Sunday, March 18, 2012

March Madness for sure!! A quick update. Hannah started the Trileptal (anti-seizure drug) about 10 days ago. The morning she started the pills she had already had two eye episodes. After starting the Trileptal, she has had NO episodes!! We were very shocked that the medicine would work so quickly. In fact, most of the doctors didn't think it would work at all, but acquiesced and gave it to me anyway.

We have been watching her closely for any symptoms from this new medicine, because some of them can be quite serious. She has had a few headaches lately, and seemed more fatigued than normal, both which can be side effects from the medicine. She had been complaining also since yesterday that she really didn't feel well. She stayed home from school one day last week. We realized this morning that she hadn't taken her regular anti-nausea pills the last 2 days!! So, we got her back on track with that today and hopefully that won't be an issue any longer.

**Update** Hannah just came in to let me know she had an eye episode. This is the first real episode she has experienced since starting the Trileptal. I wonder if her body is adjusting to the medicine already. We are supposed to double the dose this week, but I am not planning on doing that, considering how well it's working already. We will take her in in about a month to have her sodium levels checked. A side effect of this medicine is lowered sodium levels, which can be a serious condition. However, the dose she is taking right now is very low, so it would be unusual for her to experience a drop in her levels.

It's kind of a catch-22 situation. On the one hand, we are happy that we have found something that stops these eye episodes for Hannah. On the other hand, we don't really want her to be yet another medicine, especially an anti-seizure medicine. For now, we'll keep her on the medicine and see how she continues to tolerate it.

Other than the medical update, we've been keeping busy as usual. We threw a surprise birthday party for Colby on Friday, who turned 15 and boy was she surprised! It was the best party, about 30 kids or so attended and she really had a great time. Don't think I'll be able to top that one for quite some time!

It's lacrosse season in the house now, and both of the girls are playing. Colby made the varsity high school team this year and also plays on a travel team (and Dave's an assistant coach for the team). Hannah's junior high school team will start next week with practices. We love watching both of them play.

It has not been so good lately on the cancer front, with many of our little friends relapsing or dying. Just a few days ago another little boy from Iowa that we had come to know and love died from the spread of his medulloblastoma. He was 7 years old. Just heartbreaking. We continue to hope and pray for all of them.

Back to the real March Madness...the games! Go  Hoosiers!!

♥Kim

Monday, February 27, 2012

Has it really been a month since I updated Hannah's site? Seems like so much has happened since then. Hannah remains pretty much the same, physically, since my last update, although we have been trying different medicines and strategies to see if anything stops her eye episodes.

Earlier in the month, we took her off her anti-nausea medicine completely and replaced it with another medicine she had been on previously. The first few days after removing the medicine, Hannah only had about 2 episodes per day. I thought maybe we had found the answer! But, after those first few days, she began having more episodes, leveling off at about 4 per day. So, they didn't go away.

We initially started this new medicine at a higher dose than normal. However, this medicine is not only an antiemetic, it's also prescribed for anxiety. At the dosage she was on, it commonly causes tiredness and irritability. Oh boy, yes it did. After two days I contacted the doctor to let him know this dosage would not work for very long. I could barely get her out of bed to go to school. For the rest of the day, she was very irritable, irrational, and hostile at times. When she wasn't hostile, she was crying.

We cut the dose in half to see how that would work. Initially it was acceptable, but soon after it was evident that she wasn't feeling well. She had two mornings where she was standing outside the car vomiting, just like the old days. It wasn't good. I would have loved to have kept her on this new medicine, at the lower dose, but it just wasn't working for her.

Throughout all of this, the change in medicines, her eye episodes have gone up and down, but remained overall consistent at around 4 per day. Our next step is to put her on Triliptal, and anti-seizure drug. This drug, is meant specifically for partial seizures. But, the doctor didn't want to start the Triliptal without getting her nausea under control first. However, we can only do this one step at a time. This week, the doctor put Hannah back on the Kytril, the drug that she has been on for quite a while. Our trial did not show that the Kytril was causing the eye episodes, and she obviously needs it to control the nausea. On Saturday Hannah started the Kytril again. On Saturday Hannah had 7 eye episodes. On Sunday, Hannah had 5 episodes. Today, she had three.

Go figure. This thing is a crazy roller coaster ride for her. It's almost difficult now for her to count them during the day because she is so used to having them, and just going on with her day. These episodes are like a normal part of her day now, almost like counting how many times you breath or blink your eyes. I taped an index card to her planner, and she marks down when she has an episode during the day at school. This is the best we can do, and it's probably as accurate as it can get.

