Jordan “Running Free” on Day #24. She got a “day pass” to go with her family to The Grove for movies, shopping and fun.

It’s been a long week. I don’t even know where to start. Jordan is still at CHLA and doing pretty well. When I have more time, I want to share some great highlights from the week. There’s so much to share — like how she met a friend on the floor who has the same birthday, and they got along so well that they decided to share a room. Or, how she calls me at least once every day just to see how my day is going. Or, how she impresses the nurses when she presses on with physical therapy even after she’s had a nasty seizure.  As you might expect, she continues to be slayer-strong, and she wins everyone over with her sassy but delightful attitude. Her legs really are getting stronger, but she’s still 3-5 weeks away from coming home.

What I really want to share today is, well, today. On day #24 she was granted a “day pass.” That means she was allowed (actually, strongly encouraged!) to leave the hospital with her family for 12 hours. It was the first time she set foot outside since surgery. We dolled her up and took her to see Harry Potter. Our whole family loves these movies and we weren’t able to go when it first came out because of the surgery. Jordan loved it! We all did. And afterward we had lunch at The Grove with our friend Catherine Davie. Jordan just beamed and we all had a great time together. I think she had so much fun that she didn’t mind so much when the afternoon was ended and it was time to go back to her rigorous schedule of recovery. I could tell you more, but I’m exhausted and I’ll let the pictures speak for themselves. I even have a little video I caught with Jordan yesterday.

While we were shopping, Jordan found a hat that she loved and I was only to happy to buy it for her. Doesn’t she look like a summer princess?

Jordan enjoyed using her new camera. She took this photo of Luc and I during our lunch at The Farm

We would have taken more photos at The Grove, but frankly, we were having too much fun. When we got back to CHLA, Jordan and I decided to chase Luc with the wheelchair. Jordan took this photo of him running from our menacing dash.

Can you tell how tuckered out this girl in curly locks was at the end of her great day? She had so much fun.

When she got back, dinner was waiting for her … and so was her Auntie Kelly. What a great way to finish the day.

My other girl, Jeanette, looks on as Jordan shares stories from her day pass day.

Luc liked playing with Jordan’s new camera. Before we left the hospital, he took this picture just for his sister. He said, “it’s a message for you, Jordan.” She thought this was cool.

While it’s true that I like to write, I thought it would be better to tell you about Jordan’s 13th birthday in pictures. I’ll only write five words without a photo: she had a great day! Thank you to all who worked so hard to make the big teen transition a big event and a fabulous tea party. So many people to thank, but I want to call out a few. First, thank you to Melody Griffith for making the most delicious tea sandwiches. Thank you also to Genevieve Ostrander, our friend of so many years, for her fantastic cakes and baked goods, fresh from her wonderful Delilah Bakery. Thanks to my sister Lisa for coming up with the tea party idea and making so fabulous. And thank you to everyone who dropped in and made my cancer slayer feel like a million bucks. All of our friends rock!

I also want to thank the amazing people at Alex’s Lemonade Stand Foundation (ALSF) and The Daily Grill. Jordan’s birthday fell on National Lemonade Day. The Daily Grill invited families associated with ALSF to their restaurant for a free lunch to celebrate the occasion. Of course, Jordan wasn’t able to leave the hospital so the very nice folks at The Daily Grill brought lunch to her! Before the big party, she enjoyed a delicious meal of cedar plank salmon and chocolate cake. She thought the meal was even more delicious when she learned that many of her friends and family had made donations in her honor to ALSF. Thank you!!!

She was very excited about her birthday

And she was very excited when it was time to start opening the presents. She loves presents.

First step, put that Mickey Mouse button on. Now, she’s a happy birthday girl.

Look at the beautiful face laughing. Is there anything else a Dad could wish for than big smiles from his daughter?

We had a very good turnout, with so many friends gathering around in the CHLA garden to celebrate big #13.

What did Jordan choose to wear for her big birthday? A cute little backless purple dress, of course. She didn’t pay the slightest mind to the fact that her freshest scar was on display. Who cares about a scar when you’ve got celebrating to do?

Jordan had plenty of stories to share with her guests. She was chatty from the moment the event began.

One of our dearest friends, the baker extraordinaire, Genevieve Ostrander, brought so many goodies for the party. If you haven’t visited Delilah Bakery in Silverlake, you haven’t really lived. No, really.

One scene-stealer: Aunt Lisa and Uncle Ricky gave Jordan a box filled with little Chanel introductions. Auntie Lisa explained that 13 was the proper age to have Chanel in a girl’s life.  Jordan was only too glad to follow the advice.

