Cheese

Let's start with this gem

Today. Today started out great, because its always a good day to have a good day...when you've all slept well the previous night :)

The good news is that Dr Holly is still working on getting Nivo through the 'compassionate use' line of things.  So, there is still hope we won't have to travel. The only downside is that Siri will be mad at me because she really wants to be in Cali for her fav cousin Kate's birthday mid April. I'll make it up to her somehow.

It was fun to have company on our visits today. Jane had an audiology appt and Ruby a follow up chest x ray from surgery. And I love the chance to go to Riverton Primarys. Nice to have Liz sit with each girl while the other took their turn.  Ruby did great in the xray, a few tears because who wouldn't feel so vulnerable with their shirt off, arms in the air, giant lasery light machine pointed at them?  Lungs are looking repaired from surgery, but still all spindle cell tumor filled. blah.

 Jane loved her appointment and I was super impressed by her doctor. I didn't catch her name, but she connected so well with Jane and has a way with kids. I've been worried about Jane's hearing. She asks 'what?' aaaaaalot. Enough that its buggin, but I don't want to be bugged if its because she really can't hear me. She passed the test, which is great. Has a little negative pressure in one ear, but likely from a cold (aka kids during winter time). There could be other issues, but I'm not going to pursue anything unless I see other signs of concern.

Cleaned house and did some info finding for our taxes. One day Mark and I will be more studious in our organization skills. Besides needing to get them done, we need the info from taxes turned in for health insurance by April 5th.  Which means I need to turn it in asap because bless our country for being free and relatively safe, but the Health Insurance Marketplace isn't exactly dependable or timely.

Millie's Princess Foundation got a photographer, Jen Fauset, to come do our family photos today. Mark took a few extra too (which are the ones here on the blog today).  I'm very much one to not put effort into matching or having up to date clothes, but it was worth it for the pictures.  Thankful for my people and our home.

Easter Sunday

So many highlights today, financial donations from close ones and strangers, a friend who dropped off Indian take out for me for lunch, a walk around the block with the girls and seeing an old friend. You people are the best. We could NOT be doing this, with this much hope and peace, without you (no pressure or anything ;)

"I stayed in my bed a lot"

I told Ruby I'd pay her a dollar if she'd stay in bed last night. She's been up at least once a night, sometimes 5, ever since the day after we got home from her biopsy.  She earned her dollar, but the bummer was that I didn't sleep well. Hoping for a better night tonight :)

Went to the Living Planet Aquarium with  the girls and Emily friend who got us tickets. Has anyone else felt like they were going into a trance while in there? Its all warm and dark and lots of slow walking.  The shark tank was very cool though.

2 surprises today. Dr Holly said that they could get Ipilumomab through our insurance. Yay, but not yay because that really isn't what we want her to have. After talking with Holly, then Dr Mackall we knew that wasn't the best choice as it doesn't have the best track record and has worse side effects than Nivo.  So, we continue with our decision to go to Cali. 

Surprise 2 I had no idea that Ruby's care in California had not been preauthorized. Meaning, Select Health only covers the state of Utah...unless what is here can't provide what she needs. Then we get permission to go elsewhere, but still have her covered.

The afternoon, like 3 + hours of the afternoon, was spent on the phone/email trying to get the right people from Primarys, Stanford, and Select Health to get their acts together. Blah, it was just very draining.Its not all set, but I'm going to assume it will be fine.

You know you have a solid friend when she's the one that is 38 weeks pregnant and bringing you dinner. Thank you :)  My mom came and planted flower pots, the young women in our ward brought over a freezer meal, a friend shopped for me and got a few clothes so we could have cute family pictures tomorrow, er, at least our clothes will be cute. P.S. let's all just agree to have real pictures done once every 5 years, it will make life easier. Thank you. 

These are just a few of the acts of kindness that happened today. Life is good.

an inkling of possibility

Finally got to talk to a doctor and social worker from Stanford. Feeling better about things. Oh, and Siri scored 3 goals at her soccer game tonight. Hat trick!

We had thought about trying to get to Cali by April 7 or 8th, but the chances of them starting to treat her on a Saturday, because it will take time to do paperwork, labs, etc, is not likely. We might as well wait a few days, try to arrive Sunday the 10th to start the party on Monday the 11th.

