The thing I remember the most in the seconds after Abigail’s initial diagnosis on September 19th was how quickly my mind started racing and thinking about all of the signs I had noticed (or didn’t notice) before I stepped into that small, windowless conference room on the 19th floor. I felt like Chazz Paleminteri in The Usual Suspects looking around the room at the once hidden clues that were only now revealing themselves. Noticing the unusual amount of Kleenex boxes in the room that weren’t there on Friday, the surgical resident we met with after surgery who wouldn’t look me in the eye (but had been very friendly the day before), the difficulties she had learning to ride her bike two weeks prior and many, many others. For the first few minutes I could only think about the signs over the past few months, days, hours that I thought I should have seen and (even without medical training) deduced this terrible disease on my own. How can you miss something that big? It was all I could think about for the minutes while our Doctor carefully sketched out the diagnosis so we could see what we were actually dealing with. But I couldn’t focus on what he was saying, only on my lack of ability to see the road that we were walking down that led us here.
I was able to snap out of this thinking and focus once we were given three roads of treatment; the first was standard care of radiation therapy to hopefully shrink the tumor (which we choose and it did), the second was to explore clinical trials immediately and the third was to do nothing. This shocked me, I blurted out “what do you mean, do nothing?” Our doctor calmly explained that due to her prognosis the option of doing nothing was a very serious suggestion and the team at Laurie would support our family if that’s what we decided to do. It was at that moment that my emotions finally caught up to our reality and signs no longer mattered to me one iota. This cancer is so terrible that doing nothing was an option that was on the table and that some parents had chosen to take with their children. I asked what our timetable would be without treatment and after some prodding for their best guess was finally given an answer, six months. My brain couldn’t process that no matter how hard I tried and at one point I thought I might pass out, six months, six months, March….. March?! It was a punch to the gut that I knew was coming and was the clearest and most precise thing I can remember from that meeting… six fucking months. I lost it.
Abigail is going to hit six months post diagnosis in 15 days and I have been thinking about this meeting a lot over this week since the calendar turned over to March. I’m happy we are doing well right now and she looks to have more months than the six we talked about on that awful day. Because the reality with this disease is that even with treatment some parents don’t get six months. I hear about another poor kid succumbing to this monster after only 8 weeks and feel lucky that I still have Abby, which is quickly followed by an overwhelming feeling of guilt. I look at kids and parents who got 2 years + and feel a strong sense of jealousy because I know we might not get the same. Because this community is filled with strong children and parents who are all sharing a very similar experience and the most precious and valuable commodity we are all fighting for is time. We all just want to keep our kids around for that breakthrough we all hope and pray is coming for us, the idea that we could lose our children before it happens is something that puts an unbearable weight on your soul.
So that was six months folks, lets hope for six more.