Jordan had plenty of time to chat with girlfriends. She loves this!

Whoa! What’s this? My friend Cathy Sincere Biermann at Disney put together a little gift box — and I’m being liberal with my use of the word ‘little.’

Jordan got up and decided to move over for this box of goodness. Weak legs be damned! She got up so fast Jeanette had to jump up and help. Nothing will keep this girl away from a big box of goodies.

This box was chalk full of exactly the stuff Jordan loves — novelties and fashions inspired by her idol, Selena Gomez.

And as the Selena Gomez loot begins to come out, look at the smile on her face!

Seriously, just a few weeks ago she was asking a sales woman to help her find outfits like Selena Gomez wears. Now she has some.

And who doesn’t want a Selena Gomez backpack? She was in heaven! Just in time for school, too. Thanks, Cathy and thanks, Disney.

Just as we were in birthday present heaven it was time for cake. Genevieve and the folks at Delilah outdid themselves on this beauty.

First, everyone sang “Happy Birthday”. I also shared the Tweet from Jordan’s friend Mal all the way down in Australia. She laughed when I said tha he wished her a “hippy happy Birthday.”

Then, it was time to blow out the candles. It’s hard to blow out 13 candles!

Look at that cake! It was delicious.

After the fabulous party, we went back up to Jordan’s room and sorted out all the gifts. Jordan was tired but so excited about the day.

We transferred all the decorations, flowers and birthday accoutrement up to her room. And, Jordan decided to keep going. She was delighted when she convinced her aunt and uncle to spend the night with her and extend the celebration.

Poor Ricky. He was stuck with these two. When Jordan and Lisa are together, it’s a total girl-fest.

But Jordan took a break to do what teenagers do best — talk on the phone! She connected with our friends Matthias and Lisa to tell them all about her big milestone.

Here’s a picture that made Jordan pretty happy. Mom and Dad told her that our present was to help her redecorate her room to make the “fashion design” room she’s been hoping for. First step: we hung the curtains that she made herself. They’ll be waiting for her when she comes home. She said, “oh, thank you, Daddy. That’s so nice!”

She has been waiting for this day all year. To be technically accurate, she has been waiting for it for a couple years, telling people who asked her how old she was that she would soon be a teenager when she was just eleven. Jordan relates teen status as a magical transformation. In her mind, she joins an elite club today and she’s pretty excited about it.

I will post updates from the festivities later, but right now I have a special request. It is not only Jordan’s big, enormous, gigantic, stupendous birthday celebration. It is also National Lemonade Day. And if you text “Lemonade Day” to 85944 on your mobile phone you can donate $10 to Alex’s Lemonade Foundation, which raises money for pediatric cancer research. Think of it this way, my girl’s a cancer slayer and this wonderful organization is like the “watcher’s council.” (A deep, Buffy the Vampire Slayer cut for you sci-fi fans). ALF does fantastic work. It raises money to end childhood cancer, but it also provides loving support to children and their families. If you really want to get your groove on for Jordan’s birthday today, pour yourself a glass of lemonade and give a gift to ALF.

The Pablove Foundation released a series of videos about the Pablove Shutterbugsprogram. Jordan was an inaugural participant and one of the videos features her. Check it out … and while you’re at it, consider supporting this really awesome program that allows children living with cancer to express and develop their creative voices through the art of photography.

Jordan loves the therapy dogs. Chocolate got right up on the bed with her. Love!

She shows her many scars to her grandchildren
and they whisper and elbow one another with rapt interest.
She meets her brother for dinner
and they spit and spend and speak of family memories.
She takes her mother out for a day of shopping and a lunch with bubbles
and they share moment after moment that can’t be captured well.
She looks down on little blessings that found her most unexpectedly
and they see only a mother who is loving and warm and wonderfully free.
She buries me with fond memories
and the same iron will that made me love every single day with her wishes on.

Free of the cables and monitors, Jordan’s spirit perked up. She will be at CHLA for some time to come.

When we arrived the room was empty; just a bed with fresh sheets watching over a lonely window. All of Jordan and Jeanette’s things were there, just not the girls. Before my mom and I could worry a nurse peeked in and told us that Jordan was taking a shower. Our shoulders relaxed and we each found a seat to wait.

I wasn’t sure what to expect today. Yesterday, she was so somber. She sat quietly and didn’t feel much like chatting. She let me read to her, but then she rolled over and closed her eyes in a half-state of nappiness. We’re convinced the test was to blame for her subdued mood. The neurology team wired her chest and the top of her head with electrodes for an extended EEG and video surveillance. They’re trying to understand what’s happening in her brain when her legs and arm shake uncontrollably. The whole team has assumed these spasms were a form of seizure, but Jordan is on so many anti-seizure medicines at the moment that it has everyone puzzled that she continues to have these issues. The latest hypothesis is that they may not be seizures at all. But the team needs more data to decide one way or the other. Hence the Frankenstein bundle of colored wires that erupted from Jordan’s head, wrapped in a bandage she found distastefully drab.

