Jordan's Journey

“I don’t want to take it off!”

Jordan ran to a corner, arms folded, crocodile tears streaming down her face. In the opposite corner, Jeanette and I did all that we could to suppress laughter. Jordan clutched her right forearm defiantly. A crusted, dingy sliver of translucent adhesive tape dangled near her finger tips. It was a stowaway from her hospital stay. It once held the IV tubing in place, but now it stuck to her arm like a vestigial organ, its only purpose to collect bits of dirt and grime. Jordan refused to take it off when we left the hospital. While she loves the application of bandages, she is recalcitrant about their removal. After all she’d been through with surgery and a cancer diagnosis, we decided to wait and let her take the tape off when she felt ready. Then two weeks passed. We needed to draw the line. The darn thing was just not hygienic. (more…)

Jordan will return to school on Monday. It won’t be soon enough for her. Saturday morning she whined while sitting at the breakfast table, “why can’t I go to school today?” An explanation of weekday mechanics did little to pacify her, so she ran off to get some “homework”. Of course, Jeanette and I plan to use this episode to our advantage in later years, when it is possible that her academic enthusiasm might wane. (more…)

Jordan leapt forward with great progress this week. Her dressing was removed today and the surgical area is healing perfectly. Her mood is good and she’s regained much of her physical and cognitive abilities. She’s scheduled to start chemotherapy next week. In the meantime, her doctors have given the “all clear” to return to school and normal activity.

It’s been a very good week. A la David Letterman, following are the top 10 reasons we know Jordan is getting better. (more…)

At age 14 Sylvia Plath wrote, “How frail the human heart must be — a mirrored pool of thought.” Years ago when I read this I thought it a deep sentiment for an adolescent. Watching Jordan struggle with her own mirrored pool of thought this week, the poem found new meaning.

Physically, Jordan is recovering well. She adeptly moves around the house, only occasionally needing to balance herself. She appears to have less visual impairment. Nearly gone is the one-eyed squint she adopted when watching television or focusing on an object for awhile. Her appetite is back and she’s singing again.

Yet recovery requires more than physical recuperation. Jordan struggles with her own thoughts. Sometimes, she is troubled by her mind’s misperceptions. The brain is a delicate organ. It will take time for her internal CPU to finish the reboot process. The experience is often frightening for her. She is reluctant to share this fear. But occasionally it wells up and pours out of her in revealing statements — statements adults would struggle to shape themselves. For example, tonight, as I lay beside her, she said to me, “I miss me.” (more…)

I am very superstitious. Truth. I cross my fingers, knock on wood and stay quiet in winning streaks. When I’m writing a new piece of fiction, I never discuss it with anyone for fear that the idea will be jinxed. So forgive me for prefacing this journal entry with a disclaimer: it is still early and our family is learning to take one day at a time. That said, Jordan is showing signs of improvement. She was far more animated and alert today. Up until today, there’s been a little less sparkle in Jordan’s smile, a shallow depth in her expression and a distance in her eyes. All of these symptoms are subtle. Only those who know her would perceive the deficit. Today, it began to dissipate. (more…)

Cancer.

Finally, they said it. Strangely, it was a relief. There were no more ambiguous references. No pregnant pauses. Just the word.

Cancer.

We expected to hear the word, though it never before entered conversations with the physicians. Today the word became part of the dialogue.

Our daughter has cancer.

Technically, she is diagnosed with low grade glioma in the form of leptomeningeal astrocytoma.Her prognosis is good. Dr. Finlay likened her condition to a chronic illness, abstractly analogous to asthma. In her present state, she is not a patient with terminal illness. Her doctors believe her tumor is treatable with a manageable regimen of chemotherapy. Radiation is happily not part of the plan, and the chemo cocktail they recommend will not cause her to lose her hair. The pathology of the cells biopsied showed very slow growth. Dr. Finlay commented that these cells appeared to be dividing “in spite of themselves.” That means that we have ample time to wage war against the disease. (more…)

She’s had a very good morning. She slept well. She woke up smiling. She had no trouble standing on her own. She asked to go play. She ate a full breakfast and asked me to bring her tea this afternoon. We laughed as we pinched mommy and we joked about how clumsy I am. The neurosurgeons paid a visit early in the morning, and we were very glad to see Dr. McComb back on rounds. Something about his presence puts us at ease. She’s still in PICU, but only because they cannot find a bed for her elsewhere in the hospital. They want to move her today. All of the tubes are gone, except for a dangling IV that they connect only when they need to administer medications. (more…)

This is one of my favorite poems, and it captures how I feel about Jordan quite well. I’m not sure where I stand on religion these days. I’m a terrible Catholic. But this poem, by ee cummings, expresses so much of how I feel about my daughter.

Somewhere I Have Never Traveled – W[Viva], XXIX

somewhere i have never travelled,gladly beyond
any experience,your eyes have their silence:
in your most frail gesture are things which enclose me,
or which i cannot touch because they are too near

your slightest look easily will unclose me
though i have closed myself as fingers,
you open always petal by petal myself as Spring opens
(touching skillfully,mysteriously)her first rose

or if your wish be to close me,i and
my life will shut very beautifully,suddenly,
as when the heart of this flower imagines
the snow carefully everywhere descending;

nothing which we are to perceive in this world equals
the power of your intense fragility:whose texture
compels me with the colour of its countries,
rendering death and forever with each breathing

(i do not know what it is about you that closes
and opens; only something in me understands
the voice of your eyes is deeper than all roses)
nobody,not even the rain,has such small hands

Jordan checked out of pediatric ICU this evening around 6:00pm. She’s back in the oncology unit on the 4th floor of Children’s Hospital. She is very happy to be back near a television that has more than one kids channel. When I left, she was engaged in a Sponge Bob Square Pants marathon. Her health was much improved. Other than a little nausea, she was far more lively. It was a good day for the whole family to catch its breath and recuperate. (more…)

If you were hoping to read a positive entry from me today, you should click on to another URL. I’m dour and angry, resentful and dramatic. I usually try to dig deep down and find a bright side to share with friends and family, to keep everyone thinking good thoughts. But today was a bad day. My little girl is suffering and I’m tired of trying to help others feel better about our situation. I want Jordan to feel better. I want my beautiful, charming, brilliant little girl to jump off of that hospital bed and come running back home. Sorry, folks, this journal entry is not part of Larry’s optimistic library. (more…)