Also, there is a skinny little slice of a chance that we can possibly get Nivolumab through our insurance company (Select Health) and be able to stay here. Likely, no, but possible! Thankfully Dr Holly will call me back at 9pm on a Tuesday after her yoga class to chat with me. She's great like that. She's going to work on that tomorrow, and if they come back and say no, we're going to make a big deal and see if they'll change their mind.

We have been blessed so much today. This scripture came to my mind (scriptures, like, the Bible, Old Testament, Malachi 3:10, if that rings a bell).

 10 Bring ye all the tithes into the storehouse, that there may be meat in mine house, and prove me now herewith, saith the Lord of hosts, if I will not open you the windows of heaven, and pour you out a blessing, that there shall not be room enough to receive it.

  This is happening to us. I'm not sorry to say that I believe in God and his hand in our lives!

You are the salt of the earth

You are the salt of the earth.
1. A most worthy person
2. A decent, dependable, unpretentious person

I don't know how to explain how good this world is. Beyond what I could ever have imagined. Speechless, humbled, astounded, grateful. Mark and I are blessed to be in the situation we are.

Today I have cried a few times and 3 of those 4 times have been because of overwhelming feelings of gratitude for you.  A childhood friend,  a homemade quilt, a friend to watch the girls this morning, an anonymous card, a neighbor to chat with whose daughter has been treated at LPCH. And that is the tip of the iceberg. I really still have this inkling of hope that none of the financial help will be necessary and we can just send it all back.

We still don't know who/what/when. I've left a few messages, as have the oncologist and social worker from Primarys for the peeps at Stanford.
But, I'm doing what I can here...laundry, organizing photos and paperwork, car to the repair shop, giving Ruby a bath and time to play.

Just can't say thank you enough. Thank you Thank you Thank you.

Getting real, making plans

Just talked to Dr.Holly Perlman for about an hour.
I kept hoping this all wouldn't happen, but its happening whether I like it or not.

Ruby's info was sent to Stanford today. We are being given a family photo session later this week, taking a little staycation the beginning of next week. Pet scan at Primarys next Wednesday the 6th. Likely leave for California Thursday the 7th.  We need this time to figure out who is going to go. Just Mark or I and Ruby? The whole fam? Where do we stay-Ronald McDonald? My sisters (if there are just 2 of us)?  2 weeks? A month?  longer? Like planning a vacation you don't want to go on and you know you won't feel well while you're there.

I appreciate Dr Holly's honesty. Her job is not easy.

First of all, remember, Ruby's situation is all unknown. They can't tell us what the overall survival rate is.  These -mab drugs are all on trial...this is an experiment, a hopeful experiment.  Here is the link if you want to try to translate. We are hoping she'll get Nivolumab. The reason for not doing all other standard options is that for her situation, its not likely to work-such as chemo.  The good news is that the side effects of these drugs may not be as bad.

Response is possible, a cure is less likely. Complete response rate is about 10% if I can read my notes correctly. Which means we need to be realistic. This is the part where I silently cried and Mark took over the phone call. I have known since day 1 this is likely. And I am so glad that we know ahead of time, instead of losing her suddenly. But it still sucks. And I really don't like using that word, but its appropriate here.  We need to be thinking about how we want to spend our days with Ruby, just in case. I'll also still be praying for a miracle because I believe in them and man, she is so adorable I don't want her to go yet. Getting angry is not an option. It's not worth it.

We have had suggestions to go to St.Jude because they kick in help financially. We have decided against this because we are more likely to be together as a family, and will have a better quality of life, by staying closer to home, and the ocean :)  No, I don't know how long she'll be on these drugs, how long we will be away from home, or apart. I don't know how much all this crap is going to cost, but I really don't have the space in my brain to go that far ahead. Life is in day/week increments right now. Sometimes hourly.

I'm sorry that I'm the debby downer with bad news. I'm sorry that we need so much help. I'm sorry dear Ruby that this is part of your life, but we are all beyond grateful that you are part of our lives.

K, I gotta go get some tissues or a roll of paper towels and compose myself before she's up from her nap, Jane is home from the neighbors and Siri gets home from school.

