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One Year

I remember a few things about the morning we went to Riley. 1) I woke up and curled my hair. 2) I did not want to be a frequent member of the Simon family member parking garage. 3) I remember the way the fellow couldn’t look us in the eye before she left the room to get Dr. Plager. I thought curling my hair would wake me up, slap me out of the nightmare that was the past 12 hours with google at my fingertips. I even tried makeup, only to be cried off in the next few hours. The parking garage led to the waiting room, and I didn’t want any part of it. There were so many kids, playing. And I just kept praying that my kid wouldn’t be one of them. For sake of privacy, we will just call her the fellow. She was kind and she was gentle. She didn’t talk much, she kept doing all these funny things to get Sloane to look certain ways, she kept repeating them and she was doing it to both eyes and that’s when we knew. We didn’t need Dr. Plager to tell us what we already knew. But she brought him i
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Remission

“In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.” 1 Peter 1:6 I never knew how a person fought a battle such as a cancer diagnosis. I would look at them, I would take care of them, I would pray for them, but I never knew how they got from day to day. I never fully understood how life went on, how day to day tasks remained the same and still managed to get done. I never understood that the doctor appointments didn’t get easier, I never fully gripped the never ending emotional roller coaster they were on. I never really understood any of that, until this morning when I realized I am them. I am those people I’m praying for, I am the one still making to do lists and I am the one still holding my breath going in to every doctors appointment. I am the one protecting, understanding, crying, praying, and rejoicing, I don’t know how I got here, I didn’t know I was meant to make it to where I’m standing now. Sloane is in
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Perspective

It’s all very odd.  This life is so, so strange. It is so beautiful and so ugly all at the same time. It is so hard, and really so easy, all at once. It’s so very strange thinking about everything in one big picture. Do you ever do that?  Do you ever stop and catch yourself and think, like, does this really matter. Should that really make my blood boil? Do I have any “perspective”? What is going on here?  I mean, really, think about it, get some perspective and pause before reacting.  It’s seriously amazing how on November 20, 2017 I would have let a rude comment by a stranger set the tone for my whole day, maybe even my week!!! I’m not even kidding, cancer gave me perspective.  Sure, I still get worked up over things that don’t matter, sure, I still get my feelings hurt, I still over react.  But I can tell you my perspective is a lot more in check now compared to what is was.  I’m not trying to boast, trust me, I have very little to boast on.  But, there is a lot of beauty in a simpl
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Calm hearts, easy minds

For those keeping track, I’ve learned two, rather hard, life lessons in the past eight months. First being- I should not go on vacation, secondly- I should not plan parties. But then again, God is bigger than me and I’m sure those things were placed very strategically. Rewind to yesterday when I posted on social media and asked you all to pray for calm hearts for Austin and I. Now come back to today and please, still pray. There’s got to be some truth behind a ‘mothers instinct.’ Call it what you choose, but I’ll call it that because of the reason I could hardly eat yesterday, the way I tossed in my sheets all night long, restless, unable to put my mind to rest. The reason I felt I was going to vomit about 6 minutes prior to Dr. Plager walking in to the recovery room. There’s never good news coming your way when a doctor closes the door behind him, pulls up a chair, and takes a deep breath. “Her right eye is really good, nothing new.  Her left eye is bad, really bad.”  And then it
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Paved by Prayer

Proverbs 3:5-6 “Trust in the Lord with all your heart, and do not lean on your own understanding.  In all your ways acknowledge him, and he will make straight your paths.” I really like a routine.  I like a plan, I like an emergency exit in the back of my mind, I like knowing what is going on around me and I like planning for what is next.  I like a routine so much that for as long as I can remember I have washed my face, my hair, and my body in the exact same order, every single shower.  Now my goal here is not to label myself as having some obsessive tendencies, more of a goal to explain why I’m starting to have a hard time again. I’m not saying this time has been easy.  Austin and I have been through more trials in the past 6 months than we ever thought our marriage would withstand in 60 years.  If you would have asked me on November 21 what day I was looking most forward to, I’m pretty sure my immediate answer would have been “Sloane’s last day of chemo.”  I remember the feel
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More Christ

