Jordan's Journey

Back to Uptime Jordan

Sat, 26 May 2012 17:58:00 -0700

She glides her fingers across the track pad of the MacBook she shares with her mother. The white earbud cords dangle from her ears like costume jewelry. She is watching a video on “how to wash a pug” with a cheerful smile and a raised brow. She often comments about the content as if I were sitting next to her listening to the same audio — but of course I’m not. So, every so often the silence in the room is punctuated by Jordan in a loud voice.

—Isn’t that interesting, Dad?

—Honey, I can’t hear what you’re hearing.

—If you use more water the pug’s coat will absorb it.

I stare back at her blankly.

—That’s very interesting

She says this matter-of-factly and then re-engrosses with her video. The full visage of her face is obscured by giant ringlets of hair. She gets tired of brushing them out of her eyes so half the time I feel that I am talking to a shaggy dog, or Cousin Itt. No matter, though. She is radiant these days. She’s gained some much-needed weight and her skin is full of color. The blush is back in her cheeks and the fire has returned to her eyes.

We’ve all enjoyed the last two weeks with our Slayer back at home. She’s gone to school most days, except for the occasion or two when she battled a headache or thwarted a seizure. The seizures come frequently—about one every other day. On most days she just has auras. These disrupt her energetic pace, but don’t discourage her. We’ve learned to dismiss and trivialize the seizures. Jordan responds better that way. There’s no surer way to make her worry than for us to make too much of a fuss or overly-pamper her.

That doesn’t mean they’ve gotten any easier for Jeanette or I. When Jordan had a large seizure midweek both of us were shaken and sad. True to form, when it had passed Jordan asked to go to bed and she slept for hours only to wake and want to tackle the next day. Though it may seem absurd, this is normal for us and we welcome the return of “uptime Jordan.” Sitting here in the living room with her I am kissed with conversational oddities, caressed with dizzy riddles that make me giggle, and courted by random pleasantries that always end in requests for affirmation.

—We do like to sit here and listen to music, don’t we, Dad?

—We do.

—And this is a lovely day, isn’t it?

—It is.

The slayer is coming home today.

Fri, 18 May 2012 07:03:01 -0700

The slayer is coming home today.

Jordan is doing much better. She’s still at CHLA and...

Sun, 06 May 2012 15:20:46 -0700

She is animated and much more Jordan

Enjoying a slice of carrot cake

She's even back to argyles

Jeanette got the room back in shape

I left my girls enjoying media

Jordan is doing much better. She’s still at CHLA and probably will be for another week or so. She’s much more alert and like herself. Unfortunately, the seizures have been coming on stronger in the last day. Nevertheless, she’s in good spirits and she’s appreciated all the love she’s received from her friends.

She’s feeling well enough to sing “Forget You”...

Fri, 04 May 2012 15:40:48 -0700

She’s feeling well enough to sing “Forget You” with Chris Martin and Gwyneth Paltrow. It made the last week feel a lot better!

Perking

Sun, 29 Apr 2012 21:44:52 -0700

Slowly, methodically, she is coming back to us.

When Luc and I arrived for a visit today we found her reclined in her bed very much engaged in a television program. She was still subdued and laconic, but the dazed, catatonic wanderings that set us worrying are more or less a vestige of yesterday. Today, she held a conversation and seemed quite pleased to be present at a family gathering, no matter that it unfolded in a sixth floor hospital room.

She is tired of wearing the bandages on her head. They conceal a thicket of wires and electrodes monitoring her brain waves. She has had to wear her mummy headdress since Wednesday. When she was absent, it annoyed her but she was too out of it to make much of a fuss. Now, with her spirit returning, she scowels whenever she is reminded about it.

Across from her, a computer spits out data from her head while a camera captures her every move. Whenever her leg begins to shake or her arms jerk uncontrolably, or she lapses into a daze, Jeanette scurries over to the computer, hits a button and makes a note of what she has observed. In this fashion, it is hard for me to tell which of my two girls is the true lab rat.

