Jordan’s Journey

She is back at Ronald McDonald Camp, and very excited about it. We won’t see her again until Thursday. She took her camera and promised to snap lots of pictures. I miss her already.

She had a rough chemo day. She did great getting accessed and hob-nobbing with some visiting celebrities. But the drugs socked her a little harder than usual. We think her body is starting to tolerate them less. She gets sick almost as soon as they drip. Fortunately, she doesn’t need to tolerate the drugs for much longer. Though chemo may have won today’s battle, you’d have a hard time seeing it now. When I came home, she was still glad to see me, still incessantly chatty, and still spirited in just about every way.

She gave me a handsome handmade card. She drew all the pictures, and dictated her sentiments to her school aid. Here’s what I received in the booklet card, panel by panel:
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He’s a great tickler! He knows my tickle spots, especially the one under my arm and my neck!
–
I also like to watch Andy Rooney with my Dad!
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He’s so clever about making podcasts with me.
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And he’s so busy working on my book.
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He’s the only one who can say fast “snugglebug sugarbug snicklefritz.”
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He’s a great cook! He makes the best scrambled eggs and soft bacon.
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I love when he reads books to me and we cuddle.
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It’s great to have a dad like mine. He’s the best dad ever!
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I love my dad. Love, Jordan

I read this thing over and over, and every time, my eyes get wet. Love that girl.

Jordan, The Persistent

She plops down on the sofa next to me and sighs.

– When are we going to the store to buy my tea?

– When you clean your room.

– Oh!

She groans and heaves another sigh.

– You always want me to clean my room.

– If you didn’t mess it up, we wouldn’t ask you to clean it.

– But I want to get that tea. I love that tea.

– And I want you to clean your room.

She shakes her head and flaps her hand in the air.

– We have two problems, she says philosophically.

Jeanette lifts her book closer to her face in order to hide the laughter.

Two Strong Women

One has quiet strength. She can withstand setback after setback, steel herself and trudge forward without much complaint. The other is a lion. She will overpower you with the force of her will, and let everyone in her path know that she has conquered you. My wife and my daughter flirt with strength on very different paths–paths that have converged on an epic scale. At times, they butt heads. But just as quickly, they console one another.

In a few days, Jordan will be on summer break. The two girls will spend a lot of time together, some of it in a hospital, some of it on a bumpy road to recovery. It isn’t clear yet how much work there is ahead, but one thing is certain: the women in my life will lead us through the next chapter of Jordan’s Journey.

Hooded Bandits

She was supposed to clean her room, but she spent most of the day prancing around with a feather duster. I occupied my time playing with the camera. Occasionally, she would sit with me for a portrait or comment on one of the photos. She’s excited for summer to start, and she’s eager to go to camp. Though she doesn’t let on, I think she was rather pleased with her latest test results. I hope she always carries this mighty strength with her, well into the days when she is old and grey … when others begin to act a little feeble. With her will and her energy, she could conquer the world.

Just received fabulous news! A senior neuroradiologist at CHLA reviewed the film from the MRI scans Jordan had last week. He compared the new scans with a study from August 2008. The comparison demonstrates “significant reduction in the thickness and prominence” of the disease around her brain.

Standing four foot ten inches tall, she is in the 75th percentile for height in her age range–a tall, leggy beauty. She scored 60 out of 60 on an English and vocabulary test–a verbose, dizzyingly articulate, and an often downright sassy debater. And she is 108 days away from an end to chemotherapy–a testament to a will so powerful, cancer runs for the hills.

Jordan finished the week putting numbers on the board like LeBron James. An MRI on Tuesday revealed stable progress in her battle against the brain tumor. She handled the procedure with easy maturity. Her doctor was impressed with her height and her perfect weight. She is doing so well healthwise. I sigh every time I see the numbers. They give me hope. The medical team has set a date–September 14th. If all continues going well, that is the date on which they will stop administering chemotherapy. And even though surgery is looking inevitable, I know my daughter can handle it and make the rest of us look silly for dithering over a sniffle. I often say I am proud of my midwest heritage. Well, that pride beams through my daughter’s resilience. She embodies the strength and countenance of Irish America.

She took all the news in stride, more proud of her standardized test results at school than her body’s accomplishments. Tonight, I found her lounging in our bedroom, a tray on her lap riddled with magazines. She wore her brand new pajamas. A TLC reality show played on the television, but she paid it little attention. She highlighted photographs and passages she admired. When I walked in the room, she barely acknowledged me; then told me she was looking at pictures for her magazine. Her eyes never broke from the pages. She talked to me while looking down, absorbed in her quest.

While I was traveling this week, Jeanette told me that Jordan wanted to wait up for me so that she could give me a hug. Now that she was awake and I was home, I asked if I could get that hug. She stopped what she was doing, stood up, and squeezed me energetically. We talked for a moment. She told me that she thought the show she was watching was interesting — a show about little people.

– Dad, look! They are little people. They’re little. Can you believe it? Sometimes they look tall, but they are small. Isn’t that interesting.

I stifled a giggle and told her I thought it was, indeed, interesting. She went back to her work, but not without telling me how much she enjoyed the thimble full of red wine I poured for her.

– That wine is beautiful, beautiful like a cherry blossom.

And as quickly as I caught her attention I lost it. She hopscotched into a world of words she couldn’t understand and images she revered: bright colored fashions, three column layouts, and beautiful people. I said something to her about Harry Potter, but she was lost in the booklets.

I cheer her for her passions, and her strength, and her sometimes apathy toward the world that surrounds the fascinating universe in her head.

Pink and purple refract from her body in kaleidoscopic patterns–a spring skirt, a bright top, a jaunty hat. She has erupted from her room, petals showing, ready to pollinate. Her latest seed ground: publishing. She informs me that she plans to edit a fashion magazine.

– I have to talk about fashion, Dad. Because people need their fashion.

I can’t help noticing that she has found her glasses. She wears them selectively. Her vision is decent, but the specs are a matter of style. I think of Edith Head as I lock onto her cerulean eyes through smudged lenses set in purple tortoise shell frames. Judging by her demanding schedule — she needs to get the spring magazine out “before spring is over!” — perhaps an analogy to Anna Wintour is more appropriate. (more…)

We talked to the orthopedic surgeon today. And, Jordan will need surgery. Two surgeries. They want to move tendons, sculpt muscle and chip bone–on each foot. It sounds dreadful. She wants to have the feet done at the same time, but the surgeon advised against it. He told her she would be in a cast for a month and not able to stand on her foot. She said that was okay. Jeanette made a deal with her. Try sitting for four hours. If she is fine just sitting, we can talk about doing both feet at the same time. Good God! I can hardly blame her. She wants one step in her journey to be expedient. But this one won’t be.