Moment by moment

We are keeping things spicy in our lives, not knowing what we are going to do 2 days or 2 weeks from now :)

Tweak in plans. Right now it feels like a huge blessing. I felt a blanket of comfort when I got an email yesterday from my brother in law, Dave, who sent me an email string basically saying that there is an immune therapy specialist who just started at Stanford (Lucile Packard Childrens Hospital) in Palo Alto, California.  

My sister Jenn, and her husband Dave and their 2 kids just moved there a little over a year ago for his job. He does genetics/pediatrics.  Its not too far from UCSF (San Francisco), but to know that my sisters family is only 20 minutes away...blanket of comfort. Previously Stanford wasn't on the list of places to go, but since this Dr.MacKall is new there, it hadn't been added to the list for places that are offering this trial of drugs (Ipilumumab, Nivolumab, Pembrolizumab) that may work for her...it is very much in the early phases. 

The type of therapy she'd do isn't chemo or radiation, but is called Immunnotherapy. I don't understand it completely, but here is a video if you want to get the gist.  

With the weekend, its been a lot of emailing back and forth with Dr.Holly Perlman and trying to figure out what is best, who to talk to...so much information, its overwhelming.  There isn't a timeline yet as all of Ruby's info still needs to be submitted and approved. Yes as of now we're planning on going to Stanford, but nothing is official or accepted. Like I said, moment to moment.

Mark and I just talked over the still possibility of going to St.Jude in Tennessee because they will help with travel and housing. We both agree its not worth splitting up our family, that far, for who knows how long. We'd rather figure it out financially to go to California. That way, if we need or want, the whole family could go, or there could be going back and forth more easily.

I also want provide as much honest information as I can to you family and friends. Although I haven't heard her doctor say yes, this is 110% stage 4 melanoma cancer, we are assuming it is and planning treatment in line with that.
We don't know how fast it could/will spread. Remember when she was born? We thought the mass on her neck would grow. Nope, it shrunk. Then ballooned in a short amount of time.  No one knows what prognosis to give her, because its unprecedented.  I see that as a good thing.  There is hope.  There are a whole list of possible side effects of these trial meds...rash, pain, stomach issues, and more.

There are things we can try to do on our own like regulating her nutrition. I also feel like if we don't try this therapy for her, I'll wonder what if...

If you do happen to have Ruby (or Siri or Jane) with you or want to bring a food something, can I ask that you help me in regulating her nutrition? It can only help. I really believe in the power of our food choices.  I am mainly referring to junk food, high sugar, empty calorie, processed items.  I believe in a good treat that is worth it and we love all that has been given. We appreciate your thoughtfulness and nothing goes to waste.  I am totally that person who shows love through food and it is hard for me to limit junk! But please, still come or stop by no matter what.

Going forward, for the best health for Ruby and my family I need to do my best to feed us the healthiest way I know how-fruit, veggies, grains, nuts...whole food kind of stuff (and stuff I can get a 3 year old to eat, lets be realistic its not all beet greens and flaxseed).

And now for some fun. Went to the gym and the annual Fetzer Easter Egg Hunt yesterday. Took Jane and Siri skiing with Liz, Sam, Grandma Carol, Matt, Benj, Emily and my friend Emily Moench...we met in college at the U and skiing at Snowbird.  It was the best! Jane was very worried earlier in the day about going on the lift for her first time, but was the opposite once we got there. She loved it! Proud mom moment :)  We came home and had dinner, watched some of Nacho, and Emily read the girls books.

#footiefortheboys  Go to @jerryoftheday on Instagram

 if you don't know what I'm talking about

my friend brought a box of fresh produce from her sisters farm in Cali. 

she said "I think this is like the Thackeray version of a treat".

 Maybe not my kids, but for me, yes, a treat indeed!

Ruby LOVES nursery! 

Just now she brought a primary CD of songs to me and asked to listen to it

Coloring books in their Easter baskets

Why not

Most often I've thought, why not us? Why someone else?  And lots of 'someone elses' are doing the same thing as us...the social media updates, the uniting in prayer, the giving, the figuring out what's next. I really never expected to be in this club. But why not us? I don't know that I could face what some of you are facing. So let's call it fair :)

Thank you for all you angels who have served and lifted us up today. None of us know how much time we have, so not just for Ruby, but for your own, let's smile.

