6 weeks

Today my heart is heavy. It has been 6 weeks since my sweet one went to Jesus. Today is also International Childhood Cancer Day. Today ALSO happens to be the day that I will step back into the halls of Children’s Medical for the first time since I left my baby there 6 weeks ago. Today is heavy but, today also has purpose.

When we were at the hospital, I was very hesitant to make friends. While I know having a strong network of other cancer families is very important, it’s also incredibly hard to take on the grief and worry of other people while you’re right in the middle of fighting for your own child’s life. At least, that’s how it was for me. I didn’t really put myself out there to make friends because it just felt like too much. Too much worry, too manny tears, and just…too much CANCER! Sure, I followed the Children’s Cancer Family Page on Facebook, knew several names and faces, even had some good conversations but, as far as like exchanging numbers and becoming true friends…I just couldn’t do it. Self protection I guess.

The Lord knew better for me though because 5 weeks into our treatment another Tyler family was hit with Leukemia in their 4 year old son, Jase. They were at the hospital with nothing and I knew that feeling all too well so I went yo Walgreens, made a care bag, and left it at the nurse’s desk for them with my phone number. Shauna, Jase’s mom text me that night and my first real cancer friendship was born. They visited us every week when they came for chemo and I just love them so.

6 days later, Sophie’s best friend from church, Addie Leigh and her precious mom Tami showed up with Leukemia as well. Tami and I were pregnant together and friends from church so obviously, God sent us both to Children’s for each other. We also are pretty similar to each other which is great! She has been invaluable to me and I’m so thankful for our growing friendship in the midst of the horrible.

In August, when Sophie relapsed, we sat in the ICU waiting room while she was sedated and intubated. I see a guy walk in with like 23 children! Ok-it was like 8 but it seemed like a ton to my tired brain. I hear his children asking ‘How can mom nurse the baby if the baby can’t go back in the icu room?!’ They were seriously distraught. I immediately interjected-sorry to eavesdrop but you guys need a Ronald McDonald room ASAP!-We quickly found out Dustin and Jessica were the parents of Abigail who had just had her kidney removed with a Whilm’s tumor. They were beginning their cancer journey right there where we did-in ICU. We’ve since formed the most incredible friendship with them!

Then lastly, my sweet friend Lindsey. I had seen her daughter Kaylynn for months but never reached out to them-self protection remember? Then in October (I think), I read on the Children’s page that Kaylynn was considered terminal and my heart just broke. The Lord was telling me to befriend her mom, there’s no other way to describe it. I felt this unexplainable pull to her. So I messaged her on Facebook and we ended up meeting in the hallway and sitting in a side sitting room on the 6th floor for an hour one day while both of our girls slept. I know now, we were meant to walk the ‘terminal’ road together.

These friends of mine mean more to me than I could ever tell them. I pray for their babies every morning and at night when I can’t sleep. I tell Soph about them when I visit her at the cemetery and I ask her to help them be brave like her. I will admit that I some days have a hard time texting them because….well….their kids are still here. But what’s so great about these friends is that-I know they understand and they love me still. I know they pray for me because they tell me every time they do. I HATE the circumstances that formed these friendships but oh how thankful I am for them.

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Today. 6 weeks after losing Sophie, I will walk down those halls to see ALL FOUR of my friends. They are ALL at the hospital right now. The halls are still full. Cancer doesn’t change and it doesn’t stop. I’m dreading the walk up the skybridge and the ride up that stupid talking Train elevator. But at the same time, I’m SO looking forward to hugging my friends and THE NURSES!!!!!!! Oh I can’t wait to hug me some nurses!!!

I am a purpose driven person. Give me a task and I can make it work. So today, I have a purpose. Today I will hug my friends, pray for their children, bring them food, and bring goodies to make them all smile and feel a little less like cancer. I wish I could do more but, people did SO much for us that I’m so blessed to be able to do anything for my friends.

Today, I ask you to pray for us and for our friends.

1. Pray for Jonathan and I as we walk those halls and hug those necks. Just pray for us.

2. Pray for Abigail. Her surgery is today to remove 2 nodules from her lungs and test them for cancer. This is HUGE for the remainder of her treatment. Pray that she recovers well and is CANCER FREE!!

3. Pray for Addie Leigh. Addie has been inpatient for over 2 weeks now with fever, no immune system, nerve pain, and viruses. Pray big that she will bounce back and be able to go home soon! Pray that PT will work miraculously for her legs and feet!

4. Pray for Jase. He was admitted yesterday for fever, RSV, and 2 viruses. He also has ZERO immune system. Pray that antibiotics will kick these problems and pray protection over him.

5. Pray for Kaylynn. While she is considered terminal, she is getting palliative chemo to give her time with her mama. Pray for a miracle to save Kaylynn but also pray that she feels good and can make the most of her time with her family.

6. Finally, I ask you to pray about how you can help kids like this. Do some research into organizations that fund research for better chemo and cures!

I know its a lot to pray for but, there’s a lot of kids….and a lot of cancer. They deserve so much more. God is still good and He’s still bigger. He’s big enough for this and so much more.

#AbigailtheWarriorPrincess #AddiesArmy #HulkStrong #PrayingforKaylynn #DoMoreForSoph

Month One

It’s been one month. One month since I saw her eyes, watched her breathe, and held her on my chest. One month since I changed a diaper, gave a bath, and rubbed lotion on soft pale skin. One month of trying to stay so busy that I don’t have time to think. One month of going through the day only to see her face when I try to sleep. One month of sitting by a graveside, burying my face into blankets and clothes trying to find a smell, begging God to take the terrible memories away and make the good ones more vivid. One month of aching arms and broken hearts.

