Busy, Thankful Birthday Month

Life has been busy lately. Cooking takes hours a day and Maddie is no longer sleeping at night. Seizures are slightly improved, but she has not felt good in a couple of weeks and is really lacking energy right now. We are working on this diet (and all her medications) to see if we can get her feeling better. So life is crazy for us as usual.

November is a month of birthdays for the people I love. Today is my sister’s (Happy Birthday Kathryn!) and last weekend was Brandon and Lance’s birthday. There are honestly too many to mention, but most important to me is that on the 30th, Maddie turns three! I hate to admit it, but I actually dread it. I had so hoped that we could turn things around by this birthday. It is a little tough to celebrate a birthday knowing that your child is worse off developmentally this year than on her last birthday. But such is life with catastrophic epilepsy. And so I will suck it up, shake it off, and hope for a really fabulous 4th birthday. Because she really deserves it.

We spent last weekend at the beach at Figure 8 and had a fabulous time. It’s amazing how the beach can just make everything in life seem better. It is alot of work to travel on the ketogenic diet because the stuff that makes my kitchen complete now is not common in most kitchens. So I have created a traveling kitchen of sorts. Although packing it all up is a major pain in the hiney, it was worth it for the time at the beach. Which we hope to do again soon. We are currently back in Charlotte as it was time for Maddie’s monthly oncology follow up appointment as well as her first keto diet follow up.

We have already had her counts checked (paranoia still lurks nearby)but our actual doctor appointment is Monday. According to the counts from Thursday, Maddie’s leukemia is still in remission. We are still waiting for some blood results that relate to the keto diet to decide what our next move there is. On the subject of counts and cancer, I found an omission in my last post here pretty startling. I posted that update the week after the 2nd anniversary of her cancer diagnosis. And I meant to mention it in that update. But it slipped my mind.

I would never have thought that were possible. That her leukemia could slip my mind……Admittedly, we have plenty of other crap to worry about right now with the seizures, and Brandon deployed, and this crazy diet, but the fact that the important milestone of 2 years past her cancer diagnosis could just slip my mind is pretty cool. Of course, she is nowhere near out of the woods. But it feels nice to realize that leukemia isn’t the first thing I think about most days.

I meant to try to keep this short but, in case I don’t get around to posting again before Thanksgiving, I want to mention how incredibly thankful I am for the life I live.

I live in a free country, made that way by the sacrifices of many people who have fought and died for that freedom. Hearing about Brandon’s experiences this deployment helps reinforce in my mind how lucky we are to be citizens of this great country. I am incredibly aware of the sacrifices families all over the country are making right now, missing their loved ones as the holiday season approaches. I meant to post earlier this month to thank all our Veterans and their families. So thank you!

I am also thankful for the financial security that I am lucky enough to have because of my wonderful family and my husband. I can only imagine how our stress would be magnified if it were accompanied by financial hardship because of the catastrophic illness of my child.

I am thankful for the amazing people in my life, most importantly my family. The support that I have had through the last two years is more than any person could ask for. It is astounding to me how much support I receive from my Mom and Lance. And it only recently dawned on me how difficult it is for everyone else in the family, having to deal with the isolation that I have asked Mom and Lance to stay in along with us to try to keep us all healthy. My siblings and step-siblings have in a sense lost these years with my parents because of their vigilance about germs and trying to stay healthy. And none of them have complained about it (at least to my knowledge). I had really hoped to “lift the ban” before these holidays, but it probably won’t be until after this nasty flu season.

And finally, I am most thankful for my husband and daughter. Without the support and love of my husband these two years would have been completely impossible. And Maddie inspires me every day. I am so thankful she is here, and despite the enormous challenges she faces, she does it mostly with a smile. Cancer and epilepsy has taken alot from us, but she is the most precious gift I have ever been given. These experiences, while often quite terrifying, have made me a better, stronger, more loving person.

I leave you with a few pics of our amazing child.