Her doctor is so busy... trying to get things coordinated and figured out. Possible PET scan this Wednesday or next. Paperwork and more paperwork, right now sending her info to UCSF and potentially starting treatment in 2 weeks. Lots of things up in the air, but as we get solid plans, we'll let you know.

Thinking of taking a staycation somewhere close by in the next week or two.
Good Friday today, Easter on Sunday. A great weekend to have hope.

quesadilla pajama selfie at lunch

Lots of eggs, lots of candy, fun to see them have fun

She's the little stream, the rain upon the flowers

Give Said the Little Stream

Initial results

 I'm sorry, I don't even want to post this, because then maybe it will be real. And if I don't tell anyone, we can just keep acting like everything is fine. But it may not be, and I know you'd want to know. And really I do want you to know.

First, I really need you to help us. I need you to pray, and if you don't pray or don't believe in a higher power, ask yourself why not, because its totally awesome.  So, as you read this post, please keep a prayer in your heart and remember:

(This is a talk from Elder Eyring in the last General Conference. In case you have no idea who I'm talking about, what General Conference is, or what "the Spirit" is, I would hope you would ask me, or go to LDS.org)

While a member of the Quorum of the Twelve Apostles, George Q. Cannon urged that we make a constant quest for the Spirit to be with us. He promised, and I promise it as well, that if we pursue that course, we “will never lack for knowledge” of the truth, “never be in doubt or in darkness,” and our “faith will be strong, [our] joy … full.”2

And I don't want to be in darkness, I may be crying or sad or worried, but I want to do it in the light. I want to be able to understand and see what decisions we may need to make.
que this video :)

I don't know a lot, but I know the principles and teachings of The Church of Jesus Christ of Latter Day Saints makes my life good and happy and hopeful. And I can't say that I never doubt or feel dark. But I do know that light and good and joy and faith can only make things better. I'd say I am fairly, to most definitely clueless, as to what lies ahead for me and my family, but I'm sure that I want it to be as awesome as possible.  Why do I talk about all this churchy stuff? Because it is what guides my thoughts, actions and basically my life, which in turn determines my outlook with this whole life-is-crazy stuff.

Second, BE POSITIVE. Fake it til you make it if you have to. I am off and on :) Its hard enough as it is, and being a Debby Downer isn't going to help. This is especially important to us around our 3 radical daughters. They are kids, and I want them to enjoy being kids! I want them to understand what is going on, but until we have solid answers and solid plans, it doesn't need to be bawled over in front of them, at least not if I can help it...because sometimes I just can't. Please be positive, especially in front of them. With Mark and I, keep being the uplifting, supportive, amazing, generous, compassionate people you are and have been. Mourning with those who mourn is real and powerful and we have felt it and are thankful.

I emailed Dr Holly this morning "This waiting game has been fun, but do you think we'll hear anything soon?"
She emailed back this evening with the initial report from pathology...essentially what our conversation has been this past week: It looks like metastatic melanoma. You can google those ugly words yourself if you want. It is not confirmed 110%, but yes, that is what it looks like. Its hard to see it written, instead of just in private conversation.  The genetic testing has started and we will wait for that to add to the pathology report.
When I read it, it was about 4:50pm. Just before I was about to take Jane's friend home and go pick up Siri at her friends and go to the book fair at the school.  I felt sick, kind of hungry (because I think I was), but a little empty in my soul or something. I don't know how to explain it. I was glad to be going from book fair to soccer practice, etc. When I was at the book fair I forwarded the email to Mark so he could read it. We saw each other for about 2 minutes as I got home before he left to go to the temple with the young men (church stuff ). I'm glad I didn't have time to let the darkness overcome me.  And as I write this is helping. Huh, and to think as I started I didn't want to. I'm sure when I try to go to bed I'll be tested. At least I know ahead of time. Wait a second...that reminds me of why we are here on this earth. This is getting deep.

Dr. Holly is going to call me in the morning. And no, I don't know what is next. Maybe a PET scan? Probably laying out a plan of what drugs may work for Ruby and how to get them. The ones we have talked about are not available at Primary Childrens. Crazy right?! But there are at multiple other places, including UCSF (California) and St.Jude's Hospital (Tennessee). There is also "compassionate use", which if you meet certain criteria they will give the drug to your hospital. Maybe I should start a petition for that just in case :)  None of this talk is a solid plan, but we have to start figuring out what to do in case we need to move forward.   And for now, that means sleeping, because no one wants to do anything unless they've had a good sleep.  Oh, and watch Nacho Libre, if you like that kind of show. It's funny.

on a walk today with a friend and neighbor

holding my dears close

Not yet

Most common answer to questions asked me today "not yet". I'm glad that I'm not as anxious as some of you :)  Yes, I want to know, but the waiting isn't killing me...just making my mind have a hard time slowing at night.

