Jordan's Journey

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.
–Thanks.

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.

–Yes, Dad.

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.
–No surgery!
–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.

I wanted to provide a quick update on what we’ve been up to. Jordan’s surgery is tentatively scheduled for Tuesday, August 24th. As I mentioned in the earlier post, that gives Jordan time to go to summer camp and to celebrate her 12th birthday. It also buys us plenty of time to get second opinions. That’s just what we’ve been scheduling. We are flying to Chicago in late July to meet with a neuro-oncologist at Children’s Memorial Hospital. He’s one of three in the States who has a good understanding of Jordan’s cancer (before you ask, yes, Jordan’s current neuro-oncologist is also one of the troika). We are also scheduling an appointment with a leading neurosurgeon at Stanford University. Jordan will be earning some frequent flier miles in the days ahead.

Thank you all for your words of support. The family is coping well. We have our moments of high emotion, and then we settle back into the necessary next steps. Jordan is doing very well.

Physicists and astronomers believe that there is a spacetime boundary that surrounds a black hole. They call it the event horizon. If you were to observe a black hole, you would never be able to see anything past the event horizon. Even light cannot escape. If you watched an object fall into a black hole, it would appear to slow down to the point of stopping as it got closer to the horizon. It would never fully disappear, it would just appear to stand in a suspended state of animation. The object would meanwhile continue at its normal rate of speed, passing through the event horizon with everything seeming quite normal.

Life on Jordan’s Journey sometimes feels like it is on the border of an event horizon. To each of us individually, time hurtles on. But when we watch the events going on around us, life seems suspended in time. 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.

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 that can be readily 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 is odd to say, but the two neurosurgeries Jordan had years ago were less risky than this surgery. While there’s minimal risk that this new surgery would create a life-threatening situation, there is a high degree of risk that she might not be able to use her legs the same way afterward. In fact, 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 take 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 we 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’re speeding in.

One is 14, the other nearly 12. They can raise the roof with their bickering. It doesn’t take much. One comment. A rolled eye. Breathing. But no matter how much they fight, there is a bond. Luc goes out of his way to do things for his sister when she is need. For all his mouthy grandstanding, when he serves Jordan he is genuine and reserved. Though in normal times he is prone to condescend to her, when she is in the midst of her fight against the disease he possesses the rarest ability to treat her with utmost respect and a simple good nature.

She will tell you that her brother is her greatest annoyance. Anything that’s amiss is Luc’s fault. But when she is hurting or feeling vulnerable he is the first one she asks about. She looks up to him. She’ll never let on that this is so, but it is clear to anyone who watches them.

I spend a lot of time chronicling Jordan’s steps on this blog, but she makes so many of those steps holding her brother’s hand. He’s been willing to carry her on his back many times, too. When I think far ahead, into a cancer-free future, I see two strong children. She will live her life knowing what she has beaten. I imagine he will live his with a perspective that few of us can imagine–as the healthy one, the role model, and the one who sometimes gets lost in the shadows of a survivor. He is a survivor. It takes courage and character to press on the way he does–to be a source of support while growing up. He has no idea how much of a role he plays in Jordan’s life, or in mine, and I thank every star every day that he travels with us on this path. Jordan will thank him one day, too. For now, she’s content to scold him every chance she gets.

I must be a fountain of optimism. At least, that’s how people have come to know me when I speak of Jordan’s journey. At the darkest moments–when her health was most in jeopardy, when she slipped off into a coma, when her body writhed in pain and jerked in seizures–I found myself comforting others. I found myself projecting hope. I found myself lying to myself in order to sustain a veneer of vitality when every part of me ached and doubted.

