Jordan's Journey

Luc and his friend Emily shot this video update from Jordan on Saturday.

I rarely read a book more than once, but I make an exception for To Kill a Mockingbird. I’ve lost count of how many times I’ve read it, and each time I do, it whisks me away. There’s a character in Mockingbird named Mrs. Dubose, an old woman who lives down the street from Jem and Scout. Every time the children walk past her porch she yells out at them, scolding them for misdeeds they didn’t know they committed.

These days, Jordan is playing the part of Mrs. Dubose.

Her pain has subsided to a tolerable level. In fact, she’s able to go most of the day without pain medication. One of her casts was bothering her, but on Thursday the doctors vented it and she said the relief was instantaneous. She has moments of pleasantness, but most of the time she’s bored out of her mind. That boredom leads her down a very cranky path. Her cranky demeanor is testing our patience, though we counsel ourselves to cut her slack, given what she’s gone through.

Those who have followed Jordan’s Journey know that she’s a determined little wag. She doesn’t take ‘no’ for an answer often. It’s generally a good thing, but at times like this it can be maddening. She is so stubborn and independent. If she decides she wants to go somewhere she just heads in that direction without asking for help. I came into her room the other day to find her awkwardly hoisting herself from her bed and into her wheelchair. She would have made it had I not come in, but it wouldn’t have been graceful. And it was risky.

I’ve been lecturing Jordan on smart risks and dumb risks for years. She rolls her eyes and recites the difference back to me. But still, she thinks nothing of wheeling her chair around our upstairs area, navigating too close to the staircase for my comfort. We keep telling her to wait until we can come up and help. She moans and tells us she understands, but then she does it again.

Tonight, she crawled down the stairs using her arms to descend each step.Her helpless legs outstretched in front of her with pink casts ablazing. I dealt her some cane, but all I got back was lip. She’s defiant about her liberty. And not apologetic in the least. It’s enough to make me want to wring her neck … but that wouldn’t help us in our cause. One week is down. She has five or six more to go. With good humor, positive thinking, and a bountiful supply of alcohol, we should make it just fine. I keep telling myself how proud I am of her (I tell her, too, but she’s tired of hearing it). The willpower humbles me, until Mrs. Dubose re-emerges and we’re all taking a verbal beating from the cheeky girl in the wheelchair.

[This piece was contributed by Kathleen Callihan Morris, Jordan's grandmother.]

Jordan completely blew me away last night. As I was driving home, feeling sad for what she’s going through — as well as how painful it is for Larry and Jeanette to witness, my cell phone rang. I know I’m not supposed to talk on my cell phone and drive, but when I saw it was from Jordan, there was no way I wasn’t going to answer. I even thought perhaps Jeanette was calling me on Jordan’s phone. I was momentarily speechless when I heard that familiar bubbly voice with her usual “Hi Grandma.”

Although I definitely heard the strains of fatigue in her voice, she chatted on and on about how she just had hot chocolate and some medicine so it wouldn’t hurt too much, how she wants to go see the movie about the dragon with me, and if I could come see her, that would be great. So I promised her I would come up tomorrow after she got home.

My granddaughter is absolutely amazing. Not once did she complain to me or tell me how horrible it was. Had it been me in that hospital bed, I would have been sharing my pain and probably feeling very sorry for myself. Not Jordan. She even asked about my husband, another cancer survivor. “How’s Keith?,” she asked, which made me chuckle.

I want to be more like Jordan!! She truly is an inspiration, and it brings tears to my eyes just thinking about it again.

As we approached Children’s Hospital this morning, Jordan sighed and said,

– Children’s Hospital. Another day, another nickel.

She’s in the O.R. now. It will be a few hours before we see her again. I’m all nerves. Unlike me, Jordan was witty, spirited and determined to get this done. I’m certain she was nervous, too. But it didn’t stop her from chatting with the nurses about rotations in the O.B. ward. Or from cracking a littany of jokes.

I’ve lost count of how often she takes my breath away. She was unbelievable this morning. The lead anesthesiologist asked me, “is she always this happy and talkative?” If only he knew.

I know myself well enough to know that when I find it hard to write, I’m usually avoiding something. The words aren’t flowing today, and that’s because I’m uncomfortable thinking about tomorrow. At 8:30 am, Jordan will check in for the surgery we’ve diligently researched, laboriously discussed, and frequently postponed. But we can’t avoid it any longer because it is what Jordan needs and it will make her life better.