Today I've felt good about life, my life, our life. Ruby may have cancer, she may have aggressive cancer, or she might have something else, something not so major.  And as I've lived the past few days, I've felt good about what I'm doing. We aren't planning trips to Disneyland or avoiding work that needs to be done. We are having family prayer, eating together, doing homework, going for a walk. I'm thankful to feel good about what we are doing.

On our walk we stopped at a neighbor who is renting and recently moved in, but I haven't taken time to meet. It was good for me, even though it was only a 10 minute conversation. If I don't get outside myself, its so easy to start to suffocate in my own bubble.

Not much sleep for me last night so I was a tad cranky with my family this morning. I knew I was going to go workout with my sis in law and I'm so glad I did. Her mom/bff recently passed away, and I knew that my bag of excuses wasn't anything to sit and pity about. So, the therapy session began as we tried to warm up doing some cardio, then some weighted exercises, all while taking breaks to cry and hug. It was a really good therapy session for me. It made the day bright. I love you B.

"I was brave mom" She said after giving her a bath and changing her band aid. She's been mentally super touchy about getting near her left side, but today she relaxed a bit.

Our back yard is part grass, part jungle. So thankful to the Young Men and leaders who helped trim our crazy bushes in the crisp evening!

Liz has picked up Jane from preschool the last two days, and today dyed Easter eggs with them while I cleaned up the kitchen. They had fun, I got things cleaned up like I wanted. Win Win. Thank you Liz!

Fixed that link to the talk I put in the last post, sorry for the error!

Let your faith defeat your fear

If you have time, or can make time, and take time...

This song

by Kenzie Nimmo

This talk

by Neal A. Maxwell

Ruby woke up last night about midnight in pain. Gave her some motrin and she slept the rest of the night. She's got a boogery cold and slammed her own hand in the car door today. A bit of a rough day, but we did enjoy the breezy weather and took a nice walk outside :) I got to go out to lunch with some friends, and we had a short and sweet family home evening.

Ruby Rally summary

If you're new to the Rally Ruby show, let me recap

Mark and Ali stop being awkward and fall in love in high school. Team Thack is formed when we married 2005. Live in Sandy. Have a baby girl 2008. Move to Draper. Have a baby girl 2010. Move to Holladay.

Remodel a house. Find out baby girl #3 has something growing on her neck at the 20 week ultrasound. Move to Sandy. Lots of MRI's, monitoring, baby girl is born March 2013 via c-section and is in the NICU for a month while they find out what the crazy big bumpy vascular mass is on the back of her neck. Atypical nodular melanocytic proliferation. Uhhh, ok, whatever that is, we just want to go home. They say it will grow, probably slowly.

 It shrinks, yay! Wait, its growing again, like, really fast. Surgery January 2015. Hmmm, testing on the mass looks a lot like melanoma. Let's take a vote from doctors across the country. Vote is that it is not melanoma. Whatever you want to call it, I don't care. I'm just glad all those scans show there is nothing else in her body. Clear scans again July 2015.

Supposed to go again January 2016, but gets bumped twice to March 15, 2016. MRI shows a white defined circle in her upper chest...we wait and do a CT. Yikes, those white spots, aka pulmonary nodules, are all over in her lungs. Crap. Biopsy March 17, 2016.

And now we're here :)

Dis is mah fi soooohng

Through the day, almost every day lately, Ruby will randomly sing the chorus of this song

https://www.youtube.com/watch?v=e8qDOGLCSFo

Seems fitting that she'd sing this, even though she doesn't know what is going on.  Love mah beans. Right now we are in waiting mode. And while we wait, innocence is bliss. Her oncologist thinks she may have metastasized melanoma...meaning stage 4 bad news bears cancer. But, she may not.  A miracle may happen. Or not. But for now, we wait for the pathology to be done on the biopsy and hope to hear news sometime this week. They are also doing genetic testing as that will help provide other answers too.

