Who we are.

We arrived safely last night in San Francisco and this morning we enjoyed an incredible morning of worship at Hillsong San Francisco.

We were reminded that we are NOT what has happened to us or what this world says we are. That is not what defines us. While we are grieving parents, that is not what our whole story has to be about. Although, at times, we feel that our story is over. We ask, how do we go on and live full lives without our sweet Sophie with us? I’m still not 100% sure I know the answer to that. BUT the Lord says that I am beloved. I am redeemed and accepted. I am holy and chosen. I am righteous and complete. I am not just another body on this earth to Him. He PURSUES me because He LOVES me.

My life feels over but, it’s not. I am given ‘peace that passes understanding’ (Phil 4:7). And ‘my God will supply my every need’ (Phil 4:19). He will give me the tools I need to heal and continue my life without her. While I will never be 100% whole on this earth again because of her absence, I am and will be whole for eternity with Jesus. Sophie is whole with Him waiting for me and as much as I miss her with my entire being-I can’t rush getting to her. I can’t curl up in the bed and let my life roll on by. Because of her, I have to make the rest of my life matter.

She taught me to see the big picture. To see that every single person I come in contact with has something going on in their life that isn’t outwardly expressed. You never know if the person next to you just lost their child to cancer. She taught me to truly not sweat the small stuff, to take a breath and think before I act or speak. She taught me to appreciate the things and people around me. Even if I do nothing extraordinary with my life-she changed my perspective and how I see the world and how I interact with the people in it. Most importantly, she taught me that Hope in Jesus is ALL that matters. It’s the only thing that we get to take with us when we go.

His plans for me are great. His plans for you are great. Stop living in what has happened to you and who the world says you are. Start living in who He says you are and the promises you have in Jesus.

“Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.” -Colossians 3:16&17

Be still and know who you are and most importantly, know WHOSE you are.

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.

No more owies…

Sophie Kay Skiles came into this world on March 19, 2015 at 7:05pm and changed our lives forever.

Yesterday, January 4, 2018 at 2:11pm Sophie closed her eyes on a broken, cancer filled body and opened her eyes in the arms of Jesus. She was surrounded by friends and family that love her for 13 days then took her last breathe in her Mama and Daddy’s arms with worship music playing in the room.

She’s no longer stuck in a bed unable to walk, talk, or be her sassy self. She’s no longer struggling to breathe from a giant tumor. There’s no more owies or people messing with her. She is whole and perfect and probably talking Jesus’ ears off as she holds his hand and drags him all over the place asking ‘What’s that?!’

We take great comfort that she is no longer suffering but, We will miss part of our hearts as long as we are on this earth.

We will be having a very small immediate family service in a few days and a large memorial celebration will follow in a week or so once we’ve had time to catch our breath and plan something perfect for her. I will post details for that soon.

Thank you all for loving our girl. Please keep praying for us.

Oh Night Divine

It’s been 11 days since we were told Sophie had a week(ish) left. For most of those days, she’s been alert and comfortable watching movies, reading books, taking walks, and singing LOTS of songs. We have been surrounded by the people that love her and us the most. Our friends and family have showed up in a HUGE overwhelming way. It’s been the hardest but, most fulfilling 11 days of my life.

Christmas was just another Monday up here but, we celebrated the birth of Jesus without presents but, with a new appreciation for the TRUE meaning of Christmas. Because of His birth, His presence with us, and then because of his sacrifice on the cross Sophie will soon be running and dancing at His feet. She will have no more owies, no more pokes, no more chemo, no more laying in the bed day after day. She will be perfect. Because of Jesus, we will see her and her big brother or sister again one day. Oh thank you Lord for your Son and what His life and death have done for us. I’m honestly quite jealous of the celebration that awaits her when she gets to Heaven.

Jonathan and I have felt such peace with every decision we have made over the past 11 days. Discontinuing chemo and therapy was a hard but the right choice. She was full of poison for no good reason. We also decided to get a post death tumor biopsy so that Sophie’s tissue might further Aggressive T-Cell research and treatment for other kids one day. We are also hopeful that we’ll be able to find out what caused her cancer and why it was so awful and aggressive. Finally, we know moving back to Children’s was 100% the BEST decision. We instantly were surrounded by nurses and doctors hugging and loving on us-that has continued each day we’ve been here. They love us and Sophie SO MUCH and that’s why we came back here. They even threw us a little New Year’s Eve party last night with decorations and snacks. Truly, this hospital is full of the hands and feet of Jesus. Our lives wouldn’t be the same without them. We look forward to one day being able to come back here and to give back to the family that has given so much to us.

As far as how we are doing…..

This is impossible, horrible, and devastating, yet it’s also sweet, fulfilling, and oh so precious. We’ve had sweet moments as our little family of 3. Jonathan and I have told her infinitely how much she’s loved and how proud we are of her for being so brave and strong. We’ve told her that Jesus and her older sibling are waiting for her and that she has lots of relatives and sweet little friends ready to meet her. We’ve sung all of our favorite silly songs and recounted sweet memories of our time as a family. We’ve also told her that we will take care of each other and she doesn’t have to worry about us. They’ve been some of the sweetest moments of my life with the 2 people I love the most in this world. I won the absolute lottery with them both. My life will be so empty without her but will still be so full with Jonathan. I’m so thankful we’ve been able to grow together instead of apart through this.

A lot of that is in huge part to our families. Without them, we’d have fallen apart months ago. We have truly been experiencing Immanuel, God with us, in this hospital room over the past 11 days. We have cried, remembered, prayed, laughed, sang, and above all-we have WORSHIPPED our good Father. We have praised and thanked Him for Sophie’s life and for His complete plan for her life and even for her death. We believe He is and will continue to use her in a mighty way. We will never understand and it will never stop hurting but, we take comfort knowing she will be perfect and complete and that His plan is perfect and complete for us all.

Sophie is not in pain and is on oxygen that is keeping her from struggling to breathe even though her oxygen levels are slowly dropping. She is on pain medicine and is very comfortably sleeping. As soon as she’s ready to let go, we know Jesus is waiting with excitement and open arms for her. Until then, we’ll keep loving and kissing on our brave girl.

Please pray for our time. Pray for more sweet time as a family of 3 as we help walk her Home. Pray that Sophie would remain pain free and sleeping comfortably and that when her time comes, that she won’t suffer but will skip peacefully into the arms of her Heavenly Father.

Thank you for walking this with us.

The very worst day.

It is with absolute shock and shattered hearts that we share this update. Sophie’s scans showed that her Lymphoma has returned and has spread. It’s in her spinal fluid, bone marrow, all in her chest, and there’s now tumor invading her heart muscles. It very obviously does not respond to chemo and it’s too aggressive for her little body. It would’ve almost certainly come back had we done transplant a month ago so we made the right call not putting her through that.

We have no idea how long she has-it could be days, a week, a few weeks…we have no way to know. We do know that she’s currently stable and comfortable and that’s what matters. We will not be putting anymore poison in her body to make her feel worse and suffer. Chemo is no longer an option and we just can’t keep making her feel like crap for no reason. We want what time she has left to be comfortable and surrounded by love even if that means her time is a bit shorter. She has been so brave and strong but this is her body telling us that she can’t do it anymore. We are getting our complete healing, just not in the way that we wanted here on earth.

Please know that we cherish each of you and are so incredibly humbled by your love over the last 7 months. We do ask that everyone please respect our decisions and our need to be a family for what little time we have left together.

Please keep praying for our miracle.

God is still good and He’s still Bigger.

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.