I know, I know…..her hair….. My late Gran (whose birthday is also coming up….Happy Birthday Gran!) would be saying, “Get that hair out of her beautiful eyes!” I wish I could, she hates hair clips and I refuse to cut it again. I’ll figure something out. And isn’t that smile so goofy? But the great thing is, she smiled when I asked her to, and that is not something that has happened in a while for us.

Happy Thanksgiving everyone! If there is any lesson to be learned from us, be thankful for the good things in your life. I know I am.

Love to you all,
Liz

Moving along

Life is slowly moving along.

Brandon has been gone for over two weeks now. We have heard from him to know that he is safely at the location where his Company will be spending the majority of their time during the deployment.

I try to be super careful about sharing details about where he is to protect operational security, but I have a quick story to share that may give you an idea of how tough this can be. Last Monday, the day we were due to report into the hospital to start the Keto Diet, I had not heard from Brandon in a while and I knew he was supposed to be flying into his new location by helicopter. I was anxiously awaiting news that he was there safely as I personally am scared to death when he is in a helicopter (especially where people like to shoot at them). It was time for me to get in the shower. I checked my email one last time and saw nothing from him. So I decided to do a quick google search, just to make sure there was nothing in the news. And there it was “Three American Helicopters Crash….” And all of a sudden I was brought back to those terrible moments during his first deployment when I would hear a news story and freak out all the way until the next time I heard from him. About to vomit, I left Maddie to play with my mom, got in the shower and began to cry and say my prayers. When I got out of the shower, I checked my email again and found this short but incredibly comforting email from Brandon, “In place.”

And so, I relearned the lesson that checking google and watching the news is no good for me. There is no need to get that horrible feeling that makes me want to vomit. So I am trying to live my life, and get news of Brandon from Brandon only. And if all he tells me is that he loves me and he is safe that is okay. The rest I can hear about once he is home safe with me.

We began the Keto Diet last week and only spent two nights in the hospital. We have not yet seen the miraculous results we were hoping for from the diet, but we are seeing some improvements. The biggest change is that Maddie is basically sleeping through the night for the first time since the seizures started. I feel like a new woman. I had honestly forgotten what life is like when you’ve had a good night’s sleep. Amazing!

The other positive changes we are seeing are in Maddie’s cognition and level of interaction. We have reduced her dose of Zonegran quite a bit, so we are not sure if all the changes are from the diet, or because of med changes. Either way, the changes are great. She is much more verbal. She can answer simple questions. She can sometimes tell me want she wants.

For example, yesterday she was was giving me nose kisses (where we rub our noses together). I asked her, “Who gives you nose kisses all the time?” and she responded, “Dada.” That is their game they play.

When she got bored of playing, I asked her, “Do you want to go shop-shop?” Her response was, “Yeah” while nodding her head yes with excitement. She is just a perfect little girl.

We do have some challenges on the diet. She loves the food, but does not want to drink as much as she is supposed to. This results in me having to hold her down and give her water one mL at a time to try to get her daily allotment in her. Sadly, I have found that she is most receptive to this while she is disoriented during clusters of seizures, so while she seizes I get in as much water as I can. I wish it were not this way, but it has to be done. One big risk of being on the diet is kidney stones, and that is also a side effect of the medicine Zonegran. So it is very important that I stay on top of the fluids. I am trying very hard to do so. Despite my best efforts, when testing her urine to see if she is hydrated and ketotic enough, I have found blood in the urine. This is a precursor to kidney stones, though it can also be indicative of a urinary tract infection (for which she has no other symptoms) or could even be caused by small breaks in the skin from diaper rash. Her hiney is usually pristine (we are big on hygiene here), but the cotton balls which I have to use to test her urine are irritating her skin. Sometime you just can’t win.

Maddie’s lack of desire to drink may stem from a little bit of resentment about my finally weaning her from nursing. We had a pretty rough week here weaning just before the start of the diet. But the tantrums have passed; she still asks for it from time to time, but no longer throws a fit when I say no.

