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.

Update from Limbo 12/3/17

My heart hasn’t really been into updates lately. Honestly, we’ve just been kind of floating through the last few weeks since we got to Cook’s and they changed the plan on us. To recap: we are not currently preparing for a stem cell transplant because Sophie’s neurological deficits are too severe to make transplant safe. She is on the NeuroRehab floor at Cook’s getting PT, OT, and speech daily in the hopes that she will get stronger and have more motor control in order for transplant to be an option. We have no timeline for when/if that’ll ever happen. She’s also back on daily and weekly chemo to keep her in remission because the aggressiveness of her cancer is such that stopping chemo all together would almost certainly result in relapse and basically, the end. Transplant is our only long term option. Limbo. Stuck in between cancer and transplant while also stuck between massive neurological damage and recovery. It’s not a fun place to be but, more on that another time.

To update, there’s not a whole lot that’s new. Sophie has adjusted to rehab here quite well. She no longer cries when she goes to therapy and is actually calm and compliant through 90-95% of her sessions. We don’t get to watch her here because they take her to the ‘Low Stim Gym’-basically a room with no windows and no other kids or therapists so Sophie doesn’t get overwhelmed or over stimulated and can just focus on herself and her therapist. According to the people working with her, that has been very helpful. Some other good things are that her G-Button is finally almost completely healed! We are still cleaning it thoroughly twice a day and putting antibiotic cream on it but, it’s barely red at all now and she doesn’t seem as bothered by it when we touch it. Overall her tummy issues have been getting better as we’ve adjusted and changed some of her medications-much less nasty diapers and very little throwing up. She’s getting lots of nutrition in which is fabulous.

From a cancer standpoint, everything is ‘ok’. We have no way of knowing for 100% certain without doing a PET Scan that she’s still cancer free but, she’s getting her blood checked twice a week and her numbers have been right where they should be each time so we all consider that a win. Basically putting her (and us) through scans isn’t necessary if her blood work continues to look ‘normal’-as normal as it can look in Soph’s case. Her ANC (immune system) counts are also high so her infection risk is low which is HUGE as we are in cold and flu Season! We also are really enjoying being in Ft Worth. We miss our 6th and 7th floor friends and nurses at Children’s A LOT. I miss having familiar faces each day that already know Sophie and us. We had some truly special relationships there. But we also truly feel like Cook’s is the perfect place for Sophie. She’s getting full inpatient hospital services while also getting extensive rehab. She has oncology nurses checking on her every evening when she gets chemo, our oncology team of doctors comes to see us daily, her neurology team comes to see us daily, every single member of her team is in the loop and communicating 24/7. If there’s any question at all, her nurse calls the oncology floor directly. We even have a floor pharmacist who just works in this floor and stays on top of making sure she’s getting the type and dosing of meds that she needs while also specifically looking at other meds and supplements that could help her. It really is the perfect situation for her unique needs.

We’ve also been enjoying the Cook’s campus, it’s gorgeous! The grounds are absolutely Christmas crack overloaded. I thought that would bother me being surrounded by Christmas but, it’s actually comforting. I even bought a tiny Target tree for our room. We are able to take Sophie outside as often as we want in her stroller chair with her mask on since her counts are so high and it’s the best kart if our days! She is fully relaxed on our walks and I’m pretty sure she’d rather us just keep on walking for hours. We try to take one in the afternoon then a second one when it’s getting dark so she can see the THOUSANDS of lights that light up the courtyards here. It’s incredible. There’s even a Frozen display with Olaf and Sven! We also get a little extra parent exercise here because parking is free and Ronald McDonald is less than a mile away so, we get to take a nice walk in the fresh air each day which has been really nice. I know it’s December and it should be cold but, we’ve SO enjoyed this weather! It makes for nice walks for us and it’s not too cold for Sophie to be outside.

