Three Years Ago Today

I remember the moment vividly.

We had been told in August 2007 that Catherine had a small brain tumor, but it was nothing to worry about. In retrospect, I should have known to be worried. But we were pregnant with Sabrina, Robby was laid off, and we were spending every day at the Marcus Institute undergoing intensive feeding therapy (8 hours a day!) for Catherine. At the time I mistakenly thought that if we could get Catherine to eat all of our troubles would be over.

Then Catherine underwent a follow up MRI on November 8, 2007. I had a court hearing that day, so Robby took her. The MRI's are done in the radiology department at the hospital. After she wakes up from the MRI, we are normally sent home. On that day, Robby was handed the CD of images and told to walk across the street to see a neurosurgeon (that should have been a sign there was a problem).

Robby was told that the tumor was growing too fast and would require her to see an oncologist. The neurosurgeon still told Robby it was nothing to worry about. But, the neurosurgeon's nurse made the appointment for us for the next day (yet another sign: when one specialist makes an appointment for you for another specialist for the next day).

I didn't have court the next day, so we went to do some early Christmas shopping, lunch and then to the appointment with the new specialist. Robby had not filled me in on all the above details; he just told me that the neurosurgeon wanted Catherine to see someone "new."

That "new" doctor for Catherine was on the 4th floor of the Medical Office Building at Scottish Rite. When the elevator doors opened, I saw the following words on the wall: Welcome to the Aflac Cancer and Blood Disorders Service of the Children's Healthcare of Atlanta.

What? This is for kids with cancer!! My first thought was that we must be on the wrong floor, so that is what I told Robby. He said no, this is the right floor - this is just where the new doctor's office is. I thought "OK." I know how big organizations have to sometimes fit office space in wherever they can, so that explanation seemed plausible.

So we waited until we met the doctor, Dr. Claire Mazewski. Catherine was 27 months old, so the doctor sat on the floor with her. We sat on the floor with her. At the time I was 8 months pregnant with Sabrina. The doctor had a big bag of small toys which Catherine played with. We discussed her extensive medical history. She told us that the tumor was not a solid tumor and was located in the center of her brain, so Catherine would be treated with chemotherapy for 18 months.

While I was reeling from all this information, I asked if they would do a biopsy. The doctor asked why and I said "to rule out the possibility that it is cancer." Dr. Mazewski looked at me oddly and asked what I meant. I said "shouldn't we do a test to make sure that it is just a benign brain tumor and not cancer?"

The next words from the doctor are what I will always remember: "It is cancer. Only cancer would grow that fast."

I started sobbing. Catherine got me some tissues (which are kept in every room on that floor) and handed them to me. Just picture me and my enormous belly containing Sabrina were sitting on the linoleum in the examination.

Dr. Mazewski explained that the location of the tumor would make a biopsy dangerous; it would damage her brain too much to get to it (her tumor was in the center of her brain and not very accessible). She also said that they know what kind of tumor based on the location and what areas are involved. She said that even if it wasn't cancer, which she was sure it is, it would need to be treated with chemo drugs to stop the growth.

And so began our journey ... 18 months of chemo, countless blood & platelet transfusions, so many ER trips. Scottish Rite became such a part of our lives that when she came off treatment it was strange to not be there all the time. I remember thinking I had tons of free time when her treatment ended.

I am so grateful that we ended our treatment 20 months ago and there is no evidence of tumor regrowth. I am grateful that Catherine's tumor would not respond to radiation and was not operable. Her little brain was protected from the harshness of those treatments. Mostly I am grateful that we still get to hold her everyday ... for her smiles, her giggles, her hugs.