We are tracking her episodes now for a week, then will let the doctor decide when and if to start the anti-seizure medicine. That's where I feel like we're headed, but looking at the side effects of Triliptal, some of them are quite scary. I know that the drug companies have to list everything, but it's a bit daunting to see them all on paper.

So, after our own one person trial, we seem to be no closer to anything. Colby asked Hannah tonight, "what do you do if you have an eye thing during lacrosse?" Hannah just casually replied, "duck."

I did take Colby and Hannah both to the orthopedist last week, Colby for a slight scoliosis and Hannah for her ongoing bone pain, but that's a story for another post. I'm sure you can only handle so much medical talk at one time. Suffice it to say that both girls thought the doctor "didn't know anything." That pretty much sums it up!


♥Kim

January 30, 2012

Hannah before diagnosis

Five years ago today, seems like it was just yesterday sometimes, Hannah was diagnosed with a brain tumor. It was a Tuesday, January 30th, 2007. The day started out like a "regular" day for Hannah, she didn't feel great when she woke up, although I don't think she actually threw up that morning. She had been declining all weekend, and we had called her pediatrician and I remember leaving a desperate message saying "do something, we know something is just wrong with her." He scheduled an MRI for Tuesday, and an appointment with a neurologist for later in the week (I think, we never made it there). So Tuesday morning, 9 am we went to the hospital, unprepared for the IV stick she was going to get during the MRI. I sat in the other room with the tech as he looked at the pictures when they came up on the computer screen. I know how unusual this now. I  was asking questions like the whole thing was no big deal. I do remember asking him "can you tell when someone has something? Can you see it?" His response was "I have been doing this for over 30 years, and I know when I see it." He was probably screaming to himself "I SEE A HUGE MASS IN THIS LITTLE GIRL'S HEAD." I remember him coming out after the MRI to hand me a disc, he shook my hand and said "good luck." He knew, I know he knew.

After brain surgery

So after 5 years, I have learned a lot about a lot of things. I have learned that the human body is resilient. I saw Hannah and so many other kids go through things you can't even imagine and I can't even describe. I saw my daughter come out of major brain surgery and look like someone I didn't know. Wasn't prepared for that. Wasn't prepared for much of what happened on this journey. But with the many many bad things like paralysis, surgeries, mutism, screaming, crying, radiation, skin burns, vomiting, wheelchairs, incontinence, blood shooting out from her head across the room (not exaggerating here), chemo, and more vomiting, came some very good things. Good things like wonderful people, and giving, and support, and connections, and generosity of spirit, and love.

I have learned that even when you think you can't do something, you can. Or should I say, when you think your daughter can't do something she can. So many things she was asked to endure, and she did every one of them.

I have learned that some people surprise you. In good ways and in bad. People you know, and people you don't.

8th birthday

In the hospital with Jets players, though I don't know their names!

I have learned it's not all about the cancer patient. It's also about the family. It's about the other daughter that's left behind, without mom and dad together anymore. It's about her spending her birthday in Boston in the hospital because that's where her sister is, while mom is screaming "shut up, it's only hair." Yep, one of my more stellar moments. It's about grandma and grandpa who drop their lives, and come out to live with us for an extended amount of time so that everything continues to function for everyone left behind. It's about what you can't do by yourself that everyone else pitches in to do for you. And that it's ok to accept their help.

I learned that you can be plucked out of your life within hours and things go on. Imagine you sitting on the  couch right now reading this, and by tomorrow morning, your'e in the hospital. And you don't come home for 6 weeks, then home for one day, then you're back in the hospital for another 6 weeks. Life at home goes on, and your focus is on your little space only and getting through that one day.  You don't make any decisions really about what's going on in your "old life" although everything goes on.

I learned that everyone has their own burden to carry in life. Our burden was bad, others were worse. I heard over and over again "I can't imagine how you're doing this" or "you are so strong." Nope, we are no stronger than any of you, you do what you have to to get through each moment, each day. You see little glimmers of hope and of progress and you hold onto that and try to build on it. My answer was always "everyone has some kind of burden to carry. Everyone. Yours may seem smaller compared to ours, but in that moment in your life, they are every bit as heavy."

I learned the Red Sox are ok too!!

