Ok So really I don’t have just a whole lot of information regarding the MRI. Well, I mean, we have information but, a lot of it we already knew.
It shows there’s definitely some pretty significant damage kind of throughout the ‘wiring’ of her whole brain. We already knew something was obviously damaged due to Sophie’s current state of activity, so it wasn’t really new information. All anyone can say is ‘no telling if it’s permanent or what, when, how much, or if it will come back’…..which we also already knew and were expecting. We’ve never been under any kind of delusion that she’ll be hitting ‘normal’ milestones anytime soon-this is a pretty realistic household. There’s also damage to the nerves at the base of her spinal chord which-again-we knew about due to the Nalarabene chemo she received in ICU.
We also all know the brain is an amazing thing that can change and reroute things. Sophie is very young and still has a lot of developing to do SO all we really can do is just do therapy and wait and see….which we already knew.
That sounds like a frustratingly uninformative report—because it is. We are not super bummed though because, like I said- we knew most of this already. We’ve gotten used to the fact that she’s incapacitated over the past 2 months. We’ve also seen her make a lot of significant improvement over that time period so there’s no reason for us to expect that she won’t continue to make progress. We still will take it-one day at a time. More waiting.
Where’s the good here? Well, there’s actually quite a bit of good. 1. There’s no tumor of any kind in her brain or spinal chord! We didn’t expect that but, it’s nice to have that confirmation. 2. She’s not in any discomfort or pain-the movements are just frustrating to her because she can’t control it. 3. There is no permanent injury to the basil ganglia. She still has severe damage but, we KNOW a BG injury is pretty much permanent and she doesn’t have that. 4. The nerve damage in her spinal chord should improve and hopefully reverse over time and her nerve medicine will keep that from being painful. 5. Sophie continues to be alert, happy, and attentive throughout the day-all are very good signs for her ‘with-it-ness’ if that makes sense.
As far as from a cancer standpoint-we will still continue with the plan to have a G-Button placed on Tuesday then we are pretty sure chemo and transplant are still going to happen. We haven’t heard the official ‘Yes transplant is still on’ from our lead oncologist but, every other indication is that that is still the plan. I’ll have more of an answer on that tomorrow when she comes to see us. We are very aware of her physical needs but-quite frankly-we still have to get her cancer under control and hopefully cured before we can tackle her long term rehab needs.
So for now, we’ll keep praying.
1. That the MRI results won’t effect transplant in anyway.
2. Pray for no fevers, infections, or pain
3. Continue to pray for BIG therapy progress!
4. Pray for complete and total healing from the cancer and any side effects in her brain and body!
***edit***
The bracelet pictured is from an old order-I’d love to get one to everyone but the cost of envelopes and mailing plus the time it’d take to organize it would just be a bit much. Thank you for the support however and I’m sorry for the confusion…I just love this picture. 🙂 If I find a way to do it and get it to people far away easier, I’ll be sure to share!
Sophie The Brave 
Praying for your precious girl and her family.
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I pray every day and multiple times a day for All or you!! So in awe of your strength, courage, and sharing with us your story. Thank you.
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I see Sophie’s name or think of her — immediately pray for her, you Dad, grands and her whole medical team. I pray for drugs. I pray for the requests you mention. I pray God’s holiness, healing, strength, stamina, and amazing grace.
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How do we get those bracelets ?
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We don’t have many left but, I bet I can get a couple to you from Memom!
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Ok! We’ll call her tomorrow & see! Thank you sweetie!! All our thoughts & prayers r with you all of the time!
Love you all💜
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Breaks my heart, but I know that Sophie will continue to show us amazing improvement. She is such a fighter, I’m so proud of her and y’all too. I’m not only praying for Soph but also for her family seeing her through this. Stay strong and sending much love ❤️
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Praying this sweet child of God continues to make progress and still find joy and laughter in this difficult journey. Praying for for all who love her, support her and plan her care. God be with all of you!!!🙏🏻🙏🏻🙏🏻💗💗💗
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God is Bigger! Praying for Sophie!
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I just started following Sophie. You, your family and especially Sophie are in my thoughts and prayers.
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I just started following Sophie’s story. She is in my prayers as well as you and your families. I saw the bracelets. How Can I get a couple??
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Praying several times a day for Sophie and her family. May God give you all comfort and peace.
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I work nights a couple days a week and it’s slow several hours of those nights. I wouldn’t mind addressing envelopes and mailing bracelets. Maybe you could have folks donate enough to cover the expenses of the bracelets and shipping? (You may do this anyway.) If so, I’d be happy to donate several hours a week to getting them mailed out if that would help. It would help to keep Sophie on people’s hearts and remind them to pray? Just an offer.
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