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.Β 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
Advertisements

11 thoughts on “Time is flying by

  1. What a darling little lady bug! I love that she’s so smiley in the pictures…she’s really seems to be hamming it up for the camera! I am overjoyed at the improvement you’ve seen with the Banzel. I hope it continues and that you can finally kiss those seizures goodbye! I will certainly be thinking of you next week as she has her muscle biopsy. As far as surgeries go, it’s a piece of cake, but try telling that to your little one! Hopefully one day they will come up with a less invasive test for mito.

  2. Maddie as a ladybug. The cutest thing I’ve ever seen!!! So wonderful that the new drug seems to have promise!!! The prayers for Maddie are working. It is also a blessing to hear you sound more upbeat and see the two of you smiling, Liz and Brandon. I have never seen so much courage from one family. Love and prayers to you all. Maddie will beat this!!

  3. What a great post! You look amazing as does Brandon and your sweet Maddie! We think of you every day!

    With love,
    Carrie, Zack, Elizabeth & Mary Margaret Sexton

  4. What a handsome couple you are. The photo at the ball is great and I am so glad you two had a good time.
    I am thrilled that things are still going good for Maddie and the banzel seems to be working.
    She is so precious and I, too, love the photo of her and Brandon walking down the street. She is always in my prayers and most certainly will be Wednesday as she goes through the muscle biopsy.

  5. AWESOME update!! Continued prayers for all of you! I can attest to how wonderful you looked at the BALL!! You are as beautiful as you are strong!! Maddie is the cutest little lady bug I have ever seen. I am thrilled to hear that the improvements continue on Banzel. Will be thinking of all of you on Wednesday, as we do each day.
    May blessings abound –

    The Miller Family

  6. PRAISE GOD!! I am so happy for your awesome little warrior Maddie!! She is such a beautiful little girl and your post is amazing!! We’re still praying for you guys. You look beautiful Liz. Keep the updates comin!! XOXO!!

  7. What a joy to read! I understand. Anna was finally diagnosed with a mitochondrial disorder this past summer. Good news is there is supposedly is a treatment to help not cure it and it is only a vitamin. Please let us know more of Maddie’s great cure.

  8. I’m so thrilled to read this one! Wow! What a perfect costume, absolutely precious!

    I definitely know how the drops can ruin everything…and to read these are under control I know is HUGE for you guys. πŸ™‚

    Hugs,
    Holli

  9. Sounds to me like you guys needed a happy October memory. And Lord knows, Maddie is the cutest lil’ lady bug ever! Obviously takes after her hottie tottie ‘rents! πŸ˜‰

    I’m so happy that Banzel is giving you some reprieve! It’s one of those things that I hate even saying anything outloud for fear of jinxing…but so so happy that you have this time!

    xoxo

    …danielle

  10. I’m with D. I fear the jinx as well, but for the days of respite, well, I’m grateful too. Hope is something to hang on to. And I am, for the three of you. Brandon looks terrific in his dress blues. And I’m totally hetero, mind you, I just wish I’d chosen a more noble career path as he did. I admire his dedication to his country, his family, you know all that. That uniform is a symbol of that dedication, and it fits him very well.

    You’re both excellent parents of a wonderfully cute girl. The words you used to describe Halloween, the ‘sweet simplicity’ of it. I may steal that. I’ve been looking for a title to a book I’ve been trying to write. That might be it.

    Would you sue me? πŸ˜›

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s