And one thing I'm still learning is that cancer doesn't stop giving. Five years post diagnosis, cancer free,  Hannah is different and our whole family is different. Many dreams for Hannah were lost when she was diagnosed with brain cancer. It doesn't mean that all is in dire straights here. But, if I stopped to dwell on what was, what could have been, it wouldn't be all rosy now. It's still not all rosy now. But, things change for everyone, and it's different. I don't like to dwell, I like to try and focus on how far she has come. But, cancer keeps on giving, even five years later. And it's not a present you want to receive. It seems to me that after having cancer, you should get a free pass for anything after that. No foot pain, no learning difficulties, no emotional issues, no doctor visits and hospital stays, no eye issues/seizures, no everything in your whole life is changed. But that's not the way it works.

I said to Colby and Hannah just the other night that her 5 year anniversary of diagnosis was coming up. Colby said "let's have a party" and Hannah said "until I get it next time." Just shoot me now.

Hannah and Tod

♥Kim

Thursday, January 12, 2012

The new year has started with more doctor appointments for Hannah. We met with her neurologist on January 3rd. Just before going into the appointment, we were able to videotape one of Hannah's eye episodes to show the doctor. I really think it made an impact, much more than me just telling them time and again what is happening, and them finding nothing on any tests or exams. But, while the doctor was interested in the video, still no ideas what is going on. It's frustrating. The doctor showed the head of neurology also, but they decided that without concrete findings of seizures, they were going to hold off on treating her. Unless any changes occurred, we were to just remain status quo.

Hannah also saw her endocrinologist, whom we really like, this week. He explained the levels to me, all is fine. Her IGF (growth factor) is within range and has continued to increase with her age, which is good. She will have to have a bone age and bone density scan in June, nothing until then. He also saw the video of Hannah's eye episodes, but no ideas. There are blood issues that could cause eye disturbances, but they would cause the eyes to stay deviated, and he explained that there would be many other symptoms also.

EEG #4

Earlier this week, Hannah began complaining about having more eye episodes, and that many of them were longer. I picked her up on Monday and she had had 10 episodes and told me we "really needed to do something about them." Yesterday, she had 4 episodes in the first hour of school. She also didn't feel well, and came home to spend the rest of the day in bed. I called neurology to see if they wanted to start her on medicine, and they asked to see her today. In we went this morning for another (her 4th) EEG and to meet with Dr. Maytal, the head of neurology. I find neurologists to be some of the most interesting (um, that's a nice way of putting it) doctors. I could barely understand him, not sure what nationality he was but I really had to focus to catch every word he said. He didn't want to call these seizures, just not enough evidence, but prescribed medicine to begin.

We then went over to cardiology for Hannah to be evaluated. Our neurosurgeon had advised us that sometimes "cardiac arrhythmias can cause transient neurological issues." Hannah's exam was normal, but the doctor wanted to monitor her heart function while she was having the eye episodes so she is wearing a 24 hour halter monitor. She has already had one significant eye episode, so we'll see if they find any heart correlation. Dr. Seiden, the cardiologist we had never met before, was a very nice doctor, who was interested in the issue and suggesting possible other causes to check into. He did mention something about  her current medicine for anti-nausea and the possibility for it to cause dystonic spasms (involuntary eye spasms.) Now, we have seen many doctors throughout this eye problem journey and none of them had suggested we look into her medicine (although I know I discussed it with her oncologist) so I know it's far fetched.

I sent an email today asking her oncologist to call me tomorrow to discuss possibly taking her off the anti-nausea medicine she is on to see if it makes a difference. They will have to substitute another, so not sure if it's worthwhile, but I would like discuss this option with him before jumping to the seizure med. Wouldn't that be great if it was as easy as just a change in her medicine!

So that's what we've been up to. Hannah has missed a lot of school for all these doctor appointments (and she has been sick twice lately as well.). I received a note from school about her absences already, but they have assured me it's not an issue, especially in 7th grade and considering her history. It just makes it difficult for her to keep up with everything. We're doing lots of work at home, when she's feeling well, and so far she has kept up. Oh how I'm coming to love homework!!

That's all for now, will check in again soon. If I get a chance, I'll post a video to let you share in the eye episode experience!!

♥Kim

Monday, December 26, 2011

Merry Christmas and Happy New Year to everyone! I realized I didn't update after Hannah got out of the hospital. No news is good news I guess. No news is what we got. Her EEG showed nothing, which is good and bad at the same time. At this point, the doctors don't have a diagnosis, but their best guess is some kind of partial seizure. I think their second guess is that I'm crazy or making this up, so we'll stick with the first choice.