Yesterday was a great mellow day. Hanging out at home, visiting with neighbors, errands, library, the park. Grateful for dinner from a neighbor. Mark and I are still so tired, trying recoup sleep.  When we got home from the hospital, the driveway was lined with posters, cheering Ruby on. They are all in the shape of jelly beans, since Mark's nickname for Ruby is "Beans". Our neighbors all got together Friday, wrote cards, took pictures, and then they made it into a book. I was in tears! This neighborhood, they know how to rally and I can't tell you how grateful I am that we live where we do!

Tired me + warm library=dozing off. I told the girls and Mark we had to leave or I'd need to nap on the floor. We went to the park where I laid on a blanket while they played :)

Ruby's cheerful room. Put the changing pad away (yay for no diapers!)

watching promised Doc McStuffins show after we gave Ruby a bath and changed her incision bandage. I am glad that's over, it was very much not my favorite part of today.

Mark's parents have been out of town, so we were glad to see them today! They watched the girls while we went to the noon session of the Provo Temple dedication. I was happy to have my cousin Emily and her husband Jesse see us looking for a seat. Great to sit by them and be with people we love and miss seeing more often. While we were in the session there are a few things I thought of...I'm thankful that Ruby's roller coaster of health is our thing. And that ours isn't that of one of the speakers or anyone else's. His son got brain cancer and became severely disabled, he slowly recovered, but got brain cancer again 22 years later which took his life. I'm telling you, everyone has a thing, and that thing is really hard for them. Heavenly Father knows what we can handle, but we have the agency to choose how we handle it.  I also felt very calm about things. I didn't feel afraid or scared or worried. I want to take the girls to go walk around the temple, to be there. It's a place of hope and peace. Whatever you believe, its the importance and sanctity you, in your mind, put on that things. For us, one of the things is the temple. Anyone can see it as just a building, but it can be more if you want it to be. To have a place where it is so quiet, reverent, and helps you enlarge your perspective is important to me.

  While we were gone, the girls and Grandma and Grandpa went for a walk. Siri was holding Charlie dog's leash and as he darted to chase a bird, Siri was dragged behind! She fell over the wall that goes into a culvert, but was luckily ok! She'll have a good bruise on her hip tomorrow. We picked up Liz since DanSam were on a bike trip and headed to my Mom and Johns. Oh, and was today not just the perfect spring day?!  I wish I would have been outside more. Good to be with family and to eat yummy food :)

I've been able to eat and sleep better the last two days. I don't have knots in my stomach all the time. A friend shared a  part of a talk by an LDS sister with me a few days ago, and I went back and read it all yesterday. 

“As we keep our covenants, we can ask for angels to help us,” she said. “Literally. … I’m not talking praying for fantasy angels with wings to magically fairy-dust our problems away. I’m not talking about praying to angels. I’m talking about praying to your Heavenly Father, in the name of Jesus Christ, for those on the other side to be dispatched to assist you. Perhaps a loved one or two could be sent to help you with whatever you need.”

I have had that in my prayers. And I've always thought of Ruby being able to be comforted by those beyond this earthly life, My testimony and my outlook on life has been shaped by parents and grandparents who have believed in Jesus Christ and a life beyond this one. I realized that there are also living angels right here, today, in our lives. The neighbor that sacrificed her time and means, and more, to bless our family. Having neighbors who I feel I can ask to watch the girls. A sister that has always been my bff and we happen to live a mile from each other. Mark's Uncle's family that came over and gave us a framed painting from his Grandmother's house that they knew I loved. Friday night just after we got home, about 10pm I got a call from Dr.Witt, the girls' pediatrician. He had heard she was in the hospital and was so concerned. He had come to see her, but we had just left. It meant a lot to me that he would call me and ask all about her.

Spot It with Aunt Sheri!

Loving chocolate mint cupcakes at family dinner today!

And because you have to keep things light sometimes...

Below this sign was a play gun that makes fart sounds. 

Thank you Primary's for making kids (and parents) laugh!

Zonk

Right now we are on our way home. Ruby is asleep. Thankful for beds that are our own.

She's in some pain, but I really rallied to get her home because sleeping in your own bed is more healing than anything.

