Nurses

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. 

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! 

A letter to nurses 

The original post of this letter on Sophie’s Facebook page (Sophie The Brave) went viral and was shared on Facebook more than 26k times and has over 50k reactions. It was picked up by US Weekly, Southern Living, Babble, CafeMom, Romper.com, ABC News, and several more! I’m so humbled and really quite shocked at the attention the post has received! In light of that popularity and all of the thousands of new followers on Facebook, I decided to move all of our updates and posts to a blog that I can now share on Soph’s page. 

Enjoy! 
Dear Peds Nurses,(And incredible nurse techs!)
I see you. I sit on this couch all day long and, I see you. You try so hard to be unnoticed by me and my child. I see your face drop a little when she sees you and cries. You try so many ways to ease her fears and win her over. I see you hesitate to stick her or pull bandaids off. You say ‘No owies’ and ‘I’m sorry’ more times in one day than most people say ‘thank you’. 
I see all of those rubber bracelets on your arms and wrapped around your stethoscope, each one for a child that you’ve cared for and loved. I see you carrying arm loads of medicine and supplies into one child’s room all while your phone is ringing in your pocket from the room of another. I see you put on gloves and a mask and try not to make too much noise at night. I see you sorting piles of beads so you can give them to your patient to add to their ever growing milestone necklace. I see you stroke her little bald head and tuck her covers around her tightly. I see you holding the crying mom that got bad news. I see you trying to chart on the computer while holding the baby whose mom can’t-or won’t be at the hospital with her. 
You put aside what’s happening in your life for 12 hours straight to care for very sick and something’s dying children. You go into each room with a smile no matter what’s happening in there. You see Sophie’s name on the schedule and come to check on us even when she isn’t your patient. You call the doctor, blood bank, and pharmacy as many times as necessary to get my child what she needs in a timely manner. You check on me as often as you check on her. You sit and listen to me ramble for 10 minutes even though your phone is buzzing and your to do list is a mile long. 
I see you using your phone as a template to paint the perfect cartoon character on the new kid’s window. I see you cheering so enthusiastically for the kid taking laps around the nurses station. I see you with that Nerf gun hiding from the kid around the corner. I see you hold tiny hands, change dirty sheets, translate medical talk for parents, and wipe your eyes coming out of a particularly hard room. I see you put on gloves, masks, and a gown then pause before you hang an IV bag of poison chemo for my kid.
I see you. We all see you. No amount of snack baskets or cards can fully express how appreciated you are. You are Jesus to us every single day. Our children wouldn’t get what they need without you. Moms like me wouldn’t feel sane or heard without you. You save our babies and we couldn’t do this without you. 
Love, 

A mom that sees all you do and loves you dearly for it.

****************