the week before scans

The baby is crying, this may be short, but I keep delaying updating the blog until I have more time...yeah, that hasn't happened. The last month has been one of sleep deprivation. Annie is up 1-3x in the night and not napping well. She's back on reflux medication. She seems happy...just not for more than 20 min at a time in her crib :)
Lack of sleep has really taken its toll on me. I've kind of slipped into survival mode. It has really made me see how important sleep is and how much better I am when I am sleeping well!

School is out and although its cool and rainy today, I like the break from the heat. We've already been swimming lots and I'm proud to report I've gotten my hair wet all but 1 of those times :)  Sometimes, oftentimes, as a mom its easier to sit and observe than get in there and be with them. Totally worth the gross hair.

Spent some time on the phone yesterday getting things in order for next week. Another hold-your-breath time coming up.
Tuesday Ruby has an MRI. She'll have to be sedated. This will be to check her head and neck. At the same time/place we're going to have another swallow study (done with x ray) for Annie. Trying to be efficient here people...and have to take less trips/babysitters/etc. Wednesday Ruby will have a PET-CT scan, appt with Dr Holly, and possibly another infusion of Opdivo (Nivolumab). One of my most very least favorite things is having Ruby sedated. Its scary to see your child lifeless. Ruby also tends to wake up and have to be given additional meds...which then takes her forever to wake up and/or she is ultra grumpy and mean.

Thankful that we are here though. When I think about last year...we had just heard Annie's heart beat for the first time, found out the Opdivo didn't work (or maybe it did), and had Ruby's Rally. I felt like cancer was a death sentence for our angel, the 3rd musketeer, our Ruby tube squeeze. I had no idea if she would live to meet her baby sister. Sigh. She did. And we are here and together.

I have been better at embracing that this cancer theme in our life may be here indefinitely. I've met a few other moms of melanoma kids. We are planning to go to the Melanoma Research Foundation pediatric summit in Colorado in September. So far I think 17 or so kids(and their families) nationwide are registered to go. In November I'm hoping to take Ruby to St.Jude for a 2 day melanoma clinic to have them look over her case. More just to get another evaluation, maybe learn something new, and provide any information that may be helpful to future patients like Ruby.

Everything seems to have been pretty good within our family the past year. Lately though I wondering if maybe the craziness of our life is manifesting itself here and there. Lack of communication, more crying, less peace. I haven't written lately in part because I don't want to spill my guts here. It should be to my journal, Mark, our family. I don't want a pity party. I do want to be real. You get the gist.

So for now I will focus on the things that keep me grounded and do my best to keep on keepin on.

this was ultimate survival mode photo...Mark was out of town one weekend (over our anniversary-we've made it 12 years hooray!) and Annie was up lots and lots in the night.

6 months old

she looooved having aunt b come visit

dinner w my neighborhood girlfriends was more than awesome.

amazing food and I nearly peed my pants from laughing.

wonderful party for this womans daughter, now 18 years old, 

who has been fighting to stay alive her whole life

Dr Holly and her son were there!

Sunday morning before church

road trippin it to St.George

petting a wild tortoise

my best efforts at getting us all in a pic at the park.

it was hot.

gathered at the Baking Hive to meet a new friend.

This momma is inspiring. Her daughter has had cancer her whole life, relapsed 4x.

Jane o, love her much.

best.teacher.ever.

soccer party fun. 

love that Jane loves soccer and has been able to

 play with the same girls the last few seasons

solids

I'm just going to write, no particular order of anything so just keep that in mind :)

Starting solids with a baby, like Annie, who doesn't ever seem that hungry and you're just trying to get her to gain weight is a pain. Not only does she despise the rice cereal we've given her a few times, she spits it out and then gags up some of the breastmilk she just ate from a bottle. I'm thankful for her, for her health, for her spirit, but it doesn't mean that feeding her solids has any joy in it yet.  We'll get there. I pump 4x/day, which is enough to give her 5 bottles/day that we mix with thickener. We've been doing a little less in hopes that she is maybe growing out of her swallowing issues. I need to make another appt to check up on her and maybe see an ENT in addition to, or instead of, the speech pathologist. We've also stopped giving her her reflux med since it ran out. She does spit up more, but not enough that I want to put her back on it. I really want to find the root of the problem, not keep putting on band aids.

