Tubing Again

The words that came out of the nurse’s mouth rubbed me the wrong way. It wasn’t her fault and she didn’t mean any harm. That’s why I tried to shake it off and be present. Focus. Be upbeat for Jordan. But still, those words were gnawing inside.

“Is she mentally competent to answer our questions?”

We were seated in pre-op for Jordan’s latest MRI. It’s at a new hospital. Our 19 year-old slayer has outgrown CHLA, so this is a new crew who doesn’t know her. There were no familiar faces as we walked down the hall and we had a lot of history to share before we could proceed.

The question was innocuous, and the nurse had to ask it. That’s why I wasn’t annoyed with her. I was annoyed with the words. Perhaps, I was even more annoyed with how we answered.

Jeanette fumbled an attempt to say that Jordan assigned us power of attorney to help her manage her health care. She didn’t use those exact words and I could tell the nurse was a little puzzled. I wanted to say something that would refine this notion of “mental competence.” All they had to do is have a conversation with Jordan and they would surely see that she is alert, and intelligent, and charming. But I reminded myself that that wasn’t really what the nurse meant. She wanted to know if Jordan could sign off on her own procedure; if she was capable of making decisions.

All this fuss was over the silliest of issues. Before Jordan could get into the MRI for a 2-hour brain and spine scan she had to assure the medical team that she was not pregnant. An MRI is harmful to a developing fetus. Ever since Jordan reached puberty, the team is required to make her take a pregnancy test. She usually gets offended. “Are you crazy, guys?” she asks with exasperation. At CHLA, she could usually have us sign a waiver, but this hospital was more strict. After a lot of back and forth, they got her to take the test and she was cleared for the MRI.

After 13 years of MRIs, you’d think this would be a routine emotional experience for all of us. And it is, somewhat. But there’s still an unsettling feeling in my stomach as I watch her drift off into sedation, with tubes and wires peeking out from her pajamas as she lies on a cold white table that will soon slide into a whirring metal oracle.

Will they find anything new? Is her cancer stable? Is there even the glimmer of hope that neurological progress is afoot?

This particular MRI was called ahead of schedule because Jordan has started having mobility issues again. She’s falling more and her balance is off. Her right leg is demonstrably weaker than her left leg. The orthopedics and physical therapy teams see no muscular reason for the setback, so the neurological folks want to have a look under the hood to see if there’s an explanation in the hidden recesses of her brain.

As usual, Jordan asked me to walk her into the procedure room. She wanted to hold my hand as they began sedation. Before she let them begin, she gave them all of her post-op instructions. They were not to use gauze with the band-aid that gets placed where the IV is. She doesn’t like how that feels. She wanted them to be sure to put the band-aid right-side up so that the cartoon figure was not upside down. It was essential that they keep Delilah (a beanie baby hippopotamus that has accompanied her on every MRI) close.

She gestured for me to lean over. She kissed me on the cheek and told me to tell her mom that she’d see her when she woke up. Then, with her usual grace, she closed her eyes and drifted off into assisted slumber.

Despite my annoyance at the discussion over Jordan’s competence, and the unfamiliarity of the new hospital, and the uncertainty over what challenge her body is giving us now, I am optimistic. We’ve come too far and my daughter’s spirit is too strong to let another mystery drag me into a funk. And on Saturday, I’ll have about 50 reasons to feel good.

On Saturday, Jordan returns to SoulCycle for our third annual Slayer’s ride, which benefits Alex’s Lemonade Stand Foundation. Last year’s ride was full of so much emotion and joy. It was the first time Jordan got on a bike and joined the pack for a 45 minute fitness dance party. And she loved it. She’s excited to be doing it again. I remind myself of the power and symbolism of that ride. People coming together in solidarity with children living with cancer. Regardless of what we learn from today’s scan, we know that we won’t be alone. Meanwhile, we’re keeping our fingers crossed that there will be good reason to celebrate continued health on Jordan’s Journey.

If you would like to contribute to our annual fundraising campaign, here’s the link. 100% of your donation goes to Alex’s Lemonade Stand Foundation. ALSF is funding groundbreaking pediatric cancer research—research that I firmly believe is getting us closer and closer to cures.