Jordan’s Journey

She is draped in purple, preening herself in the company of her Auntie Lisa, who is blow drying her hair. They gossip and sample cosmetics. Jordan angles to the side and tilts her head with a healthy embelishment of feminine sass. She is having the time of her life. Her skin shines. Her cheeks blush. Her eyes charm on cue. This is why she survives. This is the life that is on her side as she kicks cancer’s sorry butt.

On this day of Thanksgiving, Jeanette and I are most grateful for Jordan’s health and prosperity. We give thanks that our girl continues to grow into a fascinatingly beautiful young woman. And while the disease still threatens from the fringes, we are grateful to have been blessed with a child who never gives up and never lets the struggle rob her of her childhood.

We are also grateful for our friends and our family. You have all been tremendously supportive over these six long years, and we are blessed with a constant stream of love and care. As you know, this year we asked our community of friends to join us in supporting the Pediatric Brain Tumor Foundation during the month of November. Jordan set a goal of raising $1,000. I am pleased to report that we have raised more than $1,600 for this very worthy cause. Thank you for making a difference. Thank you for all that you do.

–The Vincent Family

Jordan and I decided to participate in Story Corps’ National Day of Listening, which will take place on Friday, November 28th. Though the audio is not the best, you can hear excerpts in our latest podcast.

 

 Jordan's Journey Podcast, Episode 5: Play Now | Play in Popup | Download

She is intolerant of sniffles. When her nose runs, she is mad with contempt.

– Why is my nose always running?
– It’s just a cold, Jordan. We all get them.
– I don’t understand why my nose gets so cranky.

And there you have it: Jordan’s personification of the world. Her runny nose is not a symptom of a seasonal cold, it is an insubordinate appendage caught in an insurrection against her body. She scolds her feet the same way. When she tries to wear her boots without her braces the big toe sometimes pokes down and makes her uncomfortable. We adjust and try again, sometimes requiring several tries. Whenever the toe falls down again she rages.

– Oh! Toe, why are you being so stubborn?

She’ll appeal to me.

– Dad, you need to talk to Toe. She won’t get back up.

I always comply. I have a chat with Toe, then supervise as Jordan tries again. It’s half play and half her view of the world. Everything has a personality, none more than she. (more…)

MRI Day

We’re relieved. Though the radiologist has not delivered the report yet, Jordan’s oncologist has completed a preliminary review of the scans and reports that she is continuing to make progress. From his read, it appears her condition is stable, which is much better than we feared. Jordan’s persistent headaches, back aches and nausea worried us. We were all expecting that the tumor might have won this battle. But it seems Jordan is still kicking its butt … or at least holding the battle line.

She is exhausted. It was a very long day and she was so nervous in the morning that I think she’s now completely spent. We took her to Denny’s (at her request). She ate a pancake breakfast and a hot dog plate. She is now taking calls from her family and lounging in front of the television. Thank you, everyone, for all the kind words of support. We definitely did not feel alone these last few days.

She heads to CHLA in about an hour for her quarterly MRI. I’ve never seen her this anxious before. She’s really worked herself up into a bundle of nerves. To top it off, she’s had a nasty headache since she awoke. When you add that to the mandatory fasting before anesthesia, you have an uncomfortable, nervous, somewhat dramatic patient on your hands. But she has reason to be nervous, so we sit with her, hold her hand, share encouraging stories, and try to keep her comfortable. Send good thoughts our way today.

A few years ago, I decided to take a slightly objective point of view to this blog site. Although it is nearly impossible not to inject my feelings, I wanted to chronicle Jordan’s story so that she could appreciate it years later. It wasn’t so much that I wanted to distance myself, but more that I wanted the site to be about her, rather than me.

This post is an exception to the rule. This post comes from inside. It might make you uncomfortable. It makes me uncomfortable. But, it’s part of the journey. (more…)

She’s a little nervous. She has a full week ahead. On Monday, she returns for chemotherapy. Then, Tuesday she goes in for a new MRI scan. Wednesday, it’s a full evaluation from her neurooncologist. All in all, she’ll be spending a lot of time at Children’s Hospital.

I have previously written about her growing maturity and sense of wellness. January will mark the sixth year of her journey. In six years, any child will change a lot. Their entire identity emerges–their sense of the world around them and the way that it connects to their lives. Swiss Psychologist Jean Piaget, in his landmark studies of children’s cognitive development, found that children Jordan’s age begin mastering “concrete operations”–the ability to apply logic and tie it to personal experience. I think her growing ability to do just this is creating some sobering realities. She worries more than she once did. The uncertainty surrounding every MRI scan casts a shadow on her otherwise gregariously optimistic spirit. Last night, she confided to her mother that she was anxious about Tuesday’s scan.

– What if my cancer is growing again?
– Then Dr. Findlay will have a new plan of attack. He always has 2 or 3 in his back pocket, just in case.

Jeanette’s counsel provided some comfort, but Jordan grew a little quiet thereafter. In these moments she often vacillates between excessive intimacy and extreme isolation. She either wants to sit right next to you and lean all over you, or retreat to a quiet corner and occupy herself alone, quietly. (more…)

Even in November, Jordan prefers to lounge California style–in a bikini.

She had a rough couple of days this weekend. Saturday, as we started our weekly pancake ritual, she suddenly ran for the bathroom. By the time I caught up with her she was retching over the toilet, emptying what little she had in her stomach. True to form, Jordan was unstoppable. As I held her hair, she kept trying to talk to me, garbling her words with burps and vomit. I had to keep telling her to wait. She could tell me later. When she had finished, she finally got the words out.

– I hate chemo. This is disgusting.
(more…)

Our refrigerator melted down. When I awoke Tuesday to a pool of water, I blamed the kids for not closing the freezer door. Then I hopped on a plane for a week of travel. It turns out the kids closed the door. The fridge shorted out. As a result, all the food we’d saved / neglected / relied upon spoiled. Other than a few essential items Jeanette purchased yesterday, the cooler is now completely bare. (more…)

I don’t mean this as a political message at all. I am in St. Paul, MN. At 10pm CT, Jordan called me. She was euphoric, hooting and hollering. I asked her why she was so happy.

Her reply:
–Barack Obama won! Isn’t that cool?