But at the same time…

It’s been one month of getting loved on by more people that I can name. One month of gift bags, movie nights, dinners, lunches, hugs, and sweet messages. One month of hearing countless stories of how Sophie has and is still changing lives. One month of growing closer to my husband and my God because there’s no one else to turn to. One month of longing to be ‘Mom’ and friends saying here’s my baby to love on you. One month of being in a place where I’m forced to sit and BE STILL and know that He is God. One month of being COMPLETELY SURE that there HAS to be a Big God with a big Plan otherwise, how have I made it a month? That’s nothing short of a miracle in itself. We get up each day, still sad, yet determined to live a life worth more. We are living a life that’s broken and the only thing that can hold it together is Jesus.

You know, I’ve been kind of dreading today. February 4th. One month since she left us. But, I woke up this morning at complete peace. I woke up with the sweetest thought in my heart, Shelby, you aren’t one month further from her but, you’re one month CLOSER to an eternity with her and with Jesus.that has given me such peace today, even joy almost.while there’s no joy in losing your child….I’d never try to be fake and say that….there is joy picturing her healed and whole, running and dancing and watching us. There’s joy knowing that she’d be so sad if we just curled up and didn’t do more with our lives.

So where does that leave me? Where does that leave Sophie the Brave, this blog, and her legacy? The full answer is…..I have no idea. The short answer is, I’ve been MIA for a few weeks trying to wrap my mind around those questions. What’s next? Where do I go from here? How do I make my life about more?

So that’s what I’m exploring. I’ve been super inspired lately and am working on several different posts/articles. I’m working on a public speaking course and putting some serious time into studying my God’s Word and reaffirming in my heart that even though I am shattered and I still don’t understand why her…He is STILL BIGGER. Jonathan and I are figuring out how our marriage looks in this new light and we are looking for ways to DO MORE FOR SOPH.

How can you help?

1. Keep following our journey. I wanted this blog to be about more than Sophie and more than my journey as her mom it, about Jesus shining through all of it. And I’d love for you all to continue to follow me through this.

2. Please keep praying for us and our families and praying for what’s next for us all. Just because we have faith in the bigger picture, it doesn’t make the current picture hurt any less….like I said, I spend a lot of time with my face buried in her suitcase of hospital clothes. All the positivity in the world doesn’t change the broken hearts.

3. Pray for my speaking ministry course…..nothing may come of it but, it’s got me excited about writing and wanting opportunities to share what God is putting on my heart.

4. Keep looking for ways to DO MORE FOR SOPH and please share stories with us! It gives our hearts such joy knowing someone is doing something bigger just because Sophie inspired them.

Stay tuned for what’s to come because it just feels like the Lord has us right where He needs us.

What does grief look like so far?

It’s been 15 days. Most days we are ‘ok’ but, there’s not a second that things don’t feel wrong. We feel like we are supposed to be parenting yet, there’s no one here to parent. I should be making snacks, packing a diaper bag, arranging a baby sitter, reading books…….but I’m not. It’s only been 2 weeks and I have no idea how I’m going to live the rest of my life without her.

Grief. It’s a weird emotion. We all know there are stages. Denial. Anger. Bargaining. Depression. Acceptance. We’ve been grieving in one form or another since our life changed on May 18th. It cycles over and over, sometimes all in one day. We grieved our old life, our child’s innocence, our relationships with everyone else in our life, and our little bubble of happiness. Then we kind of got acclimated to the cancer/hospital lifestyle and it started to feel normal. A new normal. We had resigned to that being our life and we were going to handle it because we could do this if it meant she’d be ok. We could put our life on hold for 3 years and get her through this.

Then August 7th and relapse happened. Again we started grieving. We fought HARD that month to keep her alive and then we watched as the horrendous rescue chemo took all of her independence away. So again, we grieved-her voice, her walk, her playing, her moving on her own, sitting up, eating, drinking….. we grieved as it all went away. Then YET AGAIN we started adjusting to a new normal. Chemo, speech, physical therapy, occupational therapy, massage therapy, mouth care, feeding tubes, new meds…..all became normal. And finally, another relapse and then she left.

Grief has taken so many forms since January 4th at 2:11PM. It looks like so many things and I quite honestly don’t have the energy to put them into full sentences so, I guess a list will have to do. What does grief look like? It looks like…..

-Holding her for the last time because it’s time to lay her flat

-Giving the last bath and putting on lavender lotion because it’s her favorite

-Signing partial autopsy permission forms

-Writing ‘mom’ next to relationship to patient for the last time

-Leaving her in a room alone and walking out of the hospital

-Leaving her giraffe with her so she’s not alone

-Picking out clothes, Crocs, a bow, and what we wanted in the casket with her

-Laying on the kitchen floor crying because her pictures are on the fridge

-laying her Mattress on the floor and trying to find her smell

-Cleaning medical supplies out of the bathroom because you can’t stand to see them anymore

-Being in the funeral home building at the same time as her but not being able to see her

-Watching my husband fall apart over and over as we sit on the bathroom floor together

-Getting enraged at really dumb stuff

-Irrationally hating everyone with healthy kids

-Sniffing everything trying to find her smell- pacifiers, toys, blankets…..

