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. 

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. 

What’s Speaking to Me Wednesday: Ephesians 3:20

Once again, it’s technically Thursday but, I’ve been reading Ephesians 3 throughout the day so, it counts. 

So yesterday was Halloween and I really didn’t think it would matter to me. We haven’t made a big deal out of Halloween for the last 2 years of Sophie’s life so, why would this year be any different? Her first Halloween was spent at home with an ear infection and a ‘1st Halloween’ shirt and last year I think we put her in her Snow White onesie for my school Fall Festival but that was about it. This year, she was hooked up to her Methotrexate (chemo) infusion all day, had therapies, and was sleepy…a pretty standard day here in cancer world. The nurses were all wearing Troll hair wigs which was hilarious and downstairs there was a huge Halloween hoopla that I only know about because our nurse mentioned it. I had a crocheted Princess Poppy wig from Trolls that a sweet friend sent us so, I put it on Soph and snapped a picture just for Halloween posterity. Other than that, it was just another day for us. It wasn’t until I got to Ronald McDonald House yesterday afternoon that the sadness hit me. I felt sad that Soph was missing out on yet another milestone that all the other ‘normal’ kids get to have. I was sad that my Facebook was full of precious babies in costume onesies, toddlers running around as Elsa and Moana, and families at fall festivals and pumpkin patches. My husband even went over to see our nieces and nephew all dressed up before they headed out to Trick-or-Treat. My family was in 3 different places yesterday-Soph at the hospital getting chemo, me at RMH sleeping off exhaustion, and Jonathan at work then home all alone without his girls. 

Just another day. 

I will freely admit that I had a bit of a pity party thinking about what we are missing during all of this and how much I miss my ‘normal’ life with my sweet little family of 3 at home together. I sat in a hot bath tub with a bath bomb and Netflix on the iPad propped up on the top of the toilet by the tub and had a nice cry. That’s a pretty standard spot for me to be if I’m at RMH. After I dried it up and got dressed, I pulled out my little box of index cards that I’ve been writing scriptures on. I eventually want to put my control freak all over it and color coordinate the cards by topic or book of the Bible but, that has yet to happen. For now, I just have 3 sections- blank cards, cards with just the heading, and cards with the full scripture written out. I like to grab one that’s already written on when I’m feeling sad or overwhelmed and it’s usually a good wake up call to lean on Jesus and not myself. So that’s what I did-I grabbed a card and read it. It was:

Ephesians 3:16 -that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being (ESV translation) 

Talk about a wake up call huh? ‘Strengthened with power through his spirit.’ I get chills just reading that. He doesn’t just send us some random help when we ask for it. He’s not sending a third party to help us on his behalf. He send us HIS OWN SPIRIT-part of himself-not just to comfort us in times of need but, to strengthen us with power. That’s the Holy Spirit y’all! The Creator and King of all things on earth and in heaven thinks you are important enough that He sends himself through the Spirit to strengthen you when you need it. Thank you Lord for that. -Just stop reading and say thank you with me here! 

I read that verse, mustered out a tired and weary prayer, took a Benedryl for my sinus headache, then went to sleep with a prison documentary on in the background-I’m weird, I know. So today, I slept in-thank you benedryl- and got myself back up to the hospital to face another day. All morning I had Ephesians on my mind so while Sophie napped today I decided to read the rest of the chapter. All of chapter 3 is great but, verses 14-21 are particularly encouraging. It’s subtitled the ‘Prayer for Spiritual Strength’ for a reason. Verse 20 is what caught my eye the most and what has been speaking to me all evening. Here’s a few of the translations that I really dug into…

Ephesians 3:20- 

-Now to Him who is able to do far more abundantly than all we ask or think according to the power at work within us. (ESV) 

– Now to Him who is able to do immeasurably more than all we ask or think according to his power that is at work within us. (NIV)

-Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. (NLT) 

Basic translation for all of those= GOD IS BIGGER! He’s bigger than anything we could ever ask or even think of asking for. He can do immeasurably more, far more abundantly, and infinitely more. 

Immeasurable. Abundant. Infinite. More. 

Those words all mean great things, big, powerful words. And even those words don’t do justice the full measure of God’s ‘bigness’. That same power that healed the blind and afflicted, multiplied loaves and fishes, and raised Jesus from the dead to sit at the right hand of the Father-that power– is also at work within those that put faith in Him. That power in us- can accomplish the great and mighty works He has set out before us. It can accomplish MORE than we can ask or think of. He’s good. And He is bigger. He’s bigger than cancer. He’s bigger that missing milestones and normalcy. He’s bigger than the worry that plagues our broken human hearts. He’s bigger. We just have to trust in that and have big faith in a Big God. 

