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!!


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?


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!