When I was not much older than Jordan, I found myself in a sticky social situation at school. I was inclined to ignore it, but one day when I was exceedingly sullen and full of self-pity, my mother gave me sage advice–advice I’ve never forgotten. She said, “you can avoid this for as long as you want, and you can make yourself miserable, or you can address what scares you and put it behind you.” It was one of those moments where the world compressed and I felt a moment of understanding that made me see things differently. As usual, my mother was right. The fear of what I had to do paralyzed me. The thought of getting it done created hope.

Today, our family wrestles with the dividing line between fear and hope. The fear emanates from not-so-distant memories, and the hope lies in the promise of the girl. Jordan’s last surgery was somewhat routine. It was when they implanted the port catheter so that she could receive chemotherapy more easily. Yet, I will never forget the fear in her face as they wheeled her to the O.R. She is a brave, brave child. She proves her bravery so often we take it for granted. After two brain surgeries, we figured this port catheter procedure would be a piece of cake. But surgery is surgery, and the recovery process was fresh in Jordan’s mind. She grabbed my hand and asked me if she needed to do this. Her eyes were wide and her mouth trembled, and I had to muster bravery of my own when I told her she did.

It’s one thing to be brave when you’re making decisions about your own health. It’s quite another when you’re making those decisions for someone else, especially when that someone is a child you adore. She trusts me completely. The gravity of that trust is never lost on me. I believe, in my heart, we have made the right decision. Jordan trusts us, and she is ready. But I dread the moment tomorrow when I know she will ask me again, “do I really need to do this?”

The procedure will take more than four hours. When she comes to, she’ll undoubtedly experience pain. She’ll face a daunting recovery path. And, she’s going to endure a couple of months of boredom and restlessness from not being able to animate her energetic body the way she prefers. But she will do it, and she will provide inspiration to us in the process. It’s a lot to ask of a child, and I can’t find it in myself today to marginalize the road ahead by painting rosy pictures of the way she’ll cope. I can only tell myself the choice is right and take the next step with her. As a family, we are about to face what scares us and put it behind us.

Valentines

She’s ready. Make no doubt. She’s ready.

We walked to See’s Candies together to buy her mother a Valentine’s Day present. Three blocks required nearly a half hour, but she walked without complaint. She chatted constantly with every step. Mostly, the conversational threads were random thoughts and wanton whims, but here and there she’d reference the surgery she’s scheduled to have in five short days. There’s very little complaint — almost no hesitation — just talk of what she’ll do when her feet are repaired and how she plans to cope when she can’t walk on her own.

When we got home, she staged a surprise for her mom. The surprise required Jeanette to go upstairs, stand still, and close her eyes. When she was allowed to open them, Jordan presented the box of chocolates with a grand flourish and a heart-felt card. Jeanette was clearly touched, but Jordan was already moving on to the next item on the daily agenda. That’s the way she works. Give mom a present. Check! Chase the dog. Check! Hunt for sweets. Check. It’s a never-ending to-do list.

We setup the camera this afternoon and Jordan wanted to take her turn behind the lens. I setup the lights, but she snapped several good shots of me. I beckoned her over to sit with me and we took a few together. She cuddled with me and grabbed my hand, and when we were done, she kissed me on the cheek and said, “I forgot to give you sugar today, Daddy. I know you like to have sugar from your daughter.” I nodded and then she sprung up and moved to the next to-do item.

She’s going to do great on Friday. Of this, I’m sure.

LMV312

She was ordered to clean her room. It had been awfully quiet up there, so I paid a visit. I did not find an industrious housekeeper at work. Instead, I found clothes all over the floor, books piled on her bed, and a box of sketches strewn out in a corner. It looked like an art center exploded in the middle of her room. Meanwhile, Jordan reclined in her desk chair, feet up on the desk, her left elbow bent on the back of her chair, her right hand nonchalantly clicking her computer mouse as she scrolled through fashion pages online.



– Jordan, you’re supposed to be cleaning your room.

– I am.

– No. It looks like you have your feet up on the desk as you surf the web.

– No. I’m not.

I stared her down for more than a minute. She didn’t even pay attention to me. She just kept tapping the mouse and scrolling through her pages, eyes fixed on the screen. Finally, she turned and stared me back with pursed lips.

– What?

At that point, I started laughing. I know, it was the wrong thing to do. She was blatantly lying and defiantly challenging me. I suppose the right thing to do would have been to have raised serious cane. But, there was something so willful about it that I just couldn’t help myself. And, given that she’s got some major surgery scheduled in less than a week, I just decided to let it go.

We’re trying not to make too big a fuss about this coming Friday. Compared to brain surgery, what lies in store is a piece of cake. And the more we focus her mind on the seriousness of it all, the more we’re likely to freak her out. It’s good that she’s still ready to go … optimistic, unfazed, brave. Occasionally, she’ll show signs of concern, but then she encourages herself and she’s ready for the day to come.