So until her urine stays clear of blood for a while, we are not headed back to Camp Lejeune because we need to be here (in Charlotte) where we can monitor it more closely. With the swine flu craziness everywhere, we are really trying to stay almost in isolation (it is tough when you have to go to the doctor or hospital!) We would love to be back in our home at Lejeune so we could be doing all her therapies, but there is some risk of sickness from therapists who have to work with other kids too. I am not really sure how I want to handle that yet. Plus, here in Charlotte I have lots of help from my Mom and Lance so that I can spend hours a day preparing her meals. For a mom (me) who already far preferred takeout to cooking a meal, this is alot of work. For those who do not know much about the diet, each of her meals is prepared by me weighing each ingrediently with a precision of 0.1 grams. If cooking were ever fun, this would certainly take the fun out of it. After she went to sleep last night, I spent 2.5 hours making just 6 meals. She eats 4 meals a day, so there is alot of time spent in the kitchen. But to see improvement instead of regression for the first time in months…..it is worth it to me.

So the diet has not had much of an effect on the seizures yet, but all the other changes are positive, so we are as enthusiastic and hopeful as we have ever been about any treatment for her seizures.

Love to everyone,
Liz

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.

Saying goodbye (he left in the middle of the night)

Last minutes together at home

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.

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.

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.

 

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

Refreshed

We just had the best vacation since Maddie’s birth. I could not have dreamed up a better place for us to go. First, and foremost, I want to thank our gracious host. Please know that we feel incredibly fortunate for the opportunity to enjoy such an absolutely fabulous home.



We took tons of pictures because we have never been in such a beautiful and fun setting. The pictures honestly don’t do it justice either….There were bald eagles flying overhead, allligators and egrets in the lake bordering the property, and a beautiful golf course within view. And the inside of the house was spectacular too. Can you tell I enjoyed it?

Swimming in the Mickey Mouse pool

Maddie and her daddy on the little slide

Fun in the boat

Simply amazing

Maddie's favorite, the Mickey Mouse pool

So you can see how amazing this place was. The big slide was incredibly fun, and so fast. Thank goodness I decided to try it alone before taking Maddie on it. Maybe in a few years….



Oh yeah…..the Ball. We had a really nice time there too. Maddie had a great time with my mom and Lance. We stayed gone for almost 5 hours….. And she did fine. So I guess we will have to go an a real date, by ourselves, sometime soon, now that we know she can handle it.



We did not take pictures before the Ball, because I had forgotten that getting all dressed up takes some time, and we were running out the door once I was ready. But we got a few once we got home.

Could not get Maddie to smile....

I missed my sweet pea

We just had the most fun and relaxing time. I left there reenergized and ready for the weeks ahead. It didn’t hurt that Maddie’s seizures have reduced in duration and intensity quite a bit while we were there. It appears that the Zonegran may actually be doing something. We upped the dose again today and are hoping to see even more improvement. So we wait…..



Brandon’s leave time before deployment begins this weekend so we will be spending some time at Kiawah and in Charlotte. I’ll end this post with a few more pictures of our amazing weekend.

Catching a nap in the pool

Maddie and my mom enjoying the putting green

Love to everyone,
Liz, Brandon, and a very happy Maddie

Myrtle Beach Bound

Brandon’s annual Marine Corps Birthday Ball is this weekend. We are having it a bit early because they deploy before the actual holiday. His Battalion Ball is in Myrtle Beach at a nice hotel and should really be a fun event. A great friend has set us up to use a family home there where we will stay for the weekend. The Ball is actually Sunday night so we are going to be down there from Friday until Monday. My Mom and Lance will meet us there to watch Maddie while we go to the Ball.

If you are not military, you would not know the significance of the Birthday Ball, but the Marines take this celebration seriously. We will get all dressed up in our finery. Brandon will wear his dress blues. In a normal year, by now, I should have spent countless hours trying on dresses. Not so much this year, but luckily I have lots of great dresses from my college years that I haven’t worn around this crowd. It has been a loooooong time since I last got all dressed up, but it should be fun.