-Sleeping with 2 blankets and a giraffe because they were hers

-Carrying the pink blanket all over the house with me

-Eating once a day and losing 20 pounds because you’re constantly nauseous and at the same time hungry

-Feeling like you should be parenting but you can’t

-Knowing no one has a reason to call you mom anymore

-unfollowing every mom blog that you’ve gotten advice from for 2 years

-Not leaving the couch all day

-Not being able to watch them close the casket

-Your arms ache because they’re empty

-Resenting everyone for going back to ‘normal’ when your life is still blown apart

-Reliving her death over and over and seeing her laying there perfect and still

-Praising the Lord for her freedom while crying out for her to come back

-Worshipping

-Sitting in the shower to cry

-Standing in front of hundreds of people and giving your child’s eulogy

-Seeing her everywhere-her hoodie towels in the cabinet, her raviolis in the pantry, and her dishes in the kitchen

-Laughing because it’s ludicrous that you’re sitting on the couch at noon instead of at work or the hospital

-Feeling like you’ve moved away because you miss the hospital and the nurses

-Doing stuff you hate because she did much worse for 8 months

-ignoring your phone for days and days

-Having no purpose because your full time job for 8 months is over

-Laughing with friends then feeling bad about it

-Falling asleep on a couch in a room full of 30 people

-Letting your friend’s 2 year old fall asleep on you watching Mickey because you’ve missed it so much

-Sitting at the cemetery, alone wondering how in the world this is your life

-Relearning how to be married full time

-Seeing a Trolls alarm clock at Kohl’s and losing it

-Getting a ‘mommy and me class’ flyer in the mail and sitting on the curb by your car sobbing

-Aching for a baby but, knowing you just want your baby back

And a thousand more things that pile up each day

I wish I had a redeeming moment to add to this. We aren’t just sitting on the couch crying all day but, we are sad everyday….all day. There’s moments of happiness in our days but, still we are sad. It feels wrong to be here. Every part of every day feels so wrong. My arms physically ache for her. My husband can’t stop watching videos and looking at pictures. We are broken.

BUT GOD IS BIGGER. BIGGER THAN CANCER, BIGGER THAN GRIEF, BIGGER THAN US.

Today, Jonathan opened his Bible and it opened to Jeremiah 31 and its there that I’ve found hope today. While we are oppressively sad and crushed by the weight of her absence….there is still the promise of joy. There’s hope in what’s to come. And for now, we try to….yet again….find our new normal and continue through the process of grief.

Jonathan and I are getting on a plane tomorrow and heading to California for 8 days together. We are packing those days full or touristy activities, food, shows, shopping, and marriage. Please, if you think of us, be in prayer for safe travels and for true connection with each other. Please pray for our broken hearts and for peace that can only come from Jesus. Pray for God to show us ‘what’s next’.

For Sophie…

I’ve taken a couple of days to process and absorb since the Celebration Service of Sophie’s life on Saturday. I still don’t think I have the words to fully describe what that day was like for me. Words like holy, perfect, sad, and love come to mind but, that’s only 4 words and a day like Saturday deserves way more than that. Maybe in a few days it’ll come to me.

If you missed the service live, here is the link to watch it Sophie’s Celebration

I also wanted to post my entire speech. I read a shortened version on Saturday for time purposes so here is the full speech.

I wrote this on December 22nd After we got the news that Sophie’s cancer had returned. I couldn’t sleep and this just came out and I’ve added a few things in since she passed. We all know I don’t ever write anything short so, here goes.

All I’ve ever wanted to be is a mom to a little girl. I became a teacher because it’s a great mom’s job even if the money isn’t super glamorous. I’ve never cared about having a lot of money or things-I just dreamed of a good man to love me and give me babies to care for. I dreamed about brushing and putting bows in hair, playing tea parties and dress up, lazy movie days cuddled on the couch, playing at the park, and endless laughter. The last 2 years and 10 months of being Sophie’s mom have far exceeded anything I’d ever dreamed about. 1,021 Days. I loved her from the second that pregnancy test was positive. I loved her as I laid on a couch for 12 weeks of bed rest just trying to get her here when a massive blood clot threatened my pregnancy and her life. I loved her through 13 hours of labor and 4 days in the hospital. Through colic, and reflux, and ear infection sleepless nights-I loved her. I’ve loved every single second of being her mama.

She was perfect-never a great sleeper-but perfect nonetheless. She was happy 95% of the time. She was caring and compassionate-sad parts in movies made her cry and she always brought toys and cuddles to any friend that was sad in the nursery. She gave the best hugs and kisses always followed by a smile and ‘I loo’. She loved fiercely. She is my greatest accomplishment. Witnessing her be so brave and strong over the last 7 1/2 months has been the absolute privilege of my life. Words can’t fully describe just what children endure in hospitals and I could never be able to fully articulate just how brave she was. Far braver than I’d ever be in her shoes. Before she lost her voice she’d still tell the nurses ‘no thanks’ and ‘I’m brave’ even when they were giving her owies. Although they’ll all tell you that even though she said sweet things, her eyes betrayed the true sass within. Even when relapse and chemo took her voice and her function-she was still so expressive with those eyes. Oh how I miss those eyes.

To say this is hard is an understatement. Nothing will ever be the same again. Our friendships, relationships, our marriage, nothing about our lives will ever be the same. There’s now a Sophie sized whole in me. 36 inches and 25 pounds of emptiness that only Jesus can fill. I don’t understand this and if the Lord sees fit to explain it to me here on earth I’d gladly sit and listen but, I just don’t believe things like this are for us to understand. And while that doesn’t make any of this ok or make it hurt any less, it does provide comfort that He knows, He understands, He hears us, and He’s here. He’s here to fill that hole. Because as much as I love her, He loves her more. He loves her so much that He needed her more than we did for whatever reason. It comforts me to know that she’s not alone. She’s not suffering. She’s not being poked and messed with. She’s not bed bound and frustrated. She’s running, and dancing, and singing. She’s playing tea party and dress up and getting her hair brushed and bows put in it….but now, she’s doing all of it with Jesus.

