The Outlier

Reason would dictate that pit bosses in Vegas should shun Jordan from their tables. She’s the one who statistically should hit it big any time she plays the odds. Less than 1% of children are diagnosed with brain tumors each year. Of that tiny percentage, even less are diagnosed with neuroglial tumors like Jordan’s. Vincristine, one of the first chemotherapy drugs she used early in her treatment is one of the most widely diagnosed in protocols. Less than 3% of patients who take Vincristine develop serious side effects. Of course, Jordan was in that 3% minority which led to the nerve damage in her legs. So it should be no surprise that the latest step in her journey is a statistical outlier.

I’ve previously written about the leg and arm spasms Jordan has endured. Unlike the seizures, Jordan is fully conscious when her extermities begin trembling and spasming. We’ve tried a few drug therapies, but they have either proven ineffective or they produced unpleasant side effects. The condition has progressed into something even more rare. A few weeks ago, her legs began lifting up in involuntary rhythmic movements. We’re not talking about spasms. These are full-fledged extensions of her leg. She looks like she’s imitating the “silly walk” of Monty Python fame. In fact, the first time I saw it I told Jordan to stop kidding around. But there was nothing funny about it. When these motions begin she has no control of her leg, and it terrifies her. Just looking at her face you can see how concerned she is that her body is out of her control.

The doctors believe that Jordan has developed West’s syndrome, a very rare neurological condition that causes parts of the body to convulse severely. It was known for many years as Salaam Attacks because as it progresses some patients developed involuntary spasms of the head and torso that resembled the ceremonial bowing of Eastern religions. You guessed it, Jordan has developed this rarity as well. She’s not in any pain, but when these attacks come on she says “it completely freaks me out.” She is able to talk with us in the midst of the attack, and she tells us that she’s embarrassed and that she wished her body would stop doing this. It makes me sad to hear her distressed, but her complaints are more angry than sad. She gets frustrated with her noncompliant body.

We have three neurologists working on the case. They’re changing her medication and planning to study with additional tests. We’ll all be paying particular attention to her next MRI, which is scheduled for the first week in April, to look for signs of further tumor advancement. It’s possible that the condition has developed because the cancer is on the move again.

Other than the occasional attacks, Jordan is upbeat. She goes to school most days and her mood has been good. She’s been off chemo for three weeks because her counts were too low. The doctors decided to let her coast until after the MRI, which suits her fine. She loves when life is mostly normal. I’ve decided to use some of this downtime to teach her how to play cards because one day in the future she and I will give Vegas a run for its money.