Jordan's Journey

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.

She’s doing well, no new episodes. She will see her neurologist next week. The doctors don’t seem as concerned as us. That makes me antsy, because I don’t like waiting. But we’ll have real data to evaluate next week. In the meantime, Jordan is very content and feeling great. She even managed to use the seizure as a rationale to get out of cleaning her room.

It’s Tolstoy’s fault. Or maybe Dickens. Shakespeare didn’t help either. I suppose if we’re really pointing fingers, you’d have to include the Greeks and all those cavemen who told stories by firelight. I thank them all for sometimes dashing my hope. Because we all know the stories. The stories have been told so many times that in our heads we jump ahead to the ending the minute we recognize the beginning. I blame all of them for making me doubt, especially on days like today. Jordan had another seizure today.

It wasn’t a big seizure–not like the ones a few years ago; the type that knocked her out, took over her body, and at one time, endangered her breathing. Today’s seizure was small. She thought she had to sneeze, and then she disappeared standing up. Her eyes fixed at a distant point. She was unresponsive. Her speech slurred. She checked out from the world for just long enough to send those around her into a panic. Fortunately, there were many around her. Jeanette was there with several of our neighbors and their dogs in tow. They were a wonderful support team. I was in San Diego at client meetings and unable to help at all. When Jeanette told me what had happened, my heart sank.

It could mean absolutely nothing. Even though Jordan has been steadily recovering, her brain has been riddled by disease. Though the tumor hasn’t shown any signs of growth, its carcass is strewn about in her head. Even if it is still dead, the weight of the dead tumor is itself enough to make the brain misfire at times. That’s why she’s still on anti-seizure medication.

But what if…

She stopped chemotherapy in September. Our plan was to stop the drugs and “wait and see”. She’s due for an MRI in December, when the doctors will look hard to see if the cancer remains dormant. Of course, my mind has skipped to the end. What if this sudden change is the second act clue of what’s to come? What if this is the warning sign that the disease is active again? I want so much to believe it’s not, but I’ve spent too much of my life reading the works of those who came before. The story is in my head. And though I am so often a sad optimist, I have no words of cheer today. No great and tidy conclusion to my post. Just a lot of worry and a bit of resentment at the bards who’ve filled my head with doubt.

The Lovepug

Fewer words on the blog always means the same thing: progress. I must admit, I’m a little reticent to say much every tenth month of the year. It’s one of my favorite months, but for so many years it was a curse for Jordan. She beat that curse in 2007, and ever since we’ve been so happy not to spend time in hospitals or wringing our hands hoping she was okay. She is more than okay. She is fabulous.

She has taken a break from chemotherapy for the past two months and you’d almost wonder if she’d ever been sick at all. Sure, her logic is dizzy at times, but she’s quick as a wit in her observations and her stream of conversation. We still worry about the legs. We need to fix those, but quite honestly, we’ve been loving this “normal period.” We’re loving time as a family, without needles or protocols.

So, another October passes and Jordan focuses on how much candy she can bag, rather than how many days until she can go home. That’s progress. That’s my daughter.