We prayed and prayed for a miracle and people ask why didn’t we get It? But the truth is, we got several. It’s a miracle that we got her to the hospital in May and caught the tumor. It’s a miracle that we had 3 months of her responding to treatment and still getting to be her active self. Its a miracle that instead of being ripped apart, our marriage is the strongest it’s ever been. It’s a miracle that we didn’t lose her on August 7th when she relapsed and everyday since That day has been a miracle. And though we didn’t get our complete healing on this side of heaven, the fact that Jesus was here on this earth and died for our sins so that He could give Sophie complete healing in heaven….is the ultimate miracle. If you don’t believe anything else-please believe that. If you find yourself believing that for the first time, I know plenty of people that would love to talk with you about that. Bad things happen because this place- this world is broken. Romans 8:18 says that ‘The pain you’ve been feeling can’t compare to the joy that’s coming.’ And I know that’s true. One day, we’ll be reunited with Sophie and we’ll feel the joy of praising and worshipping our savior together forever. It doesn’t ease the very real, horrible earthly pain that is threatening to choke and consume me but, that doesn’t make it less true. I don’t understand why we don’t get to keep her with us here. I don’t understand why she had to suffer such a horrible disease. I don’t understand why cancer floors in children’s hospitals across the nation are so full that they have kids waiting at home for a bed to open up. I don’t understand any of it but, He’s still a good, good father and he loves us. He loves Sophie. He is bigger than cancer and ALL of the bad stuff. I’ve wanted to be very clear about that from day one of this journey. This was not for nothing-even if we can’t see it right now.

It can’t be for nothing. Sophie can’t have fought this awful disease for 231 days for nothing. So I’d like to challenge each of you sitting in this room and watching on the video to do more. Do more. Do more for people than you normally would. Value people more than your stuff or your job. Pray more. Get involved with the body of Christ. Let people in. Give more of your time if you can’t give your money. Put the phone down and be present with your people. Spend less time complaining or arguing on social media and more time doing more for the Kingdom. Donate more to an organization than you used to. Find a cause you’re passionate about and get involved. Jonathan and I are currently figuring out ways for us to do more. We are discussing how we can help. Visiting the hospital, donating toys to child life, raising money for research…Our kids deserve more than this. They deserve full lives free from hospitals and poison. So I’m going to do more so that other kids get the life Sophie didn’t. I’m partial to childhood cancer organizations but, whatever cause you can get involved in…do more for it. Do more for Soph.

I’d like to say a few thank yous even though I never could fully express my gratitude.

To each lab tech, anesthesiologist, radiologist, nurse practitioner, therapist, and basically any medical personnel that we have worked with-thank you from the bottom of our hearts for what you do and for how you loved and treated our child. Dr. Watt, Dr. Slone, and Dr. Howery thank you for what you do I know it can’t be easy at all after seeing it day in and day out. You get truly invested in your patients. They are not just bodies in a bed or names on a sheet. Each of you has cried with us and hugged us and we are eternally great full for you for doing everything in your medical power to save Sophie- we got 7 more months with her because of you.

Specifically to her nurses-I think we all know I love nurses- in fact if you’re here will you stand up real quick for me. And if you’re watching on the video know this is for all of you-I can’t express enough how incredible each nurse we’ve had has been. When we found out Sophie was terminal, Jonathan and I said ‘send us back to Children’s’ immediately. We wanted to be with the family that has loved her and us since May. It was the best decision. For 13 days we got visit after visit, hug after hug, and prayer after prayer from almost every nurse we’ve ever had. Some of you even came in to sing with us during all of the days of Sophie’s party. Knowing they were back in charge of Sophie’s care brought so much comfort to us in her last days. I think she was even more at ease and comfortable knowing she was ‘home’. You are the hands and feet of Jesus every single day. Never doubt that you’re all doing exactly what you were meant to do. You have all touched our lives and we will honestly miss seeing you everyday. We’ve already missed you in the last week. You are part of our family now and we will be back to see you.

I’d also like to thank the 50,000 plus people that have followed our journey over the last 7 months on Facebook. Whether you’ve followed since the beginning or have come alongside us at different points-Thank you for your encouragement, your messages, and most importantly your prayers. We never dreamed Sophie would reach so many people so thank you for loving her like your own. Your prayers have meant more than any donation ever could. We have felt strength and peace for 7 months that can only come from the Holy Spirit and mass prayer. We’d have curled up and given up months ago if it was just us. Thank you to Every single person that has helped us. If you donated money, gift cards, your time to a fundraiser, bought a t shirt, played in the basketball tournament, bought anything from a fundraiser, sent gifts, care packages, food, coke tabs, or gift cards…..we could never ever say thank you enough. We have been so provided for financially and with love that we were able to fully focus on Sophie and we could never repay that. Thank you to Bethel. Our home and family here have rallied around us and carried us with your prayers, donations, love, and time. Every card, visit, cleaning our apartment, stocking our pantry, feeding Jonathan when he was home alone, call, text, and group prayer session has been so appreciated. We love this place and we love each of you. We need you now more than ever. Jessie and Alyssa, for taking on cemetery and funeral arrangements so I didn’t have to make those calls-I’m eternally grateful. Tami and William for walking this journey with us so fully while you walk your own cancer road we love you so much and we are still here for you and Addie no matter what. My dear new friends and fellow cancer moms walking this journey still- it has been an honor praying for your babies and living the last 7 months with your love, texts, advice, tears, hugs, and triumphs. I love each of you more than you know. Together we can do more for our babies. Our friends and family that have stepped up to check on us, sent an I love you text, had a movie or hang out night, visited us at home and at the hospital, made us laugh and feel normal, took us to lunch or just flat said this sucks I’m sorry I can’t fix it- just thank you for your love and for your time. Those mean more than anything. To Brownsboro ISD, Mr. Hunter, Ricky, my 3rd grade family, and the rest of CES-thank you for everything. For donating sick days, cards, money, gift cards…for hugs and prayers. For allowing me to keep my insurance and paychecks while being able to be a full time mom-I’m truly eternally grateful. That’s been the biggest blessing we could’ve ever asked for. Kissam Elementary-you guys prayed Sophie into this world and you’ve held me and her ever since and I love you all so much. I’m sure there’s hundreds of other thank yous I could give but I need to thank the most important people.

