#4 news

My stomach and guts can finally relax. Sigh.  Heartbeat is great. Spine and brain are normal. So happy. So thankful for this baby!  I need to have another ultrasound to check the position of the placenta as its is near my previous c section scar and cervix, but no immediate concerns right now.

We are going to tell the girls the gender of the baby tonight, and then we'll share with others :)

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.