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.
Sophie The Brave 
Thinking about you all. I will say a prayer for you! ❤️
LikeLike
Praying for you sweet Sophie. You stay strong for us and we will pray extra hard for you. You really are a brave little girl. Merry Christmas to you and your family. Sending love and hugs your way.
LikeLike
Dear Shelby, u are in our thoughts & prayers every single minute of every single day . Daddy asks me at least 10 times a day if there is an update on Sophie? And as we still believe, Mother is there with you keeping watch👼🏻 You amaze me with your strength & if there is ever a time of year for miracles, it is now!! Christmas miracles can only be reserved for you and your family!! May God hold you tight and give you the peace that you need to get thru these next few weeks! We are all there with you 💜 Every step of the way! Merry Christmas 🎄
LikeLike
What amazing news! I check every day on Sophie’s page for an update. Today’s update is wonderful! Don’t worry about those of us who have fallen in love with a little girl we’ve never met forgetting about y’all. ( My whole family remembers her every time we open a can and deposit our tab into a container for your stay at Ronald McDonald House.) Our prayers will continue for your specific requests and for a Christmas Miracle. Much love and many prayers.
LikeLike
This is one of those scary/excited moments in the life of cancer! Praying for both of you!
LikeLike
This is such good news to hear! Love you my sweet friend and am praying for y’all!
LikeLike
Have been praying daily for all of you. We will say extra for the Jan.11 date. This is just wonderful news for all.
LikeLike
Dear Lord as only You know how to do, I have faith that You will heal Sophie inside and out. As only You can do, I pray for you dear Lord to guide the Lab Technicians and the entire Team for the knowledge and perfection to lead precious Sophie’s body into being whole again as Your child. I love you and believe in you and I pray for your miracle in Sophie. Amen
LikeLike
Praying for Sophie daily. Also praying for her mama, daddy and extended family. May you have peace this Christmas.
LikeLike
You, your husband, and “Beautiful Sophie will be in my prayers every day. I have been praying for Sophie, you, your Husband, and the doctors and nurses since I saw your post. Just to give you a little story. My best friend Rochelle, who had stage 3 – 4 breast cancer. A very aggressive type of cancer. Had stem-cell therapy and that was 20 years ago. Today, she travels to different parts of the world, and is involved in many hobbies and tasks. She is now getting ready in planning and celebrating her Daughter’s wedding this April. Have the Merriest Christmas celebration as it can be You’re in my thoughts all ways!
LikeLike
God be with Sophie, you, your support system, and all of the health care providers. You don’t know me, I’m a friend of Kyle Planas’. I’m praying for you all daily.
LikeLike
We will be praying every day and especially during Christmas. This little girl and all around her Lord need to feel your presence. Lord please allow all the test to come out with only positive results. Allow her to gain strength for the transplant through therapy and protect her little body as she prepares for the transplant and afterwards. Amen
LikeLike
We love Sophie and all of you♥
Our God is very BIG!
LikeLike
Sophie your are the brave! God knows all things concerning your body, as he is our creator! I pray that the Holy Spirit in you seek out and destroy all of the cancer cells and the new stem cells be on a Holy mission to stimulate and grow new tissue! Healthy tissue! That this year that world stopped be your testimony and that of your families! God bless you little warrior! God bless and keep you and your family! Merry Christmas to all!
LikeLike