To our brothers-Bonner, David, Solomon, Scott, and Tyler-thank you for loving our Punkin. For being the best and most fun uncles anyone could ask for. I know you each wanted to be with her and us more but we, and especially Sophie know how much you love us. Thank you for being our sounding boards when we need you and for dropping everything to come when you could. For coming over for movie nights and dinner and for making us feel more normal in a place that’s anything but normal. Thank you for spending her last 13 days in the hospital with us, playing music, singing songs, making us all laugh, cuddling her, and holding onto us. We’d be lost without you.

To my daddy-thank you for showing me the kind of man that I should be with- a man that takes care of his family at all costs and loves them so fiercely. A strong man that is really a big softy on the inside. Thank you for driving hours daily every week yet still coming to be with us as much as you could. Thank you for the laughter and smiles and for being the best Pappy in the whole world for Sophie to love. I know she loved you more than pizza and so do I. Randy-I don’t know if thank you can cut it for everything you’ve done for us. Thank you for raising such a good man and for being the best boss he could ever ask for during this. Jonathan is so lucky to have your wisdom and counsel in life but also daily at work. Thank you for bringing joy and music to Sophie’s life and for continuing to show us what it looks like to Praise Him in the Storm. I know Pop loves punkin- and punkin definitely loved Pop. MaryDale-thank you for being there for me to watch Sophie while I was at work. Knowing she was at home with you gave me such comfort even though I hated being away from her. For putting your life on hold to be with us every week since May-for staying a lot of Fridays so that I could be home with my husband for a semblance of together time. And for praying so fiercely for all of us and for never ever losing the glowing optimism that I know we all love about you so much. Thank you Jolly-she loved you so very much. My mama- there aren’t enough words. You’ve never gone more than 14 days without seeing Sophie. You’ve been my sounding board, my 1AM advice call, my punching bag sometimes, but most importantly my teacher. You taught me how to be the best mom-loving so much it hurts and showing it everyday-at least I hope that’s what I’ve done. For retiring early and putting your entire existence on hold for us-I’ll never be able to thank you enough. You know there’s so much more I have to say to you but I just can’t and get all of these people home today. I love you and Mammy’s Darlin loved you too-so so much. Jacy-my best friend since you came into this world. Loving you trying to keep you in line was my first crack at being a mom. I’d have been lost without you in my life. You know when to build me up and when to keep me humble ha. Thank you for putting Sophie first and your business and your own health second. You are the original spartan and she learned how be silly and sassy and more importantly how to be a fighter from you. I’ll forever be thankful for the hundreds of photos you’ve taken of her. Because of you, she’ll live forever in print.

Jonathan, the love of my life. Thank you for making me a mom to two angels. Thank you for 5 and a half years of the kind of love and marriage that people write novels about. Thank you for showing me what true sacrificial love is. Thank you for being the most incredible daddy. Not one person that ever saw you with her could doubt that she was your whole world and I am your moon. I’m so thankful I get to live this life with you. If someone would’ve told me 7 years ago that I’d have you but, have to go through this…I wouldn’t change a thing. You’ve made me who I am and you helped me become the best mom I could be. You are the one my soul loves. I love you so much and we will get through this like we have everything else-together, holding hands.

If you have followed us on Facebook, you know that I find a lot of comfort and inspiration from Ann Voscamp. I was reading her Christmas devotional on the 21st-the day before we got the devastating news that we were out of options. This particular part really hit my heart hard and I actually screenshot it on my phone to go back to later. Now I know I was touched by that so I could share it here and I’d like to close by reading the last few lines of that page.

“You always get your Christmas miracle. You get God with you. God gives God. He withholds no good thing from you. And the good things in life are not so much health, but holiness. Not so much riches in this world, but relationship with God. Not so much our plans, but His presence. And He withholds no good thing from us because the greatest things aren’t ever things. He doesn’t withhold Jesus from you. Christ is all your good, and He is all yours, and this is always ALL your miracle. No matter the barrenness you feel, you can always have as much of Jesus as you want.”

Finally, My sweet baby love. Thank you for letting me be your mama. For teaching me more about love than I could’ve ever known without you and for helping me believe in miracles. Thank you for showing thousands of people what is means to be brave and that God is BIGGER. I promise to do more with my life because of you and make you as proud of me as I am of you. I love you so very much-save me a place at the tea party.

Christmas Miracles?

Big news from Team Sophie. We are finally getting out of Limbo and starting the stem cell transplant process! I have a lot of feelings about that-happy, excited, scared, worried, thankful, terrified, stressed, relieved…mostly I feel insane 90% of the time but, oh well….I’m owning that. There’s also about 693 details to go over in this process but, it’s late and my child is actually asleep so, this needs to be relatively short so I can sleep too. I mean, we all know I don’t write anything short, again I say, oh well.

So, Sophie finished her 4 week chemo plan on Friday and today we were supposed to meet with her doctor to discuss what’s next. We were expecting him to be in favor of more chemo, more therapy, and no transplant but, he came in and kind of shocked us. The team agrees that it’s go time for transplant. Ideally, we’d spend months in rehab getting stronger before transplant but, we just don’t have that kind of time. It’s a miracle that her cancer has (seemingly) stayed at bay on this light chemo regimen and no one is comfortable waiting much longer. It’s terrifying waking up each day wondering if there’s cancer exploding in her body while we wait. Every tiny new symptom brings on fear of relapse and a minor panic attack. (I maybe spent 10 minutes on my bedroom floor trying to keep breathing the other day when she had a weird breathing episode.) We just aren’t going to get a ‘perfect’ situation. She has made enough small progress in therapy that her team feels the risk of a life threatening complication is significantly lower. She’s doing a much better job protecting her airway, swallowing her spit and even some liquids in speech, she’s tolerating sitting up with help, can move her head around on her own, and is even trying to cough and clear her throat. That all seems like small stuff but, she wasn’t doing ANY of those things a few months ago. Baby steps. She’s essentially like an infant and plenty of infants have survived transplant. SO BASICALLY her doctors think the risk of going to transplant now is far less than the risk of her cancer coming back if we wait any longer. We obviously are still worried and apprehensive but, already it feels like a slight weight is lifted simply because we are back on somewhat of a plan. Transplant is our only option for possible long term cure so, it’s now or never basically.

