decide.  I've spent the last few days asking opinions to a few people who have more expertise than I.
We definitely want to do another CT of her lungs to see how the disease is looking, trying to schedule that for next week. I'd like to meet with the Rainbow Kids team that does palliative and hospice care when, or in case, we get to that point in the future.

We are not and will never give up on trying to get her well. 

We will always do what we think is best for her. 

car kindess

We were given a 2009 Hyundai Sonanta, click here for the story.

The first five years Mark and I were married, we lived across the driveway from his brother in their guest house. Fond memories :) While we were in that neighborhood and ward we got to know the Robinson family. They are now the force behind TRF, the Tyler Robinson Foundation. I don't know how often they do this, but they team up with Bear River Insurance and other companies to help refurbish and give away a car.  They had heard about Ruby and had our family's name in their minds. We had to sign a paper a little bit before we got the car, so we knew ahead of time, but I had told my sister in law to tell them its ok, we didn't need a car. We had just had the Rally for Ruby, which was a smashing success. Thank you again Cynthia, friends, and Millies Princess Foundation! I was ready to have attention focused on someone else.

This may sound selfish, but sometimes I just want to be out of the spotlight. Yes, I so appreciate all that is given to us, but sometimes I want to turn away from it all and act like we are just normal, everything is fine. Ruby is still happy and appearing healthy despite her sneaky melanoma in her lungs. It can be easy to shake off reality sometimes.  I am SO very thankful she, we, have not had to go through the typical chemo and radiation type of cancer treatment. We have enjoyed a normal life and a healthy Ruby.

Wednesday afternoon July 20. I thought there may be a few people there, didn't know anything beyond that there was a car and I assumed someone from the Robinson fam and Bear River would be there (there being our house). About 2 hours before we learned we needed to be at Martins Collision Repair in Orem. I dropped S & J off at a neighbors to play, I didn't think it was necessary they be there, and they wanted to play with their friends instead of drive.

Bridget pick up Mark Ruby and I, we got to Martin's and I could tell this was bigger than I expected. We met Thiago and Sergio Martins, Don and Don from Bear River. Brent and Shannon Robinson were there, so happy to see their faces.  We walk into the room...a big (clean) garage and the walls are lined with people, a shiny car with a big red bow on it in the center, a table with gifts for all the girls, a camera man, Elsa and Anna. I was so embarrassed!  All these people looking at us, all these people there, for us. I wanted to nicely tell them "we're all good, thanks though!" and climb into a hole. That's not the first time I've felt that way. I have to stick it out, get past it, let people love you, which is often harder said than done. I had a chance to say something and let them know how much their efforts and time and love mean to us, that is what the car represents to us. I cried, as I usually do when I talk about anything related to Ruby's cancer and people's kindness. Then as opposed to wanting to climb in a hole, I wanted to hug every person there. 

Ruby didn't really care about the car, but did love playing with Thiago, Aunt B and her new toys. There was lunch for everyone and time to chat. I talked to a girl from the Deseret News who did a quick interview with a voice recorder. I quickly told her Ruby's whole story from birth. I definitely know I told her that we did NOT have to travel to California for the immunotherapy Ruby tried, and how thankful I was to be able to stay at home. So when I read the article about us, and saw it was incorrect, I was bothered. I don't want people to feel bad for us, or think we got a car because we were going back and forth from California.

Its a great car, just like new. Really clean and shiny :)  Only about 70K miles on it and they did an amazing job at refurbishing it after it had been declared totaled. You would never know!  Mark loves driving it and its nice to have a more dependable car. And he's already got a Baltimore Orioles license plate frame on it :)  Thank you to all you who were involved. Thank you for your love. I would never want anyone, in any situation, to have cancer growing within them. But I have to say, this situation in our lives, that has become our life right now, has shown us more goodness and more love from more people than I thought was possible. I NEVER would have been able to know without this challenge and getting to have Ruby in our family.