10/30 Update-It’s a BIG week! 

Let me start with a huge THANK YOU to every person that had a part in Sophie’s 5K on Saturday! Whether you volunteered, participated, donated to the run, bought cards for the fundraiser, etc. we truly appreciate everyone that set time aside for us! Almost $6,000 was raised for Sophie’s bills and we are so blown away by that-that’s huge for us, so-thank you thank you! If anyone else would like to donate towards our bills, you can click the GoFundMe link on the menu in the top left corner of this webpage. We appreciate any and every bit of help. 

Sophie had an uneventful weekend. She’s had a few throw ups and blow outs but, overall her tummy seems to be settling down and accepting the G-Button quite well. Her incision sites still look great-no swelling or redness. She continues to be fever free and has been working hard in all of her therapies! We have started trying to let her drink small spoonfuls of water and she is doing pretty well with that. She’s also been very active and smiley and trying so hard to make sounds! ‘Ma’ is her sound of choice right now and I’m claiming credit that she’s trying to say Mama. That may not be the case buuuuuut-I carried her for 9 months and was in 13 hours of labor so I get to claim that she’s trying to say Mama. Haha! 

Like I said, this is a BIG big week for our Spartan Baby. Since she’s been doing so well and all of her blood work and urine numbers are looking great-it was decided that she can start chemo a day early. That seems small but it gets us one day closer to transplant! She’ll get her *hopefully* final dose of Methotrexate tonight and it will run for 24 hours. Then we will hang out here in the hospital until Friday. Once the chemo leaves her urine and as long as her symptoms are managed, we’ll get one final PET Scan and Bone Marrow Biopsy Friday morning. Well, not FINAL forever but, final for now. Then we will probably be headed back to our inpatient rehab facility until we get our transfer to Cook’s scheduled-it looks like we might be headed there on the 13th but that’s tentative. 

These tests are huge. She has to still be in remission in order for us to still be eligible for transplant. I don’t know what it looks like if she’s not in remission and frankly I don’t want to know. On paper, she should be in remission-her blood work has all been in ‘normal’ ranges and she’s had no fevers or complications of any kind. We will hopefully get preliminary results Friday afternoon to at least hopefully take some of the stress off of our shoulders. I have a love/hate relationship with Scan day. I HATE the anxiety it brings us all, I HATE sedating her for 3+ hours, I HATE that she has to get intubated, I HATE waiting for results….I HATE all of it. All of it except that fact that Scan day gives us answers. Scan day is a necessary evil but, having scan days means she’s still around to be scanned. So as far as I’m concerned, I’ll set up camp in waiting rooms and pray through scans for the rest of my life-and that’s ok. It’s mostly a hate relationship but, answers are always good, even if we don’t always like them. 


Please be praying for all of us this week! 

1. Thank you Lord for a happier Soph that’s feeling much better! Thank you for less tummy troubles, no fevers, and no complications! Thank you for PROGRESS!!!

2. Pray for continued protection from infection, more side effects from chemo, vomiting, and any complication. 

3. Pray for scans-BIG powerful prayers-set an alarm for 9:00 on Friday morning to pray for NO CANCER, no complications from sedation, and again for NO CANCER! 

4. Please continue to pray for complete and forever restoration for Sophie. We serene a BIG and mighty God and the same power that Jesus used here’d on earth lives in those that put their faith in Him. I fully believe that mass prayer is heard. She will be fully restored-no cancer and no brain damage or deficits-forever. It won’t be fast but, it’ll all come back.

5. Pray for our SCANxiety. That hate side of our Scan relationship is really hard. 

Perspective 

The past 7 days have been hard. We transferred facilities again for chemo. Sophie has thrown up pretty much every day for 7 days, a couple of those days had multiple throw ups. We’ve dealt with Neuro consultations and the discouraging meeting after the MRI. We’ve seen our friends get admitted, get chemo, then leave while we’re still stuck in the same place. It’s just been a rough week. 

Then, yesterday happened. 

Have you ever just distinctly felt the presence of God in the room with you? I’ve felt it a lot in church and worship settings but, until recently, I don’t know if I’ve tangibly felt the Holy Spirit in the room. Maybe I have and I’m just so consumed with hospital life that I’ve blocked out anything before May 18, 2017…which is possible. 

