Jordan's Journey

February 25, 2009

Ambiguity

Filed under: The Big Steps, The Journey — Larry @ 5:46 pm

Jordan Post MRI A groggy, and slightly cranky Jordan rests after the MRI

It was a long, long day. For the most part, it went well. Jordan cooperated with the technicians for her MRI and she came to afterward with only minor fuss. She was groggy for the early part of the afternoon.

Unfortunately, computer trouble at CHLA kept her doctor from having a look at the scans, and it is too early for the radiology report. We may have results tomorrow. We spent a lot of time with the doctor today, reviewing her case and tracing the history. It is growing likely that Jordan will have more surgery. Some of the reports are in from all the tests on her legs. The doctors doubt that physical therapy alone will restore her muscles to normal functionality.

As for the tumor, without having the latest analysis of the scans, we’re coming upon another fork in the road. Assuming that the scans will show that the enhancements remain stable, we may begin down a path that ends Jordan’s chemotherapy. Her tumor is an unusual beast. It’s very hard to tell if it is still active. What we see in the MRI scans may in fact be dead tumor. The only way to know for sure is another biopsy, and neither we nor her doctors are keen on poking around in her head just to see if the tumor is alive. We may continue her current regimen of chemotherapy for another 6-7 months, then stop and monitor her progress at frequent intervals.

The effects of cancer interfered in Jordan’s life in 2003. She was four years old. From the very beginning, her journey has been unpredictable. The doctors spent most of the first two years trying to figure out what was making her sick. Our options were never entirely clear. After she was diagnosed in late 2004, the path seemed deceptively more defined. But every time we thought we understood the situation, the path twisted beyond our expectations. Cognitive deterioration. Seizures. Immobility. Coma. Her tumor is so rare, there is no probability curve.

Comparing NotesOnce again, we’re in uncharted territory. It has been two years since her last hospitalization; two years since she hit rock bottom and left us for a week, drifting in unconsciousness. Today, she is thriving on many fronts. She is growing (in the 75th percentile for height), blossoming, and learning. And while we are happy that she may soon put an end to weekly dates with a needle and a dose of toxic medication, we’re still paralyzed by ambiguity. Any journey with cancer is an uncertain one, but Jordan’s journey has become an epic without a third act. Obviously, we hope that act is the triumph of the hero. We hope she takes a cue from Joseph Campbell and returns from the abyss with the magic elixir. Perhaps she has. The trouble is, we don’t know. And so our family snipes at each other and stumbles over tension when we should welcome a little closure. It’s hard to welcome closure when the next chapter is as ambiguous as the first.

1:20pm

Filed under: The Journey — Larry @ 1:24 pm

It’s been a frustrating day. As much as I love Children’s Hospital, and I do love them, they are a case study in dysfunctional operations. If not for the unbelievable talent of the doctors and nurses, I’d consider moving Jordan’s case somewhere else. But the doctors and nurses are fantastic and I can’t imagine trusting her care to anyone else.

I took the day off to be with Jordan, but the hospital implemented a new policy that only one parent can be with the patient at any given time in the radiology unit. So, Jordan is resting in recovery and I’m stuck in the lobby. It would have been nice to know about the rule change (especially since the hospital calls the day before to go through the procedure), but as I said, operational excellence is not CHLA’s strong suit.

It’s a long day and we’re all a bit edgy. We won’t know how the scan went until later this afternoon. Jordan has a list of requests for her team. She wants permission to pierce her ears and she wants them to stop giving intravenous chemotherapy. I suspect they’ll clear the former and deny the latter.

10:40am

Filed under: The Journey — Larry @ 10:44 am


MRI Prep

She’s in the tube for the next two hours. She had an easier time getting accessed today. She still gets anxious, but she did her best.

February 21, 2009

Back in the Tube

Filed under: The Journey — Larry @ 8:36 pm


Jordan’s Saturday iPod Maneuver

It’s back to the MRI this week. On Wednesday. The mood is mellower than usual. It’s not to say we worry less. We just cope better. Jordan went in for a “walk study” on Friday. They punctured electrodes into her muscles and asked her to walk on a treadmill for a bit. They want to see if she can avoid surgery on her legs. The jury is out. But at least we have more data. Data is good. We’ll have a dose more on the progress in her head on Wednesday. Think good thoughts.

February 16, 2009

Hope

Filed under: The Journey — Larry @ 7:48 pm


Portrait in Knit Hat 3

In her confident gaze, I see all that is right with the world. She doesn’t blame. She rises. She doesn’t regret. She hopes. The reason I laugh and cherish, imagine and float, is because of that spirit. It’s uniquely hers. Even when she is dour, that life is in her. It never surrenders and it never resigns to the pessimism of others. Her spirit is living. It’s sublime.

Monkey in the Morning

Filed under: The Journey — Larry @ 10:16 am


Jordan’s Favorite Tea Cup

I relish mornings. It’s prime writing time. Quiet, new, open. Even though I was up until nearly 2am last night, it didn’t stop me from rolling out of bed by 7 without any help of the alarm. Twenty minutes later and I was sipping coffee, clacking away on a new writing project. I got so absorbed in it I almost didn’t hear Jordan foraging through the pantry. The back of her head was all that was visible between the oak doors. Her uncombed hair scattered about as she dug around looking for a box of cereal.

– How did you sleep, pumpkin?
– Oh, alright, but I’m a monkey today.
– And you’re a monkey who slept well?
– Yes, I am. Can you help me pour the milk?

I sat her down at the dining room table and fixed her some tea. When it was ready she asked for the monkey cup–a piece of china my sister sent her years ago. She doesn’t always ask for it, but there is no doubt she favors it. (more…)

February 14, 2009

Reanimated

Filed under: The Journey — Larry @ 10:38 am

She’s been sick with the flu. Her counts were so low on Monday that she had to skip chemo this week. But she’s on the mend and resuming her nonstop pace. Today she hopes to make a cake. She’s already made several calls to her friends and she’s gearing up to design custom Valentine’s cards.

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