This has been a week, and I do not say that lightly.  I have seen with my eyes and heard with my ears things that are gut wrenching and heart breaking. Ann Voskamp’s daily blog came into my email today and I sat in a parking lot and let the tears fall for a couple reasons, one being it was real and honest and she always makes me cry, two being that she took the words from my mouth. She starts off describing the woman from Parkland with the ashen forehead that is making her way through all of social media.  I have seen that woman’s picture and it breaks my heart.  She then goes through the first few days of Lent and its happenings, including a friend diagnosed with cancer, a friends who’s baby passed away overnight, and a mass shooting at a high school in Parkland, Florida. Dear, God. “My shattered heart fuses with hers.  Where two or more are gathered in grief, never doubt that God was there first and He will be there long after the last have left. Lent isn’t only a season of subtrac
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Faith

Faith is such a crazy ‘thing’.  It shows itself in so many different ways. If you google “what is faith” you get a couple straightforward answers... 1) complete trust or confidence in someone or something and 2) strong belief in God or in the doctrines of a religion, based on spiritual apprehension rather than proof.  This is a pretty simple definition, but what I’ve felt lately is not simple. God is so big and this world is so cruel and so beautiful all at the same time and faith is so hard sometimes.  Does that make me weak? I come back to this question a lot.  I have such a hard time staying on the same page and it’s become very clear lately that faith gets harder the more it gets tested.  And to say I’ve been tested, is an understatement.  But then my faith kicks me right in the butt again and I feel found and at ease.  Faith is so crazy.  Another thing that has blown my mind lately is the power of prayer.  I cannot and will not ever stop speaking of the power of prayer.  Sloa
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Humbled by the Holidays

" The steadfast love of the Lord never ceases; His mercies never come to an end; They are new every morning; Great is your faithfulness. 'The Lord is my portion,'  says my soul, Therefore I will hope in him." Lamentations 3:22-24 What a humbling holidays we have had. It is truly mind blowing to stand here in my shoes and see all the generosity that has been thrown our way. For a lack of a better vocabulary, cancer really sucks. It is so easy for my mind to travel that direction and for tears to come because I do really hate cancer. I hate it for my daughter, and I hate it for everyone else who has to come in contact with it. I hate watching my family suffer because I know they are suffering right along with us. But as much as I hate all of this, I really love what I'm witnessing. A community that has totally come together in faith and prayer and love for us, for Sloane, and for all of our family. I do hope my family feels as lifted in prayer as Austin and I
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Amazing Grace

" T'was grace that taught my heart to fear, and grace, my fears relieved.   How precious did that grace appear, the hour I first believed." I think a cancer diagnosis makes you more sensitive, in every meaning of the word, all senses involved. What I mean is that I'm feeling everything more deeply, more down into my bones.  I really see the sunsets, I see the cloud patterns and I see through them.  Every day the sky is different, it's a beautiful sight to see.  I really hear way too well, I hear the words that aren't being spoken directly to me because people are afraid I'll crumble.  I hear you speaking to me and I am really listening, very closely.  My sense of smell is even heightened, either that or I'm just now paying attention.  I've been lighting more candles than my husband has ever seen me light, and I made sure all the smells keep me calm.  Human touch is a necessity.  I never knew how much I actually needed that big hug, and everyone
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Hope

Over the past three weeks I've heard a lot of the same words repeated to me, and some of them just make me laugh a little under my breath.  For example: when people say "it's so inspiring to see how well you're holding yourself together" or "I'm so impressed by how strong your faith is."  They don't make me chuckle because those kinds of things are funny, but more because of  how untrue I find those words to be.  Honestly, this is not what holding it together looks like, I wasn't given a choice, I didn't get to voice my opinion, and I would never choose this upon my worst enemy, this is not holding it together. Let's be real, everyone knows how much I love to voice my opinion, and I got no say. Secondly, my faith found me again on a Tuesday morning in a doctors office.  And at the same time I tried to process that this kind stranger was diagnosing my daughter with advanced cancer, I was also trying to process how Jesus was going to ac
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My cliché "mom group"

"Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable- if anything is excellent or praiseworthy- think about such things." Phillipians 4:8 Think back to my first blog entry to my belief that certain people have been very carefully placed into my life to get me through this new journey I've found myself in.  Cue my "mom group."  I've seen God work in many ways, many I've ignored and many I've found wonderful. This is wonderful. Over a year ago, I got a message from a 'girl' who's baby I helped deliver asking if I would be interested in coming to a 'brunch' with a few other moms who had all recently had babies.  Meh, sure? I don't really like meeting new people and I don't really need any new friends, and I definitely don't want to talk to a bunch of new moms.  Doesn't she know I've done this before? I have a 3 yea
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Grammy Loves Sloane

