We play games when we gather for dinner, especially when we eat out. We began the practice several years ago to prevent the incessant quarrels the kids would start when left to their own conversations. Word association games are our favorite. Jordan is quite good at these. I think it is the truest sign of her intelligence. Though her brain starts and stutters over matters of common logic, she can string ideas together with an uncommon and poetic wit. When she played along at dinner Tuesday night, seated at a small table at Rosebud’s on Rush, “blue” evoked “Billie Holiday” and she associated “ocean” with “miracle.”
It doesn’t take long for a word association game to get old, so we mix in other variations. The kids favor a new game we invented where one player provides a few clues about a movie and the first one to guess the title gets to go next. This game has a limited shelf life because Jordan has limited cinematic knowledge–but she loves the game. When we had exhausted her set of film titles, we moved on to the either/or game. I think this game is the most interesting in our arsenal because it reveals what people value. You play by providing stark contradictions and asking a player to state which they prefer. For example, I might ask you if you prefer to have great artistic ability or incredible physical strength. The rationale people provide is what makes it interesting. But Jordan struggles with this game. Even though she is known for being head-strong and a do-or-die provocateur, she hates to make choices when the field is nuanced. Ask her to choose a favorite television star, iCarly or Hannah Montana, and she’ll tell you she likes them both. Add the condition that she can only take one of them with her to live on a desert island and she will tell you it’s a silly question and that she’d prefer to take them both.
Nevertheless, while we waited for our food to arrive, we decided to give either/or another try. We chose a counter-clockwise rotation, which meant that Jeanette asked Jordan her questions and Jordan asked me hers. The first time around, Jordan asked me, “Happy or sad?” I laughed and briefed her on the big idea again. I asked her who would choose sad over happy?
–So which one do you pick, Dad?
She listened as we circled the table again. Luc asked a real-thought provoker of Jeanette, which slowed us down a bit, but Jordan’s turn came soon enough and I found her leaning toward me.
–Live or die?
–Live, of course! Jordan! I’m not sure you’re getting this game.
–I am, Dad! It’s just a question.
She rolled her eyes as we provided some examples of how she might rephrase that question: live long without a penny, or die young and very rich.
–Got it, Dad.
–Do you want to keep playing?
And so the questions again circled the table, and again it was Jordan’s turn. We coached her a little more. The smile on her face said she had a great question for me. Her left eyebrow arched wickedly, implying that I might have to think about this one.
–Dad, prison or a nice hotel?
She laughed right along with us, as if she knew that her question was absurd. Maybe she did. Maybe she didn’t. It was good to see her laugh. We had traveled for hours and then drifted around the city trying to find a place to have dinner. We wanted deep dish pizza, but every place we went had a wait of an hour or more, and we were famished. Though Rosebud’s is a tourist trap, we got in quickly and the food was tasty.
Sitting around that cramped little table, we all tried to ignore why we were in Chicago in the first place. I think we fooled ourselves to believe this was just another family vacation–a vacation to one of our favorite destinations. But the reality of the next day lingered in our heads. We were here to gather information. A decision loomed, and the reconnaissance we were about to gather promised to guide us in that decision.
By 8:30 the next morning, each of us fidgeted in the waiting room at the oncology clinic at Children’s Memorial Hospital. The vacation illusion had evaporated. We were surrounded by children who were traveling their own journeys with cancer–hairless children, thin children, children crippled by the disease. We flew more than 1,000 miles to find ourselves sitting in a room so very familiar to us. Our escapist whims were arrested by the jarring hubbub of families engaged in the good fight, and we were reminded that our family was very much at war.
Jordan required very little time to become irritable and impatient. She complained about how long it took for us to see the doctor. She whined about being bored. She expressed her dissatisfaction at the comparative size of the play room. She jumped from activity to activity with staccato movements, nervous ticks and punchy statements. Luc hunkered down and played with his iPhone until its battery was exhausted. Then he zoned out with a book. Meanwhile, Jeanette and I felt every bit as anxious. We moved around, shifted in our seats, and occasionally comforted the other with a brushed hand or a brief moment of eye contact. That is, when we weren’t chasing after Jordan. We half feared that she would just abandon us and head out the elevator to the street. The scenario was perfectly believable if you knew Jordan and knew how her mind worked when her anxiety peaked to this level.
