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. 

God isn’t only good on good days. 

In light of the horrible…just horrible church shooting in Sutherland Springs on Sunday, I wanted to share what’s been on my heart about God still being good on horrible days. 

I don’t usually take on heavily politicized or heated topics and I still don’t intend to. I’m not here to debate about gun control, racism, our government or the many other issues currently plaguing our great nation. *Cough-healthcare* Now don’t get me wrong, I’m not discrediting those issues-they are all extremely important and very presently relevant. However, I don’t make a habit of ranting or rambling my opinions publicly on those types of things because frankly and honestly-I don’t feel I’m informed enough to make intelligent arguments or points about my opinions. I promised full transparency and in honor of real talk here’s a confession-I don’t watch the news-at all. I’m in the cancer bubble 24/7 and while I’m aware of what’s transpiring in our country…. quite frankly….it takes a back burner to caring for my daughter. Some may say I should be extra informed because of her and maybe that’s true but, I’m not and I’m ok with it for now. 

Now that the disclaimer is out of the way-back on topic. 

Yesterday, for us, was a great day. Sophie was officially cleared as cancer free and a part of the enormous weight on my shoulders was lifted. However, for an entire town and for subsequently hundreds of other towns with family members affected by Sunday’s shooting-there weren’t a lot of good days today. One family lost 8 members. EIGHT. The stand in pastor, his wife, their pregnant daughter in law, and 3 of her 5 children. That’s not just hard-it’s crushingly unbearable. 26 lives ended violently and terrifyingly. An 18 month old was shot and killed. Read that again-it was a real sentence. 20 other people injured-left to witness the horror then wonder why they were spared. All of this took place in the place where most of us feel the most safe-in the church. You can’t just gloss over that with a big pink ‘religious’ bow-it’s real life-broken world-horror. 


There’s a lot-I mean A LOT of terrible things happening all over the world. Just in my little world of family and friends there’s cancer, so much cancer and friends who might or probably will lose their babies. There’s Alzheimer’s and epilepsy, brain bleeds, infertility, and chronic pain. There’s family members remodeling their entire home from Hurricane Harvey and countless small yet equally important hurts. In the broader spectrum there’s war, hunger, genocide, rape, murder, rampant idolatry and selfishness. I could obviously go on but, we all know how horrible the world is. 

That’s because it’s the world. It’s a broken-desolate place where we are all alone unable to redeem it for ourselves. Sin and evil have earthly reign in the brokenness. I know it seems like it’s happening more than ever right now and that Revelation is upon us. That may be true, or it could be that social media and every type of news possible is at our fingertips and in our faces 24/7/365 so we are much more glaringly aware of what’s always been going on… I’m not sure which it is. 

But God.  

The Bible tells us that God didn’t create evil. We can’t blame Him for the evil in this world-it’s not from him. Satan caused evil when he turned from God and was cast out of heaven to earth. Revelation 12:7-12 calls him out for who he is, ‘Satan, who deceives the world.’ He’s real. So is evil. Fear, guilt, hate, selfishness, envy, all are from him. 

So the questions all still remain. Why does God ‘let’ bad things happen? Where is God when the pregnant woman and her 3 children are shot and killed? Why does God ‘allow’ cancer? I don’t have the answers to those questions. I’m far from a theologian or a bible expert…in fact I’m flat terrible at basic scripture memorization. I could probably-maybe- call up 5 or 6 that I know by heart. It’s not my talent. So I can’t just call up applicable scripture at any given moment. However, the magic of the internet is always there when you need to bring a verse up and tonight I did just that. 

‘Be of sober spirit, be on the alert. Your adversary, the devil, prowls about like a roaring lion, seeking someone to devour. But resist him, firm in your faith, knowing that the same experiences of suffering are being accomplished by your brethren who are in the world. And after you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect, confirm, strengthen and establish you (1 Peter 5:8-10).’ 

Bad things are going to happen to us while we are in this broken world until Jesus comes back and takes us home. That’s just how it is. The enemy is actively after us, at all times in big and small ways. We aren’t meant to understand that I don’t think. It falls to us to combat the darkness with the light. In the midst of the terrible-seek the good. We can’t always see God or sense his nearness when tragedy strikes but, He’s here and He’s working in it. I don’t and probably won’t know why 2 year olds get cancer or why a gunman would shoot 46 people in a small town church. I do know very personally however, that in the midst of tragedy and despair that the only way to keep breathing is to look to Him and that, yes, He will use this for good even when you can’t see it yet. That’s where you find strength in the horrible. Where is God in this? He’s right where He always is, in His word, in the love we show to others in their suffering, in the tears and prayers of people flat on their faces crying out for help. That’s where you find Him. 


Now, am I saying that you should go to someone as their tragedy is unfolding and say ‘Don’t worry, your family is dead but, God will redeem this!’ Or ‘Hey it’s ok that your baby has cancer…you’ll be used for a great purpose!’. NOOOOO!!! No! NOOOOO! If you want to be heard, please just don’t. While I believe both of those statements are true….saying that isn’t helpful. At least not at first. Trust me. I’ve lived it. When you’re in the trenches of tragedy and grief that’s just not what your brain wants to hear. You’re still buried under why and how is this happening?! The last thing you want is to think about how you’ll be used at the end of this. Sometimes, even the strongest of believers, don’t even have the words or the desire to pray because it feels like nothing will come out. It feels like anything you pray can’t and won’t get answered because it’s too big. Doubting God in your suffering is normal, it’s human. THAT, my friends, is where the body of Christ comes in. That’s where people step up and step in to say :

“I know you’re life is in shambles and that’s ok-I’m standing in the gap praying the prayers that you can’t get out right now. I’m praying for God to use you and lead you in your tragedy when you don’t even know which way is up. I’m praying for God to reveal the purpose here because while the horrible thing is happening I’m praying that you know God is with you, and He will give you strength to stand against the evil that caused your pain. He will put people in your path to help. And when you can finally pray your prayers-I’ll still be here praying with you for God to move in your heart and use the broken for good.”

Sunday, a horrible thing happened for Sutherland Springs. Horrible things happen everyday everywhere. Yesterday, a great thing happened for my family. That just as easily could’ve been a horrible thing. We could be grieving today that her cancer wasn’t gone-faced with more horrible. But guess what? God would still be good. It would be so hard to see it but, He would still be good. In the good days, He’s good. Even in the horrible-He’s still here. he’s still good. And He’s still BIGGER. 


Note: A friend of a friend is part of the family that lost 8 members and a GoFundMe has been set up for this massive support this family will need.