She lives for costume changes. On an average day she’ll switch outfits two or three times. Early this afternoon she ditched a blouse and airy summer skirt for the comfort of a USC t-shirt and cotton shorts. As I walked past her room a few minutes ago I noted that she had added knee-high, rainbow-striped Juicy Couture socks.
–Nice socks, I say.
She sits hunched over, engrossed in her sketches, alternately rifling through colored pencils.
–What are you up to?
–Just doing some artwork.
–Will I get to see when it’s done?
She stops for just a minute to look at me like I’m crazy. She rolls her eyes and shakes her head as if I am the silliest person she’s ever seen.
And then she’s back to work.
You’d never imagine that she was in the midst of serious health discussions, that she was about to travel over 1,000 miles to see new doctors, or that she will soon plow headfirst into painful surgery or new rounds of chemotherapy. And that’s just the way Jordan likes it. She’s a free-spirit–a near-teenager with quirks and attitude and plenty of creative ways to occupy her time.
We head to Chicago Tuesday. We have a meeting with one of the world’s leading pediatric neural-oncologists. Our mission: assess the risks and benefits of spinal surgery. We have learned a lot about these risks and benefits in the last week. Jeanette and I met with the team at CHLA on Thursday. It was enlightening. I have said it before, but it’s worth repeating. We are blessed that Jordan has access to these wonderful souls who care for her and work so hard to keep her healthy. Her neuro-oncologist and her nurse care practitioner have watched over her from the very beginning and we have come to think of them as part of the family.
Here’s the situation. The tumor in Jordan’s spine grew nearly 4mm in 3 months. It’s still small, but that is the fastest progression of the disease we have seen in the five years since she was diagnosed. The problem is that we don’t know if the tumor is of the same variety as the tumors that riddled her brain or if it is something new. It is possible to treat it with chemotherapy, but if this tumor is a new flavor, the therapy we use may be ineffective, and tumor progression in the spine can be very dangerous. That’s why the LA team would prefer to get a biopsy–to learn what we’re dealing with. As I noted in an earlier post, spinal surgery is full of its own risks. So we find ourselves weighing two options: surgery or aggressive chemotherapy. Whichever option we choose, her team here is supportive and has a plan of action ready to go.
Yesterday, Jeanette and I called a family meeting. We gathered round our dining table in the early afternoon to talk about the road ahead. I asked the family, “why are we going to Chicago?” Jordan was the first to answer.
–To get an opinion.
–Right, I said. But why do we need an opinion.
–So that we know what we should do.
–Sort of. In a couple of weeks we’re going to have to make a decision. We need to decide whether or not you should have surgery. It’s a big decision.
–Before you decide, let’s talk about what’s going on.
We spent the next hour talking about risks and benefits. We even used flip charts and a white board. Luc was very helpful in drawing pictures to illustrate concepts (because Jordan can’t read). It was a transparent conversation. We discussed the serious risks–the risk that she might not be able to walk again or go to the bathroom on her own. Naturally, Jordan did not like this, but she kept the conversation going. We gave every member of the family a domino. If the conversation grew too uncomfortable, anyone at anytime could throw their domino over and we’d break. Jordan loved this. We even practiced turning the dominoes. I’m happy to say that we got through the whole meeting without one domino turned.
We spent a lot of time reviewing history, from the time Jordan was symptomatic to the present. Both kids were engaged. I was actually overwhelmed by how well they remember the big steps on Jordan’s Journey. We used those moments in history to explain what has been going on in Jordan’s body. I think this really helped Jordan understand.
When we had finished the meeting, I apologized to the whole family. I told Jordan that I may have set her up for unrealistic expectations. You see, back in 2004, about an hour after the CHLA team briefed us on Jordan’s disease, we sat down with Jordan and told her she had cancer. She was six, and I remember thinking even then that she was remarkably brave. She was sad, but even then her optimism was astounding. I told her that she was going to have to kick cancer’s butt. That phrase stuck. Ever since, she has told anyone willing to listen that she was kicking cancer’s butt. It was a badge of honor.
I told Jordan that I set her down the wrong path, because I led her to believe that she could beat it once and be done with it. I know now that was the wrong approach. Jordan’s cancer is very rare and only recently documented in medical research. From the little that is know about it, her medical team believes her cancer is a chronic disease. That is to say, we should all expect and hope that Jordan will be an old woman one day. But we should also expect that throughout her long life there will be periods when she must focus on fighting the disease again. We should condition ourselves to think of it like diabetes. There may be times when she may have to resume chemotherapy because that is the nature of this chronic disease. Treatment may be a way of life. But we should hope that life can still be long, and rich, and full of hope.
I told Jordan it was time for a new story. I flipped open my laptop and showed her a slide of Buffy the Vampire Slayer. I asked her if she ever saw the television show. She hadn’t, but she knew the basic story. I showed her a couple of other pictures from the show and I told her that Buffy was very good at killing vampires. In fact, she was born to take them out because she’s a slayer. No matter how many vampires Buffy kills, new ones show up. Sometimes, the vampires are pretty nasty and we end up watching 2 or 3 shows to see how Buffy does. But Buffy doesn’t stop, she just keeps on taking out all the vampires, and she’s never alone. She has a team of friends and family that support her while she rids the world of vampires. I told Jordan she should start thinking of herself like Buffy. It’s not about kicking cancer’s butt one time. She’s going to keep taking down tumors because that’s what she was born to do. She’s a slayer.
It took a minute, but she smiled. It was a lot for a kid to hear, but true to form, Jordan handled it well. When the family had dispersed, I asked Jeanette how it went and we both agreed that it was a good talk. Both kids participated and we all knew our roles for the trip. We eliminated a lot of the unspoken bits of truth, but it never got too heavy. Jeanette told me she thought Jordan took to the slayer analogy. And I did, too. It may have been a bit extreme, but I’d rather my daughter think of herself as a slayer instead of a survivor. If there’s one thing I’ve always admired about Jordan, it’s the way she fights. There’s nothing fragile about it, nothing hesitant. She fights with vengeful vigor. That’s how she conquered the monster in the first round, and it’s how she will fight it on the road ahead. And one day many years from now, she’ll tell her grandchildren that she’s no ordinary grandmother. She’ll tell them that she has super powers. They’ll lean in to listen more closely, and she’ll tell them about her born destiny–her destiny as a slayer. With each twist and turn in her story, those kids will see in their grandmother the very strengths and eccentricities we have come to know and love. And she will tell them just as proudly as she tells us that she has kicked cancer’s butt … several times. And she’s ready to do it again.