I suppose it is the cruelest twist of irony that Jordan has not experienced nearly the turbulent spasms that started this whole adventure—the spasms we wish to capture on camera and in the endless ticker flow of electrode data. Tomorrow, the doctors have to remove the wires and the bandages because five days is the maximum allowed study period. This has led to some odd turns of phrase from my beautiful wife.

“I really hope we get some good jerks,” she said.

Surprisingly, Jordan agreed with her.

Last night, I tweeted to USC quarterback Matt Barkley. I told him that Jordan was thinking of him as she was coming back to us. She was fighting on. I didn’t really expect a reply. I don’t know Matt, personally. I’m just a loyal Trojan and I have admired his play on many Saturdays while my Slayer sat next to me. She has a mad crush on him. She follows his Instagram feed and often says to me, “that Matt Barkley sure is handsome.” All season long last year she rooted for him with great aplomb. When the plays were tough, she’d shout out “come on, Matt Barkley!” She really does say his whole name. When she doesn’t she just refers to his number. “Don’t let me down, number 7,” she’ll say.

I was settling in for bed about an hour after I tweeted out to him when my phone started chirping. I ignored it at first. I figured it was just the usual late night follower, since I’ve been busy tweeting about brands for my book. But then it kept chirping. When I picked it up I was thrilled to see that Matt retweeted my message and replied that he was praying for Jordan. After that, tons of people I didn’t know started retweeting and following Jordan’s Journey. It was really amazing. I couldn’t wait to see her today to share his message.

Her smile beamed! She said, “oh, that is SO nice of him to wish me well.” Then she looked kind of coy with a giant, genuine smile on her face. I couldn’t be more proud to be a Trojan and to enjoy the support of my extended USC family. I’m very grateful to everyone for lifting my girl’s spirits. It meant so much to her and to me.

Jordan has never been much of a goodbye girl, so I try not to take her coldness personally when I say farewell for the night. She gave me the usual brush of the shoulder tonight, but not before letting me kiss her on the cheek and wish her sweet dreams. “I love you, too, Daddy,” she said dryly when I whispered to her. But then she looked into my eyes for a moment and I could clearly see that my girl was in there and marching her way back. She rolled over after that and began drifting into sleep. I left feeling, for the first time in days, a hint of relief.

We’re not anywhere near the finish line. There are more tests and a bumpy road ahead as we experiment with medications. Many of her anti-seizure meds are reduced, so she is at an increased risk for severe seizures. We’ve also been advised that she may have to check back into in-patient physical therapy. But for now, I’m comforted by the return of my Slayer’s spirit, if only just the slightest percolation.

The Comforting Dream

Sat, 28 Apr 2012 18:02:00 -0700

I have a recurring dream. It’s the kind that seems so vivid you tell yourself in your dream that it’s only a dream, but then you don’t wake up and you begin to think (in your dream) that it’s real. This is a dream about Jordan and hope and being a dad.

In my dream, it is Jordan’s wedding day and I am not very happy. I grumble that Jordan needs special care. I assume the boy hasn’t thought any of this marriage thing through and that my daughter is going to get hurt. I suspect his motives. Sometimes Jeanette agrees with me. At other times she counsels me to try and let Jordan live her life.

“That’s what we’ve always wanted,” she says.

I can picture the room. It’s darker than I would expect for a wedding reception. People are at tables laughing and carrying on. I overhear some of them.

“She looks so beautiful,” I hear one say.

“I never thought I’d see this day,” another opines.

“Her family is so strong.”

“Every time I think about what she’s been through, I just get so happy that she’s well … and look at her!”

And I do. I look across the room and see her standing arched over a table of doting admirers. Her now-husband is at her side. She is radiant—a commanding presence that fills the room. She’s a grown woman in this dream, but I still see my little girl. I see that wide smile and those brilliant eyes. I can still see her cheekiness mixed in with a newfound maturity. There’s something quite lovely about the way she stands next to her groom. There’s something that gives me comfort … and I tell myself to stop liking it.

Sometimes, in my dream this part mixes up. I remember one night I dreamt that I sat at a table next to my mother. She tells me how proud she is of me and how well my girl turned out. I deflect and ask her if she thinks the groom will be able to provide well for Jordan. I get that smirky look from my mom that tells me I’m being too ornery.

