Saturday, January 30, 2010

January 30, 2007. Three years ago today Hannah was diagnosed with a brain tumor. Some things I can remember like they happened yesterday. This is one of them. Even though Hannah had been throwing up and having stomach aches for about a year (not every day), I went to this MRI with the carefree attitude of a non-cancer parent, never thinking for a moment that anything would come of up. As I sat next to the MRI tech, watching the computer screen the whole time with him, I knew nothing. I remember asking him if he could distinguish anything on the screen because I had no idea what I was looking at. He told me that he had been doing MRI's for 30 years and if there was anything to be seen, he would see it. It must have been a surreal experience for him, seeing that big tumor in her head with me sitting right over his shoulder questioning him. I do remember him bringing out a copy of the dvd to me afterwards handing it to me and telling me "good luck." He knew, he had to have known.

That was a Tuesday. By Tuesday afternoon we were told they "found something" on the MRI, it was a "mass" and we were in the neurosurgeons office being told it could be one of three types of tumor; an astrocytoma which was a non-malignant tumor and required surgery only, medulloblastoma (we all know what that is by now) or a glioblastoma multiform (which is the type of tumor Ted Kennedy had.) The neurosurgeon guessed it was the "middle" option-medulloblastoma-and he was correct.

By Wednesday morning we were checked into the ER at Stony Brook hospital for brain surgery scheduled for Friday. Dave and I were laying in bed that morning at 4am, unable to sleep and decided to finally get up and get going. Dave went to work to get some things in order and I went to the hospital with Hannah. They started an IV (which was much too big for her small veins) and that was the start of Hannah's pain. They were giving her steroids to help drain some of the water pressing on her brain from the tumor. We went right to the ICU awaiting Friday's surgery. Nothing prepares you for seeing your little girl in the recovery room after a 6 hour brain surgery. I wish someone would have prepared us for that. She looked like she was near death, her eyes were swollen, she had blood on her face and head, iv's in her arms, a drain coming of of the back of her brain, but still most of her hair! That surprised me, I thought she would have her whole head shaved, but they only shaved the back, from the middle of her head down.

Hannah went from this:


to this:


My mom took this photo while Hannah was recovering from the brain surgery. Dave and I went that day to Sloan in NYC for a consult with the doctors about her treatment. By the time we got back all Hannah would say over and over was "I want mommy, I want mommy," even though I was right next to her. This is the only photo I have of Hannah during those early days after surgery. It just never occurred to me to even take a photo. You can't see in the photo, but off to the side is a New York Islander who was visiting kids in the ICU. What I see in the photo is a little girl who won't turn her head because her neck hurt from the surgery. We used to prop her head between blankets on both sides to help hold her head up. She also wouldn't move her hand, because of the iv. See her left hand in the photo-it's starting to curl from not using it. Over the next few days, she would lose full use of her left hand and leg.

So many memories, and although so many of them are heart wrenching, some of them are good too. I have been asked if I can breath now, if I feel it's all over. Well, it would be nice. It would just be great to walk away from this world of cancer and not look back. No more MRI's, no more nausea, no more stomach aches or headaches, no more struggles with walking, running, jumping, putting your pants on without falling down, being able to ride your bike without falling off at least once. No more crying over homework because it's too hard and it takes too long, no more feeling inadequate, We don't usually even reveal the fears to ourselves, because then we would have to confront those fears. For now, they are hidden and suppressed. For now we talk about how everything is "great" and Hannah is "doing well" and "all is good." And it is good. In the world of cancer, as a friend once said "we were dealt the lucky card."

Let's hope our hand holds.

♥Kim