My heart hasn’t really been into updates lately. Honestly, we’ve just been kind of floating through the last few weeks since we got to Cook’s and they changed the plan on us. To recap: we are not currently preparing for a stem cell transplant because Sophie’s neurological deficits are too severe to make transplant safe. She is on the NeuroRehab floor at Cook’s getting PT, OT, and speech daily in the hopes that she will get stronger and have more motor control in order for transplant to be an option. We have no timeline for when/if that’ll ever happen. She’s also back on daily and weekly chemo to keep her in remission because the aggressiveness of her cancer is such that stopping chemo all together would almost certainly result in relapse and basically, the end. Transplant is our only long term option. Limbo. Stuck in between cancer and transplant while also stuck between massive neurological damage and recovery. It’s not a fun place to be but, more on that another time.
To update, there’s not a whole lot that’s new. Sophie has adjusted to rehab here quite well. She no longer cries when she goes to therapy and is actually calm and compliant through 90-95% of her sessions. We don’t get to watch her here because they take her to the ‘Low Stim Gym’-basically a room with no windows and no other kids or therapists so Sophie doesn’t get overwhelmed or over stimulated and can just focus on herself and her therapist. According to the people working with her, that has been very helpful. Some other good things are that her G-Button is finally almost completely healed! We are still cleaning it thoroughly twice a day and putting antibiotic cream on it but, it’s barely red at all now and she doesn’t seem as bothered by it when we touch it. Overall her tummy issues have been getting better as we’ve adjusted and changed some of her medications-much less nasty diapers and very little throwing up. She’s getting lots of nutrition in which is fabulous.
From a cancer standpoint, everything is ‘ok’. We have no way of knowing for 100% certain without doing a PET Scan that she’s still cancer free but, she’s getting her blood checked twice a week and her numbers have been right where they should be each time so we all consider that a win. Basically putting her (and us) through scans isn’t necessary if her blood work continues to look ‘normal’-as normal as it can look in Soph’s case. Her ANC (immune system) counts are also high so her infection risk is low which is HUGE as we are in cold and flu Season! We also are really enjoying being in Ft Worth. We miss our 6th and 7th floor friends and nurses at Children’s A LOT. I miss having familiar faces each day that already know Sophie and us. We had some truly special relationships there. But we also truly feel like Cook’s is the perfect place for Sophie. She’s getting full inpatient hospital services while also getting extensive rehab. She has oncology nurses checking on her every evening when she gets chemo, our oncology team of doctors comes to see us daily, her neurology team comes to see us daily, every single member of her team is in the loop and communicating 24/7. If there’s any question at all, her nurse calls the oncology floor directly. We even have a floor pharmacist who just works in this floor and stays on top of making sure she’s getting the type and dosing of meds that she needs while also specifically looking at other meds and supplements that could help her. It really is the perfect situation for her unique needs.
We’ve also been enjoying the Cook’s campus, it’s gorgeous! The grounds are absolutely Christmas crack overloaded. I thought that would bother me being surrounded by Christmas but, it’s actually comforting. I even bought a tiny Target tree for our room. We are able to take Sophie outside as often as we want in her stroller chair with her mask on since her counts are so high and it’s the best kart if our days! She is fully relaxed on our walks and I’m pretty sure she’d rather us just keep on walking for hours. We try to take one in the afternoon then a second one when it’s getting dark so she can see the THOUSANDS of lights that light up the courtyards here. It’s incredible. There’s even a Frozen display with Olaf and Sven! We also get a little extra parent exercise here because parking is free and Ronald McDonald is less than a mile away so, we get to take a nice walk in the fresh air each day which has been really nice. I know it’s December and it should be cold but, we’ve SO enjoyed this weather! It makes for nice walks for us and it’s not too cold for Sophie to be outside.
Now of course there’s never just a big list of good news. All of the above is good stuff but, the less than good things have been overshadowing the good over the past week. It’s been really hard for us adjusting to this ‘make it up as we go’ plan, which is basically not a plan at all. Sophie’s case is so unique and rare that her doctors haven’t ever dealt with anyone like her before-yay. Our kid is the test subject and it’s zero fun knowing that. That also means that a lot of her symptoms, there just is not explanation for because they flat out don’t know what’s going on inside of her and what’s causing it. Pinpointing things has been impossible. Her jerky spasms have gotten out of control. She basically is only still when she sleeps and up until the last few days, she was only sleeping 2-4 hours in a 24 hour period. That went on for 5 days. She was exhausted, I was exhausted, no one had any answers. There was a lot of crying and staring at the wall. Last week wasn’t fun. I’m covered from shoulder to knee in bruises from being hit and kicked by a rogue foot or elbow. She gets so upset when anyone comes in to mess with her that we have to hold her legs and arms down so the nurses can give her meds or check vitals. I’ve been beat up by my 2 year old. Not really what I signed up for. It’s heart breaking. She can’t control it and you can see it all over her face that she doesn’t understand why she can’t stop. I can’t even comfort her because she just wants to be left alone. We’ve tried upping her nerve medication, adding another pain med, taking off a couple of meds that can exacerbate stomach issues, and most recently they added a seizure medication just to see if it would help her relax. That has helped a little but, not much. It’s exhausting. And as Forrest Gump once said, “That’s all I have to say about that,”…..for now.
Thank you for continuing to pray for us, we need it.
1. Yay for small things that are good. Normal blood work, less tummy issues, healing G-Button, walks outside, Christmas lights, and a great team.
2. Pray for the jerks and neurological symptoms to just stop. Miraculous and FAST healing. Why not? It could happen. It need to just stop.
3. Continued protection from cancer. She is healed forever and transplant WILL be the final straw in her cure.
4. Huge, baffling, miraculous progress in therapy. We need swallowing, coughing, sitting up, and more motor control but, we’ll take walking talking and running too! Complete healing that could only be Jesus.
5. Protection for all of us during cold season!
6. Encouragement and support during the holidays, strength in our marriage and relationships, rest and refueling from really long and hard days at the hospital.