It’s been 162 days since our diagnosis.
We are on Day 80 inpatient since our ‘relapse’, ICU scare, and horrible aggressive chemo. Sophie will probably be away from home for at least another 130 days.
So, things have been busy but, also at the same time uneventful. Soph’s G-Button procedure on Tuesday went well. The surgeon was able to do the procedure laparoscopically (through her belly button) and didn’t have to make any large incisions. She was only under anesthesia for about 90 minutes and had no trouble with that. We had a pretty rough night Tuesday night. Soph was in quite a lot of pain and was waking up every 3 hours screaming and trying to sit up. From a therapy standpoint, trying to sit up is amazing but, with a brand new G-Button site–siting up isn’t great. So we got ZERO sleep and tried A LOT of morphine. My child is a tank and burns through sedation and pain medicine like it’s her job! We finally seemed to get her over the pain hump yesterday and she pretty much slept all day long peacefully. We started Pedialyte in the tube yesterday afternoon and that started off bumpy with some throwing up but then she adjusted. Yesterday Aunt Jacy FINALLY got back!!!! She’s been banished for almost 3 weeks because she had Strep and we missed her!! she and Soph got lots of cuddles last night so I could go get some much needed sleep at Ronald McDonald House! Sophie’s pain was much more under control lastnight-she only woke up twice in pain which was a HUGE improvement.Today, Soph was feeling almost back to 100%! She had a great OT session grabbing and lifting toys with her therapist Lis helping her, wound care came by and said her incisions still look great, and she’s had no redness or fever. We started her back on formula this morning at a very low dose and are increasing it slowly raft hour. So far that has stayed down! We also got a great surprise today…. SHE GOT TO GO OUTSIDE!!!! Her ANC (immune system) is above 2,000 so her infection risk is low and it was a beautiful day so we loaded up in our PT stroller and went outside! We sat with her Speech Therapist Brittany and PT Sara and worked on making sounds and holding her head up. It was nice to be outside but, she gets so so frustrated trying to speak that it makes me sad. She gets flustered trying to make sounds and ends up crying. Overall though, it was a good outing and it wore her smooth out.
The plan for the weekend is just to rest and get therapy. Wound care will continue to come by and check her incisions. We will still get hopefully our last dose of Methotrexate Tuesday then we’ll wait a week to repeat our PET Scan and Bone Marrow Biopsy to see if she’s still in remission. It will probably be a stressful week of anticipation but, I’m holding onto the FACT that Grace wins everytime. Please be praying for us over the next week!
1. Thank you Lord for less pain, no fever, and good incisions. And no vomiting!
2. Pray that Soph remains fever and infection free!
3. Pray for miraculous progress in all 3 therapies!
4. Pray for complete and whole healing from cancer and from whatever damage is going on in Sophie’s brain.
5. Pray that she is CANCER FREE!