The docent who greeted us told us that we won the award that day for traveling the farthest. Like everyone we met at the hospital, she made us feel incredibly welcome. Perhaps that is why the scene felt so familiar. Like Childrens Hospital Los Angeles, Childrens Memorial was staffed by the saintly. In fact, part of the reason we had to wait awhile to see the doctors was because they wanted to give us their full attention. And that they did.
Stuart Goldman is a warm teddy-bear of a man, who enjoys sharing corny jokes with the kids he looks after. If you met him on the street, you might never guess that he is one of the world’s best neural-oncologists. He looks more like everybody’s favorite high school teacher–a man with a warm smile and kind, listening eyes that disarm you with their empathy and sincerity. When he met with the three of us (Luc opted to stay in the waiting room), Jordan told him a joke. She had been advised to do so by Dr. Goldman’s fellow, but the joke was her own.
–Why don’t elephants smoke?
Dr. Goldman glanced back at one of the attendings, then winked at us as he prepared to take the bait.
–Why don’t elephant’s smoke. Hmm. I don’t know. Why?
–Because their butts are too big for the ashtray.
Dr. Goldman laughed out loud and told his team that was a good one. He was going to use it in his rotation. His fellow told Jordan she probably had no idea how much Dr. Goldman would tell that joke. “Now, he has new material. Thank you, Jordan.”
She smiled and some of the tension went away. She cooperated with Dr. Goldman as he examined her. Here and there, the impatience returned. She moaned about wanting to get out of this place and go shopping. Dr. Goldman told her he thought that sounded like fun, and he excused her to go play in the playroom again, if she wanted. She did, and thus began the first difficult conversation of the day.
Dr. Goldman began by saying that he was impressed with Jordan’s strength. If he had read the case history without examining her in person, he wouldn’t have imagined that Jordan was as emotionally vibrant and physically strong. He was also struck by how strong her legs were, given that she had recently had surgery to split her tendons–and also given the location and size of the new tumor in her spinal cord. He told us, as others at CHLA have told us, to look at her scans you would expect a child who was already showing signs of trouble–loss of leg strength, partial paralysis, and difficulty controlling her bowel and bladder function. Knock wood, Jordan hasn’t really demonstrated any of these symptoms.
Like Dr. Finlay, Dr. Goldman would prefer to have a tissue sample from the new tumor. He reiterated Dr. Finaly’s primary concern: this disease can change gears from low grade to high grade. The only way to know is to look at a biopsy. If we understand the histology of the new tumor, we are better equipped to formulate a therapeutic regimen. But, to get that tissue sample, the neurosurgeon has to perform a surgical biopsy of the spine, and that procedure is very risky. It is very likely that Jordan would have less lower body function after surgery than she has today. If she were already showing signs of this functional decline, you might argue that surgery is worth it. But when you see what she can do, you have to ask whether or not the surgery is a risk worth taking.
Dr. Goldman started to share his thoughts on alternatives, but not before reminding us about something we already knew–but it never hurts to hear again.
–You should know that you are in very good hands. Dr. Finlay is one of the finest doctors in this field in the world. He pioneered many of the regimens we use every day to treat our patients. I know exactly why he is recommending a biopsy. I would probably give you the same recommendation. As an oncologist, we want specifics on the tumor before we recommend treatment. And this tumor isn’t easily defined. I’m sure you know that it’s pretty rare.
We discussed the treatment options he might consider if we opt out of surgery. First, we have various chemotherapy protocols. Because Jordan had a severe reaction to vincristine, a drug that is included in many of these protocols, our team may have to adjust the plan–adding to the uncertainty of treatment expectations. We discussed one of the plans Dr. Finlay has suggested, a new approach that was only recently introduced in Europe with some success. We also discussed the San Francisco regimen, a mixture of chemotherapy agents that has been used successfully in the treatment of neuroglial tumors, but includes vincristine as one of its four agents.