Now of course there’s never just a big list of good news. All of the above is good stuff but, the less than good things have been overshadowing the good over the past week. It’s been really hard for us adjusting to this ‘make it up as we go’ plan, which is basically not a plan at all. Sophie’s case is so unique and rare that her doctors haven’t ever dealt with anyone like her before-yay. Our kid is the test subject and it’s zero fun knowing that. That also means that a lot of her symptoms, there just is not explanation for because they flat out don’t know what’s going on inside of her and what’s causing it. Pinpointing things has been impossible. Her jerky spasms have gotten out of control. She basically is only still when she sleeps and up until the last few days, she was only sleeping 2-4 hours in a 24 hour period. That went on for 5 days. She was exhausted, I was exhausted, no one had any answers. There was a lot of crying and staring at the wall. Last week wasn’t fun. I’m covered from shoulder to knee in bruises from being hit and kicked by a rogue foot or elbow. She gets so upset when anyone comes in to mess with her that we have to hold her legs and arms down so the nurses can give her meds or check vitals. I’ve been beat up by my 2 year old. Not really what I signed up for. It’s heart breaking. She can’t control it and you can see it all over her face that she doesn’t understand why she can’t stop. I can’t even comfort her because she just wants to be left alone. We’ve tried upping her nerve medication, adding another pain med, taking off a couple of meds that can exacerbate stomach issues, and most recently they added a seizure medication just to see if it would help her relax. That has helped a little but, not much. It’s exhausting. And as Forrest Gump once said, “That’s all I have to say about that,”…..for now.

Thank you for continuing to pray for us, we need it.

1. Yay for small things that are good. Normal blood work, less tummy issues, healing G-Button, walks outside, Christmas lights, and a great team.

2. Pray for the jerks and neurological symptoms to just stop. Miraculous and FAST healing. Why not? It could happen. It need to just stop.

3. Continued protection from cancer. She is healed forever and transplant WILL be the final straw in her cure.

4. Huge, baffling, miraculous progress in therapy. We need swallowing, coughing, sitting up, and more motor control but, we’ll take walking talking and running too! Complete healing that could only be Jesus.

5. Protection for all of us during cold season!

6. Encouragement and support during the holidays, strength in our marriage and relationships, rest and refueling from really long and hard days at the hospital.

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. 

update 11/10

Y’all. On most days I am a fairly laid back and patient person. Admittedly, I get flustered easily but, then I get over it and deal with it quickly. 

Today. Is not one of those days. 

As you know, we got moved back over to OCH rehab last Friday. It’s been a HUUUUGE ordeal for 2 months with us going back and forth for seemingly no reason other than because insurance wants us to move EVEN though Soph is a fragile cancer patient. I’ve thought all along that moving  her so much is not good for her but, that’s neither here nor there-nothing I can do about it now. And let me add that we LOVED her therapists over at OCH! Zach, Laura, and Lindsey were incredible with Sophie and would get her to make HUGE progress if that had the time. But right now-we can’t just focus on therapy!! We still have to tackle transplant! After tha I’ll be happy to live in a rehab facility as long as necessary but, for now…she’s still a cancer patient! [[Stepping off soapbox]]

It’s just hugely frustrating to feel like insurance companies see your most beloved and cherished baby as a name on a piece of paper and not a 2 year old that shouldn’t be moved around once a week. 

But I’m not bitter. 🙂 AND my child is cancer free so let’s just hold onto that positivity! 

Ok-so now that I’m done ranting-here’s an update on Soph: 

Ever since Monday evening she has been having these very odd pain episodes. She’ll wake up out of a dead sleep crying out in pain. The pain lasts about 30 seconds then she calms down and is fine. We also started noticing some redness, swelling, tenderness, and oozing at her G Button suture sites. So the combination of all of that prompted us loading up in an ambulance and heading back to Children’s. 

Woundcare came by and examined her suture sites. It looks like just a topical skin infection of the suture sites. Nothing is wrong with her G-Button praise the Lord! She is on IV antibiotics and getting antibiotic cream put on the site 3 times a day. She hasn’t had any fever which is good-we caught it early and it should clear up in a few days.

As for the pain, all of her blood and urine cultures have come back normal. All of her blood counts are great. Her white cells are actually performing like they are SUPPOSED to finally! On paper she’s fine. So for now, she will get the IV antibiotics, fluids, and pain meds as needed and we’ll see how she is over the weekend. We should *hopefully* be loading up and heading to Cook’s Monday or Tuesday as long as her belly looks better. 

So-nothing crazy emergent but, still needing prayers. 

1. Pray the antibiotics work quickly on her G-Button! 

2. Pray that whatever this pain is that it just goes away or we figure out what it is! 

3. Pray that our trip to Cook’s is still on for Monday or Tuesday-we just need to get to Cook’s!!! 

4. Thank you Lord that we at least know none of this is her cancer! That we know she’s cancer free and that it’s one less thing on the list! 

5. Pray for her body to be protected and sustained as we go into transplant! 

6. Continue to pray that she stays cancer free forever and that her nerve and brain damage gets better every day! 

Photo cred: Jacy Watson Photography