Make a wish escape

Make a Wish blows my mind. How do they make all these kids wishes come true?!  Donations, volunteers, more donations, kind people. Still, it amazes me.

We were able to to to Florida for a week to do Disney World and more as part of Ruby's wish to "get a bike from Elsa".  We originally planned to go in Sept/Oct, but on June 7, when we found out the tumors in Ruby's lungs had grown, her doctor agreed we should go sooner as we don't know how she'll feel as the months go by.

There is a resort about 25 minutes from Disney called Give Kids the World.  Like Make a Wish, I'm amazed that it exists. 125/1000 people who work there are actual employees, the rest are volunteers. LOVED those volunteers. Teenage girls who drive 45 minutes to get there, older more seasoned women who have been coming for years.

Give Kids was full, so we stayed at Disney's Polynesian Resort. I didn't feel bad for us, it was really nice :) We were still able to have access to everything there was to do at Give Kids.  We left Friday July 8th in the morning. After mechanical problems on the first flight, and missing our connecting flight, we still got to Orlando later in the evening that day. There are so many details I'd love to share, but I'll type what I can, while I can :)

We got to be at Give Kids resort as much as we wanted, and everything is free. The food, carousel, ice cream, parties. They really do their best to give kids all they'd want.  We went to breakfast with Mickey, Pluto, Lilo and Stitch. Magic Kingdom, Epcot, Universal, Animal Kingdom, and Sea World. We pet dolphins, saw the oraca show, were in a few downpours and lightning storms, rode rides, walked a ton, sweat even more, didn't have to cook/clean/laundry/yardwork/dr appts. We got to be together and have fun.

We never waited in any line more than 10-15 minutes. I kept reminding the girls where the normal line was and about how long they'd be waiting. "Once in lifetime, Mom" Siri kept saying. She's right, it was a once in a lifetime trip for sure.  We met Anna, Elsa, Tiana and other princesses. Baymax, Joy and Sadness. We got to cool off and get a drink in the Siemens private lounge in the big Epcot ball. A free stroller rental at each park. We didn't worry about money, or time, or calling anyone back.

Considering I'm pregnant and we were pushing around 3 kids in the thick of the summer Florida heat, I was glad we only had one or two moments of frustration with each other. We checked out a video camera at Give Kids that we took back before we left and they made a DVD and CD of pics from when we were there. Ruby got to make a start to put up on the ceiling at Give Kids, along with thousands of other stars from all the kids that have been there. They did horse back rides, Jane and Ruby flew on a plane for their first time.

Because of bad weather and missing connecting flights, we didn't get home until about 1:30am the next Friday (or Thursday night). The only benefit of the hard time getting home was that it made me excited to be back, in my own bed, our house. Before we left Ruby said "I want to live at the Polynesian forever". But when we got home, we were glad to be back.  It's a trip we would likely never do or afford. Grateful to Make a Wish, Heidi and the other volunteers there, for making it happen. We loved it!

As I thought about the trip, some of our favorite times were just swimming at the hotel pool, or seeing the girls play "America Ninja Warrior" as they jumped across the hotel room beds. I'm grateful I have even more I can give the kids than ice cream and rides. I can read to them, love them, teach them about God. I loved being in the same room waking up with them and their morning faces, or just watching them snooze in the clean white sheets. Shushing them, but not caring too much, as they ran up and down the hotel hallway and elevator. It was the best escape!

Meeting Flik at Animal Kingdom

lobby at the Polynesian

Give Kids the world

loved the plane ride to Florida

view from our room

Breakfast at O'hana

Stitch!

