Journal entry by Brian Pederson —
I'm thankful to report that there isn't much to report!
It's been a busy week but a good week. We headed up to the cities on Tuesday to have Freya fitted for new orthodics. Her old boots had gotten a bit too short and snug and she wasn't doing very good with them on for long periods.
Both kiddos traveled quite well especially considering they just came back from Texas barely a week before. Jess took them on a much needed respite to Granny and Cappy's place for 2 weeks the first half of September. Thank you too granny for flying in to help Jess with the drive down.
Wednesday was scan day and all went pretty much as usual. There was some trouble getting her port accessed and drawing well so poor Freya had to endure some excess poking and digging around with the needle. It wasn't fun but she took it quite well. The scan and lumbar puncture went off without a hitch and she actually woke up faster than she had in a while. However she was a bit more out of it for 20 minutes or so and was pouting and whining about wanting to go get her pictures done (the mri she had just finished). After some snacks and juice she sprung back to her perky self and we headed off to speech therapy.
The last few months we've been doing the vast majority of her rehab over the computer via telehealth. She does ok most times but sometimes keeping her attention on the computer screen is a challenge. We always try to get some in person rehab while we're in the cities. She usually enjoys that much more. Speech decided to do another assessment since we were in person and Freya did so well that they think she can stop her sessions! It sounds like they'll just want us to check in every 3 months or so to see how she's doing.
Thursday was Fenrirs birthday! Another kids birthday spent at the hospital so we're having his "party" today. Jess is working on the icing for his cake as I write this. It's hard to believe he's already 2! He (we) got the best birthday present we could have wanted. The MRI shows everything stable! The recurrence site where the second tumor was is completely clean. No sign of anything. The original tumor site still has the little spots that are lit up but there has been no change since they showed up many months ago. The team still says that the spots don't have any characteristics of tumor and the best guess is that it's scar tissue or necrosis. The fact that it remains unchanged for this length of time seems to be a good sign. Oncology is extremely happy with the scan and says she's doing extremely well. Because of all the changes in the hospital since covid our appointment wasn't with our normal oncologist but we did bump into her in the hall on the way out. We hadn't seen her in months. Since covid they tend to dedicate staff to certain areas so they don't rotate around the hospital. Our doctor apologized for not being able to see us in person for so long and was sad to say she hasn't seen a majority of her patients in months. It was great to see her and she was thrilled to see Freya and weigh in with how amazing she looked.
After our brief visit we were off to orthodics to finish fitting the new boots before heading home.
Maintenance chemo continues with random holds depending on Freyas counts. In all she's doing very well with treatment. Her meds have been tweaked to a point where side affects are minimal. Her seizures which were daily for a while continued for a bit after her med adjustment but then just stopped. She didn't have any for over a month but after the trip to Texas she had a few while there. We think it's because her med schedule was off from the trip. She has had just a few since being back home and they seem to be brought on when she's distressed. Not every time but when they do happened there's an identifiable trigger event that seems to set it off such as tantrums, stress from a question she doesn't like, being told no, and just generally getting herself worked up over something. Neurology isn't concerned at the moment. The spasms are very mild and infrequent. We have new med on hand in case they escalate but all in all for now the seizures aren't concerning.
Freya turns 5 next month. It's insane to think she's been fighting this monster for nearly two and a half years. She is truly astonishing and we couldn't be more proud of her. She's gotten a lot more mobile and self sufficient. She pulls herself up on nearly everything and walks while holding on to something. Most noticably the couch. She loves getting up and walking circles around the couch. She mostly does it without her orthodics which isn't ideal but we don't stop her. Hopefully these new boots will be comfortable and she'll do it more often with them on. Her left arm continues to be her brick wall. She just doesn't want to focus on using it much. It's better but definitely the slowest recovering limb by far. If she could get a bit of it's function back she'd be able to use a walker to get around. We're looking into a walker since she surpassed needing her old one. A different type food l could give her a lot of her independence back but she'll likely need that left hand to be able to help hold on. Baby steps.
Thank you all for your continued support. The next scan will be around January and hopefully I'll have nothing to update until then!