Today is has been 7 months since the day our world stopped. Anyone else see the irony there?

Like I said above, there’s A LOT of detail that I will explain in due time but, for now, here is a basic timeline of what the next few weeks will look like.

Tomorrow, we will start the ‘transplant workup’ process. All that happens tomorrow is the nurses will draw quite a bit of blood to send off for literally a TON of testing. They will test for anything under the sun-all of the basic levels they always test for, any disease or virus that could be hiding in there, and a ton more than I don’t even know about. They will also call get the cord blood samples reserved for Sophie sent to Cook’s. Wednesday, she will be going under anesthesia for a repeat PET Scan, bone marrow biopsy, and spinal tap to insure that she is still cancer free. Her counts haven’t shown any reason to think she’s not still cancer free but-it’s still nerve wracking. At some point this week they’ll also do a hearing test and an EKG to check her heart function. That’s pretty much it for now, she’ll continue to get daily therapy while we wait. At some point next week, she’ll go under to get her central line placed in her chest for more IV access during transplant then we will sit down with her team for one more meeting to go over all of her work up results. Around January 2nd we will leave the rehab floor and head up to the transplant unit then she’ll start her conditioning chemo on the 3rd. She’ll get pretty strong chemo from the 3rd through the 10th then TRANSPLANT DAY is tentatively set for January 11th. I’ll write all about what transplant will look like soon-for now we have to get there.

Please don’t forget about us and keep praying! We need it now more than ever!

1. Pray that Sophie handles anesthesia well on Wednesday and that all of her tests show that she’s still cancer free. Add to that continued prayer that she’s healed forever-transplant is her cure!

2. Pray for divine progress over the next 2 weeks in therapy-that Sophie can take advantage of every second she has in therapy before transplant. Christmas miracle progress! Full restoration.

3. Pray head to toe for full body protection during transplant. Pray for her airway and respiratory system. Pray that none of this makes her neurological symptoms worse.

4. Pray against ANY infection or sickness-she will have ZERO immune system for awhile and that’s scary. Pray health over her caregiver team too! We are all chugging Vitamin C.

5. Pray for our Christmas. It looks very different this year and to be quite honest, I’m dreading the next few days. Pray for joy.

Advice for a cancer mom 

 I posted this list on my personal Facebook page on September 13th the I shared it on Sophie’s page as well. It was another night when I could not sleep and I had an idea to write out 10 things that I thought would be invaluable to brand new cancer parents. That list soon turned into 15, then 20, and finally I settled on 22. I honestly could keep going with more now that we’re even further on our journey and maybe I will write a Part 2 soon… we’ll see. 

But I wanted to reshare my list here on the blog. Obviously this list has several things specific to a cancer fighting family but, I think anyone that has a chronically ill child could find something here that speaks to them. I didn’t title it ‘Advice for a caregiver or cancer dad’ because I can only honestly speak from the heart of a cancer mom. While I’m sure my husband and family members agree with this list, they probably could also add things from their unique perspectives. So, I didn’t mean to purposely leave anyone out-it’s just written from my perspective as a married, mom of one. I know a single mom or mom with multiple children would have their own things to add to this list. My hope is that it will be shared with someone new to this life and that it will bring comfort and maybe even take a little stress off of some shoulders. 
Advice for a Cancer Mom

By: Shelby Skiles 9-13-17

1. Give yourself permission to rest. I tried the whole not eating or sleeping for 48 hours thing and it really wasn’t productive. You can’t do all of this alone. You get to go take a bath, get a massage, take a nap in a dark room with the door locked and your phone on do not disturb. You also don’t have to justify it to anyone. ‘I just need an hour’-No you don’t-you need a week but you can’t take a week off so take a whole afternoon and go walk around Target and cry into a latte (*cough* bottle of wine), buy some new yoga pants because that’s all you wear now, get food from somewhere you love with all the calories, then take a hot shower, pray it out and go back to your baby. 

2. You don’t have to fake it til’ you make it. Your kid has cancer-you don’t have to smile or talk or really do anything other than stare at a wall if you don’t want to. You don’t have to be the beacon on positivity if you don’t feel like it. Don’t be fake-be whatever you feel. And that may change 14 times an hour but, guess what, you’re kid still has cancer and you’re still the only one who knows what it feels like for you-so do what you have to. Stare at that wall. 

3. Don’t feel guilty about literally anything-within reason. I mean you don’t get a free pass to be horrible to everyone you meet but you do get a whole lot of grace in other areas. Not texting back, losing your temper, eating all the cookies, having 6 cups of Spark or coffee if you’re gross and like that 🙂 and not wearing makeup for a month straight…all guilt free. I eat sushi at least twice a week. Free pass. 

4. If you’re not nice to anyone else, be nice to the nurses. They have the power to let you sleep or be real loud at night. Sucking up with snack baskets is always accepted. And ask them the questions- chances are they’ve been doing this longer than the PA or resident that comes in once a day. And if they don’t know- they know who to ask so- nurses- keep them happy. Nurses ain’t happy, no one is happy. Plus they do the gross stuff when you just can’t clean up puke for the fourth time in one night. 

5. Don’t feel bad about how you discipline or don’t discipline your child during this. They-have-cancer. Obviously, you’re the mom so use your own discretion and judgement but, don’t feel like you have to justify their behavior or yours to anyone. 

6. Take notes about everything. Use a notebook and a blank calendar. You won’t remember what happened yesterday, let alone when the last spinal tap, blood transfusion, or IV chemo was. Keep up with it however works for you but, keep up with it. 

