Where we are now

I can’t believe how infrequently I have updated this blog over the last year. It’s been an interesting and busy year and we’ve had lots of changes in the last few months so I’ll try to touch on the important stuff.

We have moved to Raleigh. It was a smooth move on the Camp Lejeune side….I felt like things were going almost too well. I should have known it couldn’t be that easy. I left Brandon there mid-move to handle the last 2 days of packing and loading the truck. He had loaded all of the important stuff in a trailer which I brought here with me. Our plan was to get Maddie’s room all set up so that she was as unaffected by the chaos of the move as possible. So we had her seizure bed and most of her toys packed, as well as a few other pieces of furniture. We also brought clothes, food, cleaning supplies, etc so that we were prepared here. When we arrived (just me and a sleeping Maddie) the landlord was in the garage still loading stuff into his car and it was clear that the house wasn’t really clean and ready for us. That was a big bummer. Then over the next few days, it became more and more clear that he really hadn’t done what was necessary to get the house ready to rent. Not only did we have a pretty serious bug problem, we had mice. And they were in the house. Yuck! The master shower leaked into the breakfast room and it turned out to be the shower pan so we were without a shower for two weeks before it was repaired. There was a crazy “power saving” system installed in the house that randomly turned off our appliances (like the water heater and AC!) during the day because peak electricity rates are more expensive. Thank goodness we figured out how to turn that off! There are quite a few more strange problems, but luckily now, I think (fingers crossed!) we have them all fixed and we can finally begin to enjoy living here. We truly love the house, or there is NO WAY I would have put up with all the drama we’ve had moving into it. Definitely a crazy move experience.

I also had a random medical issue pop up during our move week to add to the craziness. I was born with pre-auricular pits, but I haven’t had any problems with them since I was 14 years old. But sure enough, 20 years later, on my 34th birthday, which was the day our furniture was delivered here, I could tell it was infected. I made time for an urgent care visit the next day for antibiotics, but it unfortunately didn’t do the trick. By Sunday evening I was in the ER in the worst pain of my life. Since then I’ve had the infected one aspirated with a needle twice and lanced three times. Not fun at all. I ended up having to take pain meds for a few days, which was awful. I didn’t feel competent to care for Maddie while medicated, so thank goodness my mom was here to help with her during the move. I think all is well with it now, but I may have to have surgery in the future to get rid of them so this does not become a frequent problem.

Brandon has started his new job here and it certainly looks like it is going to be a very busy 3 years for him. I’m trying to look at the positives about it, so I’m going to hope it’s a great new experience for all of us. It is definitely nice to be in a big city for a change. We are going to need to take advantage of family time when we get it.

On the Maddie seizure front, not much has changed. We tried Vimpat, which turned out to be a really terrible drug for her. She has now been off of it for about two months. We have not been quite ready to start something new for a few reasons. First and foremost, I wanted to give her a break. She is on two other seizure meds, so its not as though she is on no medication. But trialing meds is hard on her. She always has side effects and her sleep is terribly disturbed every time. Because her seizures are so tied to her sleep cycle, if her sleep is disturbed, seizures increase. So it makes it very hard to tell if a new med is working. I’ve learned I have to be much more patient in titrating and weaning meds, because we can never see the actual result of the med changes until her sleep is back to normal. And this can take weeks. So each med change becomes that much more difficult and slow. We definitely still feel a sense of urgency with regard to getting her seizures under control. But we decided the break was necessary to really get a true reading of what her seizure baseline is right now. Plus with the move, we knew she’d be dealing with lots of changes and we didn’t want to throw another variable into the med trial.

The second reason for taking the break from trying the next med is that we plan to get a second opinion (or fifth!) on what to do next. We truly love her Neurologist, but at this point, I get the feeling he doesn’t think that any particular med has a better chance than another in being the next best choice for her. Which means he leaves it up to me to make a choice from the few meds she has left to try. And that is a really tough position for me to be in as a mommy. I like having a say, but I don’t want to feel like it is all on me. So now that we are in an area where there are more large hospitals to choose from, we will have her seen at Duke (I know, I can’t believe I’d let a Dookie help…..) to see if they have the same opinion as we are getting at UNC. We will also be getting her evaluated as a surgical candidate again. I have been dragging my feet about this because I hate putting her under anesthesia for any type of scan, but it’s got to be done.