Ice cream, anytime you want from 7:30am-9:30pm at Give Kids

meeting Rapunzel

Siri and Mark getting a wand at Universal

Mark grew up watching The Simpsons :)

lounging :)

Meeting Elsa at Epcot

By the end we learned that the hotel express cafe was ok, very expensive, and we'd rather get a bag salad, fruit from the store, and order Papa Johns to deliver to our hotel :)

Ruby and I got a front row seat for the parade 

(while Mark, S & J were riding Space Mountain a few times)

Swimming at the Polynesian and more ice cream at GKTW

Jane got to play the part of the Beast when we did story time with Belle. We ate at "Be Our Guest" which is the Beast's castle. Don't do breakfast, but lunch or dinner would be good. Ruby was so sad the Beast wasn't there when we had breakfast, but we got a special card to go back and meet him in the evening.

Meeting friends at Give Kids

Mickey gave me the biggest hug :)

Castle of Miracles. Where each Wish kid gets their star placed. Its cool and nice in there. 

The girls loved to color and play there.

Wait a second...

This story just gets better...

There are a lot of good gifts out there, but right now, we have one of the most best gifts of all.

Chances are if you haven't seen me or if we haven't electronically communicated lately, you wouldn't know...Baby Thack #4 will be joining our family in December!

If you have seen me, and didn't know, now you don't have to feel bad that you were thinking I was looking chubby. I'm 16 weeks, so still in the inbetween regular and maternity clothes kind of phase. Not my favorite clothes wise, but its great because I have been feeling less nauseated and tired, but still small enough belly to ride theme park rides and not feel like the heat of summer is evil.

I'm due December 27th, but will likely deliver the first week of December. I really hope my body can keep this baby in until 37 weeks. Why? Because its dangerous if I go into labor. With Ruby, they had do do both a horizontal, and vertical incision on my uterus. A regular c-section is a single horizontal incision, and if you have another baby after and go into labor, chances of your uterus rupturing are 1% or less. With a vertical incision, its 10%, so you really need to be careful and not go into labor.  And with Siri and Jane I went into labor a couple week early. Ruby was 36 week but still weighed over 6lbs, Jane 2 weeks early and 8lb. I cook them quick...or unknowingly have gestational diabetes.  And that's another thing. I really feel it will be a miracle if this baby is completely healthy with no complications. There are so many things that can go wrong. I still get a little scared each appointment that there won't be a heartbeat.

All my posts since the beginning of May (when I found out I was pregnant) could be revised as its changed our lives. But, I didn't want the interwebs to know yet, its way more fun telling people in person. I felt so sick all of May. Its crazy that I wouldn't tell people, but at the same time, there is nothing anyone could do to make me feel better. You just have to go through it. I admire women who are comfortable telling people right off the bat, and also admire those who can contain the excitement, sickness, and baby bump until later.

So now the story.
 I've never had a strong feeling if we'd have more kids or not, but I have thought of the future, when I'm old, and pictured having more than 3. After Ruby's clear scans last July, I felt better about considering having another human being. Prayed, pondered, went to the temple, fasted. Nothing. No feeling being swayed either way. More of a "you decide this yourself" kind of feeling. I felt good enough about it and we had been trying since August to get pregnant. Its never taken more than 2-3 months for us. After a few months I was confused, sad. Why isn't this happening? Then I started taking ovulation tests and really trying. Still not pregnant. I threw that stuff away and left it up to Heavenly Father. I felt an impression to just focus on what I have right now. A couple months later we found out Ruby had cancer. It was a stressful time. But how glad was to not have a newborn at that time. Mark and I didn't exactly feel like snuggling much :)   (Sorry if this is too much info for you, but its part of the story!!). A couple weeks later I found out I was pregnant.

I didn't feel elated or sad or anything, more just thinking really? really?  After a week I couldn't keep in my excitement, and I told Mark. Then I was really excited. I very much know it is God's timing. I feel like this baby is such a gift to our family at this time. It has helped me not feel paralyzed by cancer. It is helping me feel joy, a deeper and better understanding of the importance of families, relationships and my role as a mother on this earth. I am anticipating and as excited for this baby as I was our first. We waited to tell anyone until we had our first appt, I really wanted to see a heartbeat. It was the day after we found out Ruby's immunotherapy didn't work. Those were some very emotional days, both up and down.

