Good month

There is so much to say about all that is going on with Maddie right now, but I just haven’t had the time. The most exciting thing is that as of the 18th, she had not had a big seizure in a month. A whole month. That part feels like a dream to me. She has not had a drop in three weeks. This has changed our life. I still know it may only be temporary, but to be able to get a sneak peek into what our kiddo is like without all the seizures is amazing.

Her walking is getting better everyday. Thursday and Friday I let her walk unassisted down a very long hallway in her school. With concrete floors! Parents whose children have never had a drop seizure won’t understand the enormity of this. But she is really making big improvements in her walking.

Thursday night as I cooked dinner, she was making laps back and forth across our kitchen and back hallway. She was so proud of herself, and she was really trying to go fast. It was almost a run. And it brought me back to when we visited Brandon’s new home in Quantico in August of 2008, when she was 20 months old. She was doing the same laps, with the fast walk, pumping her little arms then.

Aug 2, 2008

I guess I could be sad about the fact that Madeline will turn 4 at the end of this month and that we are just beginning to see her do stuff she was doing at 20 months. But I am not. I am thrilled. To get to see her making herself laugh, a bit of a sparkle in her eye, even the beginnings of that terrible toddler defiance…….One of her only words right now (the verbal stuff is not coming back as quickly as walking) is no. And she likes to walk around and say no to all the items I tell her are no-no’s. I must say “no” a lot. She is not playing with toys appropriately yet, unless you count balls, because all she does is throw everything. But she enjoys it, and that is wonderful to see.

It isn’t all sunshine and roses though. I’m incredibly grateful for the amazing improvements we are seeing, but there are side effects too. The mood swings are pretty wild. Somedays she just cries half the day. And I have no idea why. She also has some tummy distress, and is frequently refusing to eat or drink. For a skinny kid, this is not good. Plus it is incredibly frustrating when she spits everything, including her meds. It scares the crap out of me to think that I might not be able to get her to keep her seizure meds down. She seems to dislike being restrained now that she is enjoying the newfound freedom of walking. So the carseat, jogging stroller, and high chair are really not fun for her. This makes life a bit difficult at times. I’ll take these problems anyday over the constant seizing.

And as far as seizures are concerned, I am still pretty sure that she has some very mild spasms as she falls asleep. But that is the only time that I am convinced she is having seizures. We will likely do an EEG sometime between now and Christmas to see if we are really seeing the improvement we think we are.

On the subject of testing, we did go to Chapel Hill last week, but we changed the type of testing she had. We decided to do a skin biopsy to look for mito instead of a muscle biopsy. This meant she did not have to be put under anesthesia for the procedure. Instead she just had a local anesthetic and we held her down for it. It was no fun, but was over fairly quickly. We also had a number of other blood tests drawn. So we’ll wait weeks for the results of all of those tests.

There’s another bit of info from recent blood tests…..A few months back we did a gene microarray on Maddie and found that she has a small defect, a duplication of two genes on one chromosome. There is no data that suggested that these genes might in any way be linked to her diagnoses, but of course we wondered. So Brandon and I were tested as well. Brandon’s test came back normal, but mine did not. It confirmed that I have the same gene duplication as Maddie. I just found this out, so I have not had my genetic counseling appointment yet, but in an email Friday morning, Maddie’s geneticist confirmed what I already suspected, that this most likely means that it is a “benign familial variant” which is unlikely to be the cause of all her issues. So this mainly means we still do not know what caused her epilepsy, but the number one theory is still that it was caused by her chemotherapy treatments.

At this point we are just trying to enjoy every minute. We are so thankful for the good days we are having and we pray that the improvement continues. I have tons more to say about it all, but no more time. Chasing a toddler is much more fun than typing……

Sunset at the beach last week

Love to everyone,
Liz, Brandon and Maddie

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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