Another important reason to have taken the break is that for the last few months, a pattern has emerged that has made seizure tracking more difficult. She will have a few good days (just 1 big seizure, and lots of little ones) followed by a few terrible ones (4-6 big seizures, and  head drops almost continuously while she is awake). We have not really been able to locate a cause for the bad vs good days, but I needed a longer recording period to verify that we really were seeing those variations. When trying out a new med, it’s really easy to have a few bad days in a row and want to throw in the towel. But now that I am sure that those bad days are happening anyway, regardless of whether or not we are making med changes, it will make it *A LITTLE* bit easier to be patient and give the new med a fair trial.

All that said, we are here, and pretty settled, and its time to get back to work. I was hoping to get in with the second doctor before we made the call as to what to do next, but I think we’ll go forward with something (though I’m not sure what at this point…..) and then see the doctor when they’ll actually get her in to see them at Duke.

Our next step for Maddie will be one of three things: 1) Try another anti-epileptic medication, 2) try a low dose long term steroid treatment, or 3) reduce the level of one of the AEDs she is on (Banzel or Clobazam) in an attempt to see if either is still working for her. When we weaned Vimpat, Maddie improved in quite a few ways and it was a reminder that sometimes these meds’ side effects outweigh their benefits. Though we know Banzel was working very well for her when she first started it, once seizures returned, we kept raising her dose in an attempt to get rid of them again. And that never happened. So it makes sense to try reducing it a bit, to see if seizures possibly stay the same. Then maybe we might get a bit more development. Decisions, decisions. I just wish I had a crystal ball and could know what would give the most benefit.

Maddie had a good year in school last year. While she undoubtedly enjoyed it, and got to know her routine much better, she did not make any significant progress academically. We have enrolled her in school here and she will go to a summer school program for 3 and a half weeks in July. I’ll go with her at first, until I feel the aide understands her seizures and how to keep her safe. We got her classroom assignment for kindergarten, and while it was for the most part expected, it is still a hard pill to swallow. She will be in the Intellectual Disability – Severe classroom. That is the class for the most severely disabled kids in the school system. I know in my heart its where she fits, but for some reason, I had held onto hope that maybe she’d be one level up. Its not that I want there to be other kids worse off than her, but it just feels sucky to know that there is nothing below here. That if things were to get worse, there is nowhere else to go. But what I need to concentrate on is that this isn’t permanent, that if and when she improves, we can move her up. We had the opportunity to meet her teacher for next year and she seemed really great. I look forward to working with them to come up with a plan that is safe for her and hopefully where she has a chance to have fun and learn.

So that is where we are. And as usual, Maddie is her normal happy self and she just makes me the happiest mama on earth. I just wish I knew how to help her more. That is one of the most frustrating things about epilepsy. When she had cancer, it was clear what we needed to do, doctors had a clear plan and there were no options. Now, the range of options is huge. And in some cases, the choices are left up to us. And that is a heavy load at times.

On that note, I have made a big decision regarding my fundraising for the Marine Corps Marathon. I originally planned to raise money for both pediatric cancer and catastrophic epilepsy research. But I have changed my mind. Both causes are extremely important to me, but I have decided to be selfish. I am going to focus all of my fundraising efforts during MCM training on Infantile Spasms (her epilepsy) research. And that is because if a cure were found, or new, better treatments, they could still benefit my amazing child. I feel like the window is closing and we need to get rid of her seizures soon or we miss the time when her brain is still flexible and able to make new connections. There is a greater sense of urgency for our family to have innovations in epilepsy treatments. So that is where I want to focus my efforts. I absolutely want to continue to raise funds for cancer research and I will hopefully still participate in the CureSearch Milestones walk and will raise money with a team for that. But for my Marine Corps Marathon training, it is Maddie’s horrible battle with epilepsy that motivates me. And that is where I want to focus my attention. This was a hard choice, but it is right for me right now.

So here is the the website and if you feel called to help, we greatly appreciate it. http://cure.convio.net/goto/MaddiesMarathon

Citizens United for Research for Epilepsy (CURE Epilepsy) has agreed to allow all funds I raise to be dedicated specifically to Infantile Spasms research.