On the walk back from a pre-Valentine lunch, Jordan confided in me how eager she is to do things with her feet again. She wants to swim, dance ballet, fight with martial arts, play tennis, ride horses, and attempt gymnastics. I counseled her to take things “one day at a time.” She asked what I meant, not really knowing what to make of the expression. I told her she’d been doing it for six years. I held her hand and reminded her how, when things looked bleak during her cancer fight, she still made the most of every day. I’m not sure she totally understood, but she squeezed my hand three times (our ritual signal for “I love you”) and then started a conversation about the delicious joy of fresh salmon.

“One day at a time”, I thought. Jordan does it naturally. I don’t have to prepare her for it. Sometimes, she takes one day a time to the extreme that she lies to herself and to the people in the room. But, she presses on. I’ve struggled all week thinking about Jordan and her upcoming surgery. I know it’s what’s best and I know it will have incredible outcomes, but I don’t want her to feel pain and I know it will be hard being so limited for two months. Still, I have hope because Jordan lives life to the fullest every day she can. Even when she’s supposed to be cleaning her room.

She has an abundance of will. She can do anything she sets her mind to. Don’t try to tell her she can’t. She will. It’s the part of her character that is dangerously alluring, at times beguiling, frequently intoxicating, and always humbling. There’s something to be said for the pureness of her determination. It has literally saved her life. And it has been on display all week.

Last night we attended her school choir concert. She has been practicing for weeks. Last night’s performance was more of a sneak peak for parents–a glimpse into the work the choir is doing. Jordan took the stage in Steve Madden boots that beckoned interest from her stylishly-inclined classmates. She wobbled in them, shifting her weight back and forth to keep her balance. Stylish as they are, they are a challenge for her damaged feet. No matter. Jordan is determined to convey a sense of style, even when it isn’t comfortable.

When it was time to start, she happily climbed the risers and wobbled three feet above the ground, occasionally reaching her hand back to the lip of the stage to keep her balance. Her feet shifted close to the edge of the risers, and her mother and I leaned forward in our seats, ready to spring forward if it appeared she would fall. In truth, I had a hard time paying attention to the music. I forced a smile every time she glanced my way. Inside I was a nervous wreck. I tried motioning to her, mouthing the words “sit down.” But she rejected the idea immediately, whispering loud enough for the entire audience to hear.

–No, Dad. I have to stand.

And stood she did for the entire half hour performance. She did not take a seat until the applause subsided and the choir was released to waiting parents. For Jordan, the show must go on and the audience gets its money’s worth. Divas always give the audience their due.

Her will is about to be tested again.

We spent Monday afternoon at Children’s Hospital, preparing for upcoming surgery. On February 19th Jordan will have both feet reconstructed. The surgeon will split tendons and chip bone in order to compensate for the excessive nerve damage caused by chemotherapy. Jordan’s feet have deformed by the sheer strength of her will. She was determined to ditch the wheelchair four years ago after a rare reaction to Vincristine robbed her of the use of muscles she’d long taken for granted. In so doing, she created a compensatory gate that put her upright again but unnaturally strengthened some of her muscles at the expense of others and shifted her weight so off balance that the bones in her feet calcified and reshaped to support her ironclad will. Surgery will set things right. Two highly-esteemed orthopedic surgeons have confirmed this assessment. And Jordan is ready to get it over with. When there was some debate whether it was better to do two surgeries (one leg and then another later), Jordan lobbied staunchly to make it an all-in-one special. When her surgeon agreed that her logic made sense, she clapped her hands and exclaimed, “I got my wish!”

It will not be easy. She will be immobile for nearly two months. During the first 3-4 weeks she will wear casts that do not support her weight. She will have to keep her legs elevated and use a wheelchair to get around, which will be a challenge given that we live in a three-story townhome. After the first round of healing, she’ll move into traditional plaster casts that can support her weight, but with both feet healing, getting around won’t be easy. Then, when all the casts are off, she’ll have months of physical therapy. It’s not a pretty picture, but we’re sustained by the promise of what she’ll do when the healing is done. And she has strength enough for us all. We find hope in her outlook. There’s no doubt she’s nervous, but she’s also determined to write this next chapter and get it over with. She’s determined to wear the boots again and stand on the risers and sing out stylishly without wobbling. That’s the payoff. That’s Jordan.

With progress in the cancer fight comes progress in the digital story. The Jordan’s Journey website will soon move to a new address. Take a sneak peak.