Then we discussed radiation. It has its own set of risks, but it has also been used with some success. Dr. Goldman discussed the possibility of full cranial and spinal radiation treatments vs a focused radiation treatment on just the new nodule. The risks of radiation are further cognitive decline and the elevated possibility of secondary malignancies.
Finally, we discussed the possibility of using biologicals–experimental new drugs that use genetic technologies to fight the disease. These therapies have limited track records, but offer promising potential. In theory, they could be very effective, but there is insufficient data to know if they might work. If they don’t, the tumor could get larger while we wait and see.
On Wednesday afternoons, the head of the neurosurgery practice also visits the clinic, so the Children’s staff suggested that we go grab some lunch and return later to meet with Dr. Tomita. When we told Jordan we weren’t done we were met with an agonizing groan.
–Dad, I want to get out of this place and go do some shopping.
–I understand. But remember, we came all this way for a reason and it wasn’t to spend money on Michigan Avenue.
–I just want to be done with this.
We found a pizza place and ordered deep dish. When it arrived, Jordan rejected it immediately because the sauce was on the outside and the cheese was on the inside. Jeanette explained that’s how deep dish is made.
–Just try it. You like cheese.
She eventually tried it and admitted that it was delicious. Halfway into our pie, Jordan and Luc lobbied to play another word game. I really didn’t have the energy to play one and I was distracted by so many conflicting thoughts about Jordan’s latest step. We came all this way and instead of answers, my mind was filled with more questions. This was a good thing. In fact, Dr. Goldman advised us to take some time and write down our questions so that we could further discuss Jordan’s case when we returned. With all these questions racing through my mind, a word association game wasn’t very appealing. Jordan insisted. And so we spent the early afternoon playing “who am I?” a game where one player leaves the table, the others conspire over who he/she is, and then the player returns and can ask six yes/no questions to figure out who they are. Jeanette did not guess that she was Elizabeth Taylor. I guessed that I was Darth Vader. Before we knew it, it was time to make our way back to the hospital.
It took plenty of cajoling to coax Jordan into the exam room to meet Dr. Tomita, a sage-looking Japanese man who spoke with measured, broken English. Despite her cross attitude, Dr. Tomita softened Jordan up and charmed her to cooperate with him. I sat to her right, and when Dr. Tomita asked her to follow the light with her eyes, I noticed the nystagmus in her eyes–the involuntary movement of her pupils that looks like restless twitching when she looks all the way to the side. I have only recently learned that this is the result of nerve damage, probably caused by the pressure build up when she had hydrocephalus. When Dr. Tomita had finished his exam, we let Jordan go back to the playroom.
Using the paper that draped over the exam table, Dr. Tomita drew a pencil sketch of the spinal column and showed us where her tumor was growing. He sketched the likely surgical path, which requires a cut through the spine and into the cord. He explained why the surgery was full of risk. Because it is such a small space and so many nerves are compacted in the region, any cut risks damage to healthy tissue. He said that when he looked at her scans he expected to find her with limited lower body function or the onset of symptoms. But like Dr. Goldman, he was surprised by her strength. After talking with him for awhile, Jeanette and I were having serious reservations about surgery–reservations that Dr. Tomita understood and supported.
A few minutes after we thanked Dr. Tomita and sat with our thoughts, Dr. Goldman and team returned. We discussed the options again and Dr. Tomita’s observations. The neuro-oncology team and the neurosurgery team would meet the next day to discuss Jordan’s case in greater detail and call us with an official opinion, but we were all leaning away from surgery. Dr. Goldman asked us if we had questions, and of course we did. We asked about the risks and side effects of the various treatments. We asked about the risks of not doing surgery. And then we asked about success rates. I told Dr. Goldman that I had extremely high confidence in Dr. Finlay. I trust him implicitly, I told him.
–You should, he said.
–I’ve gotten to know him over the years, I said, and he’s what I would call a passionate optimist. And I love that about him. The glass is always half full, and he always has multiple options baking in his head. He likens Jordan’s condition to a chronic disease, like Diabetes. But I need to know, how serious you think Jordan’s disease is? I realize it’s a loaded question, but if I’m deciding whether or not to go ahead with such a risky surgical procedure, I have to balance her quality of life. I have to understand what kind of battle we’re fighting.