7. Share the journey. A Facebook page, CaringBridge site, CarePages, GoFundMe, etc. Don’t think ‘Oh there’s so many sick kid pages’-yep, there sure are- and your kid is now one of them. Kids get sick too, and it’s good to have the support. Also, for me, writing it out helps. 

8. Find a crying corner. You can hold it together in front of your child because usually, you cry, they cry. So, find a spot, don’t tell anyone where it is and go cry it out. It’s the only spot where you get to totally feel what you’re feeling with no witnesses. Cry, yell, pray, yell at God, laugh like a crazy person… whatever gets you through the day girl. 

9. Don’t Google anything. Just don’t do it. 

10. Ask for help. It’s uncomfortable, but people don’t offer to help if they don’t want to actually help. So, make a list of practical ways people can help- then share it. Grocery shopping, house cleaning, pet sitting, gas money, food gift cards, hotel stays, all good examples of stuff you just don’t have time to worry about. Let your people help you. 

11. Don’t try to plan anything ahead. People say ‘take it one day at a time’ and I rolled my eyes at that at first but, it’s true. Literally no two weeks have been the same or gone totally according to plan for us. If you’re Type A- like me- just give it up sister. Our kind don’t do this well. 

12. Ask questions. If someone says something you weren’t aware of, ask. If you don’t understand, ask for the normal people translation. Get medication print outs, ask for prints of blood work numbers so you know what’s going on. You won’t like all the answers but ask every question. And write them down! 

13. Trust your mama heart. If something seems off- speak up. If you suspect something is wrong- request tests, scans, medications, etc. You’re the mom- you know them better than any doctor or nurse ever will. If you have to say -you aren’t touching them until you call our specific oncologist-do it. If you have to stand in the door and say I’m sorry you’re not coming in here without gloves, a mask, a gown, and a thermometer across your forehead-do it. If you have to stand over them to ensure they scrub that line cap for 30 seconds-do it! And 9.5 times out of 10-they listen to you because they know you’re the MOM. They also know you’re exhausted and likely running on caffeine and dry shampoo fumes so they probably won’t argue with you. 

14. It’s ok to mourn your old life. From the second you hear the word cancer-it’s over. Your old life and the dreams and plans you had are now completely different. It sucks. You’ll grow apart from friends you thought were close-they don’t get it-it’s ok, you’ll miss a lot of family functions, you’ll feel alone a lot, your marriage will change, your priorities are now totally different, your plans for future kids may change, and it’s ok to be really sad about that. 

15. Help others when you can. Get snacks for nurses, ask if there’s another family on the floor that needs anything and make a care package, reach out to new families once you’ve been doing this awhile, advocate for bone marrow and blood drives, get toys for child life, or just be open to talking with other parents. Sharing your story helps them and you feel less alone. 

16. Find an outlet. Writing, coloring, Netflix, a reading list, Bible study, podcasts, painting, knitting, whatever it is…. do it. The days are long and your kid sleeps-a lot. And sadly the old ‘nap when the baby naps’ just doesn’t work in the hospital or when you’re scared to fall asleep because they might puke or stop breathing or wake up scared and need you. (See number 3: six cups of coffee=free pass)

17. Make peace with the gross stuff. Puke; snot, diarrhea, blood, pee, spit, sores, pus… all really gross… all stuff you will have to clean up. Put on some gloves and suck it up. 

18. Talk about it as much or as little as you want to. Some people feel better talking it out-some don’t. There’s no right way to do it. 

19. Help out. The days are long and you feel useless, especially at the hospital. So, do chores like you would at home. I like to take over changing the sheets, doing laundry, wiping down furniture with alcohol wipes, organizing supplies, etc. it helps you feel more ‘normal’.

20. Lean on your spouse or whoever you have to support you. I’m blessed with a selfless man that has always put me first and now is no different. You have to have a partner in this, not a punching bag. Go on dates- make each other a priority when you can and talk about real stuff. 

21. Try to accept that you can’t fix it. You can advocate for them, cuddle them, encourage them, change diapers, clean puke, and wipe blood but, you.can’t.fix.it. Lean on the Lord’s grace-beg for supernatural peace and grace to overcome it and adopt the only mentality that will keep you sane-it is what it is. You can’t change it, so make the best of it when you can and cry when you can’t.

22. Pray over that baby of yours every single day. Lay your hands on what came from your body (or your heart if they’re adopted) and you pray. Pray for healing and strength in Jesus’ name. Pray for specific symptoms, side effects, tests, and medications happening that day. You storm the gates of heaven every single day for your child because they are yours-given to you by the One who knew them before you did. He knew them before He formed them. It is your right and privilege as their mother to pray the kind of prayer over them that no one else can. So do it. Do it everyday and watch what the Lord does. Don’t pray so the Lord will act- that’s not how it works. Pray BECAUSE He will act. 
One of my favorite passages from Romans: 8:26-28

Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose.




I’m sure there’s more and I can only speak as a mother of one but, no one fights alone.
Feel free to share for any other moms out there that might need some real life truth.

Update: 11/17 Back in Limbo 

I’ve been waiting to update until I had all of the details because quite frankly-I didn’t even have all of the details until like yesterday. Sophie is not going to transplant right now. While, that is still our ultimate goal-it’s our only goal actually-she just isn’t physically strong enough for it. Transplant will knock out her entire body and she just is so depleted physically that her doctors think the risk of her dying from a respiratory complication during transplant is way too high. 

Now, I know the exact question everyone has -Didn’t you head to Cook’s for transplant? Yes, we did. However, when her transplant doctors saw her in person and were able to examine her…they just couldn’t in good conscience approve her yet. 

So what does that mean? A few things. 

