Time is flying by

We have been super busy with the Marine Corps Ball and Halloween. Things are still going well with the new med, Banzel. As of today Maddie has not had one of her big seizures in 15 days and I haven’t seen a drop since Saturday. There is definitely still seizure-y activity, but the improvement we are seeing is amazing. I think I had mostly given up hope that adding a new med could help her this much. Of course, I am still highly concerned that all the bad stuff could just creep back in as she becomes used to the medication. But we are hopeful. And extremely grateful for the good days we are having.

I wanted to share a pic of us dressed for the Ball. We had a great time.

We really enjoyed our stay in Myrtle Beach. The Friday following the Ball was Oct 29th, which also happens to be the 3 year anniversary of Maddie’s leukemia diagnosis. We celebrated the fact that she remains in remission and had a relaxing day at the beach.

 

 

 

We returned home from Myrtle Beach on Saturday and spent the next two days watching football and prepping for Halloween. Brandon even carved our pumpkin (can’t remember the last time we did that…..). Maddie wore a ladybug costume and looked absolutely precious. She is improving cognitively, but is still nowhere near understanding Halloween or the concept of trick-or-treating. So we just enjoyed taking pictures of her looking cute and walked up and down the street together. This was the first remotely normal Halloween we’ve had with Maddie (first: 2 days after cancer diagnosis, second: low counts from chemo, just out of hospital, third: just out of hospital on ketogenic diet so candy=forbidden). We just enjoyed the sweet simplicity of it. And got some great pics.

 

 

This last one is my personal fave. Two weeks ago, there is not a chance we would have allowed her to walk on cement only holding one hand. Not only could she not have walked with balance, but the risk of a drop seizure onto concrete was just too high. It was an awesome moment. Except that she is constantly trying to break free of the hand-hold to get loose and walk on her own. Which she can do now. We still take precautions, but it is a world apart from where we were just two weeks ago.

I have so much more to say about how things are going, but things are busy and since they change each and every day, I will reserve my more in-depth report for later. I am running a half marathon Sunday and next Wednesday Maddie is having a muscle biopsy (under anesthesia) to check for mitochondrial disorders. We have always assumed chemo caused her seizures, but we are still trying to rule out other causes since her epilepsy has been so severe and hard to treat. It seems like a weird time to do it, since we are finally seeing some success, but we have been waiting to schedule the test for a long time so we are doing it. Please keep her in your prayers, especially on Wednesday.

Love to everyone,
Liz, Brandon, and Maddie