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.