1. It means we will be transferring downstairs to the Cook’s inpatient Neuro-Rehab floor hopefully today. Thankfully insurance is letting us stay here since this rehab will directly correlate with transplant. This rehab will also be a much better fit for us since it is in the hospital. She will get intensive OT, PT, and Speech but will also be under the direct supervision of the neurology team and her oncologists will still round on us daily. There won’t be any interruptions in her meds and any blood work or tests that need to be run won’t have to be sent to another facility. We get to do everything here in the hospital so that’s just so much better for our particular situation than an outside facility. 

2. Unfortunately, taking more time in therapy means we have to do more chemo. For those new to all of this, Sophie relapsed in August only 12 weeks into treatment-that just doesn’t happen. We almost lost her in the ICU in August and a very aggressive chemo called Nelarabine saved her life and killed 97% of her cancer. However, this drug is not used very much at all, let alone in 2 year olds. It was a Hail Mary pass that had a 40% chance of working. It saved her life. But it came with pretty terrible neurological side effects. Sophie has lost all of her motor function. She cannot sit up, roll over, crawl, walk, eat, talk, or do anything independently. She also has nerve damage that causes her arms and legs to flail randomly without control. There’s not honestly a lot of longer term data on the recovery from this because frankly-not many kids that have had to get this drug have lived for various reasons but that’s a whole other conversation. So because of this extreme neurotoxicity several if not all of the stronger chemos are completely off the table for Sophie. She can’t handle it. Because of this a Stem cell transplant us our only long term-hopefully-curative option. In order to receive a transplant, she has to be 100% cancer free and be physically able to handle the process. Well, right now she is cancer free but again-not physically able to handle it. Her cancer is so aggressive that taking time for therapy without chemo would almost certainly result in her cancer returning. If her cancer returns we are pretty much out of options because she can’t get strong chemo anymore. SO her doctors have come up with a less intense chemo plan that she will be on during this therapy time that will hopefully keep her in remission and get her to transplant. 

3. The chemo she will be getting is a nightly G-Button chemo called 6 MP that she’s been on since September and she will get weekly low dose IV Methotrexate instead of bi-weekly high dose Methotrexate. They are hoping that since these two drugs are what got and kept her in remission before that they will continue to do just that. They also are hopeful that the lower dose Methotrexate won’t compound her neurological issues. 

4. This means that we will spend the next weeks or months literally not knowing at all what is next. There is no magic number of days in rehab that will make her ready. So this hospital stay could be very very long. It will be a week by week evaluation basis and as soon as her doctors think she is ready-we will redo her PET Scan and bone marrow biopsy to see if she is still cancer free. If she is still cancer free we will go to transplant. If not, we will discuss the best options to give her quality of life for however long we can. 

                                                                                        
So that leaves us back in limbo. Hoping and praying daily that she stays in remission while getting stronger. Praying that there’s divine and miraculous healing of her brain and nerves that results in huge progress and strength in therapy. Leaning on the fact that we have never been in control and that this is no different. Sophie is kind of writing the book for relapsed T-Cell Lymphoma with Nelarabine toxicity-both of which are so rare there’s not much data on either. We could sit here and think why in the world did we have to get both? Why in the world does our kid have to be the test dummy? Why? Why? Why? But that’s just not productive. We can’t do anything about it now. This is the hand we’ve been dealt by a broken world. Since Sophie was conceived there have been odds against her and she’s beaten them every single time. This particular hurdle is awful and hard and heartbreaking but, she’s too stubborn to give up so we won’t either. There is still a great chance that this chemo will keep her in remission and we will get to transplant. Then we will tackle the difficulties of transplant. Then we will go home and tackle the difficulties of her neurological damage and see where the Lord takes us on her road to recovery. It’s all very possible. We just have to get there. And the only way to get there is to pray our heads off every single day and lean on the faith that God is good in this and He is bigger than every obstacle in her way. 

Specific prayers for now:

1. Smooth transition to the rehab floor and adjusting to new therapies and schedules. 

2. That this specific chemo will keep Sophie in full and complete remission. 100% cancer free forever in Jesus’ name. 

3. That we would get our miracle healing in miraculously fast timing during therapy. Divine strength and return of motor function, talking, and swallowing. 

4. Pray specifically for Sophie to begin swallowing, coughing, and sitting up all on her own! She HAS to be in control of her head and airway for transplant to happen. 

5. Pray that the Lord will give all of us-the doctors, therapists, insurance people, family, and Jonathan and I the wisdom and peace to make the best decisions possible for Sophie. 

6. Pray for protection from all cold and flu season germs! No infections or sickness anywhere near us or Sophie! 


 I’ve gotten a TON of ‘How can I help?’ Messages. Right now, Sophie cannot physically play with toys and we can’t accept stuffed animals or anymore blankets due to infection risks. We also just don’t have space for big care packages. However, we so appreciate every offer! The fact that tens of thousands of strangers are wanting to love on us is truly humbling. 

Here are a few ways you can directly help us while we care for Sophie:

  • Call the Cook Children’s Gift Shop and have a gift card sent to us. These can be used in the gift shop for toiletries, odds and ends we need, and can also be used in the cafeteria! tel:682-885-6209
  • Call the Ronald McDonald House of Ft. Worth and ask to donate towards our weekly room and board donation. RMH asks for a suggested donation of $20 a night. Call: 817.870.4942 OR go to https://rmhfw.org/ and click on the red Donate tab. The where it says ‘other’ type in Skiles room 114 room donation. 
  • Click on our GoFundMe link if you’d like to contribute to gas and bills 
  • We also have a PayPal account set up for bills PayPal.me/ShelbySkiles 
  • There’s a Subway, Jimmy Johns, Starbucks, and Firehouse Subs all in walking distance of the hospital and RMH- anything like that can be sent to PO Box 2737 Athens, TX 75751
  • Finally, any donations made to a cancer organization, Toys for Tots, or Samaritan’s Purse in Sophie’s name would be an honor for us.