Jordan considers her next adventure

She leaps from the hospital bed and scrambles for the play room. Jeanette follows her down the hall with several bags of belongings slung over her shoulders. The bi-weekly chemotherapy ritual is underway.

Jordan allowed the nurses to access her port without too much fuss this time. She pleaded for a few minutes, refusing to let the team near her, but then Jeanette intervened and reminded Jordan that she had already wiped off the anesthetic cream. The longer she waited, the less numb her skin would be when the nurse poked her. Jordan acquiesced and within a few minutes she was connected to the drugs. It went smoother than the last visit, when four nurses were required to hold her down.

The cocktail that drips into her veins these days is a plant alkaloid called Irinotecan. It is most often used in the treatment of colon cancer, but in recent studies it is also proving effective in the treatment of leptomeningeal disease. The drug is potent. Less than an hour after it is administered, Jordan doubles over in pain. It strikes without much warning. She is going about her business enjoying the games in the play room when the cramping begins. She calls for her mom and soon she is lying in the bed waiting for the doctor to stop by and order a special drug that will ease the stomach pains.

For some reason, when the doctor does stop by Jordan opts to go without the medicine. She rests for awhile and feels better. The stomach pains come and go. The drug wreaks havoc on her digestive system for a few days, and it gradually weakens her immune system, but she carries on with her customary energy and resolve.

We are intrigued by the latest hypothesis from the medical team. They believe it is possible that Jordan’s cancer is dormant or dead because it hasn’t grown or changed during the last two years of treatment and study. They hypothesize that even though enhancements are still visible in her scans, those enhancements might actually be remnant material from the tumors. To know for sure, they would have to do a biopsy. No one, not even her doctors, wants to order a biopsy. Jordan has weathered two brain surgeries. They are delicate, dangerous operations that are accompanied by slow, uncomfortable recoveries. Besides being an unnecessary risk, the results are likely to be inconclusive. Jordan’s cancer is a large mass that covers her brain and spine. The small biopsied area might confirm the disease is dead, but it couldn’t account for the rest of the effected tissue.

So, we take the less invasive route. Jordan will continue her treatment for 7 months. Then, if her scans remain stable and her condition is unchanged, we’ll stop the therapy and see what happens. We can always resume again, if need be. But we hope that her health continues and she can live without gut-wrenching drugs.

Sadly, surgery lies in the future, but on her legs, not her head. She’s made some progress with nerve-stimulating drugs and a lot of physical therapy, but she’s not achieving the right progress in the musculature of her legs. According to the most recent studies, some of the muscles aren’t responding at all. The doctors haven’t settled on the procedure, and if they recommend it, she has several months before it will need to be performed. The best window is the summer, when she is out of school. It will not be easy. Because both legs require it, she will probably have two surgeries followed by a heavy dose of physical therapy. But when it’s done, her legs will be stronger and she can recommit herself to her dreams of dancing, figure skating and playing tennis.

In the heat of all this treatment, analysis and diagnosis, Jordan carries on. She is certain to have a fresh point of view on just about everything. This morning, she helped me prepare a giant breakfast for the family. She drank coffee with me in the early hours, chatting about books over warm croissants and bits of sausage. We roasted some tomatoes to have with our eggs. She’d never tried them before. On the first bite she waxed euphoric over the sweet richness of the red roasted vegetable. So it is with Jordan. There is always something new to explore and always a fresh way to soak up life.