It’s that time

And just like that…….

He’s gone.

But I guess it wasn’t that sudden. We’ve known the deployment was coming for years, really. With operational tempo as it is, honestly we are probably lucky it is just coming now, almost two years after Maddie’s cancer diagnosis.

I am devastated. I miss him terribly already and it’s been just 4 days. We have been apart tons over the last two years, but we were in almost constant contact either via phone, text, or email. We did not have that kind of contact while he was recently in California training. And it was very hard. Because each time we got to talk, I had to catch him up on Maddie’s current “medical status” and try to quickly come to good decisions about how to go forward. So this is different. I will be responsible for those decisions and I won’t be able to get his input often.

Don’t get me wrong. I’m happy to make decisions, but I like to know his position on the issue at hand. We have always made the hard decisions together, and I would be kidding myself if I thought the hard decisions were over for our amazing little girl. The really cool thing about us is we make a great team. We enjoy arguing, and we both always think we are right. In the end, we always agree on a way forward and we know we have given each question the tough consideration they are due. So I am really going to miss my partner. But I promise to try to play devil’s advocate and take his position on the issues to make sure I examine each choice we have critically. After all, he was the one who argued all the way through her chemo protocol that we needed to be worried about toxicity, while I wanted to push as much chemo as possible as cancer was my biggest fear. So here we are dealing with seizures most likely related to toxicity, and he is the one who was right. Of course, we really had no say in her chemo protocol, but we liked to argue the merits of all courses of action along the way.

Having Brandon gone makes me feel alone because with all our issues I find it hard to believe that anyone else could know what we are going through. Then again, I hope and pray that no one else out there has a child with a risk of cancer relapse, hundreds of seizures daily and their husband in a very dangerous location. I don’t really have a peer group anymore, I guess. Probably a good thing though. And when I read stories of other families who are struggling, I realize it doesn’t really matter what the struggles are, and whether or not they are the same. When you are going through something as challenging as the illness of a child, one cannot really quantify and compare levels of struggle or pain.

We are approaching the two year anniversary of Maddie’s leukemia diagnosis. Thus far, 2009 has been a crazy year. With Maddie beginning to have the weird eye rolls on 12/29/08 which turned into seizures, it started out a lot differently than expected. We knew Brandon would be deploying by the end of the year, but thought that by the time his departure came around, we would feel like Maddie might actually have beat the leukemia. Back when the seizures started, neither of us had any idea quite how serious a battle they would be. I remember in fact praying that they were seizures because I felt seizures could be controlled with anti-epileptic meds. It never occurred to me that Maddie would develop a catastrophic epilepsy with seizures that may or may not ever be controlled.

Even this spring, when we could see how they caused her to regress developmentally, I was still very hopeful that Maddie would be one of the kids whose spasms were eventually eradicated and who would go on to develop normally. I know every parents hopes for that, but I felt especially confident of it because all the research says that kids who were developing normally prior to seizure onset are more likely to have a good outcome. Plus, Maddie had already had a very tough battle with cancer. It just didn’t seem fair that she would beat cancer only to lose everything to seizures. As the months wore on, and we exhausted treatment options, I became less and less sure of the outcome.

So here we are, Brandon is gone and we are still quite unsure of how all this will turn out. Maddie still has tons of seizures daily (though we are seeing some improvement with the Zonegran). Both Brandon and I know we are strong enough to handle the deployment, but I think for the first time it is going to be harder on him than on me. In the past, we have felt that they were equally hard; we each have significant stresses on top of the missing each other and not being able to communicate as much as we would like. This time though, I get to be with Maddie every day, and he will have to live with updates from me, pictures, videos, and whatever I can do to show him how we are doing. This would be hard as his first deployment as a Dad, but it is amplified by the crazy health challenges Maddie faces.

So there is a lot going on, and as one of our oncology nurses pointed out to me the last month, I wouldn’t know what to do with myself if there wasn’t some drama in our lives. But someday I hope the drama is a little less nail-biting.

I am weaning her this week, which is really not fun. We are getting very little sleep at night, and she has decided to try to sleep all day again. We just fixed this sleep cycle thing two weeks ago, but like everything else, she is in control, or more accurately, the seizures are in control. So until we can control them, sleep is hard to come by.

Next week, we go in the hospital for a minimum 3 night stay to begin the Ketogenic Diet. We have very high hopes. We really need this to work. It is an enormous undertaking, but will be worth it if we can get rid of the seizures. We have very few good options left as far as meds go.

The crazy thing is that through all of this I feel incredibly lucky. Almost two years after her diagnosis, my little girl seems to be free of cancer for now. Maddie remains happy most of the time despite the seizures that rack her brain all day (and night) long. And I am blessed to have a husband who is so important and integral to every minute of my life that it tears me up to be apart from him. The fact that I miss him so much is a good thing, as it reminds me how lucky I am to have such an amazing relationship with my husband. The drama and pain of “right now” helps me to realize how lucky and proud I am to be Maddie’s mama and Brandon’s wife.