We will find out next month if its a boy or girl. Sounds crazy, but I'd love to have another girl. But, it would be new and exciting to have a boy. The girls all originally said they wanted a brother, but now they're all leaning towards a girl since Siri is saying boys stink, are loud, and take their shirts off all the time. I told her she and her sisters aren't much different! :)

KSL clips

(July 3) https://www.ksl.com/?sid=40501888&nid=148&title=is-it-working-latest-scan-results-for-sandy-3-year-old-fighting-stage-4-melanoma

(May 16) http://www.ksl.com/?nid=148&sid=39795154

Road trip escape

My family (my 2 brothers, 2 sisters, their families, and my mom) have been planning a reunion trip to San Clemente, California since last year.  It was meant to be and such perfect timing. I'm thankful my brother Matt helped organize it so it could really happen!  The girls did great on the drive there and back. We got there on Saturday evening and went straight to the beach.  It took me a while to escape our regular lives. I had a meltdown Sunday and a cry session while Mark listened. It was good to get it out. I think that really helped me enjoy the rest of trip.  I loved not having anything else to do. I normally put Ruby down for a nap and 'get stuff done'. But there, I could just hang out with my sisters, or lay in bed with her. I loved laying in bed with her, the big fluffy white comforter and pillows. My kind of dreamy.

sibling fun grocery shopping

loved the condo we stayed at!

during church, Jane asked me how to spell all of this

Ellies Table bakery that was across the street. amaze.

We did the beach all the days except Wednesday when we went to California Adventure. Our kids are at the young end of the cousins, so we didn't last as long, but it was worth it.  Not until we got home, did I realize how little fighting there was between my girls or me and them.  I thought it would take more patience on the trip, but it takes more at home.

We had originally planned to come home today, Sunday, but Mark had a wedding to shoot at Snowbird yesterday. I'm glad we came home a tad early. To be home, unpacked, and enjoy our Sunday, the sabbath, was really nice. I needed it.

Our ward fasted for Ruby today.  I was thankful to fast also. I often feel hungry, but not today. Sometimes when I fast I'm praying, thoughtful. Today it was a pleading, begging in my heart. For a miracle, for understanding, mostly for peace. The bishop had let everyone know that we would close with a prayer at the church at 4:30. I expected a few people, but not the room full. Our dear ward, we love you so much. I wish I could talk to and thank each of you individually. It is time wise hard, but emotionally its hard for me to get the words out that I want to say.  When we came into the church this evening I instantly thought of when Mark and I got married. We walked into the room, and it was full of people we loved. But the loved I felt back was so intense. They were all there for us and because they love God. Today, I got the same feeling. It is overwhelming and enraptured my heart.

The notes and cards on our door, delivered in person, or in the mail were read with happiness when we got home from our trip. To be basic about our current knowledge: Ruby is dying of cancer. It sounds so sad. It is so sad. But the next second I think, but we are all on that path. We will all pass through this life onto the next. We are blessed to have a more immediate presence of that. And, I still have hope that she may be able to stay. And she's totally ok right now. It is mind boggling sometimes. She's playing at the beach, has all her hair, runs around. Its not a la-dee-da bucket list everyday. I get frustrated, there are dishes and spills and teeth to be brushed. But I sit with Siri longer to try to understand her feelings, I let Ruby push the cart across the parking lot to return it and watch with love and not annoyance. I say 'no' to more stuff and spend time doing what I would actually want to be doing with my family and friends.  And having my faith, the Gospel of Jesus Christ to have to guide me...it gives me just that, a guide. I sincerely wonder what/how people face death without it?  It gives me motivation to focus on improving myself, to focus on the habits and the relationships. Cancer aside, sometimes I think "What if my house burned down?" What would I have left? My family. And I want that to be enough for each of us. Easier said than done, but all we can do is keep trying every day!