Undenying pilgrim,

Lie prostrate on the whistling clouds,

And hum hymns of salvation

To summon angels to the cause.

Hope they cannot sense your doubt

and longing weakness.

They will give you strength.

They strengthen those who give.

Unworthy wanderer,

Scan the halls of heaven much

But never touch the gates.

The god you question’s absent.

He offers love to you and yours

 but never while you doubt.

The doubters cannot stand.

The standing cannot doubt.

Sometimes, on Jordan’s Journey, it feels like we are on the border of an event horizon. To each of us individually time hurtles on. But when we watch the events around us, they move at a strange pace. Occasionally, the life around us appears suspended. Take Jordan’s cancer. It has been a sluggish adversary. When most people think of cancer, they think of urgency–the need to stop a bully that is hungry to invade its host. But Jordan’s cancer has never behaved this way, and her treatment has been governed by prudence and patience. It has been a blessing, but it has also led to a strange state of being. We face risks and setbacks but they are always accents on an otherwise monotonous composition. We only measure the time by marking her progress, no matter how gradual or marginal it appears.

Today, we met with Jordan’s neurosurgeon. My friends in the medical community describe the guys who operate on the heart and the head as the biggest cowboys in the operating room. They speak of the God complex and hubris. But those words could not be farther from my mind when I sit with her surgeon. When he speaks to me, I’m more confident about her chances. I feel I can ask him anything, and that he will answer me with candor, compassion and great wisdom. He was the man who told us, six years ago, that Jordan had cancer. I remember it as though that day were suspended on the event horizon. While it was hardly good news, I remember feeling relieved. I finally knew what I was dealing with and I had a doctor standing next to me who took the time to explain it to me moments after he had performed a complicated procedure on my daughter and returned her safely to me. If anyone was justified to have a God complex, certainly it was he.

Surgery is part of the conversation again. In an earlier post, I said that the tumor was growing around the T8 section of her spinal cord. It’s actually T2/T3. This fact doesn’t change her diagnosis much, but it does explain why she has had discomfort around her shoulders. The issue is the degree of growth. In three months it has grown enough to make everyone wonder if it might be a different kind of tumor. Unlike the rest of her disease, this one is making changes enough that they can be observed. That’s why her oncologist believes surgery is necessary. We don’t know if this one is the spreading variety, he reasons, so let’s get it out.

Her neurosurgeon walked us through her scans. He showed us how the tumor has grown within her spinal cord. It isn’t huge, but it is clearly noticeable on the film. “I’m a conservative guy,” he said. “I usually try to talk the oncologists out of surgery. This isn’t an area where I’m eager to go in.” But he explained that the alternatives are also risky. It is risky to use radiation or chemotherapy on a tumor we don’t understand, and radiation along the spinal cord can cause nerve damage that carries its own risks. It is possible to wait, but if the tumor continues to grow–or worse, it spreads–the surgical option may be too late.

It may seem strange, but the two neurosurgeries Jordan had years ago were less risky than this surgery. There’s minimal risk that the surgery could create a life-threatening situation. The surgeon would be operating on a part of the cord that is below the region where her arms and chest are effected. But there is a reasonable risk that she might not be able to use her legs the same way again. She could lose the ability to use them completely. She could lose the ability to control most of her lower body. It’s not a certainty, but it is a risk.

We did not agree to proceed with surgery today. We are meeting with another oncologist soon to get a second opinion. We have pencilled time in the O.R. for late August. That will give her time to go to summer camp and enjoy her 12th birthday.

We told Jordan that we would not make any decision until we had discussed it as a family. She would have a say in what we decide to do.

–Is Lucas going to have a say?

My head skipped ahead to Jordan being Jordan. I imagined that she didn’t want him to have a say on this.

–Not if you don’t want him to.

She didn’t skip a beat.

–Yes. I want him to help me decide. Can I borrow your phone?

We talked her out of calling Luc then and there. At that moment, she became most interested in getting out of the hospital and going home. We signed a few forms and headed to the bank of elevators. The office is on the 10th floor, and while we waited we could see the entire Los Angeles skyline before us. Jeanette said something to me about that feeling–the feeling we’ve come to know so well–the dread of having to make tough decisions and taking the next step. But before we could dwell very long on these circumstances, Jordan asked what was wrong.

–We’re just feeling bad that you have to think about this stuff. We’re sorry we have to have this discussion.

Jordan smiled at me in a resigned way.

– If this is what they have to do, we’ll just have to do it.

And there we were again, staring at the horizon of the black hole, all of us appearing somewhat suspended, some of us feeling like we were hurtling right in.

Jordan believes in Santa Claus. She has classmates who believe otherwise, but it hasn’t dampened her conviction. And I have purposefully not intervened. It’s one of the few exceptions I make to my rule about honesty and candor. When Jordan was originally diagnosed with cancer, we told her immediately. She was five. Some people thought we were crazy. We thought it would have been crazy to keep that information from her. We have always been honest with Jordan–optimistic, hopeful, and encouraging, but always honest.

