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

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22 thoughts on “It’s that time

  1. “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.”

    Beautiful!

    Praying for you,
    Jennifer

  2. Liz~ I am amazed by your strength, seriously amazed…I can feel in your words what a difficult and emotional time this, and you definitely have more on your plate than one person should ever have to deal with, no question!

    It sounds to me you are extremely blessed with an amazing husband/friend…I am sure you know the stress of a sick child can rip most marriages apart, so to have the strength you two have in one another is a gift. I am just so sorry you have to do this alone for now. I don’t have any great words of wisdom…I do know what it FEELS like to be all alone, and to be doing the sick-kid-thing all by yourself…not fun…but it’s temporary, right? You have the love and support from all your fellow “bloggy” friends…just a click away!

    Will keep your family in my prayers, and the keto-diet…we did that….praying it is your miracle ahead, just waiting for your sweet girl!

    Hugs…Deb

  3. Maybe one of the most amazingly genuine blog posts I have ever read. I feel for you, even though your Strength Meter has gone into overdrive, and can feel the distance you feel. I’ll be thinking about him about as much as I think about you and Maddie.

    All three of you are amazing individually. And what a team the three of you make together. But, hopefully the time will pass quickly and you guys can talk some. Can’t imagine what he feels like, what you feel like…well, I can imagine, but I’ll never know.

    Your online family is here for you, such as we are… 🙂

    I hope the Keto diet works for you guys. I really, really do.

  4. Liz,
    Thank you!!
    You are such a strong woman, mom and wife and I admire you. I hate what you are going through, and have been through and I think about you and pray for y’all all the time. I will continue to keep you, Maddie and Brandon in my prayers.
    Nikki

  5. What an extremely emotional post and I was only reading it. You shared a glimpse of what you are going through at the moment but I cannot even imagine what it must feel like on a daily basis.

    Sophie was on the keto diet for 6 months. We travelled to Johns Hopkins to start the diet. I have read the books. So if you need anything just let me know. I would recommend putting her on Cytra-K (especially if she is on Zonegran) and NanoVM. Sophie took both of those. And as overwhelming as the diet may seem, it actually becomes routine. I was able to pack meals so we weren’t tied down to the house.

    What sweet, precious pics…you have an absolutely beautiful family.

    Love and hugs…Elaine

  6. So tough. I can’t imagine doing this without my husband…but I’m a little codependent as it is. I do know how you feel though. As if no one knows what you are going through. With Reagan being at the worst end of the infantile spasms spectrum, I know that feeling. We too thought, she’ll be one of the lucky ones, we’ll get her seizures under control and move on with our happy, normal life. Things have certainly not gone as planned. Reagan’s seizures and development have been in the worst case scenario category from the start. And I think it’s harder when it’s your first and only child. You lose all the normalcy to your life. It’s tough. I will certainly keep you and Maddie in my prayers.

  7. Liz – what a beautiful person you are. This was a very emotional post for me to read – you are amazing in relating what is going on and how you are feeling. The photo of Brandon kissing Maddie brought tears to my eyes. I can’t even imagine the pain you are experiencing being a part from Brandon and, at the same time, using all your energy trying to do what is best for Maddie. I admire you and Brandon so much. My prayers are for Brandon’s safety, you to continue being strong, and Maddie to be healed. As always, I love seeing new photos of your precious Maddie. She looks like she has grown taller and is so adorable.

  8. Liz, thank you for sharing. No one can know how difficult this is for you. Your strength is beautiful. It is true, your on-line family is here for you. If you need a Jvill family, just call, write, text. xxoo, teri

  9. Hey Liz
    I know I haven’t said much all this time. But right now
    I just want you to know that I have never stopped
    praying for Maddie, you and Brandon. I truly know
    of nothing that breaks my heart more than what y’all
    are going thru. I guess I just want all of you to know
    that I pray hard and love all of you. I know Bea
    and Lance are truly a blessing to you. And they are
    in my prayers also. God bless you all. Hang in there
    as best you can.
    Robin

  10. I wish I had the perfect words for you to ease your worry and fear of the uncertainty of where your life is right now but any would probably fall short.however.I do know from reading your blog that you are extremely strong and will face this as you have faced head on leukemia AND Infantile Spasms.You are an amazing mom and an amazing wife and together,this amazingly strong family that you have built and keep solid,through the most difficult times, will most definitely endure.And can I say,a very sincere and heartfelt thank you to you and Brandon for the tremendous sacrifice you have made for the sake and safety of my family and our country.

    Sending you and Maddie tons of love in Brandons absence.

  11. Thanks for the heartfelt post. You will be in our thoughts and prayers through this tough deployment. Maddie is blessed to have you as her mommy. Hang in there and keep fighting for your little girl!! We hope the keto diet works,

    Kelli and Ruby

  12. While I was reading, I kept thinking that this was the most moving post I’ve read. I can see I’m not the only one after reading what some of the others had to say. This was truly beautiful because it was truly honest…and real. As most of us will never fully understand what your family has endured, this post brought me just about as close to understanding as anything could. Infantile spasms are just simply brutal. Cancer is brutal. Sending a spouse off for deployment is brutal. Having to deal with all these in the span of two years is unimaginable. I’m completely in awe of your strength.

    Highest hopes for great success with the Keto.

    (((hugs)))

  13. Thanks for the update and honest words!! I can’t imagine doing it all alone…you’re incredibly strong! I’ll be thinking of Maddie while you’re starting the diet. She deserves (and you) a break!

  14. Liz, Your faith and strength as always will sustain you. You are a hero to all of us. Much prayers to Maddie, You and Brandon. May God watch over all of you.

  15. Hi Liz. I found and have been following your blogsite from Trevor’s. Danielle and I have become “cyber friends.” Your daughter is so beautiful. I can’ timagine having to deal with cancer and seizures. You are one tough mama!!!
    I feel for you and pray for your family often.

    My daughter, Hannah, has epilepsy, hypertension, and alveolar hypoventilation syndrome. I started her blog when we were fundraising to get her a seizure assistance dog. We have Blitzen now and he is amazing! He has really been life changing for Hannah and our whole family. Though are stories aren’t alike, we share a common bond, that both our husbands our deployed. My husband has been in Iraq since Jan 09. (he has been gone training since last July though. He is supposed to be home by the end of the year (although, I am not holding my breath). We were able to see him a month ago when he was home on his R & R.

    I will continue to pray for you. I know how hard it is living day to day without daddy home. Best wishes with the Keto diet. I hope and pray that Maddie is able to have seizure freedom….

  16. Thank you so much for sharing this emotional post with all of us. While we have battled IS, I feel like it is nothing compared to what all your adorable Maddie has been through (&you & Brandon too). I just can’t even begin to imagine how you have coped from day to day. I know you just kind of take things day to day like we all do. I pray that the diet works for you!! It is easier once you get the hang of it. A little boy in Connor’s class jsut started it in September and has seen a good reduction of seizures from it, so there is HOPE!! If you have any questions about it or want to vent about the CMC staff…I’m here!

    Those pictures of Maddie were Absolutely adorable!!! She looks just so lovable. I love her hair too! Hang in there & just remember your online family is always here for you!

    {{{{{hugs}}} Monica

  17. I will be hoping that Brandon has a safe deployment. I can’t imagine how hard all of this is.

    Best wishes with Keto. Please explain to Keto that I have high hopes and I don’t want to be disappointed!

  18. Liz –

    Not a day goes by that I don’t think of the three of you. As lucky as you are to have Maddie for a daughter and Brandon for a husband – they are even luckier to have you loving them every day!

    Love,
    Carrie

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