PET Scans

She was never mine.

The Bible talks extensively about stewardship. It is a concept that our worldly broken hearts have a very hard time reconciling with. What we have in our lives does not belong to us. We are temporary caregivers. We stand in place of the real owner. Much like managers who govern in place of a king. This analogy reminds me of a Lord of the Rings reference when in the movie version of The Return of The King, Lord Denethor, the steward of Gondor refused to acknowledge that the true king had returned to claim his throne. Denethor forgot who the ‘owner’ of his kingdom was.

We don’t own anything here. Everything is God’s and we deserve none of it. This includes our children.

He gives them to us for a short time. Our job while we are here is teach them about the Lord. We teach them to say their prayers and love others as He loves us. We take them to Sunday School and sing ‘Jesus Loves Me;’ and ‘Amazing Grace’ to them as we lay them in bed. We long for them to become adults who want nothing more than to honor the Lord with their whole hearts and lives. We should be raising a generation that will lead others to Christ and serve the Lord as they walk in their calling.

So how then, do we accomplish that when our children die before they reach that adulthood? How am I doing my ‘job’ as a mother if my daughter has died before I could raise her up to be strong and courageous for the Kingdom of God? The answer is-she was never mine to begin with. My job was to care for her for 2 years and 9 months. My job was to battle for her as she fought Childhood Cancer. My job was to hold her as I helped walk her Home to her Heavenly Father. My job now, is to tell her story.

Luke 14:26-27 says, “If anyone comes to me and does not hate his own father and mother and wife and children and brothers and sisters and yes, even his own life, he cannot be my disciple. Whoever does not bear his own cross and come after me cannot be my disciple.”

After losing my daughter, I think I’m beginning to understand what this means. I’ve always thought-Lord you can have my money and my stuff but, I need my family and those important to me. When you’re truly a follower of Christ, you must be willing to give it all to Him-even your children. The scripture says we cannot be a disciple without giving them to Him. That is SO hard for our human brains to comprehend. We seek to be completely in control of our children and their well being. As mothers, we are genetically designed with the instincts to care for and protect our children.Our bodies carry and birth them- they literally come from us yet, they don’t belong to us. It’s not an easy thing to think about. The thought of ‘giving them up’ to the care and authority of someone else is ludicrous. Then you remember, they were never yours to begin with. They have always been and will always be His.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139: 13 & 14

Losing a child is the worst pain imaginable. There are days where I feel like I failed in my mission to protect and care for my daughter. It’s on these days that I lean on the Lord’s promises the most. He loves me and He loves my daughter. He has a plan for my life and He had a plan for hers. God’s Plan for my daughter’s life was that it would only last 2 years and 9 months here with me. His Plan for my life is that I was able to be her mother while she was here and now I get to share her story with the world. Having faith in His greater Plan doesn’t mean that I’m happy about losing my child or that I at all accept or understand why it had to be her. However, believing and resting in the promises that her death is not for nothing and that there will be a day when death is finally defeated brings me comfort and peace.

She is His and so am I.

Originally published on Her View From Home

Cancer: One Year Later

As a mother, you worry about all kinds of things. Is my child hitting milestones? Is she eating the right things? Are we raising her well? Does she have an ear infection? All of the ‘normal’ things that parents think about as they raise their children.

Cancer was never even one of my worries.

Cancer happened to other families. We heard stories and said ‘Oh gosh I can’t even imagine. I don’t know what I would do-I just wouldn’t be able to get out of bed.’ We changed the channel when the St. Jude commercial came on because bald kids made us uncomfortable. We put our change in the ‘Kids Miracle Network’ jars because we hated having change in our pockets. We’d donate $20 to a GoFundMe, signed up for a 5K, and bought some T-shirt’s to support ‘those poor cancer families.’ And then we went about our sweet little sheltered, happy life.

There’s nothing wrong with that life. Until your eyes are opened to just how BIG the world really is.

On May 18, 2017, I went to work-like any other weekday. We had a field trip that day-which is a stressful day for a teacher. I was hot and sweaty and exhausted after a full day of wrangling 24 kiddos, handing out lunches and waters, riding on a school bus (which is horrible), and walking around with a backpack full of first aid, permission slips, inhalers, and sunscreen. I got home to my Sophie-like every other weekday. Her grandmother updated me on her day, said goodbye, and we has our after school home time-like every other day.