Trooper

Hi!  I just got done with spin at the gym (gotta keep some things routine ;) and a few phone calls. Mark slept over with Ruby last night. She had a few rough patches but is doing well and on less medication for the pain which is great.  She's a trooper.

We are waiting for a chest x ray to see if the lung is healed enough to take the chest tube out. We won't know the pathology, the results, of the biopsy for a few days I'd be, maybe next week.

I am overwhelmed by love from you people. I've had less tears and more smiles. Siri and Jane are happy. P.S. whomever was the little leprechaun that left treasures and a note on the porch, they LOVED that!!  Siri couldn't stop talking "sea glass mom! sea glass! and a tiny mirror!"  It was a big hit.  I didn't go back to sleep after 4am. I got on my knees in prayer for a while. Did some deep breathing. My mind just couldn't quiet down. I heard Jane cough and went in to see her. While we were talking, she asked how Ruby was doing. She's so thoughtful.

The girls both came in about 7am as Mark and Ruby were on the phone. As Siri, Jane and I snuggled in my bed, Mark and Ruby on the phone, we all said a prayer together. It was fun to hear the girls go back and forth with Ruby. They are 3 peas in a pod. Today I dropped Siri off late for school. Some Fridays they can bring 50 cents to wear a hat. All the money goes to Primary Childrens Hospital. "You want to know why I want to wear a hat? Because that money goes to where Ruby is at!" She ended up donating the money and having me put her hat in the car :) Gems. These kids are perfect gems...sometimes hidden beneath boogers and whining, but they're there.

I was glad to get a text from a neighbor this morning reminding me it was my birthday. Its my birthday!  33 and happy to be alive.

I want ya'll to do something for me. Go do some pushups, or go for a walk, go enjoy the sunshine. Be nice to the checker at the grocery store, ask how their day is. Everyone has 'a thing', you never know.  And eat healthy food and when you eat a treat, do it on purpose and enjoy it!

Anxious to get back to Ruby at the hospital!

Ali

Press Forward

http://youtu.be/LR70olpSZnU

Woke up at 3am and didn't go back to sleep. Felt better once 7am rolled around. Mom mode-laundry, Siri to school (she's the best!), went for a walk, gave Jane and Ruby a bath. Sweet Jane was sneakily wrapping gifts for me (likely her own toys) to give me for my birthday tomorrow morning:) She is so thoughtful.

Felt calm. Dropped Jane at a friend/neighbor (thank you!) and checked in for surgery.

 Delayed a while and after being tortured with a terrible Barbie movie, a child life specialist brought in toys movies and drawing stuff. Ruby is talented at being a patient patient. I am amazed by her. She asked for a snack once or twice but was ok when I had to tell her no since she had to be fasting. Mark and I were fasting too. It helped my physical body to be calm, and to understand how she was feeling.

Loved seeing a friend who dropped off lunch and a beautiful butterfly balloon. After Ruby went back, Mark and I said a prayer and had lunch in the Ronald McDonald room. It really is a peaceful comforting room (too bad it doesn't have a better name;) Sat outside in the sunshine for a bit. Listened to that song I posted above. 

We just talked to the surgeon, all went as planned. Just waiting for Ruby to wake up so we can see her and go to a room. We hope to be home later tomorrow or Saturday:) 

you cry a lot

After we had two neighbors and friends come over to give me, Ruby, and Mark a blessing, Ruby says "When you sit in a chair, you cry a lot" :)  She says it how it is! But, while I was sitting in that chair, with men who hold the priesthood, which we believe the authority from God, I felt a calm and peace that I haven't felt in a while. Like the peace you get after doing yoga, only more coherent and not in stretchy pants. But really, I am hanging on to those moments and remembering the big picture. I was glad to have my mom here this evening during that time. She's a rock I tell you, I love her.

You all have poured out your love to us, we are swimming in it! Thank you! Siri and Jane are all taken care of tomorrow.

The biopsy will be at 1pm, we need to arrive at 11:30am. Hoping Ruby doesn't get too cranky only having water and apple juice in the morning. Before bed I made her a coconut milk, banana, peanut butter chocolate smoothie. She'll be just fine :)

The biopsy is fairly invasive and will be done by a surgeon. They have to go into the lung, so it will take a few days to recover.  I'm wondering how we will get a 3 year old to not pull out a straw that's sticking out of her chest. Hmmm.