When they first wired her, Jeanette said she was bubbly and cooperative. She was intrigued. Then, the technician told her that she’d have to keep it all on for 24 hours. That was less intriguing to her. In fact, she looked over at her mom and asked incredulously “really?” She weathered through, but in 24 hours she only had three brief spasms. Brief spasms. So brief that there was still insufficient data. So, the team decided to extend the study for another 48 hours. Jordan was livid. By the time I saw her on Saturday morning I think she had resigned herself to her unfashionable fate. She lay there in her bed like a dog or cat who is forced to wear one of those cones to protect themselves after a procedure, looking forlorn and utterly miserable. That’s how I last saw my girl.

Just as I was thinking about this she wheeled into the room with her mother. All of the bandages, electrodes and sorrows had disappeared. She was fresh out of the shower, her hair still wet and her skin looking fresh. She wore a giant smile and shimmied a little in the wheelchair when she saw me. I told her she looked great and gave her a big hug. She wanted to get into the dress she’d had me bring from home. As soon as she’d changed, she visited with my mom and I. It was a completely different girl. I love it when she’s like this. It’s easy to have hope when she has this much spirit.

We’re stuck in a tedious state of ignorance. We don’t know what’s causing the spasms, and we probably won’t have much more insight until the team returns for work on Monday. We don’t know how long Jordan will stay at CHLA for physical therapy, and we probably won’t know until they consult with us on Tuesday. One nurse told us that it could be as long as four weeks. And, we don’t have all the details on the pathology of the biopsies. We know the tumor that was removed was different from previous biopsies. We also know that some of the tissue they biopsied was indeed dead tumor. Short of that, we don’t know much, but again, we hope to learn more in the days ahead.

We also know that Jordan is losing weight. It’s a common side effect of some of the medicines she’s taking. That doesn’t make us feel much better though. She’s quite thin. The CHLA team has ordered her to drink as many milk shakes and smoothies as she’d like. They’re encouraging her to consume calories. This makes her happy.

Jordan takes one day at a time, and keeps her spirits up with fashion and conversation.

Rehab is going slow so far. The seizure/spasm episodes have interrupted some sessions. Then the test delayed others. Jordan’s legs are getting stronger, but she still can’t walk on her own. She needs a walker and someone to guide her. Her bladder isn’t completely under her own control, which makes her angry and often ashamed. We try to remind her whenever we can that this is a common side effect of the surgery, and that it will probably subside as she gets stronger.

Her birthday is our biggest challenge at the moment. It’s next Saturday. She has been pretty excited about the fact that she’s about to officially become a teenager. You can imagine how excited she is about achieving that milestone in the hospital. Until a few days ago, we’d hoped she’d be out of the hospital before her birthday, but that seems a bleak probability at this point. So, Jeanette and I have been preparing her. Today, I told her that it was very likely that she’d have to celebrate at CHLA, but we would make it the biggest blow out ever, I declared. I reminded her of the old adage that when life gives you lemons, you make lemonade (a friend of my mom’s made her a quilt on this theme). Jordan nodded a bit reluctantly. Now, I’ve got to deliver on that promise. I’m open to suggestions from friends. Somehow, we will make #13 memorable — in a good way. I’m determined.

Jordan enjoys a teen mag sent by our friends at Siegel+Gale

I suspect that Superman feels this way after he’s expunged the kryptonite only to find Lex Luther has hatched another diabolical plan. In his head, he must think, “good grief!” Perhaps every superhero has a Charlie Brown alter ego. That’s how Jordan must feel. It’s not enough to slay cancer. You have to relearn how to use your legs. And you can’t go home!

 

She’s super human. In every way. In five days she’s proven that she can take a superhuman punch and get right back up on her feet … almost. We’re grateful the legs are working, but they’ve got a ways to go before she can chasse around the house and keep us on our toes. Make no mistake, she’s on them as often as she can. The only complaint you hear when it’s time for physical therapy is how much she’s sweating.

This is why I am intoxicated with this girl.

Yet, make no mistake, she gets blue.