Sadly, the last time I was supposed to get all dressed up was for the Marine Corps Ball in 2007. The day before the Ball (which my mom was also driving down to babysit for) Maddie was diagnosed with leukemia. So I am trying to ignore the similarity and get excited for my first night out with my husband since her diagnosis.

Yes, that is what I said.

I have not gone out with Brandon and left Maddie since her diagnosis. And, to make it worse, even before diagnosis, we had only left her once so he and I could go to a wedding when she was 7 months old.

So even though lots of other people will be there, we are going on a date this weekend. And it is going to be fun. I know Maddie will be in great hands. My mom has held her through a cluster of seizures before, and I know she and Lance will do everything they can to keep her happy (and hopefully get her to bed). There are lots of tricky things to deal with since Maddie normally sleeps with me and still nurses to sleep. Hopefully she will just wear herself out and fall asleep on my mom.

As far as Maddie’s seizures go, we are titrating up on the new med Zonegran. Her seizure activity decreased slightly when we first started the drug, but I can’t say that we’ve seen much improvement since then. The side effects of this one have been pretty rough for her so far: lack of coordination, trouble walking, excessive sleepiness, no appetite, slurring of speech, and to top it all off she is having what I’m calling night terrors, where she wakes up screaming bloody murder for a few minutes. Those bear an eerie similarity to the episodes we saw which led to the diagnosis of leukemia. So I’m experiencing a little bit if Deja vu all over again with the Ball this weekend and the nighttime wake ups. I am trying to keep my cool because we saw these night terror like episodes on Topamax too, which is an anti-epileptic drug which has the same mechanism of action. So I’m hoping (and praying!) that it is just one more drug side effect.

Can you even believe with all those side effects that we would keep increasing this medication? Some of the effects should lessen over time as her body gets use to the med and the dose. But, it is so hard as a parent to watch your child go through this, knowing that soon we may give up hope for this drug too. But our next step, the ketogenic diet, requires a 3 month commitment and is very very strict and complicated. But if Zonegran does not work, keto diet, here we come! I honestly have more hope for the diet than anything we’ve tried other than steroids. So as big of a step as it will be, we are ready for it. Of course, we’d still love it if Zonegran knocked out the seizures first.

So despite no major improvements, we have had a good week here in Camp Lejeune. Maddie just adores getting to be with her DaDa so much, and I’m enjoying it too! Having all three of us under one roof for more than a few nights at a time is awesome. We are even all sleeping together. It can be a bit crowded since Maddie hogs the bed, but we’ll take it. And we have a fun weekend planned. Then we’ll be back here together for another week. After that his pre-deployment leave begins and we may head further South to Kiawah to see my Dad around his birthday. So we have some good things planned for the next few weeks and we truly hope to enjoy all our time together with no medical emergencies. That would be very cool.

Love to everyone,
Liz, Brandon, and Maddie

Seizures, seizures, and more seizures

I usually try to be pretty positive in my postings here. That is perhaps why I am just posting today rather than over the weekend.

After arriving back in Charlotte Thursday, I had put back on my “I can do anything” face and was ready to start our next drug. Late Friday into Saturday, Maddie had clusters of seizures of varying intensity every time she was awake all day and night. Her super strong seizure rescue drug didn’t work. It gave her a 45 min nap and then she woke up clustering again. And for some reason the med we wanted to start her on was nowhere to be found (we wanted the brand name Zonegran in a small dose pill).

By Saturday evening the Zonegran was found and we also added in a little Klonipin just for good measure. I’m being a bit flippant and I think maybe the super high level of seizures lately has got me on edge. I came home from Detroit focused on the road ahead, and I got quickly derailed by a dramatic increase in seizures.

We are sticking with our plan though, and though I cannot say it has anything to do with the Zonegran, her seizures have been slightly improved yesterday and today. And we have not had a repeat of the Fri-Sat marathon of clusters. I’ve already stopped the Klonipin because it dopes her up terribly. I think we are back to the same seizure schedule we had pre-Detroit, which was not great at all, but is a major improvement over this weekend.

