Continuing Resolution

Jordan’s surgery was a success. She handled it bravely, only complaining in pre-op that she was hungry. When I told her she couldn’t eat anything until after the surgery, she replied, “that stinks!” When we returned to her side about an hour later, the first words out of her mouth were, “I’m hungry.” She devoured a purple popsicle and asked for pancakes. We took that as a good sign.

She’s been sleeping well, and today was by far her most verbal. The swelling on her tongue subsided, making it easier for her to form words. Despite being anesthetized, she strung sentences together with the same precocious attitude to which we’ve grown accustomed. Yet, sometimes those sentences were the clearest indication of her illness. At random times she would bark an order to Lucas, even though he was twenty miles away. Or, she’d ask questions such as, “is that dog real?” Of course, there wasn’t a dog in the room. And then there are the ticks. She occasionally suckles her lips. Her hands are often in restless motion. Once, she rolled over and flicked her pillow defiantly with her finger, then rolled back onto her back.

Before the surgery, we all were filled with nervous energy. Jeanette and I reminded each other that this procedure was minor. We rationalized that Jordan had triumphed over two neurosurgeries. Surely, this simple implanation of a catheder would be a piece of cake (and it was). Still, when we once again rolled our daughter down the hallway, our anxiety pulsed. It’s dreamlike. We roll down a corridor we pass through every day. But then we round a corner near the elevator bank, and the orderly pushes a button. Double doors open to a hidden hallway, whiter than the others. It is bedecked with high-placed windows that allow bright light to filter in. The hidden corridor is more sterile, and everyone wears blue and green scrubs. When you enter this hallway, you realize the gravity of the circumstances. It’s surgery.

It went quickly. The surgeon earned our confidence – she was a warm, upbeat woman with definitive answers to our questions without any trace of arrogance. She met with us after it was done and praised Jordan’s spirit. The only complication was a slight seizure just after they finished sewing her up. Medication calmed her down. She’s been stable all afternoon.

We don’t know how long Jordan will stay at CHLA. The plan for now is to keep her stable. The anti-seizure medication currently prescribed is a short-term solution. We’ll have to transition to an oral medication she can take regularly to maintain balance. And then there’s the matter of the chemotherapy. Her medical team will meet with us shortly to discuss our options. In the meantime, Jordan’s comfortably situated on the east side of floor six.

Lucas is beginning to process the circumstances. Like us, he is in shock. He and I broach the subject now and again, but we inevitably move on to something else. He hugs me, and tells me that he loves me often. I hug him back and we pat each others backs to lighten the mood. I worry about him as much as I worry about her. In some ways, I fear he is more fragile. You can knock Jordan down, but she’ll always pull herself back up. It may not be pretty, but she’s going to prevail. Lucas is the more adventurous. He’ll try just about anything, and he brims with confidence. But his spirit is easily wounded, and it takes him longer to recover. He’s putting on a great show of being brave. I hope he knows it’s perfectly fine to be as scared to death as the rest of us. I hope he knows that we are resolved to take this journey with Jordan together. If there is one lesson I have learned through this experience, it is that we are not alone.