It’s the pace that troubles her. She wants to be home. She wants to be on her feet. She wants it all to be over. Who can blame her? I think that’s the curse of being superhuman. Everyone admires you and everyone applauds your derring-does. But you just want to do like the rest of the world. I suspect that sometimes superheroes like Jordan want to be perfectly ordinary. They mumble to themselves, “yeah, yeah, yeah … give me a pair of pajamas and the remote to the television.” Of course, they can’t have it. There’s another challenge to face. Sisyphus has it easy, they think. Give him my boulder and then cry me a river.

We read together tonight. I did my best acting job and she sat quietly, listening … tapping her fingers across the side of the hospital bed, smiling at me when I looked up from the page. Every so often I’d ask if she was alright and she’d say, “yes.” Then I’d read some more.

Nurses came in occasionally to check on this or that. One said, “I want to pull up a chair.” Jordan smiled and said, “that’s my Daddy.” I felt superhuman, and yet totally helpless. I suspect that’s how she feels times ten. But it doesn’t stop her.

Tomorrow she begins in-patient physical therapy. She’ll put her body to the test on an aggressive regimen geared towards making her legs obey her will. That’s a tall order, but she’s given it before. No one doubts what she’lll accomplish. Not her doctors or her parents or even her. Still, that’s small consolation for a girl who wants to do what all the other girls do. It must be lonely. As much as I’m grateful she’s superhuman, my greatest wish is that she can be super as an ordinary human.

QUICK UPDATE: We thought Jordan might come home today. Unfortunately, she still has a ways to go on her mobility. Her team doesn’t think she would be safe back at home just yet. When I got the news this morning, Jordan was in a stairwell with physical therapists practicing climbs. She’s motivated and working hard, but not ready to bid the hospital farewell. Tomorrow, she’ll be evaluated and her doctors will decide whether or not she needs to spend more time at CHLA for in-patient physical therapy. Even though the slayer doesn’t care much for this option, her mom and I are supportive. When Jordan lost the use of her legs five years ago because of a severe reaction to a chemotherapy drug, the intense regimen of in-patient physical therapy helped her ditch the wheelchair. I’ll post soon, when I have more news.

Thanks again to everyone who has followed along, sent words of encouragement, and kept us in your thoughts. It means a lot to Jordan and it means a lot to her family. You folks rock!

The Journey in Photographs:
Images from the first 48 hours

Strictly speaking, I don’t believe in magic. Oh, I like to watch a good sleight of hand, and I’ve been known to label scientific progress as “magical” a time or two, but I’m one of those guys who believes every unexplained phenomenon can be logically explained somehow. I can’t explain Jordan’s progress. It is everything we could have hoped for and more. To watch her these past two days is to experience pure, bewitching magic.

The surgery was a great success. We’ve always thought of her neurosurgeon as a rock star, but his latest performance is hall-of-fame worthy. Jordan had an MRI of her spine yesterday morning, and from the looks of it it appears he was able to remove all of the tumor in her spine. That, in itself, is terrific news, but what makes it all the more gratifying is that Jordan is recovering so quickly. She has no pain. In fact, since her surgery she’s only had one dose of Tylenol to address some soreness in her shoulders. Tylenol! She is in great spirits—super talkative, ebullient, and occasionally ornery. She is able to sit up and move around freely. All of her vital signs are good. She is able to move both legs. Her right leg is still weaker than her left, but she can lift it, bend it, and wiggle her toes some. And, she is starting to walk.

At about 5pm on Friday, Jordan met Laura, her physical therapist. Laura is a perfect fit for Jordan. She shares Jordan’s unbridled drive and mixes it with great fun. She reminded me of the ideal athletic coach: always pushing, encouraging, and changing up the game plan from time to time to keep the player engaged. Jordan was instantly attached to her.

—Let’s get out of this bed and do some walking, Laura said

—Ok.

Jordan sat up, a broad smile across her face. She was ready to throw her legs over and move. We actually had to slow her down and remind her that there were some preparations we had to make first. After Laura fetched a walker and prepared Jordan’s IV and catheter bag for mobility, it was time for Jordan to stand up on her own two feet. I watched her face as she slowly dragged her right leg over the side of the bed and began to put her weight forward. I think this was the first time that Jordan realized her legs felt different. She looked concerned as her right foot curled under and barely  moved the way she thought it would. But she didn’t give up. You could see the effort in her face. While Laura encouraged her to keep at it, Jordan willed her foot to move forward. It did so gradually, and eventually she was standing on it; her arms shaking to support her weight. The left foot moved a little easier, but still jerky and awkward.

Laura and Jordan practiced making small steps around her room. Jordan kept trying to do too much too fast. In her head, she knows what she wants her legs to do, but they can’t do it yet. We kept reminding her to only move one foot at a time. She wants to be fluid, but when she tries to move one foot before the other has completed its step she loses her balance. The walker begins to get away from her and she careens to the side.

