Jordan's Journey

August 29, 2009

The Unwritten Chapter

Filed under: The Journey — Larry @ 3:02 pm


Good Morning

We are determined. Jordan will read. It is our conviction, shared with her doctors, her teachers, her family and friends. It is the gift that eludes her, yet she never alludes to her disappointment. She pretends to read, scanning through books and improvising passages of story. She recalls everything that is read to her, sometimes with alarmingly detailed comprehension. On the advice of a friend, we started buying her iTunes versions of books that are required in school. She repeats the narratives back to us.

Lately, she and I play a game. She has text messaging capabilities on her phone. Every so often, she sends me a text. It always says the same thing, “Jordan.” It is the only word she knows. I decided to take advantage of this channel to her. I send her a different three letter word every day. I try to keep the suffixes fixed for several days. I started with ‘bug,’ then sent her ‘hug’, then ‘pug’. When I get home I ask her what word I sent her. She usually makes something up, but then I have her retrieve her phone and push her to sound the words out. She is starting to get it. It’s the small steps that count.

She is slowly transitioning to a new medication that will prevent the risk of seizures but without making her hyper. It’s a slow migration. It will take almost 30 days to transition to the new medicine, but we hope that this change in pharmaceutical therapy will help her slow down and take to reading. It will require more than medicine, but we all know that Jordan has ample quantities of determination, spirit and ambition.

August 27, 2009

The Latest Scoop

Filed under: The Journey — Larry @ 6:34 pm


Jordan 1

We underestimated traffic and we misinterpreted basic coordinates. By ‘we’ I mean ‘me.’ Caught up in the move, we missed the opening of the latest Harry Potter movie. Jeanette and I promised the kids we’d see it in theatres. Then another weekend went by, and another. By the time I actually got around to buying tickets, the movie was only playing in a few theatres. I found one with stadium seating and assumed the “marina” in the theatre name meant Marina Del Rey, which is not far from here. But, in fact, it was in Long Beach. On this hot Sunday, I tried to maneuver the 405 and then side streets to get there in time. I failed.

– I am not happy — so much I want to say.

Jordan sulked behind me in the car.

– I just need to stop talking right now.

She stewed. Luc tried to help, but it was catastrophic.

– Jordan, it’s going to play on HBO a million times anyway. You’ll watch it, and watch it, and watch it, and watch it…

I shouted for him to stop. I so love the family drives. Jordan’s mood further soured. Then I had an idea.

– We missed the movie, but what if we get some ice cream.

And just like that, Jordan bubbled up. Sugar to the rescue.

She is doing very well. I haven’t posted in awhile because (a) she’s doing well, and (b) we’ve been busy. We are settled into our new home. Everyone loves it here. We enjoy being close to the beach. We enjoy the cooler weather. And we enjoy the closer quarters. Yes, that’s right. We enjoy being a little more cramped. We see each other more and we talk. It’s a wonderful thing.

Jordan turned 11 last week on the 20th. We celebrated with a sushi feast (she received permission from her doctors). She had a great night and she was in a beautiful mood. Last weekend we bought her a new bike. I learned about a program that had launched in New York, where you teach kids to ride by using a smaller bike and taking the pedals off. Jordan and I went over to the local school yard so she could practice running with the bike and keeping her balance. She’s getting better. I think she’ll be riding without any assistance very soon.

All is well with us. We’re counting the days until September 14th, when she goes in for an MRI and the decision to stop chemotherapy. She has already weaned off of the intravenous variety, and she’s eager to stop taking pills. She’s also eager to start at her new school. All in all, she’s finding life delightful, and I find her delightful.

August 4, 2009

Notes on A Move

Filed under: The Journey — Larry @ 7:53 am

Our family is exhausted and ecstatic, with just a touch of dazed and confused nostalgia. We moved from Pasadena to Santa Monica last Friday. Actually, the accurate description is that we moved Friday through Monday. Over the nearly 20 years we lived in Pasadena, we accumulated an awful lot of stuff. Moving from a large place to a smaller place is not fun. But the last batch makes its way over today and then we will officially be “out” so we can focus on moving “in.”
We love our new place. We love the neighborhood, which reminds us of the wonderful days we spent living on Mentor in Pasadena, in walking distance to all of our favorite eateries and shops. We have that again, and the kids are enjoying it. Luc set out exploring on his bike yesterday. He discovered a fine cafe just a few blocks from our house. We had dinner there last night and we toasted his good taste.

Jordan loves the new location. She asks me every day if we can go to the beach. I keep telling her we need to get settled first. She understands but she’s itching to try out “her ocean.” She gets so excited about change. I think she really loves the newness of it all. Sometimes, it causes a little overload.

On Saturday, Luc and I made several trips to Pasadena to haul our things across Los Angeles. When we arrived in Santa Monica in the afternoon, I knew immediately that something was not right. Jeanette’s face was serious as she dialed her cell phone. I asked what was wrong.

– Jordan was slurring her words and couldn’t tell me her name.

I looked up the staircase to see Jordan standing there. She looked a little worried, but she was able to talk to me and she sounded ok. Jeanette told me that after a few minutes Jordan was able to communicate again, but for a bit she was completely disoriented and her words were unintelligible. Jeanette could tell that Jordan was trying to talk, but all that came out were incomprehensible sounds. Jeanette asked her to say her name using the phrase, “My name is ____.” At first, Jordan’s words were just a stream of sounds. Then she focused and the words that came out were, “My name is Lucas.”

It’s been a long time since Jordan displayed this kind of mental malfunction, and previous episodes usually led to time in the hospital. These are the signs to us that something is afoot. We know the drill. We immediately call the hospital to consult with the oncologist on call. As we expected, they wanted to examine her. The two girls spent the rest of the day at Children’s Hospital while the team ran tests. Jordan was back to herself in no time, and she cooperated with everyone. Her blood work and her CT scans looked good. She was released from the Emergency Room at 10pm. Luc and I bought her some Tamales from El Cholo to lift her spirits. It put us all on edge, but Jordan seems fine. Just to be safe, the doctors delayed chemotherapy this week. She meets with her regular doctor tomorrow.

We don’t know why this would happen now, when all signs seem to indicate that the tumor is shrinking and she is preparing to go off of chemotherapy for an extended period of time. It can be the result of scar tissue. It can be the result of healing. My personal theory is that it’s akin to restarting your computer. For a minute or two her brain detects a crash and reboots. While it spins back up, the synapses misfire a few times. But once it’s all running again to speed, she’s her old self again.

On Sunday, after we loaded up my truck, Jordan won the coin toss and got to ride back to Santa Monica with me while Luc stayed with his mom and loaded up her Jeep. Jordan and I had a lovely conversation. Half way home, I had an idea. I told her I had a treat for her, but it wasn’t something she could eat. She loves surprises and she fidgeted in her seat waiting to see what I had in store. We passed our exit on the 10 West. I kept driving. We entered the tunnel that leads to PCH and a few seconds later the beach came into view, kissed by amber and pink rays of the dusky sky. It was a beautiful afternoon and as soon as Jordan saw the ocean her face lit up with a smile.

– Your treat is the beach!

I told her it was just for looking, we couldn’t get out. She didn’t mind at all. We drove up PCH for a bit, cruising into the Palisades before looping around and heading to our house. Jordan grew quiet, but it was a good quiet. She soaked up the sun and sand and surf. When we finished unloading at the house, we sat out on our balcony and watched the sun set while Jordan resumed her litany of observations and questions for me. I poured a glass of wine and answered the ones I could, deferred on the ones I couldn’t.

1.465 www.laurencevincent.com WP 2.6