Sometimes, in this part of my dream, I leave the party and walk around in a place I don’t recognize. There are halls and halls and I walk around them by myself admiring artwork and wandering for no good reason. I can still hear the muffled sound of the party. Then Luc is walking with me and we chat about nothing.

What happens next is always the same. I am in the room and the music is going and I ask Jordan to dance. We walk out onto the dance floor and a soulful ballad plays. I say soulful because there’s a hammond organ and a piano playing. Yes. A hammond organ. My dream is very specific.

I take Jordan’s hand and I look across at her. I can tell that she is so happy. I tell her how proud I am of her. She smiles back at me and we dance. Her feet work perfectly. In fact, it is only my feet that get in the way. Jordan dances gracefully as though nothing ever happened to her legs. I tell her I think it’s so hard to believe that she was once so sick. I tell her that all I ever wanted was for her to live a normal life. That’s when she cocks her head, stares me straight in the eyes and says, “my life has been so much better than normal.”

In my dream, my eyes are a little wet when she rests her head on my shoulder the way she did when she was such a little thing. We sway to the music until a hand pats me on the shoulder. It is her groom. He asks if he can take over and we exchange niceties. I walk over to Jeanette and resume dancing with her, staring over at the bride and groom. Jordan looks so peaceful; so ready to start a whole new life.

I love it when I have this dream. I sometimes wish for it when I’m falling asleep. Like every story connected to Jordan, it doesn’t have an end. The first time I remember waking from this dream, I couldn’t get the image of Jordan’s smile out of my head for the entire day. It was a great mental image to carry me along. It was accompanied by a warm sense of peace.

I felt a sliver of that peace today after my visit with her at CHLA. She’s slowly coming back to us. Her conversations are more coherent, though she still drifts off into silence now and again. Her smile is more genuine and less the comic book artifice that made Jeanette and I so uncomfortable days ago. The medical team has warned us to prepare for a long haul. There are no easy answers in sight and we’ve been told to expect that Jordan won’t be going home any time soon. We’ve also been advised to expect more bad days. But today I left the hospital feeling less dark; filled with a subversive little emotion called hope.

Photo

Fri, 27 Apr 2012 08:38:04 -0700

The slayer is not well. I have little to say. She barely knew I was there when I stopped by to...

Thu, 26 Apr 2012 22:02:15 -0700

The slayer is not well. I have little to say. She barely knew I was there when I stopped by to visit. She greeted me with an odd remark about a friend she has not seen in over a year. “She’s been saying that to everyone,” Jeanetted confided.

While I stayed with her, Jordan sat in her bed with her arms at her side. She kept staring up at the corner of the room with a crooked smile on her face. Whenever we asked how she was she simply said, “good.” Nothing else.

She has been off Depakote for three days but her mental state seems to be getting worse. It makes me very sad. I miss my girl.

Tripped Up

Wed, 25 Apr 2012 22:47:38 -0700

Jordan was admitted to CHLA today. She fell while descending the stairs at home and hit her head. Given her history with head trauma, we were instructed to bring her in to the hospital even though she was fine after the fall. She’s resting comfortably but she’s going to be in the hospital for at least a few days while the doctors run tests and observe her to try and explain the change in her physical condition.

Her motor skills have deteriorated significantly in the past few days. Her legs were practically useless for much of the weekend. They were about as useful to support her weight as overcooked spaghetti. We think the deterioration might be related to changes in her medication. As the dosing increased she lost more motor function. She also became very listless. On Sunday, she was only half-present most of the day, staring up at a corner of the room glassy-eyed with a dull smile. Instead of her usual chattiness, she’d sit quietly. To be truthful, it was very hard for me. It’s jarring when Jordan isn’t Jordan.

By Monday she had to crawl from room to room, and her arms began to weaken. She collapsed in the upstairs hallway while trying to crawl to the bathroom. We consulted with her neurologist immediately and we pulled her off the new medication. She seemed to be bouncing back somewhat yesterday, though she wasn’t able to go to school. Today started off well. She felt strong enough to walk on her own two feet with some help. But she lost her balance coming down the stairs. She hit her head so hard her right eye is black and blue. She had a cat scan tonight and we relieved to learn there’s no sign of internal bleeding. She’s still listless and she fades in and out of sleep, but she seems to be doing well otherwise. We’ll have a better sense in the morning when she can be evaluated by her medical team.

