Wednesday, Jan. 30, 2008

One year today. One year exactly since our safe normal lives came crashing down. I remember exactly what we did the morning of January 30, 2007. Hannah had a 9:00am appointment for an MRI. She just had seemed to get much sicker over the prior weekend, with frequent and bad headaches and a lot of nausea. I remember Dave saying "something is just not right" so we called Dr. Mercier on Saturday and left a long message about Hannah's condition asking him for help. By Monday he called and told us that Hannah had an appointment on Tuesday morning for an MRI, and an appointment later that week with a neurologist. Neurologist? I didn't know why, but was willing to try yet another doctor.

We went to our local hospital, ELI for the MRI. I remember sitting in the MRI trailer (yes it was actually a trailer) with the technician as he performed the scan. It was long, Hannah had no anesthesia and they had to give her an IV for the contrast. A little over the top, I thought. I was sitting right next to him, watching the monitor as he performed all the scans, and asked him "can you tell if you see something on the scan?" He responded that he had been an MRI tech for over 30years, and could absolutely tell, but was always obligated not to say anything. What was he thinking that day as he saw the big tumor in Hannah's head, and the hydrocephalus on her brain? I remember him handing me the copy of the CD afterwards and saying "Good luck to you." Why would he say that, I wondered.

Afterwards, we stopped off at a deli for some breakfast before heading back to school. At 1:30pm I got a call from Dr. Mercier. As I was standing in the kitchen, he told me they had found something on the MRI. I said "what?" and his words were "it's a tumor." A tumor? How could it be a tumor? Only months before during one of her many visits to Dr. Mercier and his thorough neurological exam (that we now do at every clinic visit) his words were "well, it's not a tumor." I liked those words better. I knew that "it's a tumor" was bad, but the thought of cancer never even entered my mind.

So, it started. Dr. Mercier asked if I was ok, if he could call my husband for me. He said that he had already called the neurosurgeon and he was expecting us. "I have to go get Hannah out of school? I can't wait until she comes home?" I asked. No, the answer was no, it could not wait, go get her now. Now that scared me. I called Dave on my cell phone as I was walking out the door to tell him. "No, NO" was his response. I called the school and told them I was coming to get Hannah right away. They pulled her out of class, and her teacher walked her down to the office. I was trying to hold it together in front of her, not doing a very good job. "Why are we leaving early?" she wanted to know. I can't remember what I told her. I remember calling Diane to ask her if she could get Colby after school until we got home, Hannah had a tumor. I called my mom and dad and told them. I met Dave somewhere-either his office or the neurosurgeons office (I think there) but can't exactly remember.

We sat in the waiting room trying to be calm. I don't think we waited that long. The "wonderful Dr. Egnor" (in Hannah's words later, and ours too) called us in to show us the films. It was as clear as day, and it was big. From what I remember, he explained to us that Hannah had a tumor in her 4th ventricle, the cerebellum area. It could be one of three things, good, bad or very bad. The good option was an astrocytoma-often benign, after surgery no other treatments are needed, you're done. However, he didn't think it was an astrocytoma. The second option, the "bad" was medulloblastoma, a malignant aggressive cerebellar tumor that would require radiation and chemotherapy to prevent the tumor from recurring after surgery, otherwise it would come back, with 100% certainty. This is what Dr. Egnor thought it most likely was. The third option, glioblastoma multiforme is a recurrent malignant cancer, uncurable with any type of treatment and nearly always fatal. I remember asking Dr. Egnor, "so that means it's cancer? Oh yes, he said, it is." He couldn't say with absolute certainty until the surgery and pathology was complete, but that was his best guess from the films. He was right.

But what Dr. Egnor was concerned about immediately wasn't the tumor, it was the fluid built up on her brain. It was dangerous and had to be fixed right away. We knew we liked Dr. Egnor, but we knew nothing about him, other than he came highly recommended by Dr. Mercier. But, was he the right one to operate on our daughter's brain? We had just met him 15 minutes ago. We asked him for doctor's names for a second opinion, which he readily gave us. He understood our hesitation, but made it clear that no matter what doctor we went to, Hannah needed surgery right away-no later than Friday- to alleviate the hydrocephalus on her brain. It was Tuesday, he wanted to admit her the next morning to begin steroids to help reduce the hydrocephalus and perform the surgery on Friday. That seemed so fast, and so urgent, it must be bad, is what we thought.

We left his office, and immediately started researching Dr. Egnor online with Mike and Kathleen. We were really looking for any glaring bad reports against him. We could find information on where he went to school, his current bio, but no glaring reports of negligence. We looked up the other doctors also, same thing. It seemed an impossible decision to have to make under intense pressure, but one that had to be made, and we had no more time to research. That night, we decided to call Dr. Egnor in the morning and go ahead with him as Hannah's surgeon. So we researched, we talked, we packed bags for the hospital, we put the kids to bed and tried to act normal. We tried to lay upstairs and not think about Hannah laying downstairs with that awful tumor in her head and all the fluid on her brain. Would she throw up again in the morning? We slept, I think, but I remember Dave and I both waking up at 4:00am, unable to sleep any more and decided we might as well get up and get ready. We called Dr. Egnor to let him know we were on our way in, we were to be admitted to the ER at Stony Brook Hospital, where Hannah would start on the steroids right away. She was admitted rather quickly to the PICU (pediatric ICU). What she most remembers is the IV needle in the ER that they had to start in her arm. That was the beginning of the terror for her. The needle they put in was too big, she wouldn't move her arm and she was terrified.

And the rest is history. One year of trials and tests I never would have thought we could all make it through. One year of hell for everyone in our family, especially Hannah. But through it all, she has remained brave and focused and strong. Unbelievably strong. She has endured so much more than any child should ever have to. But through all trying times comes the realization of the good. The good of life, the good of people, the good of a community and extended family that has rallied around Hannah and our family to help us through this.

I talked with Hannah this morning about this "anniversary date" and her words were "what's so big about this anniversary date anyway?" We talked about how it's been a whole year since they found the tumor, we talked about the ER needle, we talked about the things that she has lost (her tumor, her hair) and about all the things she has gained. We talked about the things in her life that would not have been there before, like new friends (she said yes, like the Griffins), and other gifts in her life along the way (some funny things she pointed out like her new little piggy stuffed animals from Schneider's onocology clinic, her hats, her bandaids and of course her baby TOD!)

We've been blessed to meet many kids that are fighters, survivors, angels, warriors and miracles. I didn't even know this world existed before Hannah was diagnosed, now I'll never be able to forget it. Once your child has been diagnosed with cancer, it's like you walk through this invisible door, you're no longer in the "kids without cancer" group. It's not a door you can walk back through. On the other side is a long tunnel. The first part of it is black and small. But as you work you way through and time passes a bit, you start to see some light, you see that you are not alone and it gets brighter. The critical phase passes, and things "appear normal" again. Hannah's hair grows back and you can't see her scars anymore, Hannah goes back to school, we all go back to our everyday activities, but we don't go back to our pre-cancer days. So many people say how it must be so good to get back to normal, but they just don't understand that you don't go back. You can't go back because your lives are forever changed, and now we're in a different place, and part of a different group. This group may not be what we ever intended for Hannah or for us, but it's our reality, with it's ups and downs just like the other "real world."

Thank you all for your uplifting and ongoing support on this journey. You have lifted us up when we needed it and carried us through. It means the world to all of us.

xoxo Kim