One year ago today was the scariest day of my life. I know I've written some about the day Steven was diagnosed, so I apologize if I am being redundant, but now that I am a year away from it, I need to write it down. It is one of those days that totally changed my world and many of the details are etched in my mind.
The night before, I finally actually saw Steven's swollen knee and knew that it was more than him faking a limp. (Yes, that was one of the explanations I had for his limping--I'm that cool.) I sent the boys off to school the next morning and started on my morning chores. I wasn't thinking much about his leg, but when I noticed that it was past 9:00 and the doctor's office would be open, I called and described his symptoms to the nurse. I felt sure she would tell me not to worry about it (and I wasn't really worried about it), but instead she said the doctor could see him that very morning. I headed up to the school to pick him up and took the girls along.
Dr. Schmidt examined him and ordered an X-ray. Through this all, I had no inkling that anything serious was the matter. In fact, even after the X-ray when he asked us into his office and offered that his nurse would entertain my girls, I had no clue that my world would be turning upside down. I wondered if all the exam rooms were full--it didn't look too busy. The nurse handed the girls some paper and crayons and the doctor very somberly told us that the X-ray revealed a bone tumor. He asked if I would like to call my husband. I was really confused--what causes bone tumors? He was using words like "malignant" and "benign", but cancer really didn't cross my mind at all. I still can't decide if it was the classic denial response that often happens in a diagnosis, or if the concept of cancer in my child was so beyond any thought I had ever had that I couldn't connect the two. Or maybe it is both and that is how denial happens.
He asked us to wait while they called Primary Children's hospital and made an appointment for us for that very day. We went into the waiting room and I tried to wrap my mind around what was happening. At this point, I still had no clue that we were looking at cancer. Just the week before, my sister had confided to me that she had found another melanoma tumor after over three years of being cancer free. She still hadn't told many people, including our parents or her kids. She was still waiting to see what the extent of the cancer was. I texted her: "I'm at the doctor with Steven. He has a bone tumor. Not sure what it all means." She says it is the worst text message she's ever had. I didn't elaborate--I needed to let Steven play tetris on my phone while we waited. She and my mom headed toward my house to meet me and take the girls while we went to the hospital. Alisa felt like I needed to be better dressed for the appointments and after finding that I didn't have anything cute clean, she traded me shirts and decided it would have to do.
Finally, we had an appointment and the post-it note with the info on it (Hematology/Oncology 4th floor) was my first clue that they were thinking cancer. I think it is there where my memory starts to cloud up. Rob met us somewhere--I think at the hospital, I don't remember. Someone took my girls, probably Alisa, and my mom ended up coming to the hospital at some point, too. Steven and I must have gone to the clinic and later met my mom and Rob because I have video where we are alone and waiting. We later went downstairs for scans and an MRI. And then back upstairs to meet with doctors. My dad came as well. At one point we had Steven, my parents, Rob and me plus a resident and a doctor all in the little clinic room. I was feeling self conscious because there were signs everywhere discouraging family gatherings at the clinic, but their support meant the world to me. I felt like my foundation was being yanked away.
After discussing chemo at the clinic, we went over to the orthopedic clinic to meet Dr. Jones. By this time, it was after 5:00 and all the patients were gone. We had our little entourage, and he also had a resident with him, so he invited us to just talk with him in the waiting room where there were chairs for all. The way he talked really put Steven at ease. Dr. Jones explained that the chemo would be like taking a sledge hammer to the cancer--and afterward Steven like to explain chemo with that image. I remember my parents telling Dr. Jones about Alisa's cancer and confidently explaining how she was NED. My heart was breaking for them because they were about to find out that it wasn't so and I was having a big taste of what it feels like to have a child with cancer.
We came home that night to a clean house and pictures and cards from my kids and Alisa's kids. Yes, now that I write this, I am remembering that she must have had my kids. I couldn't sleep much that night as my mind raced with fear and anxiety. The next day Steven needed a biopsy to confirm the diagnosis. We were to report for surgery around lunchtime, I believe. I sent him to school the next morning. Looking back, I can't believe I did that. Maybe it was the denial, or maybe I was starting my personal fight to keep our lives as normal as possible. At any rate, I believe he even told his class what was going on. I don't remember.
And the rest is well documented on the blog. In July, my cousin, Eric, made a video for a Relay for Life event and included a section about Steven. I have been wanting to post it for a while now, and I think today is a good day to finally take the time to do it because it includes some video from the first few days of diagnosis. The part that shows Steven reading a book, waiting in the clinic is so hard to watch because all the feelings of that day rush back to me. Steven really won't watch that footage--it is just too hard.
I don't really know how to take a day like today. Do you celebrate or mourn? I don't feel like doing either, so instead I will just remember.