That’s why we were surprised this afternoon while shooting a video update for Jordan’s blog. I asked her how she was doing and she rattled off a health update about her legs. Then she volunteered, “and guess what, I don’t have cancer anymore.”

If you watch the video, you might notice a pause. That’s because I wasn’t sure what to say next. Jeanette and I sat Jordan down after her MRI and we told her there was a tumor on her spine. How could she believe that she didn’t have cancer anymore? I prompted her on camera, thinking maybe she just said that because she had been saying it for so many months. I asked her about her recent doctor’s appointment. She then told me that they found something on her back, but it wasn’t cancer.

I looked at Jeanette and turned the camera off. It was time to have a heartbreaking chat with my daughter. As I explained that the growth on her back was a tumor, her smile faded and her eyes cast down. I made sure that she understood what a tumor was.

– So, that’s cancer?
– Yes.
– There’s cancer in my body again?
– Yes.
– Now, I have cancer in my back?
– Yes.

I wanted to cry. Maybe I should have cried. I was dumbfounded. All this time, Jordan hadn’t realized the monster was back. And, in a way, it all made sense. I understood why she had been handling it so well. She hadn’t put the pieces together. I had just changed her perspective in a way I couldn’t take back. I felt as though I had told her there was no Santa Claus, and suddenly felt silly for not having that conversation. Of course, her outlook is good, and there is every reason to be optimistic, but my heart sank as I watched my daughter take a psychological sucker punch to the gut.

She took a moment to process the information. She looked frightened and disappointed, but she didn’t cry either.

– So, I have to have chemo again?

I explained the options to her. We discussed how surgery might solve the problem. Then we talked about radiation. I told her chemo might be an option, too. We’d know after we met with the doctors. She listened well, and asked a few questions. After a few minutes she told us, “I kicked cancer’s butt once. I’ll just have to do it again.”

Amen.

– Jordan, maybe one day next week you can come to work with me.

She’s still on spring break and she’s a little bored. There was more to it than that. For the last few years I’ve been promising to bring her to work with me on “bring your daughter to work day.” Inevitably, I’m travelling on the official day. I wanted to make it up to her.

–Which day, Dad?

Jeanette looked up from her salad. Her eyes said, “are you crazy?” and “now you’ve started it!” Once Jordan asked the question I became keenly aware of how little I’d thought this out. I was still mulling over an idea and Jordan was closing a sale.

– Let me think about it and get back to you.

– How about Tuesday?

I had no reason to object. My calendar was clear. So, we decided on Tuesday. Every day after that decision I was greeted with the question:

– Dad, how many more days until Tuesday?

On Monday, she called me at my office mid-day to ask if she should pack a lunch. I told her that I would be happy to take her to lunch when she came to visit.

– Where would you like to take me?

Closing again. Fortunately, she was delighted to learn there is a Baja Fresh near the office. She can be an easy date.

Anyone who’s followed Jordan’s Journey knows two things about Jordan. First, she can be stubborn as a mule. Second, when she gets agitated about something, everyone around her knows she’s agitated. Neither of those qualities are great fits for a professional office. That’s why Jeanette and I devised a suitable EVAC plan. If Jordan started acting up, Jeanette was ready to start up the Jeep and escort Jordan home. I’m happy to say that said plan was completely unnecessary.

Jordan rose early, had breakfast with me, and was ready to head for the bus before me. She was thrilled to learn that the bus has a special ramp for wheelchairs. She thought it was cool and she talked up the bus driver as he secured her chair. He turned to me and said, “man, she has an amazing attitude!”

She spent the first hour in my office coloring quietly. When it was time for my first meeting, I introduced her to our conference room, and our Wii setup. She split her time over the next couple of hours playing Wii sports, coloring in her books, and doodling on our white boards. When I checked on her, she was giddy. No interest in going home. I gave her a tour of the office, which she insisted doing on foot, not in the chair. After my next meeting, I found her chatting with a couple of strategists. She was smiling and talking about her aspirations for fashion design. She was also wearing her sunglasses indoors. We had lunch and Jordan bought cookies for the office. I figured it was just a matter of time before she told me she was bored and I’d need to call in Jeanette. Nope.

During my next conference call I saw Jordan walk past my office with my boss. They were carrying on as if they’d discovered a new restaurant and wanted to compare notes. I peeked my head out to make sure she wasn’t being a pest and was quickly waved off by the boss. Jordan was sitting comfortably on the sofa in his office, flipping through some of her coloring books.
I imagined I would have to leave the office early to take Jordan home, but we finished up at 6:30. When we got on the bus at the end of the day I asked Jordan if it was a good day. She said, “no, it was an excellent day.”

–

As a side note, Jordan will have her casts removed this afternoon. Her feet will be free at last. Physical therapy begins immediately and she has some special splints to wear while her feet learn to walk again. So far, everything is going better than planned. She’s looking forward to summer camp, when she aims to pass her swim test, ride a horse, and practice backward somersaults.