There’s a way she looks at me sometimes that puts me so at ease even though I’m a bundle of nerves. I could say that it is a wisdom beyond her years, but I know that it is actually her own nerves battling her resolve. When she is truly troubled about something–something that requires her to quiet herself and wander through her thoughts–her eyes take on the most lovely stillness. They are absolutely alive, but her gaze turns gentle and the corners of her mouth relax. It is not the facial expression you expect. We’ve seen her worry about surface issues. Her brows furrow. She crinkles her nose. Her eyes grow wide. But whenever she considers anything with gravity, it is the face I saw before me last night.
The slayer is in the fight again. The tumor in her spine has grown and it is seriously threatening healthy tissue within her spinal cord. This explains many of the recent health issues she’s experienced. We suspected something was afoot, but we learned officially yesterday when we met with the oncology team at CHLA. As we have already fought this tumor with chemotherapy and with radiation, Jordan’s medical team has suggested surgery within the next few weeks. Her situation cannot be ignored, and it cannot wait. We need to remove or stop the tumor before Jordan’s condition further deteriorates. The risk is high. If there are complications, she could be paralyzed from the waist down. But if we don’t do surgery, she most certainly will face the same outcome, and if the tumor spreads up her spinal cord, it could become life-threatening.
Jordan took the news hard at first. When she learned that the tumor was growing again, her first concern was that she’d have to restart chemotherapy. She told me, “I don’t want to get poked every day again. And I don’t want the medicine that makes my tummy hurt so bad.” Fortunately, chemo isn’t in the mix right now. After surgery the tissue will be biopsied to determine the tumor type. At that point, the oncology team will decide whether or not it is necessary for Jordan to recommence chemotherapy. Once she got over concerns about chemo, she expressed worry about having surgery. She remembers the pain of her leg surgery last year.
We had just left CHLA. Jordan, Jeanette and I stopped at El Cholo for dinner. We thought it might cheer her some and we were famished from a full day at the hospital. We shared the news with Jordan just before the food arrived. That’s when I got the deep, pensive gaze that accompanied her questions and concerns. She was quiet for a moment or two. Then she looked up at me, and with a maturity I find hard to comprehend she said, “let me think about it for a day. Let me sleep on it, Dad.”
Sometimes her pat answers and inspiring resolutions concern me. She’ll offer statements that sound more like a motivational quote than a true understanding of the situation. But today I knew she knew. I knew that she had been worried about this day for as long as we have. She’s felt her body betray her. All the symptoms we were told to watch for a year ago have come to fruition. She has back pain. She gets very fatigued. She has less balance on her feet. She has suffered embarrassing bouts of incontinence. With each passing day, her body reminds her something isn’t right, which might be why she was not nearly surprised by the news as I thought she might be.
I suppose it would be easier if this were the only challenge we were facing, but we still have the matter of the seizures. They come 2-3 times a day now and they have grown more powerful. In the past, the seizures mostly affected her ability to speak or understand what was going on around her. Now, they are taking over her motor function. When her legs first started shaking uncontrollably, we thought maybe she had restless leg. But the shaking has gotten worse and within minutes of an onset she loses control of her arms. Her entire body jerks as though a puppet master were toying with her. The hardest part for us is that lately Jordan has not blacked out. She’s aware of what her body is doing and it terrifies her. Last Sunday, I was standing in the doorway of her room when the seizure started. When her arms started jerking, she looked over at me very concerned and said, “this is so scary, Dad.” When the arm and leg spasms stop, Jordan gets very cold and her teeth chatter. On that day, she just cuddled with me, letting me warm her with my arms while she got quiet and eventually settled down for a nap.
The medical team does not believe the tumor is causing the increase in seizures. Instead, they believe something is happening in her brain. While her MRI doesn’t show much new tumor activity in her brain, the PET scan revealed a significant amount of calcification. We don’t know if her seizures are increasing because the tumor is continuing its slow progression, or because her brain is trying to cope with cancer’s aftermath. There is no prognosis, and no immediate treatment plan. This, perhaps more than anything else, is the most devastating part of Jordan’s latest step. She’s afraid to go out. She worries about even the slightest tickle in her stomach. She’s losing confidence. Sometimes, I think she gets blue. And the seizures always take so much out of her. She sleeps a lot and she has lost weight.
As if on cue, minutes after we talked to Jordan in the restaurant about her situation, her leg began shaking. Jeanette gave her some medicine and we talked to her quietly to see how she was doing. Jordan said, “let’s go home. Let’s take the food to go.” We had just sat down and hadn’t placed our orders. Jordan fidgeted in her chair and wrung her hands.
–Jordan, is your leg still shaking? Are you feeling any better?
I searched her eyes for clues. She was anxious, but she told me that her leg wasn’t shaking any more. I put my hand on her thigh and could barely feel the spasm. It appeared it was only a small seizure and maybe the medicine was helping. But when the waiter came to take our order, Jordan’s arms began shaking. I reached under the table and felt the spasms in her legs. She kept twisting her head awkwardly to look up at me. She could speak, but her eyes were preoccupied. The waiter paused from the order and watched with concern. I meant to say something, to explain what was happening, but I was focused on Jordan. I held her and kissed her forehead as her body began to relax. She was quiet for a couple of minutes and then said, “Can we have some flan?” Just like that, she was back.
Truthfully, Jeanette and I don’t know what we should be doing and we’re not feeling that we’re as strong as we can be for Jordan. There’s just so much uncertainty, so much to process. We’ve stayed pretty quiet about her recent change in health, opting to wait for more information from the medical team. As you might imagine, we often linger in dark thoughts. We don’t know if this is the beginning of a progressive process. We don’t know if the disease is switching gears. We don’t know if the tumor grew to its current size in 3 months or 3 weeks. We don’t have reason to believe that Jordan’s life is in danger, but things are changing so quickly and we’ve been watching her fade day by day. Sometimes, all we can do is close the door to our bedroom and cry together. We want to be very strong for Jordan and for Luc. Our family is so important to us. It’s important to Jordan, too.
We don’t know yet when the surgery will be scheduled. When it’s done, she’ll be in the hospital for about a week. It will take several weeks for her to fully recover. As much as I dread the process she must experience, I have every reason to believe that Jordan will approach it as she always has–with stoicism, bravery and a take-no-prisoners attitude. I rarely appeal to my friends on this journey, but this time around I will need their help. After eight years, we’re all showing signs of wear and tear. We have been blessed with a terrific circle of kind souls, some right in the neighborhood, some halfway around the world. I may not be able to post as frequently, and my posts might was a bit more dark than usual. I thank you all in advance for your kindness and your support for my family during the rough days ahead.