Dr. Goldman had been standing, leaning back against the wall. A moment after I asked the question he smiled and said, “I’m going to grab a chair, because you ask a very good question and we should spend some time talking about this.”
He retrieved a chair from the hall, sat down across from us, and began. As Dr. Finlay told us, Jordan’s cancer is very rare and there aren’t as many documented cases as you will find with other brain tumors. We are dealing with a lot of unknowns. Like Dr. Finlay, Dr. Goldman considers himself an optimist. He is impressed by Jordan’s strength and by the way she has handled seven years with the disease. But he told us he may have a slightly less optimistic outlook for Jordan’s case. That didn’t mean we had to give up hope, but it did mean that we had to understand that her disease is quite serious. It is life-threatening. Though it is low grade, the disease has been known to shift gears. And, even when it is low grade, if a tumor develops in the wrong place, it’s still dangerous. For example, the new tumor has the capacity to cause paralysis. And in the long run, the disease certainly has the capacity to take her life.
–I think you should know that we have lost children to this disease. But you should also know that I think great work is being done to fight it, and our goal should be to keep Jordan healthy long enough so that we can find a cure.
It was hard to breathe. Jeanette’s eyes were red, and I imagine mine were, too, though neither of us cried. I cannot explain the emotions. They pent up for the rest of the week, looking for some kind of release. Maybe I’m not dealing with it, or maybe I’m afraid of what might happen if I just let go, but whatever the reason I feel this pressure inside. At moments like the conversation with Dr. Goldman, the pressure reaches a cusp. I flirt with the idea of breaking down and unwinding every fear, anxiety and tension, but I never do. I hold it in, much like Jordan does. I grab what molecule of strength I can find and I make it work like ten.
I am very grateful to everyone at Childrens Memorial. We live in an amazing world where gifted, compassionate people like Dr. Goldman and Dr. Finlay serve children. Dr. Goldman acknowledged how hard these conversations are, and he reassured us that it was good to ask such questions. He also encouraged us to keep asking them and to keep supporting our strong cancer slayer. The team in Chicago was as charmed and inspired by our daughter as the team in Los Angeles is. As difficult as the conversation was, I am stronger because of it, and I am somewhat relieved to know what I know. I asked Jeanette about this, and she felt the same way. Though I can’t say this is the news we wanted to hear, it is news we needed to hear, and the hearing of it gave us strength. I couldn’t help but think of Jordan’s either/or question. Live or die? She chooses to live, and it shows in everything she does. Living is a verb, but it is a verb we don’t completely control. Right now, we have no control over Jordan’s cancer. In a matter of days, we will decide how to try and retake control. Every option is riddled with risk, but our primary consideration for each option will be to determine how much it lets Jordan live. How much the option will allow her to exercise the verb.
We split up next the day. Jordan and Jeanette returned to Los Angeles on an early morning flight. Luc stayed in Illinois with me to accompany me on some ethnographic interviews I had scheduled for a client. At the airport, as I said goodbye to the girls, I gave Jordan a giant hug and I reached the cusp again. Just feeling her in my arms put me at the breaking point again, and saying goodbye, though only for a day, pushed me to the edge. I held it together, eyes welling up, inner voice coaching me to find an anchor. It didn’t take long.
–See you tomorrow, Dad.
She’s never been good at goodbyes and she had no time for sentimental nonsense. She was ready to board her plane and go home. I kissed Jeanette, watched the two girls disappear into the security line, and walked with Luc to the rental car shuttle. We spent the next 24 hours together, driving across beautiful rural Illinois, walking corn fields with knowledgable farmers, and comparing playlists on our iPhones. Every now and then, we’d laugh about Jordan’s either/or responses. When the conversation would lull, one of us would say, “prison or a nice hotel?”
Thursday, Jordan and I fly to San Jose so that we can visit a well-known neurosurgeon at the Children’s Hospital at Stanford University. We’ve asked his opinion on the surgical option. He is considered one of the leading authorities on surgeries of this kind. After consulting with him, our family will gather to discuss the options and make our choice. But not before Jordan enjoys a full week away at the Ronald McDonald camp, or before we dine together again to play another round of word games.