We will increase Zonegran this Saturday and the following Saturday and hope for good things. But if they don’t come, the ketogenic diet is waiting for us in the wings. It is an extreme commitment and has some side effects, but if it works it will be worth it.

Brandon will finally be home from California this weekend. I think that will improve my mood mightily. It has been a long five weeks. And seeing how long it has seemed with the seven month deployment looming……not encouraging. I try to remind myself it could be worse.

Maddie and I are still in Charlotte after returning here from Detroit. We saw her Oncologist Wednesday and will go back there tomorrow for an infusion of IVIG. Her counts yesterday were pretty normal, but her immunoglobulin level was very low. That is a component of blood which measures how much immunity she has to keep her from catching things. So we’ll get a refill tomorrow before heading back to Jacksonville. We also had a long appointment today with the dietician at CMC who will oversee the ketogenic diet if we go that route. With that out of the way, all we have to do is pick a date to go inpatient to start the diet. Yes, more hospital time. Perfect.

On a related note, swine flu is causing death in a disproportionately high number of young children with epilepsy, cerebral palsy, and other neurological disorders. For more info read this CDC release. So we are going to be laying low again for awhile. I am still trying to decide if the vaccine will be safe for Maddie (some vaccines are contraindicated for children with seizures). Even if it is safe, the vaccine only works if her immune system responds appropriately, and that does not always happen in kids who have recently stopped chemotherapy. So we may hibernate until this flu season has passed. She has not weathered all this to die of the flu.

I will try to have a more positive message next time I post. Especially since we actually have some fun plans for next weekend. I think I just need my hubby back.

Love to everyone,
Liz

Back to reality

So we are back home (in Charlotte). And happy to be here, even though Maddie is not a candidate for surgery. I guess I am a little disappointed, though not nearly as much so as I expected.

I know if she HAD been found to be a candidate for surgery, I would have probably been rejoicing it right now. But I have to admit I am a bit relieved. I was scared of the idea of surgery, and even more scared of having to make that choice.

What it means for her right now is that we are no closer to finding a solution for her seizures. But we did really like the doctor there and he did give us some ideas as to what we should try next. He also seemed to put a positive spin on it all, and he seemed to think that Maddie’s spasms would change into another seizure type (this option ranges from okay to very bad depending on what type she ends up with) or that they may just go away altogether. This is not news to me, but for some reason, he just seemed so sure of it, it made me feel better today.

I am just mentally (and physically) exhausted right now. But for some reason, I feel a sense of relief. Partially because he spent so much time talking about how he liked our local Neuro and that he agreed with all the steps we’ve taken thus far. And partially because now I know I’ve done all I could do, that I’ve exhausted the options available to me.

So our next step is to try Zonegran which we never gave a fair trial. If that doesn’t get her seizure free, we will try the Ketogenic diet. We have been interested in the diet for awhile, but our hold-up has been that she is still breastfeeding. We will have to stop that, which is certainly okay at her age, but I have held onto it because of the fear of her cancer relapsing. Nursing has provided her (and me) so much comfort during all of this, and the idea of facing a bone marrow transplant without being able to nurse her makes me sad. But the ketogenic diet shows alot of promise for lots of kids with epilepsy. So if it comes to it, I will wean my little girl.

And for those who care about the details: the FDG PET showed diffuse hypometabolism of glucose throughout the entire cerebral cortex, so there was no sign of a focal point where the seizures originate. The FMZ did suggest a focus in the left hippocampus and temporal lobe. However, because the EEG showed some spasms originating from the left but others originating from the right, they did not feel there was enough evidence to provide any certainty that the left hippocampus was truly the source. But again, down the road, as the seizures change, it is possible a focus will emerge.

So we are back to our reality of trying meds and hoping and praying they help. But I am committed to finding something, and at least I know we tried.

And one more very important thing: Our IS buddy Bennett had a temporal lobectomy today. He is resting in the PICU now and it sounds like things went well. They removed his cortical dysplasia and a brain tumor which they believe to have caused his Infantile Spasms. Please pray for a smooth and speedy recovery for him and for his parents’ strength and patience during this tough time. We hope this will give Bennett a chance at a seizure free life.