Except. Sophie had been hospitalized in March for a weird breathing episode and then diagnosed with asthma a few weeks before and we were monitoring her breathing and doing breathing treatments 3 times a day until we could get her into an allergy doctor. That was stressful but, she handled it like a champ and did her ‘breathings’ with no problems. Heck-half of the time she would fall asleep holding the mask on her face! It was so cute. When it was done, she’d pop up like she had been awake the whole time and shout proudly-ALL DONE!

On this day-she was breathing really hard and I didn’t like it at all. So, I did what most moms do-I called for opinions. I called my precious friend Monday, a nurse and fellow asthma mama and told her my concerns. She advised me to go ahead and do Sophie’s bedtime breathing treatment early and take her to the ER after that for evaluation because, you don’t play around with a 2 year old’s breathing. I called Jonathan and told him to head home for what would probably be a long night. Then I pulled my little love into my lap and started up her treatment. As I’m doing that I decided to call my coworker Toni-another asthma mom-to tell her what was going on and to let her know that I might need to take off the next day-we had track and field day the following day so this was SO not a great time for us to be sick! As I’m on the phone with Toni-my world fell apart. Sophie went limp in my lap and started turning blue. I screamed ‘TONI SHES NOT BREATHING I HAVE TO CALL 911!!!’ And hung up. I’m holding the breathing mask on Sophie with one hand and shakily calling 911 with the other. She-thankfully-came back around quickly but was still very pale and lethargic in my lap. At that exact moment Jonathan walked in, with no clue what was going on. He walks in to us on the floor, Sophie unconscious and me sobbing on the phone. The Lord was very obviously working in him right then because he immediately grabbed the diaper bag, a phone charger, the iPad, and my wallet with insurance cards in it. He even grabbed my shoes because I was barefoot.

The 911 operator stayed on the phone with me until The ambulance arrived and I carried her out, barefoot, with Jonathan right behind us. We got her on the gurney and oxygen on her and she came around very quickly. We took off and Jonathan-bless his heart had to follow us in the truck.

Long story short-we ended up at the Children’s ER with an X-ray of a softball sized tumor in her chest. We were wheeled up to the ICU at 4 in the morning because she couldn’t lay flat. Her bed was propped up to sitting because when she laid flat, she stopped breathing due to the tumor pushing on her airway. Our world was halted.

We started steroid chemo the next day to stop the tumor’s growth.

Cancer. A word no parent should hear.

Most of you know what all transpired from there and I honestly can’t write all of that out right now. But the point is-Childhood Cancer happens more than you think it does. It happens whether you’re rich, poor, white, Black, Hispanic, happy, sad, Old, or young. It’s real. It happens. And you’re not a cancer mom…..until you are.

One year later and I’ve learned way more than I’d ever want to learn.

I’ve learned words and acronyms like Nelarabine, mediastinal mass, NPO, PRN, stomapowder, chemo rash, fungal workup, PET Scan, ANC, platelets, hemoglobin, neutrophils, immunosuppression, Bactrim, neuropathy, isolation, port access, bath wipes, spinal tap-LP, intrathecal chemo, vincristine, SCU, neuro-rehab, chemo toxicity, Methotrexate, zofran……..And so many others.

One year since my world became much bigger. While I’m not thankful that my girl is gone…I am thankful that I’m more aware of how big the world is now. I’m more aware of the HUGE need for childhood cancer funding. I’m more aware of how incredible nurses are. I’m more aware of what parents in hospitals go through. I’m more aware of the long term need cancer families have…..I’m more aware. And because I’m more aware, I can do something about and you can to.

So today-in honor of one year since Sophie was diagnosed-will you consider #DoMoreForSoph and giving to Childhood cancer research? They currently get 4% of government cancer funding.

4%

Our favorite research organizations are:

Gold Network of East Texas

St. Baldricks

Alex’s Lemonade Stand

Sadie Keller Foundation

All of these support childhood cancer research, support families currently in treatment, and help families that have completed treatment but still need long term support.

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: 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. 

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.