Thank you to all who have reached out to see if we need anything. We’re all doing ok. I’ll report in with new information when I have it.

Love has never dwelled so hard in my heart.She softens my soul when she is nearAnd empties it in...

Sun, 22 Apr 2012 18:29:28 -0700

Love has never dwelled so hard in my heart.
She softens my soul when she is near
And empties it in absence
Such that I have never loved nor feared its loss before.

When she is near she softens my soul.
I am not the me that I think I am.
I have so never loved nor feared I’d lose so much before
Because her smile enriches my gentle heart.

I am not the me I think that I am.
My life is ever changed because of her.
My heart is rich because of her gentle smile
That carries me and makes me strong enough to weep.

Because of her, my life is ever changed.
It is empty in her absence.
I weep enough to have the strength to carry on.
I will not harden my heart so that my love may ever dwell.

The Slayer is doing ok. Chemo has started again. We’re in...

Sun, 22 Apr 2012 15:44:00 -0700

The Slayer is doing ok. Chemo has started again. We’re in that weird period where she’s in between medications—an effort to smooth out the seizures. We were able to go out to lunch yesterday, and a movie today. There are times when she checks out or is listless. But for the most part, she perks along like the Jordan we adore.

A Sense of Humor

Sun, 08 Apr 2012 14:30:00 -0700

We hang together in the master bedroom, watching Ferris Bueller’s Day Off; she, Jeanette and I. We’re relaxed. It’s been a delightful day. It’s my birthday and I’ve basked in a stream of well-wishes from my friends and family. I’ve also been the beneficiary of unbridled affection from the slayer. Now, in the early evening, we’re enjoying the quiet pleasure of shared time in front of the boob tube. Then it starts.

First, her left leg kicks high, toes pointed. Just as quickly as it rises straight and stiff, it slams down on to the bed. It smacks down percussively. I’m actually startled at first because there was no warning and the landing thuds over the movie dialog. Then the leg lifts again, and just as quickly slams down. Jordan turns her head to look at me.

— Here we go again, she says.

I have to smile as I climb onto the bed to soothe her legs. I don’t like to restrain her, but I also don’t want her to hurt herself. As surreal as it seems, she has no control over her leg. She’s only along for the ride; as much a spectator to the show as we are. It makes me wonder how people would have interpreted such behavior hundreds of years ago. In another time, you’d conclude that she was possessed by spirits. No sooner do I think this than her hips begin twisting. She rotates her leg from side to side. We’ve never seen her do this before. Without the slightest sense of irony she observes her shimmying middle and says it for us.

— That’s new!

You might be reading this and thinking how sad it all is, which is why I must assure you that we laughed when Jordan said this. In a way, she dissolved the tension in the room. She has a lovely sense of humor and a healthy point of view. I had to give her a giant kiss on the cheek before I helped her keep her shoulders down. Her body quieted eventually, and we finished our private screening of the John Hughes comedy classic. As much as Ferris makes me laugh, I’m still giggling about my girl. “That’s new!” She was the bigger hit that night.

This photo, taken last December, captures my Slayer in a moment...

Fri, 06 Apr 2012 11:24:48 -0700

This photo, taken last December, captures my Slayer in a moment that makes me smile.

Stable

Thu, 05 Apr 2012 09:32:57 -0700

We got the results from the Slayer’s MRI yesterday. Overall, looks stable. One area might have some growth, but hard to say because it’s small. She’ll be back on chemo when her counts are stronger. She’s still a little low. She’s also coming back to CHLA for a few days so the neurology team can observe her in an effort to solve the issues with seizures and spasms.

Jordan was upbeat. When she called me she said, “I just really want some sushi.”

The Slayer’s in the tube today. It’s time for her...

Tue, 03 Apr 2012 09:41:00 -0700

The Slayer’s in the tube today. It’s time for her quarterly MRI. She was in great spirits bright and early this morning. We won’t know results from the scans until tomorrow. So, we’ve decided to follow Scarlett O’Hara’s advice: we’ll think about it tomorrow.

