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