"And I tell you, ask and you will receive; seek and you will find; knock and the door will be opened to you.  For everyone who asks, receives; and the one who seeks, finds; and to the one who knocks, the door will be opened."  Luke 11 9-10 For those who do not know me, let me introduce myself.  I am Sloane's Grammy.  Being a Grammy is the best job in the world .... until one of these wee ones is sick.  To say that I have lived a lifetime in these past 11 days is an understatement.  It has been full of tears and laughter and sadness and joy.  I hang on to my faith.  I pray more and try to worry less.  I watch my daughter, Courtney, and my son-in-law, Austin, with careful eyes.  I want to be able to catch them if they falter.  I want to lift them up when they need it.  I want to laugh with them every chance we get. But the real reason I asked to write a blog post was to say THANK YOU .  Thank you to all of you for your love, your prayers, your emotional and financial su
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Round One

What I learned in those first few hours, first few days, is that my body would keep going.  It took me a while to realize I was still breathing, my lungs just knew how to inhale and knew exactly when my mind needed a very slow exhale.  The clock kept ticking and the world kept moving.  I relearned this same lesson last night when Sloane's chemotherapy started.  I held that baby girl tight to my chest for 4 straight hours as she innocently slept away.  The nurses kept telling me how great she was doing and I'd let another tear fall and gently nod my head "thank you". Sloane had surgery yesterday morning to get her port placed and we got admitted to the oncology floor at Riley following surgery. She did great during and after surgery.  She is SO so strong. She will be receiving chemo every 4th week for 2 days at a time and for a total of 6 months. We met about 25 doctors and nurses and have loved every single one of them.  I can't say enough amazing things about t
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Saint Lucy

God is GOOD is an understatement.  We spoke with Sloane's oncologist this morning.  The MRI showed no brain tumors and no optic nerve involvement.  Austin and I took a huge deep breath, that felt good. Unfortunately, her left eye is as advanced as the doctors originally thought.  We are awaiting staging for her right eye to determine further treatment.  The left eye will need to be removed, it will not be responsive to any type of chemotherapy and the retina is completely detached and basically covered in tumor.  The staging of her right eye will determine if she needs systemic chemotherapy or local chemotherapy (chemo injected into her eye).  We should know more this afternoon.  If the doctors feel that her right eye will need systemic chemo then we will proceed with a port placement hopefully this week.  I hope this all makes sense. Looking back and reflecting on this past week almost brings me to my knees.  God works in very mysterious and very timely ways.  He gave us such a
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Happy Thanksgiving. It's an important time for each of us to take a moment and recognize how truly blessed we all are. We go through this life and have different experiences, some travel, some start a business, settle down, start a family, etc. that's the beauty of the lives we have you can be and do whatever you want, create your own story. My life changed two days ago. My beautiful, vibrant, outgoing 15month old daughter Sloane was diagnosed with cancer. That word sucks. Fuck Cancer. It's changed our whole lives and I know it's just getting started. It's hard, I now have to ask my wife to do more than the Wonder Woman shit she already does on a daily basis, promote my oldest daughter Audrey to CBS (Chief Big Sis) and make sure she knows how critical she is to this whole process. As private as I tend to be, I have to call on people and expect them to just listen while I sob, because they know I won't do it around the girls (as much as I can). I don't k
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November 21, 2017

I'm not much of a writer and my mind has been all over the map in the past 24 hours. Yesterday was the hardest day of our lives, to date. One cannot be prepared to sit in a doctors office and be told their child has Cancer. Our child? Our sweet spunky 15 month old has cancer? The pit in my stomach is real? Can you start over? I'm suffocating, we're suffocating. Oh please, God. But there's medicine, and chemotherapy, and really intelligent well practiced physicians. And there was a lot more said and only a little retained. Yesterday was a really really hard and long day.  Sloane was diagnosed with bilateral retinoblastomas, also known as cancerous tumors in both eyes. She will be having an MRI under anesthesia on Friday morning to rule out a tumor in her brain. She will then have surgery to get a port placed in her chest for 6-8 months of systemic chemotherapy. Surgery will follow the chemo and her eyes will be followed closely. We became a part of the Riley Family ye
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