Hello, April

Sun, 01 Apr 2012 14:52:00 -0700

The sun showers her hair as she leans across the railing of our third floor patio. She rests her head on her hand, with an elbow braced against the iron, and rambles on about a playdate she plans with a new friend. She has quilted me with random observations and anecdotes for the past 20 minutes. Each patch of one-sided conversation is stitched to the next with an obligatory silence. She knows that I have come here to write. She promised not to bother me. And she doesn’t … for a half minute at a time.

I ditch my keyboard and peck between sites on my iPad, resigned to the fact that writing will have to wait. Instead, I decide to listen and enjoy the lilting musings of my slayer. She’s in a great mood today. It’s been a rough week, but you’d scarcely know it from the smile on her face and the delightful cheer in her voice. On this beautiful afternoon in Santa Monica, the sun has no finer companion than my girl.

Jordan’s neurosystem reminds me of a lovable old car. Sometimes it starts. At other times, you have to coax it, stroke it and give it tender loving care to get from point A to point B. She’s had more than a few seizures this week. They vary in their severity, but quickly subside after a little medication and time to rest. More troublesome are the spasms. They wake her at night and catch her off guard when she’s least expecting it. Jeanette has spent more than a few nights in Jordan’s room, laying with her to comfort her while her body jerks without her permission.

The spasms are an odd lot. She’ll be talking to you one minute with her body relaxed, and the next minute her arms and legs start shaking restlessly. Like an orchestra, they play their part and gradually build until her head and upper body add to the crescendo, slamming her forward and back so violently that she gets a headache. Since Jordan is fully conscious during these episodes, we receive a running commentary, which ranges from complete frustration to exasperated annoyance.

This morning, when her head began bobbing uncontrollably, she whined lightly.

— Oh, maaaaan. Why does my head do this?

— I’m sorry, honey. Please sit down.

I took her hand and walked her to the sofa. She toed her way over like a disabled crane, all while her head nodded back and forth as though she were vehemently agreeing with me on something of great importance. I sat her down and put a pillow behind her head to soften the blows.

— Is that more comfortable?

She answered with a crooked grimace.

— This is so annoying.

But now she is leaning against the rail looking quite lovely and making the world look quite lovely in the background. As much as I’m nervous about not getting some words on the page, I relish moments like these with Jordan.

A soft wind has kicked up and we both remark how great it feels to have it blow over us. I hope this latest setback in Jordan’s health will blow over just as softly … and that I can enjoy many more moments like this with her.

Jordan has taken to random acts of magnet art. We find these...

Sun, 25 Mar 2012 14:47:01 -0700

Jordan has taken to random acts of magnet art. We find these installations all over the house. She’s the Banksy of magnet art.

Chaotically Unpredictable

Sat, 24 Mar 2012 16:22:00 -0700

It’s a waste to chase the pipe dream of a magical tiny theory that allows us to make quick and detailed calculations about the future. We can’t predict and we can’t control. To accept this can be a source of liberation and inner peace. We’re part of the unfolding world, surfing the chaotic waves.

// Rudy Rucker,
“The World is Unpredictable”
in This Will Make You Smarter

— What is my name?

She searches the hall with restless eyes. They find many targets but none are me. After a few moments she says, “Dad.” It is then that she looks at me, but contact with her cool blue eyes is fleeting. She studies me just long enough to acknowledge that she answered right. Then her eyes continue their scan of the long hallway in which she, Jeanette and I sit on the floor. She is wrapped in two towels and her hair is wet. Minutes earlier, she experienced a long, intense seizure while taking a bath. We are waiting for her brain to finish rebooting. She has only just now started speaking again.

— That’s right. I’m Dad. What do people call me?

She looks at me again for only an instant. Her face is painted with a defeated expression. We know that in this state Jordan is only half with us. I imagine that inside she is clawing her way out of the haze. She struggles to make some sounds before the word comes out.

— Dad.