I started writing this blog for practical reasons. When Jordan was in the hospital, people wanted to know how she was doing. It was too much to run through the details with each new call, too exhausting to explain what was happening. And people became so emotional that I found myself consoling others when I myself needed to grieve and make sense of a situation that made no sense at all. So, I started posting updates about Jordan. And as I wrote, I let my emotions run. Sometimes, in those early days, my emotions poured out unexpectedly and my posts were full of anger and brooding. But as I witnessed my daughter rail against the disease, how could I not write about her miraculous spirit? Readers were as charmed by her gregarious personality and take-no-prisoners attitude as I was. As seven years passed, the tenor of the updates shifted. I saved the dark thoughts for my personal journal, and blogged only about the encouraging, the testimonial, and the brave.

There are dark thoughts in my mind these days. Next week, we meet with the neurosurgeon to discuss what to do about the new tumor growing in Jordan’s spine. In preparation, I have researched everything I can find, and I have grown even more somber. To remove this tumor, the surgeon must enter her spinal cord near the 8th thoracic vertebra. If complications are met, the risks are paraplegia, further neurological deficits, or both. I have great faith in her surgeon. He is one of the best in his field. But I have no words to express how I feel when I imagine something going wrong.

When I walk around my neighborhood I pass by children who run, skip and cartwheel. I watch them attempt tricks on their scooters or ride around on their bikes. I’m embarrassed to say that sometimes I resent them. I see little girls dancing and I wish my little girl could join them. When I dream, Jordan is always dancing. Sometimes, I listen to children Jordan’s age engage in social banter and I know they never worry about slipping into a seizure, and it pushes me into delusion. I force myself to believe Jordan will one day have a life that is just as effortless and normal. But then I think about what she might have to go through again–surgery, chemotherapy, physical therapy– and I want to scream. I want to blame someone or something. I want to let the emotion run wild and I want to grasp at progress by summoning emotional outbursts. Seven years of trying to be strong frays the nerves and dulls the senses. I feel ill-prepared to go through this again. I can only imagine how Jordan feels.

It’s so important that I be strong for her and for my family. Whenever I think it would be best to just uncork the emotion and allow myself to be human, I remember that I am needed by my daughter. And crying, though certainly human and often cathartically emotional, is best saved for the shower.

I live in fear that reality is a mirage. I often wonder if I want so much for my daughter to be healthy that I see what isn’t there. I’m like the man climbing down into a pit of vipers, ignoring the obvious danger and admiring the craftsmanship of the rope ladder. I find ways to spruce up any unpleasant change in Jordan’s progress. Here’s a dose of reality. Do a search for primary diffuse leptomeningeal gliomatosis (Jordan’s cancer). Most of the case literature refers to it as “a rare, fatal neoplastic syndrome characterized by widespread infiltration of the meninges by tumor.” Now the ladder-admirer in me will spout out many facts that should ease your concern. In most cases death occurs within 24 months of onset, but Jordan has been going strong for seven years. The ladder-admirer would tell you that she is diagnosed with ‘low grade’ gliomatosis, which means that her cancer is not aggressive–a blessing, for sure, but hardly much comfort. That ladder-admirer would tell you that viper’s skin makes great shoes. I’m not sounding an alarm and I’m certainly not losing hope, but every once in awhile I spy the poisonous snakes writhing at the bottom of the well, and I sink into a listless mood. It’s unattractive and it’s self-indulgent, but it is real and the feelings must go somewhere or sometimes I think I will crack up and be useless to those who need me most.

There’s a line in Macbeth, “Give sorrow words: the grief that does not speak whispers the o’er-fraught heart and bids it break.” We are grieving the loss of Jordan’s health, once again. I believe in my daughter, and I know that she can summon miracles. She’s done it before. No matter what we learn next week, our family will rally around the girl. But today I’m allowing grief to whisper to my heart, and the words I can find are full of sorrow, fear and anxiety.

The interview with Jordan when we realized she didn’t fully understand the situation.

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.

Nothing new to update. We’re set to meet with the surgeon to discuss options related to the tumor on Jordan’s spine. We’re also scheduling consultations with other specialists. It’s a sadly familiar process for us. It isn’t troubling Jordan too much. She is enjoying her first days of summer vacation.