After our hospital visit, Hannah had a check up with a neuro-ophthalmologist. All was clear. He suggested it could be some kind of seizure or a nervous tick of some sort. Again, going with option number 1. I spoke at length with Hannah's pediatrician, who believes these eye episodes don't have any characteristics of a nervous tick. He hasn't seen anything like this either.

We prepared a big packet of information to be sent to Hannah's radiologist that treated her in Boston and she is going to review it for us. She already told us that this isn't something they have seen in medulloblastoma kids treated there for radiation, so we  know it's not a common side effect.

We also sent an email to Hannah's neurosurgeon. He recommended a cardiac evaluation for Hannah. He said that sometimes cardiac arrhythmias can cause transient neurological issues. That is next on our list after the new year.

We meet with our neurologist on January 3rd. We were told in the hospital that they recommended trying an anti-seizure medication to see if that helps. If it does, it's a seizure. If not, it's not. That's what I call pretty sophisticated medicine!

Hannah did have bloodwork at the beginning of December to prepare for her endocrinology appointment in a couple of weeks. It looks to me like a few of the levels are off, namely her IGF (growth factor) as well as the Vitamin D (some of it). These results are usually pretty difficult to interpret, for me, so we will wait and see what the doctor recommends. I do know that her growth factor has not been this low before. Courtesy of her radiation, thank you very much.

We are in Indiana for Christmas, at Grandma and Grandpa's house, so everyone is happy. We don't have any snow this year, so no sledding, but lots of other fun things. We're off to see a movie in a bit! I will update again after the new year. We hope everyone has a safe, happy and healthy 2012!!

Love,
Kim

Thursday, December 15, 2011

The best laid plans don't always work out I guess. Hannah went to school on Wednesday, but called me in the morning to say she had already had two eye episodes, one of which was longer and blurrier than ever before. It was really beginning to worry Dave and I since these were coming on quicker, more frequently and were now lasting longer.

I contacted the neurologist and asked her if we could come in right away. After some back and forth, she made it happen and Hannah and I headed in after school on Wednesday. We are not at our usual hospital, but their sister hospital just up the road. Our usual hospital is so full that there are NO beds available (kind of appropriate around Christmas time I thought...inn...manger...) We didn't want to wait, so we opted to come here. They told us it might even be a bit nicer for us since their pediatric unit is much smaller, and probably quieter. Unfortunately that hasn't turned out to be true though.

We made it up on the floor and into a bed by 8pm on Wednesday night. We were here and all set for neurology to come up and start the EEG but our nurse informed us that everyone in EEG was gone for the night, and nothing would happen until the next morning. WHY IN THE WORLD WERE WE HERE THEN, I asked her nicely :).  Just another of the fun little frustrations of the hospital world. So we got over it and settled in for the night.

The next morning they came in bright and early to hook Hannah up. The tech asked why no-one paged them last night when we got here, since they were waiting on Hannah and someone was here until 11pm. WHAT??? Are you kidding me?? Nothing we could do, so just shrugged it off and got on with the day. She has been hooked up to the video EEG now for over 12 hours. She has had exactly ONE eye episode, and a very brief one. Murphy's Law...again...I don't know. We wait.

Tomorrow she is scheduled for an MRI of the orbits. This will check the optic nerve amongst other things. She will also have a neuro-ophthalmology consult. They originally said they would like the EEG for 24 hours, but I don't know if they will extend it or not. It's frustrating at best.

She did spend some time today doing crafts that Childlife brought in. It really reinforced our commitment to providing the hospital with fun things for kids to do. Hannah was talking about what we should buy to bring in with our next Cans for Cancer shopping spree. Some of the things she likes the best like ceramic painting I'm sure other kids like also so that's what she wants to buy.

She just settled in to sleep. We'll see what tomorrow brings and I'll check in later. I do have to mention that the likelihood of me getting out any Christmas cards on time this year is nearly zero, so please don't think I forgot you. And, I am thinking of starting a new trend also of only putting lights on my Christmas tree. Maybe the star on top, but no ornaments. I think it will be nice, don't you?


♥Kim

Tuesday, December 13, 2011

So, the good stuff first. Hannah and I went into clinic today and delivered the gift cards from our gift card drive. We delivered 15 $50 gift cards, a total of $750 for families in need. THANK YOU everyone for your donations, these special kids fighting this terrible disease will be a little happier this Christmas season. The families will feel just a little lighter from their tremendous load, and that is what this is all about now isn't it? Thank you!!

Gift cards!!

