Jordan's Journey

Jordan: Bacon-Lover

By the time my preparation of the Sunday breakfast fixings was complete, she lumbered down the stairs. As usual, she was ready to go from the time of waking. I barely had a moment to say good morning before she started rambling action items for the day.

Jordan can be quite regimented. She has it in her head that on Sunday she must be served an omelet with bacon and goat cheese. If goat cheese is not available, she will settle for cream cheese. Saturdays are for pancakes, but Sundays are always for the Jordan Omelet. So it is written. That’s the rule, and woe be the daddy who doesn’t follow it.

I made this omelet for Jordan over a year ago when there wasn’t much else in our fridge. She loves goat cheese, so I improvised and it’s been her omelet of choice ever since. What she forgets is that the first time I prepared it for her, I also included some sauteed onions and mushrooms–and she loved it. But, let’s face it, Daddy can get lazy on Sundays. Over time, I’ve just cut straight to the bacon and cheese and left out the relish. Today, I thought I would live up to my potential. I prepped a lovely mixture of sweet, sauteed onions in browned butter, with tender mushrooms and a dash of parsley and cilantro to balance it all out. I really felt I had fulfilled my paternal obligation this day … until Jordan sampled it.

– What is this?

– It’s your omelet. I got all of the ingredients today.

– Dad, my omelet is bacon and cheese. Bacon. Cheese.

I tried to explain that she had this before and loved it. She stared me down warily, took a few bites, then told me she had to think about it. She asked me to cover it so she could give it another go in a half hour, then she climbed the stairs to take a shower .

I sat down with my coffee, crunched on a strip of bacon and had to laugh.

– Bacon. Cheese.

I get it.

Jordan in Scrubs

The nurse walked right by Jordan. She looked around the waiting room curiously and then asked Jeanette where she was. Jeanette pointed to the vending machines where Jordan stood wearing her favorite pair of scrubs–the ones she wore for Halloween. Jordan thought it was hysterical. We are relieved that when she visits Children’s Hospital these days, she blends into the scenery because she’s in disguise, not because she is such a frequent visitor.

She had a routine checkup today. They flushed her port and had a look at her to see how she’s coming along two months after chemotherapy. Her doctor and all the nurses were struck by how well she looks, how tall she is growing, and how grown up she appears. She gave them no trouble when they needed to access her port, and she earned a plate of sushi for her good behavior. She still can’t get a flu shot. Even CHLA is out of supplies. It worries us a little, but we keep our fingers crossed and wash our hands a lot.

I wish I could have been there with her, but I have been on the road since Monday. But I’ve been smiling all night thinking about my little girl wandering the halls of CHLA in her scrubs telling everyone she plans to become a nurse, and actually blending in with the nursing crew.

She’s doing well, no new episodes. She will see her neurologist next week. The doctors don’t seem as concerned as us. That makes me antsy, because I don’t like waiting. But we’ll have real data to evaluate next week. In the meantime, Jordan is very content and feeling great. She even managed to use the seizure as a rationale to get out of cleaning her room.

It’s Tolstoy’s fault. Or maybe Dickens. Shakespeare didn’t help either. I suppose if we’re really pointing fingers, you’d have to include the Greeks and all those cavemen who told stories by firelight. I thank them all for sometimes dashing my hope. Because we all know the stories. The stories have been told so many times that in our heads we jump ahead to the ending the minute we recognize the beginning. I blame all of them for making me doubt, especially on days like today. Jordan had another seizure today.

It wasn’t a big seizure–not like the ones a few years ago; the type that knocked her out, took over her body, and at one time, endangered her breathing. Today’s seizure was small. She thought she had to sneeze, and then she disappeared standing up. Her eyes fixed at a distant point. She was unresponsive. Her speech slurred. She checked out from the world for just long enough to send those around her into a panic. Fortunately, there were many around her. Jeanette was there with several of our neighbors and their dogs in tow. They were a wonderful support team. I was in San Diego at client meetings and unable to help at all. When Jeanette told me what had happened, my heart sank.

It could mean absolutely nothing. Even though Jordan has been steadily recovering, her brain has been riddled by disease. Though the tumor hasn’t shown any signs of growth, its carcass is strewn about in her head. Even if it is still dead, the weight of the dead tumor is itself enough to make the brain misfire at times. That’s why she’s still on anti-seizure medication.

But what if…

She stopped chemotherapy in September. Our plan was to stop the drugs and “wait and see”. She’s due for an MRI in December, when the doctors will look hard to see if the cancer remains dormant. Of course, my mind has skipped to the end. What if this sudden change is the second act clue of what’s to come? What if this is the warning sign that the disease is active again? I want so much to believe it’s not, but I’ve spent too much of my life reading the works of those who came before. The story is in my head. And though I am so often a sad optimist, I have no words of cheer today. No great and tidy conclusion to my post. Just a lot of worry and a bit of resentment at the bards who’ve filled my head with doubt.

The Lovepug

Fewer words on the blog always means the same thing: progress. I must admit, I’m a little reticent to say much every tenth month of the year. It’s one of my favorite months, but for so many years it was a curse for Jordan. She beat that curse in 2007, and ever since we’ve been so happy not to spend time in hospitals or wringing our hands hoping she was okay. She is more than okay. She is fabulous.

She has taken a break from chemotherapy for the past two months and you’d almost wonder if she’d ever been sick at all. Sure, her logic is dizzy at times, but she’s quick as a wit in her observations and her stream of conversation. We still worry about the legs. We need to fix those, but quite honestly, we’ve been loving this “normal period.” We’re loving time as a family, without needles or protocols.

So, another October passes and Jordan focuses on how much candy she can bag, rather than how many days until she can go home. That’s progress. That’s my daughter.