Sorry for the long, rambling post……..lots of stuff in my head right now.

Love to everyone,
Liz

Overdue

Lately I have just been too busy living my life to post. I think that is a good thing, as it means I have not been spending as much time on the Internet as a diversion. Life is moving along I guess.

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Maddie is still having lots of seizures, though they are greatly decreased from 45 days ago. Right now she has around 100 seizures per day, which includes typical infantile spasms in clusters, single spasms and head drops which cluster as well. I did not actually count the head drops in clusters before because there were so many and I had tons of “bigger” seizures to count. But if I had been keeping track of them, I would say that 2 months ago she was having 500-1000 spasms of some type daily. That is just absolutely outrageous. Luckily, we have gotten some level of control now, but it has not come without a price. For Maddie, the side effects of Zonegran that are not fading much yet are loss of appetite and cognitive issues. She has trouble recalling and pronouncing words. She walks with much less balance. That is improving, but we are getting her a helmet because walking is truly dangerous for her right now between the seizures and her lack of balance.

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In an attempt to try to reduce some of these side effects, while maintaining some level of seizure control, we decided to reduce her dose of Keppra, an anti-epileptic she has been on for 6+ months that frankly we did not think was doing much of anything. 5 days after the dose change when the number of spasms (in clusters) per day had quadrupled, we decided Keppra might actually be doing something after all. So we went back up to her old dose. And things have gotten almost back to where they were.

Going forward from here, the plan is still to do the Ketogenic Diet starting Oct 26 in Charlotte. By then, we have to have her meds at a stable level, so we really can’t change much between now and then if we want to give her the best shot at the diet working. If the diet works for her, down the road, we would consider weaning both the Keppra and the Zonegran. But for now, it seems they are both helping and we don’t want to lose the only seizure control we’ve ever had except from dangerously high doses of steroids.

The tricky part is that for the diet to work, Maddie will have to eat every single bite and drop of the foods we make her. And her appetite is tiny right now. And because of the loss of appetite, I haven’t weaned her from breastmilk yet. Because that has been the only way I can ensure she takes in enough fluids most days. But it has to be done, as much as I don’t want to do it.

Sometimes I think I’m insane that I am nursing my almost three year old. But she loves it, and honestly I do too, and there really isn’t anything that makes her happier in the world. It totally bums me out to have to take it away from her. But the diet will not work unless I do. And if it works, it will be worth it.

I truly feel the ketogenic diet offers the highest chance of seizure freedom for her now. Though the meds she is on now are helping, going much higher would leave her so out of it, I am not sure it
would allow her to make any developmental progress even if she were to get seizure free.

So in the next two weeks we may make one more med increase just to see if we see any great improvement and I have to wean her from nursing. We also have lots of therapy, and we are trying to get Maddie a bed that is safe for her through insurance. I have heard this can be quite a fight. So things are busy here.

And we also have to say goodbye to Brandon. I will write more about this later, but right now we are just enjoying our time together as much as possible.

Last month was Childhood Cancer Awareness month and I am ashamed that I let it go by without even mentioning it. Those of you that have followed our story for awhile know that this time last year we were gearing up for the MileStones walk for CureSearch. Hands down, I still feel it is the most important charity to support, but this year, I gave myself a pass. We just have too much going on right now for me to organize a team for an event we probably can’t attend. But I am optimistic that next year things will have settled down for us a bit and I’ll be asking for your money again for this fabulous cause. Honestly, if there were better treatments for children’s cancers, Maddie would likely not be suffering from hundreds of seizures a day. But that chemo hopefully saved her life, so I am still grateful.

On that note, October is a tough month for us because it was the month of Maddie’s diagnosis. But that means we are actually approaching the two year anniversary of her leukemia diagnosis. I’m not ready to celebrate yet, but every month she is still in remission is a step in the right direction.

And I hate to just throw this in at the end of our update, but I want to mention it now so that if you can pray for him, you would do so now. A mom of another child with IS, Danielle, has been one of my strongest supports in this battle with seizures. Her beautiful son Trevor is having grids placed on his brain today to monitor his seizure activity. This is like an internal EEG, which is much more accurate. He will be monitored this way until Friday, when he will have a subtotal hemispherectomy. Dr. Chugani’s team in Detroit is doing the surgery, so he is in great hands. Please pray for a successful surgery with no complications, but most importantly that this rids him of seizures forever.

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I don’t think I can properly express how much I hate seizures and all that they take from our children.

Love to everyone,

Liz, Brandon, and Maddie