Why are we doing this? Two reasons:

1. Jordan’s story is changing and moving into the “life after cancer,” which makes it a good time to consolidate some of the stories with other tales told by Jordan’s dad, Larry; and,

2. Someday, Jordan plans to take over her site. As many of you have noted, Jordan’s Journey has been told through the eyes of her parents. But Jordan is getting to an age where she has stories of her own to tell. So, we begin the move.

All of your favorite posts and comments will be available at the new address. When we make the switch, you will be automatically forwarded to the new site if you use your old link. You may have to update your RSS feeds. We plan to make the full switch on February 1st.

2010 Portrait | Jordan

She heard the neighbors talking in front of our building, leading her to dart up the stairs and change into clothes. We had asked her to change out of her pajamas all afternoon, but she ignored us. Now, she was rustling through her closet. A few minutes later, she nearly tumbled down the stairs in an effort to get out front.

– Jordan, slow down.

– I can’t, Mom. I have to talk to my friends.

Her friends are two of our ‘grownup’ neighbors who own a beautiful dog named Skunk. Jordan loves Skunk. So does Gracie, our pug. I was in the middle of watching the Rose Bowl game and wasn’t very motivated to hang out on the front porch and socialize. Jeanette was deep into a new book. And, as it turns out, our neighbors were saying goodbye to some visitors. None of these factors dissuaded Jordan from bouncing onto the front porch and injecting herself into their conversation.

We could hear Jordan command the discourse through our screen door. I couldn’t help but notice that the flow of dialog turned one-sided. I looked at Jeanette. She looked at me. For an instant, I think we both considered rock, paper, scissors. Gracie was whimpering at the door and driving me crazy, so I volunteered. By the time I was on the step, Jordan had shared an awful lot of history.

–Yeah, I had cancer but now it’s gone. But they still want to do surgery on my legs. And, I didn’t even cry when they gave me a flu shot. Because sometimes they have to put a needle in my chest … for the chemo. But I can’t talk about that around Noemi (her school friend) because she might pass out. Yeah. I just hope my cancer stays away.

Our neighbors know Jordan and are actually quite fond of her, which I suppose made the New Year’s Day monologue she delivered a little less intrusive. I tried to divert Jordan’s attention but did not succeed. She kept talking at them, clueless as to whether or not they wanted to hear more.

Later, I talked to her and reminded her that she needs to manage her disclosure. It’s fine for her to tell people about her fight with the disease, but it shouldn’t be the first thing she volunteers, and she needs to consider how others might react. There are many people who don’t know how to respond to such things, I tell her. She nodded and then asked me if we were going to play dominoes now.

I put my hand on her shoulder and asked her to listen to me. I received the full attention of her bright blue eyes.

– Jordan, you’re growing up and it’s time for you to have friends of your own.

She nodded.

– The first step to being a friend is to listen. Make it easy for people to talk to you. You’re a beautiful person. People who learn about you fall in love with you. You don’t need to blast people with cancer tales to get their attention. And you have to stop sometimes to ask them questions and learn about their life.

She groaned about knowing what I was talking about, them skipped on to half a story about an episode of Full House. I knew, at that point, that most of what I had to say was getting lost. A few minutes later we were back inside and Jordan was on to her next task.

I think 2010 will be a fascinating year for Jordan. She is healing well. And while her body is growing up very, very fast, she’s got a lot of social and emotional growing to do. For six years it has been her vs. the disease. She missed a lot of school and she was often isolated from others her age. But the disease is not around anymore, and now Jordan has to reconnect with the rest of the world. It’s very hard for her. We’ve trained her to focus her energy on herself. Now, we need her to consider others and she doesn’t know how. Though she has a kind heart and works herself into a tizzy worrying about others, she doesn’t know how to share her concerns, and she’s such a whirligig of anecdotes and emotion that most people her age don’t even know how to approach her.

Some of what she experiences is part of being 11. When I observe other children her age, I worry less. It’s a crazy time in the life of a child. But I also observe that Jordan operates on the fringes. Some of the very traits that saved her life make it harder for her to blend in with a circle of friends. She has an iron will. She can be over-zealous in her ambitions. And her mind is trained to ignore obvious adversity. That last one probably sounds like a good social skill, but when your friends are sending you signals that they don’t want to hear anymore about cancer treatment and you just keep going, it makes it very hard to win their hearts.

Fortunately, Jordan has plenty of time to grow up. No one’s rushing her. I try to coach her only because I want her to enjoy the company of others. I want her to have rich, meaningful friendships. I want to her to discover how beautiful it is when you care as much about your friends as they care about you–those friendships where you can get lost in conversation for hours and hours. Jordan will be a very good friend one day. She is one of the most loyal souls I have ever met, and she likes to live every day to its fullest. Who wouldn’t want a friend like that?