Luc graduated from middle school today. We are so proud of him. He is growing into an active, confident, intelligent young man. I often forget how much he has gone through on Jordan’s Journey. He has his own brand of strength, and too often it gets lost in the shadows of his sister’s larger-than-life personality. He is as much an inspiration as she is.

I am proud of her today, too. First, she managed to keep a secret. We bought Luc a 50mm lens for his camera as a gift for graduating. Ordinarily, we don’t reveal our gift selection to Jordan because she has loose lips. When she asked me this time what we were gifting, I took a chance, but I also warned her that I was trusting her not to reveal the surprise. She did it!

You would think that we might have one day to celebrate without worrying about life with a brain tumor, but sadly, Jordan had a seizure during Luc’s commencement. Her seizures are coming on at a rate of nearly one per day now. Like most of them, this was mild. I turned during the ceremony to see Jordan coughing, as though she might vomit. Jeanette turned to me and whispered, “she’s having a seizure.” For the next several minutes, while the principal read off the names of each graduate, I heard Jeanette quietly ask Jordan her name. Jordan stared forward, blankly, mumbling inaudible sounds, gradually forming them into words. As she returned to us, she frowned and looked uncomfortable. I asked if she wanted to go home.

– As soon as Lucas graduates, I’m out of here.

I nodded. She sat still. When people cheered and screamed for their graduates, Jordan winced and told us the sound hurt her head, but she would not leave until she saw her brother walk across the stage, shake hands with the administrators, and collect his certificate of promotion. Immediately after, she exited the building and I walked her home.

It is very hard for me to watch–this constant, dull progression of symptoms. She told me, “I guess my body is just having a hard time. It’s not doing as well with the cancer.” I told her to cut herself a break and take things one day at a time. She agreed with me, but she was somewhat dispirited. I changed the subject and told her I couldn’t believe how big my kids were getting. She chuckled, and asked if I could handle the fact that she would soon be 12. I told her it was hard on my blood pressure, especially because she is clearly growing up to become such a beautiful young lady. She liked that comment, and told me everything would be okay. Every time she tells me that, I absolutely believe her. If anyone can will their way to health and prosperity, certainly it is she.

LMV 35 (1)

There is a quiet process that occupies her mind. It foments an insurrection. No matter how the forces ‘gainst it push, it bends and strengthens in the heat of misfortune and capitalizes on spirited emotion. That tiny instinct, a cancer of its own design, invades everything she does. You can thrash her down with bad news, but it will rise up and push her to find a light. It never dims. It flickers at times, but it never fades.

The recent news hit Jordan hard, but it hasn’t quieted her resolve. She missed school today. She stayed in bed, sleeping off a bad headache. She hated the morning and got off to a slow start. But by the time I returned home, she was perky. She cheered the Lakers and looked forward to a chapter from a book. The hug she gave me made me stop my pathetic moping. She made me feel almost as strong as she when she grabbed my hand and said, “you are so warm. I missed you, Dad.”

It doesn’t matter what is done by the other insurgent force that occupies her head. Her will is stronger. And for the moment, she has decided she’d rather be herself. I love that. I wish I could summon it as easily.

It was not a good day.

Before you jump to conclusions, Jordan is home with us and she is just the same as she was yesterday. She sat with me tonight and watched a program about black holes, and she told me quite casually, “this is interesting.”

But the day was not good.

Jordan had a routine MRI this morning. She did great. She was accessed without a fuss, and she woke up easily and effortlessly. But when the scans came in, cancer photo bombed. She has a small nodule on the T8 vertebra of her spine. It has been spotted before, but today it was significantly larger. Still small, there is no doubt that it is a growing tumor.

We don’t have a solution, yet. The doctors will meet over the next week to discuss the options. One is surgery. Unlike the rest of her disease, this tumor is focalized and solid. Another option is radiation. New rounds of chemo might be another way to go. And, there’s the possibility of doing nothing. We don’t know enough and we will probably seek out another opinion. I am not eager to put Jordan through surgery again, especially on her spine. But, as we should be accustomed by now, we don’t know what we don’t know.

Jordan is a little deflated. So are we.