I ask her what her grandmother’s name is. She responds, “grandpa.” When we ask her the dog’s name, she says, “dog.” By the way that she struggles to make the words and the way that she nervously fidgets while trying to respond, I sense a tiny part of her knows her responses are wrong. It must be frightening and annoying to command your body to respond only to hear it misstep with your own ears.

Less than an hour beforehand she and I talked about our plans for the day. Her tummy was bothering her, but it didn’t stop her from pecking me on the cheek to wish me a good morning. She was talkative and eager to take a bath. I went downstairs to do some writing while Jeanette got the bath ready for Jordan. Awhile later I heard the shouting. Jeanette was calling my name loudly in a way that she only does when something isn’t right.

I ran up the stairs and stepped inside the bathroom to see Jeanette struggling to hold Jordan still. Jordan’s eyes were dilated wide and she was squirming and trying to stand up. Some of her body was shaking, but this seizure was mostly about absence—Jordan was gone. Her body was here, and it was very animated, but our daughter was somewhere else. When she tried to speak, she spoke in loud whispers. Her words were full of gibberish. She was trying to say something, but it sounded like she was possessed. What spewed from her mouth weren’t words at all, just slurred morphemes that might pass for a foreign language if not for the fact that it was a pure stream of misfires from her over-heated synapses. When she wasn’t trying to stand up or speak in tongues, she tried to roll-over and lay down. It took all of Jeanette’s strength to tame her.

I reached over to the other side of the tub and opened the drain. Somehow, in Jordan’s removed state she retained her modesty. She tried to cover herself with her hands. I actually think the words she was trying to produce for her mother were to ask for a towel. I looked away, of course, but that wasn’t enough for my girl.

When the water had drained some and Jordan’s movements were somewhat less subdued, I suggested that we lift her out of the tub. I lifted her from under her arms and then carried her in my arms to the hallway. My clothes were soaked as we lay her down and covered her with towels. Her right leg spasmed wildly, lifting off the ground now and again. When I pressed my palm to her thigh her muscles twitched as though a strong electric current pulsed through them.

We did our best to dry Jordan and keep her warm. She moved her head a bit in bird-like motions, digesting the scene with her wide eyes but really taking nothing in at all. She still could not really speak. Instead, she’d occasionally make a sucking sound in her cheek while her teeth chattered rapidly. She had all the mannerisms of a malfunctioning cyborg. I imagined this would be the expected behavior if we had put a robot in the tub.

Slowly, gradually, Jordan made her way back to us as her body settled down. She began responding to our questions. Some she got right. Others, were pathetic misses. It is always, always hard for me to watch these mental hurricanes. My mind races in a different way than hers. First, I imagine how horrible it would be if this was her permanent state—how sad I would be to have her here but not here. Then, my head races to conclusions—is her condition deteriorating? Her seizures have come more frequently. She’s been having new neurological issues like the chorea and onset of West’s syndrome. Do these data points predict further decline? My mind races next to solutions—which doctors do we need to consult; is it time to find new insight? While all these thoughts race to my mind, Jordan begins to be Jordan again.

I step away and Jeanette helps Jordan dress. By the time I return to her room she is sitting up on her bed in a pair of comfortable pajamas. She has found her iPad and she taps and scrolls with determined voracity. She spends such little time on each page she visits that I’m not sure she’s absorbing any of the content. This browsing behavior appears to be her proving to herself that she can function again. When we speak to her, she makes more sense and she can remember more names, but her speech is badly slurred. It doesn’t look like the left side of her mouth is cooperating. Still, she has improved. I ask if she wants another blanket and she shoos me away for bothering her too much.

15 minutes later I pay her another visit and find her exactly as I expect. She has rolled over to one side curled up in a ball on her bed, covered with her favorite blanket. She is sound asleep. The only thing we can reliably predict when her neural network reboots is that she will turn all the other systems off to complete the reset. She sleeps for several hours. When she wakes, it is as if nothing happened at all … and she remembers nothing.

School bus was full so they sent a cab to pick up our slayer....

Wed, 21 Mar 2012 13:11:28 -0700

School bus was full so they sent a cab to pick up our slayer. She thought it was about the coolest thing in the world.

Photo

Mon, 19 Mar 2012 20:39:34 -0700