I’ll close up with a few pics of our cutie pie!

Love to everyone!

Liz, Brandon, and Maddie

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Maddie’s Marathon

When we titled this blog years ago, I don’t think either Brandon or I had a clue what a “marathon” Maddie’s issues would turn out to be. We had thought of her fight against leukemia as a marathon in that the treatment is so long. We certainly didn’t expect the epilepsy diagnosis, and we had no idea that if Maddie won her battle against cancer that we’d be stuck fighting other different, and often more debilitating health issues for the rest of her life.

But it is what it is. And we battle on. Things haven’t changed much, if at all. We are still trialing meds, and have very few options left. She is still happy and precious and hands down the most amazing child I could ever have imagined having. But it still breaks my heart everyday to watch the seizures and know that they are robbing her of a normal life. I’ll give a more detailed update on what is going on in our lives in a later update, but I needed to get this out there because I am planning something important and I need to stop putting it off.

Many of you who follow this blog were part of our fundraising efforts for the CureSearch MileStones walk in Charlotte in 2008. That was right before she turned two and started having seizures, and sadly, that was the last time we did any fundraising. I am ready to change that and I decided that since I will run my first full 26.2 mile marathon this year, that I want to raise money in honor of her to give more meaning to my training and my race. I always think of her as my motivation during a race, but this time I’d like to make it more special and feel like I am really doing something to support the causes that mean the most to me.

Now that epilepsy is her main battle, that holds the place closest to my heart because it gets so little awareness, at least as far as how catastrophic it can be. Those of you who’ve followed us for a long time may remember my prayer that what we were seeing was in fact seizures, because I thought that meant it was something treatable. Not something that would steal her life from her and leave us with seizures daily over three years from when they first reared their ugly head. I still want to raise money for cancer research though, because in our case, we know that Maddie would likely never have developed seizures if it weren’t for the cancer, and the chemotherapy treatments which caused her neurological issues. If cancer treatments were improved, and more targeted to specific cancers, rather than so extremely harsh on tiny babies’ brains, this might not have happened to her. So I plan to raise money and awareness for both while I train for this year’s Marine Corps Marathon, http://www.marinemarathon.com/

I will raise funds for CureSearch, the fundraising arm of the Children’s Oncology Group, which still remains my pediatric cancer charity of choice. Their website is http://www.curesearch.org/ And I will raise funds for CURE Epilepsy, an epilepsy research group that allows me to target my donations toward particular types of epilepsy, so that I can funnel our funds to Infantile Spasms research. This is the type of epilepsy that Maddie has and it is one of the most catastrophic types and it is where I want my dollars to go. You can check them out at http://www.cureepilepsy.org/ So in an effort to keep things simple, I hope to raise money to support each evenly. For those of you who want to donate, I’ll be setting up a fundraising page in the upcoming week and I will link to it here when I have it done.

One of my fundraisers is going to be a T-Shirt and athletic shirt sale. I hope to get that up and running in the next few days. Because the race is in late October and November is Epilepsy awareness month, I believe the shirt will be purple, the color of epilepsy awareness.  I’m still working out the details, but there will be youth shirts, and shirts for both Men and Women, cotton tees or technical race shirts. My hope is that others of you who like to run races might wear the shirt during another race to help spread awareness. I am still debating whether or not to try to get sponsors who could advertise on the shirts, which would certainly help me to raise funds, but which would slow down the t-shirt design and ordering process. If any of you loyal readers have any thoughts on this, shoot me an email. The race is sold out, so unfortunately, I can’t really try to recruit more folks to run it with me. But I will be running it with many of my friends from Camp Lejeune, and hopefully Brandon too. It will be really exciting for me to get to run it with people I love, in support of my amazing kiddo.

If the schedule works out, we might try to participate in the CureSearch MileStones walk in Charlotte again this year. Now that we are living in Raleigh, the trip to Charlotte is much easier for us. I’d love to get a good size team together again for that and we could wear our shirts to that too. Though they’ll be purple for epilepsy awareness, they’ll have reference to her battle with leukemia as well.

I’ll be in touch again soon. And I’ll try to update the pics on the blog header too. Love to everyone!

Liz, Brandon, and Maddie