Off to bed. Thanks to all of you who have/are/will help/helping/helped/helpered us.  Thank you for fasting and praying for her and us. I believe in God, I believe He is our Heavenly Father. I believe we have agency. I believe angels can be rallied in our behalf. I believe in miracles. I believe Ruby is ours, she's in our family, and that will never change. I know everyone has a 'thing', and this is our thing right now. Thank you for sharing it with us so that we are lifted.

Ali

Give said the little stream

Ruby's favorite song is Give Said the Little Stream. Nap, bed, anytime, she loves it. That, and Happy Birthday :)



Yesterday we went for a scheduled checkup for Ruby. She had an MRI and chest x ray, then we met with her oncologist (even though she's technically never had cancer), Dr.Holly Perlman. She woke up twice during the MRI, had to have more drugs, and peed her pants. Woops! Ruby did amazing, not even a tear when they put in the IV. She was a little grumpy when she woke from sedation. She didn't mind the chest xray and was happy all day (despite not having her regular nap). Holly did see a white spot on the top of Ruby's chest that looked suspicious. It was white, where it should be black, and very defined. She called to have a CT scheduled, so we waited a couple hours as opposed to having to come back another day.





I didn't think too much of it. I thought it could be something, but she has had pink eye, an ear infection, and a cold, so maybe something related to that. And maybe a growth, but not serious.  When we went back to see her, she walked in the room finally around 4:30pm...with a social worker. I knew that was a bad sign. She said there were multiple spots. They're all over. She didn't say cancer, but its more what wasn't said. I asked to see the CT scan. They are all sizes, but there were too many to count as we rolled through the images.



I felt so weird. Like my head was tingling, or freezing, but without the cold. It took a few minutes to understand how serious she was. When she got teary eyed, I knew. I knew this is something bigger than we understand right now.  All the while, Ruby was playing with little tea cups, plates, cupcakes, chocolates, spoons. She is A DORABLE!

I didn't have many questions right then, I mostly wanted to get home before traffic got too bad :)  I understood the urgency since Holly said she wanted to get a biopsy done soon, like in the next day or two. Barf. I just really don't like that. There is talk of traveling to St.Jude Hospital where there is a doctor who specializes more in pediatric melanoma, if that's what this is. But maybe its not! So let's just wait. And besides, there is no other choice :)

A friend brought dinner over, even though I had refused the day before. I thought all would be well and I'd be home by noon. I'm so glad she insisted.

Right now. Siri is at school, Jane is at preschool. Ruby is sleeping like a gem in her little big girl bed. I'm sweaty from the gym and need to shower, which is very typical for me on a weekday after lunch :)  We are waiting to hear from the hospital on when the biopsy will be. Maybe tomorrow, and Ruby will have to stay a few days if they're going to have to get into the lung.

I was so tired last night that I feel asleep pretty quick. But before I got in bed, I went and sat by Ruby's bed, just laying with her for a while. Staring at her little fingers, thumb halfway in her mouth. Feeling her ribs and she breathed in and out. Ruby woke me up about 2:30am, which I was excited about. She has always cried out when needs to pee at night, but she followed our instruction this time and came and got me. I put some socks on her as she seemed cold. Turned up her space heater. She asked me to sing Give Said the Little Stream.  I went back to bed and had a racing heart, knots in my stomach. I slept off and on, but felt better in the morning.

I went to visit teach one of my sisters in the ward. I broke down when I tried to share a spiritual message, and her hug made me feel secure. I took the girls to the gym so I could workout for a little bit. I called a few more family members to tell them and ask for their prayers. I came home to a bucket of goodies and yellow flowers. I keep glancing at them to brighten my thoughts. Thank you, whoever you are.

And now I blog so that I can let more people know. With her birth March 2013 and her surgery January 2015, I felt more at peace, less burden. I am hoping that can happen again. That as we share what is going on with her, that she, and I, and all of us involved can feel lifted.

I feel unsure, sad, worried. I don't want the adversary, aka Satan, to get me down. I believe he is real, I believe that it takes effort and fight and faith to stay positive.  I want to feel sunshine in my soul and in my smile.

There are too many unknowns right now, and I know it will get better and we find out more. Be positive. Whatever the outcome, we can choose to be positive.
Just wait with us and see.