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