Jordan's Journey

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?

Modeling Clothes is Fun!

I think the news is finally setting in. My clue: she tells everyone that her cancer is gone. Friends. Family. Complete strangers. Sometimes I think she says it just to remind herself. The list of things she wants to do next is endless. She wants to write a book. She wants to take up tennis again. She wants to travel to Texas. She wants to eat more sushi. The list goes on. She told me today that this was the best Christmas she ever had. I didn’t have anything to say. I just gave her a big hug and kissed her on the head. It’s fun to celebrate this with her. I haven’t felt this good in years.

Belly Laugh | While not her most flattering photo, her parents love it because she’s laughing. May she laugh for many years ahead!

It was like old times.

When I awoke this morning, I challenged myself to make a great stack of pancakes. Pancakes have been a Saturday tradition in our house, but I stopped making them months ago because the electric stove in our new place is temperamental and doesn’t cook the batter evenly. I’m quite finicky about my work product. But the kids have been pestering me to make our favorite breakfast and I decided Christmas Eve was as good a time as any to surprise them.

After making the cakes and a batch of bacon to boot, I tried to wake the kids, with predictable results. Luc opened an eye, grunted, and went back to sleep. Jordan sat up immediately and said, “sure thing, Dad.”

A few minutes later Jordan and I each sat before a warm stack of pancakes, crispy bacon, and warm cups of tea and coffee. Luc wouldn’t come down for another half hour, which gave time for Jordan and I to chat like we have done so many times over breakfast. Those chats always vacillate between endearing sentiments straight from her heart and dizzying puzzles of non sequiturs hijacked from her random stream of consciousness.

She was about four bites into her pancakes when she hit me with cancer talk.

–Dad, I bet Santa is proud of me because my cancer is shrinking.

–I’m sure he is. But, you know, there’s a chance it’s actually gone.

–What?

–Remember, I told you that the doctors think the cancer may be dead. They call it remission. They think what they see in your scans is scar tissue. Think of it like cancer’s skeletons.

–Cancer has skeletons?

–No. I’m just saying, they think you really have kicked it’s butt.

–For real?

–Well, the only way to know for sure is surgery. They’d have to poke around in your head and test some of the tissue. We don’t want to do that.

–No way, Jose.

When she thinks, she has a habit of looking just past you. She stares in your direction, but you know she isn’t looking at you. Her pupils fix on a spot and she knits her brow a bit. That’s when you know she’s thinking hard.

–Dad?

–Yes.

–I bet there are a lot of people who are happy that my cancer is shrinking.

I agreed with her and shared some of the wonderful messages she’s received from friends over the years. It excited her to realize she has so many friends. She was particularly thrilled to learn of those friends she’s never met who live far away in places she wants to visit one day: Australia, England, Denmark.

She ate the whole stack of pancakes and then made her way upstairs to prepare for a long Christmas Eve. I watched her climb the stairs carefully, one clumsy step at a time. I realized that Jordan is struggling with the strange reality we all feel in this house. The diagnosis a week ago delivered closure. None of us feel comfortable accepting it. Every time we thought we had it in the past, life dealt a ‘gotcha!’ In our minds, we’re taking the conservative path, like Jordan. She’s been told several times that the cancer appears to be gone. She continues to say, “it’s shrinking.” And I have half a mind to stop correcting her. “Better she always be on guard,” I think.

The truth: Jordan has reason to be very thankful this year. It may be the merriest Christmas she’s ever had. And while her journey is certainly not over — she has some painful surgeries ahead — she has more reason to hope than ever before. If I live to be 100, I doubt I will ever again observe such strength in a child. She’s stronger than most adults I know. And she enjoys life gregariously. Jordan inspires me and many others because she doesn’t see boundaries. And when she finds them, she jumps at the chance to shatter them. That’s why I love her so much and why I am so proud of what she has achieved.

Yesterday, Luc and I returned from Park City, Utah, where we celebrated our annual father/son snowboarding getaway. We had a great time, although Luc broke his wrist on his third day of snowboarding. Jordan called us as soon as she learned he was hurt. Her voice was full of concern. She asked which wrist he broke. She told me she was worried about him. She asked if he would be okay. The little nurse kicked in. I shared her thoughts with Luc, who smirked and told me he was kind of glad he wasn’t home. He knew that Jordan would kick into high gear and drive him crazy if he were in Los Angeles. She would insist on doing what she thinks nurses do, which is a bossy regimen of careful pampering and stern medical procedures. He confided to me that he knew she cared, though. I think she has rubbed off on him. He shied away from my constant offers to assist him. He insisted on doing things for himself, adapting his habits to care for himself with one arm. And he didn’t want to take the pain medicine. I finally insisted that he take what the doctor prescribed after he got sick to his stomach and nearly passed out. My initial fear was that he had hit his head and didn’t realize it. But after calling the urgent care clinic on the mountain, I realized he was sick because he was in pain. The kid is tough. It’s not so surprising when you realize what he has been through these past six years; how he has supported his sister. And he’s seen how strong she can be. Though he probably won’t admit it, she inspires him, too.