Love to everyone,
Liz, Brandon, and Maddie

Two down, two to go

We are back at our hotel after a grueling two days. Maddie was truly put through the ringer. As a mom, it is so hard to know that I chose to come here and put her through all this testing. She has just had too much stuff done to her and I wish there were a way I could protect her from it all.

That said, we are done with the worst of it. She had hundreds of seizures on the overnight EEG, so we feel sure they should have some good data there. The biggest hurdle today was getting a good IV line in her. They had one put in upstairs before we went down for the PET scan, but by the time they were ready for us downstairs, that IV was no longer working. It took us awhile to get another line started, so Maddie was absolutely screaming and sweating by the time they injected the tracer. Then from the stress of it all, she had a huge cluster of seizures during the uptake EEG. She then continued to have seizures while sleeping in the PET scanner. She had not slept at all last night so after the PET scan was over she just did not want to wake up. She slept off the sedative most of the afternoon, so it could be another interesting night. She has to begin fasting in the middle of the night again for the PET tomorrow morning.

So we have another PET Wednesday, which means starting another IV in the morning. Then we will return to the hotel and maybe even venture out and see something other than the inside of the hotel or the hospital in the afternoon. Then Thursday morning we meet with Dr. Chugani to get the results of all the testing and see if surgery might be a possibility for Maddie.

Now that I am here, I think I am getting my hopes up that he will in fact say she may be a candidate for surgery. I had tried to keep my expectations low, because I hate to be disappointed. But I just think that I couldn’t have put her through all this if I did not have hope that it might lead to a better outcome for our little girl. Either way, it was something we had to do to try to answer all the “What Ifs?” in our heads. I think that at the very least we will get good information about our next steps in this fight to get her seizure free.

So keep her in your prayers please as she undergoes more anesthesia and testing and as we get the results.

Love to everyone,
Liz

*random note* for anyone interested, I finally added a link to a video of her seizures on the main photos page. If you click on the Photos tab at the top of our site, the link is on that page.

A Day in the life…..

Rocking out to some good eighties music, I drove my SUV behind a convoy of Humvees, mesmerized by the beauty of the illumination flares dangling in the air above training areas in Camp Lejeune at midnight. I was making laps around tactical training areas trying to get Maddie to sleep (the vibration of the car has been soothing lately) and I got to see some of the training going on. The way the flares hang in the air lighting the battlefield is beautiful yet so scary to me. It conjures up pictures of things I don’t really want in my head as Brandon prepares for another deployment. It is nice to be back in Lejeune though. I feel reconnected to the Marine Corps and our old life.

I finally headed back towards home when she had been snoozing about 15 minutes. Unfortunately, a cluster of seizures woke her just as we were pulling back into our neighborhood.

We got some sleep during the night, and when we woke up I packed the car yet again for another trip to Charlotte. We will fly out of the Charlotte airport for Detroit Monday morning. I packed the car while Maddie slept all morning in my mother’s lap (this may play in to why she isn’t sleeping at night….)

Brandon called as we were just prepping to lock up and jump in the car. The five minutes I got to talk to him were spent reviewing the details of our will that is being revised in preparation for the deployment. And discussing that we will be filing a grievance against the insurance company when I have time to think about it after the trip. They denied covering our visit up there so we had to switch plans in order to see the doctors we want to see (with additional costs, of course). Our insurance is still so good compared to most people’s, I feel silly even whining, but it is the principle of it that is really irking me. Plus the fact that I’ve wasted time I don’t have jumping through hoops for them. Anyway, moving on….

Driving back to Charlotte I had too much time to think. And I am trying to think about anything but the upcoming week’s testing and the possibility of brain surgery. And the even scarier possibility that brain surgery won’t be a possibility for her. And so I reflected on just how odd a typical day is for me.

You’re jealous, I know…….

Love to everyone,
Liz