Yesterday started like any other day. I slept at Ronald McDonald House while my mom took the hospital shift. The night was uneventful and Soph actually got a full night’s sleep with no throwing up. She had a great OT session right before I got there and was in the middle of PT when I walked in. They were laying on her mat on the floor stretching and working on flexibility. Sara (our PT) stood Sophie up just to work on her bearing weight on her feet since it’s been so long since she’s stood or walked. Usually, Sophie just kind of flops around and Sara really has to support her. Yesterday though, Soph looked right at me and started lifting her feet trying to walk. She’s never done that in therapy-ever. Not once has she initiated leg movement that resembled walking. We thought it was a fluke so, Sara backed her up, reset her feet on the ground to get her to stand, and she took off trying to walk again! She cried out of frustrtation and I cried out of joy and also frustration for her. 

That would’ve been enough for one day but, my Soph is an overachiever. She took a nap and woke up at 3:00 and literally from then until about 11:00… she did not sit still. She wanted up to practice sitting, to sit on the edge of the bed, to stretch and practice rolling, to lay on her tummy and work on her neck control, and crunches…..I swear she did 500 crunches trying to sit up! It didn’t stop. Eventually I just layed her head in my lap and let her go on with her crunches. At one point she was able to crunch herself up off of my lap and sat up ALL BY HERSELF! I quickly caught her head to keep her from falling but, she got up there all alone. Another huge moment. 

We also finally were able to talk to our primary oncologist. She shed a MUCH more positive light on the MRI results. She agrees that there’s some significant damage on the scans right now. But, she feels that if the damage was the kind of serious permanent damage that that suggests–then Soph just simply wouldn’t be making any progress. She would just continue to lay in that bed all day everyday without showing any interest in the tv, wouldn’t react to us talking to her, and she wouldn’t track people moving around. She would just kind of exist. The fact that she’s made huge progress in just 2 months proves that she’s fighting and that her brain can find new ways to help her get it back. She still has a lot of developing to do and she’s stubborn so that helps. We still don’t know what that means or if she’ll get it all back but-we feel so much better after talking to our doctor. We also now have a baseline MRI that we can compare her further scans to. I can’t wait to see how the Lord will work on her next scan. 

Its so easy for us to get trapped in a place of feeling sorry for her and for ourselves when we think about the long list of what she can’t do. We see our friends with kids the same age and younger than Sophie living their normal lives, celebrating milestones, and being happy families. We watch everyone else seem to pass us by while we are stuck in pause. Every kid we see in public makes us sad. Everytime we hear ‘Can’t Stop the Feeling’ it makes us sad. Facebook makes us sad. Being at our apartment without her makes us sad. Being apart makes us sad. Everyday something at some point makes us sad. It’s SO easy to get trapped there and drown in it. Even the most positive person couldn’t help but go to that place. 


That’s when it’s the most important to remember how far she’s come. 

Two months ago she was just a lump in the bed. I don’t honestly have many pictures or videos from then because she was just-not there. There was no spark in her eyes, she slept 22 hours a day, and she was so weak. We had to position every part of her body for her-from her head to her feet. There was zero independent movement. I had an alarm set on my phone to roll her onto alternating sides every couple of hours so she wouldn’t get bedsores. She was throwing up constantly and couldn’t even lift or turn her head to keep herself from choking. She was covered in drool 24/7 because she was too weak to close her mouth and swallow. We were getting no sleep out of fear that she’d choke on vomit or spit and stop breathing while we slept and we wouldn’t hear her because her voice was just not there-no sounds came out. She cried but, no sound. No smiles. No eye contact. Nothing. I thought over and over that this treatment and lack of activity would kill her before the cancer could. I was terrified that she’d catch something that would turn into an infection that would land us back in ICU to die. We had 2 people in the room at night because being there alone at night was just terrifying and lonely. We had no idea if chemo was working or if she was dying. Not many people know that it was that bad. I posted updates but, it’s hard to put that kind of horrible into words when it’s happening. I think I did myself a disservice though, because my friends and other family just didn’t seem to get why leaving her was so hard and why the exhaustion was so intense. It’s because they didn’t know how bad it was. I felt so alone. 


