The Menu
We unfolded the single sheet of paper and handed Jordan a pen. The nurses looked on curiously. Six menu items were listed. She couldn’t read any of them, but she knew what the big rectangular box meant next to each. If she could check off each of these boxes, she’d earn a reward, and today’s reward was the DVD of High School Musical.
“Can you read me the first one, Daddy?”
Before I could even start to read “lie down on the table” Jordan was climbing onto the exam table. As soon as she was prone she reached for the pen and checked the box. The IV nurse cocked her head as she put on her gloves.
Jordan handed Jeanette the pen and began unbuttoning her pajama top. Step two was to take off her shirt and peel off the bandage on her port. We read this to her, but she was ahead of us again and reached out for the pen. The nurses whispered amongst themselves. In the next room we heard the cries of another kid who was not as compliant as our little girl.
The nurse began cleaning the skin on Jordan’s chest, which was actually step 3 – let the nurse clean the port. Jordan lay still to let her finish. Check!
Not being as accustomed to this as Jeanette, I took a step back to admire my daughter as she tucked her hands behind her head. She reclined all the way. Then I looked down at the list: “Step 4: Put your hands behind your back or to the sides.” Another nurse came in to watch. The two of them, the nurses, they giggled a bit and praised Jordan for her bravery. They told her they wished other patients were as helpful.
Step 5 was easy enough, although we had to remind Jordan. Look away. Naturally, she wants to look down to see what they’re doing to her body. But the best thing for a kid to do is look away, and once we reminded her to do so, she did. The nurses moved in. Fortunately, I’m not squeamish around needles.
And then she started singing. Yes, singing. Step 6. She broke out into a lovely scat, half Ella Fitzgerald, half Disney. She sang and held my hand and only stopped for a moment on the pin prick.
“Ow!”
That was it. Then she went back to the song while the nurses dressed her port and prepped her for the MRI. As we walked over to the giant machines that would photograph her brain and spine in vivid radiologic detail, the nurse leaned in to Jeanette and I to praise our girl and compliment my wife on her brilliant way to manage Jordan’s anxiety.
Only one of us could go with Jordan into the MRI room. Jordan’s had many of these, so she has no fear of the process at all. But she still likes for me to be there when they put her out with sedation. I made sure my travel schedule complied.
She waltzed into the room, gabbed with the anesthesiologist and sang a little more, just for good measure. She wanted to climb onto the MRI table, but the docs insisted that Daddy do the honors. She smiled as she lay flat as a board on the sheet-draped gurney. In the background, the machinery whirred and chanted rhythmically. Jordan was all smiles. She chattered on about the prize she was going to enjoy when she got home. She told the docs that I called her a “sugar bug,” and a “sweet pea,” and a “snicklefritz.” The doc grinned and asked if she was always this animated. I told him she was.
I kissed her on the forehead as the white stain of the propofol creeped up her IV and entered her body. She was midsentence as its nectar took effect. Her eyes rolled back. The corners of her smile relaxed. The grip of her hand loosened. Such a simple process, and yet it still gets me every time.
She did great, of course. She never likes to wake up, but there was less drama bringing her to today than on previous occasions. And only an hour later she was chattering and singing again. She rambled on even as the oncologist came in to discuss the results. We had to keep reminding her to give us a moment. We promised her she could sing for the doctor when he was done visiting with us. She became a little cross. She just wanted to go.
For all her good deeds this day, the news would not be so rewarding. There is the slightest hint that her tumors may have increased in size. It looks as if there may be new lesions in her spine. There’s nothing dramatically different. In keeping with the crawling, vapid pace of her unique disease, the beast gave us nothing to react to. And this is indeed a blessing, though it bears an unsettling footnote. We are encouraged by her physical progress, by her mood and her boundless energy. But we are also nervous. We have not exhausted the clinical resources so there is no reason to panic or turn maudlin. She’ll begin a new chemo protocol next week, and the doctor is optimistic about its promises. We are optimistic, too. And Jordan is perfectly willing to earn more rewards for checking off her menu.