And yesterday...through our friend Alexis on Facebook I found another toddler fighting melanoma! Her name is Nora.  This is a big deal for me as I have never had someone I can totally relate to as far as "We've never seen this before" and "We'll give this trial drug a try" type of thing. I haven't talked to the mom yet, but I'm very interested to see how they're treating her melanoma.  We continue to go to the hospital every other week for Ruby to get an infusion of Nivolumab. The next scan will be a CT and MRI toward the end of June.

I see Ruby jump off the board at swim lessons. She plugs her nose, puts the other hand in the air, goes for it, and takes her hand off her nose before she hits the water (so why she plugs it in the first place I'm not sure but its cute that she thinks its helping). She floats on her back and swims to the side of the pool. She sees her friend at ballet class, who is also named Ruby, and they share fruits snacks and tap their toes unrhythmically to the music.
Jane is in Kindergarten and needs to run one lap for the Jog a Thon school fundraiser. She has spent the last month running laps at recess in preparation. The day of the race she finishes 2 laps and asks if we can run a 3rd. You bet sister!
Siri comes home from school and tells me all the details about all the things. I love this about her. I love that she gives more than a "it was good" answer. She reads through the 3 books she borrowed from a neighbor and asks for more.
And Annie...oh Annie. She unknowingly makes us all happier. Mark can get her to giggle and laugh as he gets her ready for bed. He rubs his head on her tummy and she grabs at his hair. Her big blue eyes and open gummy smile are infectious. Sisters continue to pass her around and wait their turn to hold her. She's getting big enough that Ruby has to sit down when she's holding her.  Annie's birth has been a bigger blessing for our family than I ever knew it would be. Last year at this time (May 2016), we didn't think Ruby had much promise as far as getting her tumors to stop growing. I was pregnant but no one knew and I was nauseated what felt like 24/7. We didn't know what the future held. I prayed I could just have a few moments of time with all my 4 girls together. Annie was born November 2016 and our attention has been able to shift from living scan to scan with Ruby and cancer being a main topic of conversation to.... Annie, this new beautiful life in our family that has made us a family of 6 now.

Life has been good lately. Sometimes I wish we could go to Hawaii, or take a week and go camp somewhere warm but it sounds better than it really is. With a baby, pumping, kids in school and activities, work, church, and warmer weather, life is good where we're at.  A big change I've noticed is in my attitude. I've been praying be able to better support and uplift the girls. To understand what I can/could/should do for them. I don't feel like I've had any huge inspirations, but my patience is longer lasting, I find joy in just being with the girls. Laughing at home during dinner. Bike rides to the park all together. Have the girls gather around as we read "Where the Mountain Meets the Moon".

We do have a few trips planned that we're looking forward to as well as only 12 more days left of school! We don't really sleep in much, but we love jammie-pancake-play outside in barefeet kind of mornings.

A wonderful side note is that after 5 months the water damage and repair is finally done on our townhome that we rent out. So thankful for patient tenants who are helpful and that I don't have to deal with all the phone calls anymore!

Our latest faves are watching episodes of the Great British Baking Show, bike rides, soccer games, Cesar Salad from Costco, PhoCali (or any meal eaten where Mark and I are alone and don't have to cook/clean up), multi grain pancakes that Mark makes yuuuummmm, playing "huts", painting rocks outside, singing/listening to Moana. Less favorite but very common activities include trying to keep 1500 sq ft with 6 people relatively clean, keeping the weeds down, staining the fence, and trying to not eat all the junk food.

It is good that each of our own personal lives and situations can be improved with how we view them mentally.

movie night with the Mascot Miracle Foundation

they're cute

mothers day gift from Ruby

Mother's Day

Mark loooooves all the fresh jalapeno in pho

Sweaty sisters at the school Jog a Thon

Jane's teacher, Mrs. Bailey, is an answer to my prayers.

She has been an amazing teacher and friend to Jane.

love these ladies! 3/6 are having babies soon!

getting to have school lunch together

hospital day blahhh

but meeting Liz for lunch cheers us all up!

Siri with cousin Sam's gecko "Fred"

Trail running with my friend Emily.

I'm thankful we've stayed friends since college.

fun friday night walking around downtown

Mark usually goes to the gym Tu/Fri mornings super early.

I love those mornings because he often comes home and makes yummy breakfast :)

Project Get Ruby To Ride A Bike. 

It was a success and the best FHE ever!

I totally started crying when she pedaled off

Jane loves soccer!

Alexis came to a swim lesson