It was an amazingly emotional experience. I was completely inspired by what she was doing at that moment. She was learning to walk again and it was anything but easy. She was incredibly focused and she was working up a sweat. At one point, she exclaimed, “this is a lot of work!” But she didn’t give up. In fact, after the first few minutes I imagined that Laura would say this was all for the day. And this is why Laura is such a good fit for Jordan. After those first tough, clumsy steps, Laura said, “great! Let’s put on your leg splints and walk down the hall.” Jordan was all in.

After she’d put on her splints and shoes, Jeanette stood behind Jordan and held her waist for support. Laura held the IV. I tried to stay out of the way and open doors as needed. I also grabbed my camera. Jordan began a slow, 10 minute walk out of her room, down the hallway and back. To help her focus on one foot at a time, we coached her with a rhythmic script.

—Right foot. Left foot. Walker. Right foot. Left foot. Walker.

It took the longest for her to move the right foot each time. And as the time passed, she had less and less strength to lift it all the way from the floor. She jutted forward with the walker, groaning here and there, willing her feet to carry her. Jeanette received quite a work out, supporting Jordan and catching her when her steps threatened to get away from her. However, she successfully made her way down the hall and back. And when it was done, she sat down in a chair, completely exhausted. I was swept away by the glory of it. 24 hours before I had worried so much that Jordan might not walk again. I never would have imagined that she would be on her feet so soon after such a challenging surgery. I had shortchanged my girl’s spirit. I must never forget that she’s a warrior—a tough-as-nails competitor. That’s why cancer keeps getting kicked in the teeth. I am so proud of her and so delighted that she is back to herself.

We still have some challenges ahead. We know that the tumor that was removed is different from the tumor tissue she was originally diagnosed with. From the analysis the team conducted in the operating room, it appears to be an astrocytoma. We don’t know anything more about the grade or type just yet. That analysis should come through this week. There is a good chance the oncology team will recommend more chemo. Jordan has had a few seizures in the hospital. These trouble her. And she’s a little worried because her bladder function isn’t 100% yet. We’re hoping she will regain enough strength that she doesn’t need to be catheterized. At the moment, she’s not able to expel enough urine to keep herself safe. She could have kidney failure if she can’t improve this function. We knew this was a possibility because of the surgery, but we’re hopeful that Jordan will keep getting stronger.

Just a moment ago she called me on my cell phone.

—Dad, I have some good news for you!

—What?

—The doctor just game in and he took off my band-aid.

—Which band-aid?

—The one that was on my back! Isn’t that great?

It was no band-aid at all. It was the surgical dressing. Jordan was thrilled to have it off and I was amazed that she’s healing so fast. I guess maybe magic does exist, after all.

She’s resting comfortably in ICU. Her blood pressure is steadily making its way back to normal and her right leg continues to strengthen. Given all the fear and anxiety we started the day with, we’re feeling very good. Before she dosed off for a nap, she let me take this picture. She has been smiling a lot. She also keeps negotiating with her medical team, trying to convince them she should be allowed to wear her own pajamas and lobbying for a McFlurry from McDonald’s.

When she came up to ICU she traveled with a posse—at least seven nurses, orderlies and doctors. All of them were smitten. She told them about her birthday plans and her dog and her brother and her favorite shows on TV. You would never have guessed that she had just completed a five hour high-risk procedure. It was beautiful to watch. We’ve spent enough time in hospitals to know better than to assume the coast is clear, but it sure feels nice to see her smiling. And I’m breathing easier knowing that the surgical team was able to remove so much of the tumor. It will be a few days before we get the pathology report back, but from the preliminary scan it looks as if this tumor was different from the rest of her disease. We’re not going to worry about that right now. Instead, we’re going to celebrate the great staying power of the lovely young lady who’s charming the crew in the ICU.

She’s awake in recovery. We’ve been chatting. First words out of her mouth: I want to change into my pajamas.

She has to stay flat on her back for 8 hours. She’s cooperating, but not pleased. Her blood pressure is low, so she may move to ICU before a regular room.

So far, her right leg is unresponsive. She is able to move her left and wiggle the toes on her left foot. It’s still early.

I told her she is amazing. She said, groggily, “why wouldn’t I be?”

We just met with the surgeon. Jordan still has about an hour to go. They are closing her up. The surgery appears to have been a success. He was able to remove the tumor. She appears to have some weakness on her right side. We won’t know how permanent that is until later. We are relieved that she handled the surgery so well and that her excellent team was able to remove the beast!