Fast forward 2 months-she’s still nowhere near 100%. I think 25% would be optimistic but, it’s a lot better than 0%. Sophie has shown us all just how much of a fighter she is. First she kicked her cancer into remission then, she started kicking therapy. As of today, she has almost complete head control, she keeps her mouth closed and she swallows her spit. Speech is working on tiny bits of water now and she does well with that. She can move all 4 limbs with no pain and tolerates stretching and activities with them. She tolerates sitting while supported for hours if we let her and pretty much hates being still. She’ll roll from her side to her back and is really trying to roll from her tummy to her back. She tries to grip things and play. Most importantly, her smile and personality are back. She watches her favorite shows and laughs at her favorite books and iPad videos. She watches everyone that enters the room and listens when we talk to her. We get the occasional ‘No’ out of her and she nods her head for ‘yes’. There’s a lot more little things too. She doesn’t do each of these things all day everyday but, at some point everyday we see small progress. So how can we not jump up and down and praise the Lord for this kind of progress in 2 months? How can we not be ecstatic to see how much progress she’ll make in another 2 months? 

Yes, it’s sad when we compare it to our friends and family living their normal lives. But I believe with my whole soul that-we’ll get our normal back! It may take us 4 years but, it’s coming back! Now, is our fight with cancer over? No. Will she lose some ground during transplant? Probably a lot of ground. Are there still a lot of bad and scary days ahead of us? Definitely. But what’s important is, she’s showing us now that she can make progress, she can beat the expectations set before her. And even more important—-The Lord is showing us that He’s Faithful, He’s good, and He’s here with us. So, we’ll keep doing what we’ve done for 5 months and 6 days….. we’ll fight this cancer with everything in us. Then we’ll regroup and hit therapy with whatever we have left! I just don’t believe the Lord is bringing us through this for no reason. This will be a huge testament to the power of prayer and faith. Sophie is destined for greatness and I just flat can’t wait to see where she is in 2 more months and beyond! 

I have a challenge for anyone reading this. Think of something in your life that is challenging. Just because your kid doesn’t have cancer-your problems are still important. So think of one thing that’s challenging you and find SOMETHING to be thankful for about that challenge. Then write it down. If you can think of more than one thing-write them all down. As time goes on, try to write anything you can be thankful for even if it’s as simple as-I’m thankful I woke up this morning. Some days that may be all you can get out but, try to write at least one thing a day and then….just see what happens. Notice how your list changes over time and how, maybe that first challenging thing works itself out. Just humor me and do it 🙂 I’d love to hear how it goes if you’d like to share with me! 

‘What’s speaking to me’ Wednesday 

So technically, it’s Thursday but, I started writing this when it was still Wednesday so I’m going with it. One of the reasons I wanted to start the blog was inspired by the idea that I could take a list of things that have struck a chord in my heart throughout the week and share them on Wednesdays. It doesn’t necessarily pertain to Sophie but, part of the mission of this site is to share what the Lord is doing in me in the midst of Cancer so Here goes…

  1. Christy Nockels 
  • I have recently become OBSESSED with all things Christy Nockels. I heard her sing and speak at a women’s event a few weeks ago and I just fell in love with how absolutely precious she is! She has a heart for sharing Jesus through every aspect of her life and its infectious! I’m just enamoured. 
  • Christy has a podcast that is just….real. It’s called The Glorious in the Mundane and I have found so many little nuggets of truth in her posts! She shares real stories that have happened to her and how she’s applied the Gospel to them. I’ve found myself going back to Season One (it’s currently on season two) and I’ve been listening from the beginning. In Season One, Christy spends time with ‘famous’ believers like Ann Voscamp, Bob Goff, Matt Redman, and my personal favorite, Beth Moore. Today I was listening to the episode with Beth Moore and she said something that just stuck in my head. She said ‘Don’t just do what you think you’re good at.’ She was talking about the talents that God has placed inside of each of us and how we will give an account for how we used everything He gave us one day when we are called home. I think the point there is that we won’t know what we’ve been gifted with or how God will use us if we don’t put ourselves out there even when it makes us uncomfortable. In 1Peter 4:10, we are called to serve others with the gifts the Lord has blessed us with. Don’t know what your talent is? Ask God to reveal it to you! Just ONE example of how this incredible podcast has made me think.
  • Christy also has a new CD out-I said I was obsessed. I’m obviously in a very trying season with my daughter’s cancer fight. I find myself crying over any and every sweet moment that I experience. Let’s just say I sob during this entire CD. Be Held: Lullabies for the Beloved is one of the sweetest and most inspired compilations of songs. Christy very obviously put her heart and souls into this album. She even recorded an entire track of her speaking powerful scripture out loud, then she had it woven into every song on the CD to sound like a violin in the background. So when you listen to these songs, you’re literally having scripture spoken over you. I just find that incredibly powerful. I’ve been playing the entire CD on shuffle at night in the hospital over Sophie’s bed. There’s one song entitles ‘Head to Toe (The Armor of God Song’ -real,life ugly cry sobs happen when I play this song for my daughter. The lullabies aren’t just for your children either. It’s so important that we, especially women, take time to listen to the truths of who God says we are. We are beloved, valued, worthy, pure, loved, important…we are literally worth sacrificing Jesus for. 


