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.