The girls met Luc and I at the airport yesterday. Before I had even made it to baggage claim she ran towards me at full gallop. She tilted her head down. It looked like she planned to ram me. In fact, she crashed into me with her arms wide opened and hugged me so tight. I was blocking the way for other passengers, so I sidestepped with her still clinging to me. She told me she missed me and that she was so happy I was back. Now, that’s a welcome I’ll take any day. She held my hand while we waited for the bags to come, and she chattered constantly, catching me up on current events in Santa Monica. When we had all our belongings, we made our way to the car as a family and I felt this overwhelming sensation course through me. I felt so lucky to be amongst them all.

Jeanette, Lucas, Jordan: a family that together has kicked cancer’s butt. A family that survived a six-year ordeal that often tears families apart. A family that fights and laughs and loves like so many others, and tries very hard to treat each step on this journey as though it were just a different variety of ‘normal.’ I love them dearly.

The news is actually better than I imagined. Jordan’s doctors are now very confident that what we see in the MRI scans is actually scar tissue. Based on the few patients similar to Jordan who have reached this stage and had biopsies, the tissue biopsied has been benign. Because there is no evidence of new growth, the doctors believe she really has kicked the disease’s butt. They are so confident, they want to remove her port after she has the leg surgery.

To say that we are happy is a gross understatement. We celebrated at El Cholo. Jordan beamed with pride. But true to form, when I congratulated her on her accomplishment, she said, “yeah, and I did great when I got my flu shot.” She appears to have won a 6-year war with cancer and what makes her proud? She didn’t cry when she got a flu shot. God, I love my daughter!

Jordan did AMAZING today. She was so mature at handling everything, which is unbelievable considering the tension we all felt about this MRI. She let them access her port without any pushback. In fact, Jeanette said that when they came in to do the access, Jordan turned to her and said, “do I really have to do this now?” Jeanette said yes and Jordan was 100% cooperative.

When it came time to begin anesthesia, Jordan laid down on the table and told the team she was ready to go to sleep. Normally, she talks until the very minute the sedation enters her bloodstream. Not today. She closed her eyes and fell asleep. They even had to nudge her to make sure the anesthesia had kicked in.

She finally received her H1N1 vaccine, and she again did it without any fuss. She called me to tell me how she sat still even though it hurt.

Best news of all: her scans are stable. The full radiology report isn’t in yet, but there’s no sign of growth. It’s debatable whether or not the tumors got smaller, but they certainly didn’t get bigger. That rushing sound you hear in your ears? That’s our family breathing a sigh of relief. Thank you to everyone for your words of support and keeping us in your thoughts.

Tomorrow is a big day. Jordan will have her first MRI since stopping chemo in September. Though she tries to be nonchalant about it, we can tell she’s nervous. We are, too. So much has been going well, we have our fingers crossed the scans will give us more to celebrate.

Jordan: Bacon-Lover

By the time my preparation of the Sunday breakfast fixings was complete, she lumbered down the stairs. As usual, she was ready to go from the time of waking. I barely had a moment to say good morning before she started rambling action items for the day.

Jordan can be quite regimented. She has it in her head that on Sunday she must be served an omelet with bacon and goat cheese. If goat cheese is not available, she will settle for cream cheese. Saturdays are for pancakes, but Sundays are always for the Jordan Omelet. So it is written. That’s the rule, and woe be the daddy who doesn’t follow it.

I made this omelet for Jordan over a year ago when there wasn’t much else in our fridge. She loves goat cheese, so I improvised and it’s been her omelet of choice ever since. What she forgets is that the first time I prepared it for her, I also included some sauteed onions and mushrooms–and she loved it. But, let’s face it, Daddy can get lazy on Sundays. Over time, I’ve just cut straight to the bacon and cheese and left out the relish. Today, I thought I would live up to my potential. I prepped a lovely mixture of sweet, sauteed onions in browned butter, with tender mushrooms and a dash of parsley and cilantro to balance it all out. I really felt I had fulfilled my paternal obligation this day … until Jordan sampled it.

– What is this?

– It’s your omelet. I got all of the ingredients today.

– Dad, my omelet is bacon and cheese. Bacon. Cheese.

I tried to explain that she had this before and loved it. She stared me down warily, took a few bites, then told me she had to think about it. She asked me to cover it so she could give it another go in a half hour, then she climbed the stairs to take a shower .

I sat down with my coffee, crunched on a strip of bacon and had to laugh.

– Bacon. Cheese.

I get it.

Jordan in Scrubs

The nurse walked right by Jordan. She looked around the waiting room curiously and then asked Jeanette where she was. Jeanette pointed to the vending machines where Jordan stood wearing her favorite pair of scrubs–the ones she wore for Halloween. Jordan thought it was hysterical. We are relieved that when she visits Children’s Hospital these days, she blends into the scenery because she’s in disguise, not because she is such a frequent visitor.

She had a routine checkup today. They flushed her port and had a look at her to see how she’s coming along two months after chemotherapy. Her doctor and all the nurses were struck by how well she looks, how tall she is growing, and how grown up she appears. She gave them no trouble when they needed to access her port, and she earned a plate of sushi for her good behavior. She still can’t get a flu shot. Even CHLA is out of supplies. It worries us a little, but we keep our fingers crossed and wash our hands a lot.

I wish I could have been there with her, but I have been on the road since Monday. But I’ve been smiling all night thinking about my little girl wandering the halls of CHLA in her scrubs telling everyone she plans to become a nurse, and actually blending in with the nursing crew.