2. Priscilla Shirer 

  • I have A LOT of downtime on my hands right now and I spend A LOT of time in my car driving to and from Dallas twice a week. I’ve been on a podcast kick lately and in addition to my Christy Nockels obsession, I also looooove me some Priscilla Shirer. If you don’t know who that is, ‘you gonna learn today!’ She is the daughter of the Dallas Cowboys chaplain and Pastor of the massive Oak Cliff Bible Fellowship in Dallas, Tony Evans. She was in the movie War Room and has authored some incredible books and Bible Studies! 
  • Priscilla’s podcast is called Going Beyond and it’s actually only 7 episodes entitled Resolutions for Women and it’s from 2014. However, it’s still relevant 3 years later and so so good! Friday, on my way home from Dallas, I listened to one titled Surprisingly Satisfied and it spoke directly to my heart. In fact, it spoke to me so much-I’m working on a post specifically about it. Stay tuned for that. To just give you a preview of what inspired me- in the episode she talks about how we shouldn’t be so focused on being so ready for seasons of our lives to end,  even the hard ones, because we will most definitely miss the blessings and the lessons God has for us in this specific time. So good y’all, SO GOOD. Stay tuned for my take on that in more detail soon. 

3. Ann Voscamp on Facebook 

  • Listen. This wasn’t supposed to be just a list of women that I admire but, I guess it’s turning into that because each of them has posted or shared something this week that has touched my heart. Ann Voscamp posts something on her Facebook Page literally everyday that hits me right between the eyeballs. Today was no different. It doesn’t even need an explanation….I’ll just share the graphic she posted…. 

 

If you aren’t following Ann on Facebook-you are missing out on a great opportunity to have some light shined on your day. It’s not always warm and fuzzy feel good light. Some days it’s hatch revealing light that shines one a dark place in your heart and brings it out into the open. I would LOVE to be able to write like that. 

4. Last but not least….Beyoncé 

  • Ok so Beyoncé didn’t technically do anything that spoke to me this week. I mean don’t get me wrong, she’s fabulous but, we lead very different lives. It was a saying I saw this week that caught my attention: You have as many hours in the day as Beyoncé! 
  •  Let’s be honest- Beyoncé can afford waaaay more hours in her day than I can but, the idea behind this is what caught my eye and started my wheels turning. 
  • Think about the women that influence you or have influenced you in the past. I have a great list started above of women that have influenced me just in the last few days! Beth Moore, Ann Voscamp, Christy Nockels, Priscilla Shirer…I could add more obviously but, the point is there are hundreds-if not thousands of influential women all around us. We don’t have to look on E! or the cover of a magazine to find them. There are great women in our churches and in our families, in your office, or sitting next to you at soccer practice. The GREAT thing about every single one of those women….we all have 24 hours in a day. What we do with these hours is 100% up to us. The enemy seeks to make us think that we are too busy to be influential. We are too tired to make a difference. He wants us to feel that way…and we let him win all the time. 
  • That’s where Jesus came in and still comes in for us every single day. Exodus 14:14 tells us that The Lord will fight for [us]; [we] need only to be still. You don’t have to be a blogger, author, renowned public speaker, or ordained theologian to be influential. You don’t have to have an hour of complete silence in your kitchen for quiet time. You don’t have to add to your ever growing to do list. You just have to be still for a moment. Do you drive to work? Pray or listen to a podcast. Do you shower? Pray-spend time with Jesus. Do you spend hours scrolling your Facebook? Put it down for a few of those minutes and start reading a Psalm a day. Those little moments start to build big things in your heart and eventually it just fits into your already all consuming schedule. You don’t have to be Beyoncé, you just have to be willing to spend a few minutes a day talking to the One that thinks you are worth more than gold. That hole that tells you you’re too tired and too busy can’t be filled with anything but Him. Let Him into that place and watch what starts happening to your busy and tired days. 

This turned into a post about super awesome women and I’m so glad it did! These women have ministered to me this week and I don’t know any of them in ‘real life’. Technology has its faults but, bringing believers together in many many ways is one really great perk! I hope you found some encouragement here today and I TRULY hope you’ll follow some of the links I posted and let these amazing women speak truth and life into your life too. Make time for yourself- you’re important, you’re valuable, and you’re worth every second. 

Have a great week! 

Shelby