Now for the medical stuff. Hannah was hooked up last weekend with the portable EEG. She had it hooked up last Friday afternoon around noon and we were to keep it on until Sunday, but could take it off earlier if she experienced several of the eye episodes. I say "we" like I was wearing it, but she was the unhappy recipient. Here are a few pictures, they had her head wrapped up like she had brain surgery! The leads, 23 in all, were attached all over her head, and two to her chest. These wires came off the back of her head and hooked up to the EEg machine, which she carried around. I told her she looked like the bionic woman, but she never quite understood that! 

The button

It was pretty uncomfortable, the wrap on her head was tight so that it didn't come off. Each time she had one of the eye episodes she had to push the red button and I had to record it. It didn't seem like a big deal, she had been having 2-4 episodes a day. She didn't have her first episode for 30 HOURS!! I thought I was going nutso, and maybe we had just imagined it all. So on Saturday night around 7pm she had her first one, and the second one followed 20 minutes later.  She wanted to take it off right then and there, but we left it on to try and record some more episodes, since they told us the more the better. She didn't have another episode until Sunday night around 6pm when she promptly announced she was taking it off immediately. It was pretty tough removing the leads, which were stuck in her hair. She said she wouldn't have any hair left by the time we got them all out!!

Didn't stop her from baking!

But she wasn't that happy about it!

 So today we returned to clinic to hand in the portable EEG and meet with all the doctors to go over the results. As soon as we got there, Hannah had one of the eye episodes, but of course there were no doctors there yet. First, our oncologist confirmed that Hannah's latest MRI/MRA results were good, no tumor or any other structural issues which may be causing these eye episodes. A big breath out on that one! The neurologist then came in to say that the EEG produced no measurable seizure type activity, even when Hannah pushed the button and recorded the eye episodes. I wasn't sure if this was good or bad.

Everything off and not happy, it hurt to remove everything!

With the head wrap off

The doctor explained that sometimes this happens, and they thought that most likely these were not seizures. Ok, so what the heck are they? The doctor immediately said she wanted Hannah to be admitted for a video EEG. She explained that the video EEg in hospital would be more detailed, and also allow them to see her episodes through the video. The doctor picked up the phone, and I thought we were headed right upstairs!! They had an open spot for this Saturday (but Sunday is Dave's birthday) or next Tuesday (but that is Hannah's first junior high school concert.) I asked if it was an immediate need, or could it wait until after Christmas. We are leaving to go to Indiana on the 23rd, returning on the 29th. The doctor asked if the episodes had changed, were they becoming more frequent or longer? The answer (at that time) was no. So, no rush, and we scheduled our hospital stay for December 30th. With any luck we would be out of there sometime the day of the 31st and wouldn't have to pop the champagne in the hospital. But, if so, that was ok too.

The neurologist also wanted an optic MRI, which would focus on the optic nerve. The previous MRI had already confirmed that there were no tumors in  her head, so that is good (great) but perhaps something else is going on in the eye that a regular ophthalmology exam could not pick up. Ok, that sounds reasonable. That also means another trip to the orthodontist to have her braces removed...again. She has ceramic braces for this purpose, so only the back 4 brackets and all the wires have to come off, but it's still an issue for her and she cries when they come off and cries when they go back on. We had waited to do braces until we were pretty set with only 6-12 month MRIs, but that didn't quite work out for us!!

So all is set, we head back home. We walk out of the office and Hannah has another eye episode, her 3rd of the day. All is still good. Dave and I discuss the need to get her records together again to send out to our radiation oncologist at Boston where she had her radiation, and her neurosurgeon to get their opinions. It's always good to widen your circle of doctors examining the records, especially when the current doctors don't have any answers yet. Not that they aren't good doctors, but it's possible another doctor has seen something like this before and could help.

Hannah and I get home, we're at the school picking up Colby from her basketball game, and she has another episode. She tells me, I check her out and I think it's over. She walks away, comes back 2-3 minutes later and says it's still going on. So now, we have what looks like higher frequency of episodes, along with longer episodes...both things the doctor questioned me about. So now I'm having a mini freak out moment! That's it, I go outside and call our doctor right away and tell her we want to move up the EEG and MRI to this weekend. Of course now it's after 5pm and everyone is gone for the day. So, we will wait until tomorrow and hope they can still get us in for this weekend. I told Hannah we'll make it like a party, watch dvd's the whole time and play games and cards. I believe she can't get out of bed at all, so I'll be like the Energizer bunny hopping around her bed to keep her entertained!! So looking forward to that!

We'll keep you informed, I hope we have this all worked out and scheduled tomorrow!

♥Kim