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!
6 thoughts on “Perspective ”
4 years ago I was diagnosed with leukemia. I got a second type of cancer two years ago and had a stem cell transplant. I am so thankful that God has allowed me to still walk on this earth. I know he has a plan for me.
I pray for Sophie several times a day. Your post today brought me to tears. You’re doing a great job!
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I was typing away, and accidentally hit something, don’t know if sent comment or not…so here I go again. I don’t know you personally, I know your mother-in-law. However, I feel as if I know you. Thank you for sharing your more than difficult situation…AND your wisdom and discernment of how to deal with the unbearable…you are so right sweet sister in Christ…it is through thanksgiving and praise of our LORD❣ Something I so needed to be reminded of today, a heartfelt thank you for this reminder❣❣ I read your updates, and my family prays for yours at least daily. You have ministered to me today, thank you. 💖 What a wonderful use that in your darkness, you are a blessing, ministering to others, spreading the light in the midst of darkness. Just WOW. WOW. WOW. Love in Christ to you and yours💖🙏💖🙏
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Shelby, I love this post. You have gone through MUCH more struggle than we have, but I can completely relate to the feelings of watching life pass you by and missing the feeling of being normal. Being normal has a whole new meaning for me now. Just spending time at home with Ellie is something I treasure more than I ever would have if we didn’t spend time in the hospital. You will get to normal again. And know that everytime you are thinking of us living normal lives, I am thinking and praying for you all. Sophie is on my heart all the time. Your steadfastness and thanksgiving during this time is truly inspiring, and from a mama who has spent time in a hospital with a sick baby, I am proud of you. So very proud.
J’admire votre persévérance et le courage de Sophie !! Je vous envoie beaucoup de prière de France et souhaite beaucoup de progrès à Sophie !!!
On vous embrasse…
You are an inspiration to all the mothers of the world. His teachings and guidelines on how we should behave in the world are fantastic. Woman of faith. Thank you for your witness and your teachings. We’re with you, because we need you. Love from Brasil.
You are an inspiration to all the mothers of the world. Your teachings and guidelines on how we should behave in the world are fantastic. Woman of faith. Thank you for your witness, hope and your teachings. We’re with you. Always. Because we need you to continue to guide us with your faith. Love from Brasil.