When Time Stood Still

Four years ago today, my sister, Taylor, became just the sixth person in the history of the world to undergo a neural stem cell transplant.

I will never forget the first time we got “the call” from the West Coast, informing us that Taylor had been accepted into the groundbreaking clinical trial. Nor will I forget the call that followed shortly afterward, informing us that the sponsor of the study had changed its mind.

Just two spots remained in the study. Taylor, whose estimated two percent PPT1 enzyme production delayed the onset of the infantile Batten disease fatally encoded in her genes and shocked the study team with her ability to not only walk and talk but also attend school, dance to music, answer the phone, learn Braille and maintain a sense of humor sharp enough to keep adults on their toes, was just too healthy for the phase one safety trial.

We all but gave up on spots five and six. Banking on Taylor’s minuscule enzyme production to buy us some extra time but knowing it wouldn’t save her forever, my parents searched every square inch of the medical world as they looked for possible miracles.

Then, out of the blue, another call came. And just a few short weeks later, in early January 2008, we boarded a plane for Portland, OR.

Mom lived in a Residence Inn within sight of the hospital for seven long weeks that winter while Taylor recovered, but the seven days I spent in Portland for the actual surgery felt like seven weeks. Throughout my entire life, I have never experienced anything quite like that week. Time stood still, and I felt as though I was watching another family that merely looked like mine, but wasn’t really mine. Still, there are a few singular moments that stand out to me – moments that inspired feelings so real, they are the only way I can be sure the week actually happened – the images of which will be forever burned into my memory.

Around 5:30 a.m., a few hours before Taylor’s surgery, I walked up behind her in our hotel suite. She sat watching (yes, at that time, seeing) her portable DVD player – a picture of normalcy framed by chaos. The first thought that popped into my head was how beautiful her hair looked. About two hours later, all of it would be shaved off in the operating room.

Not long after they’d wheeled Taylor back to the OR, the study coordinator walked out to the family waiting area and placed a Ziploc bag containing Taylor’s hair in my mother’s hands. It sounds like such a benign, forgettable thing, but it was one of the most powerful moments I have ever witnessed.

Following the surgery, we stood outside clear sliding doors as the nursing staff tried to place Taylor’s PICC line. Still drugged, Taylor nonetheless wasn’t in the mood to be poked and prodded. We felt badly for the nursing staff, but watching her give them a hard time also caused me to smile for the first time that day; seeing some of that spunk meant we had our Taylor back.

One night, we sent Mom and Dad back to the hotel so they could get some real sleep. Around 2:30 or 3, Taylor started crying; nothing we did consoled her. We called the night nurse, who arrived immediately, pulled up a chair and held Taylor’s hand until she stopped crying, her eyelids flickered, and she drifted into exhausted slumber. I will never forget that nurse. She had long, dark hair pulled back into a loose ponytail, was originally from eastern Washington and gave my little sister a night of peace.

Four days after the surgery, Taylor’s care team told us she could go back to the hotel. I never imagined a little girl could be so happy after all she’d been through. We bundled her up in her cheetah print coat, pink hat, scarf, and boots and took her and her stuffed unicorn – her snuggle buddy for those difficult few days – on the wheelchair ride of her life. And as we exited the hospital, Taylor inhaled a deep breath of cold, damp air and smiled, as if to tell the world, I just made history. What else you got?

Years have passed since that singular moment in my sister’s short life, and still, Taylor continues to ask the world that same question. She’s taken a couple more hits along the way. She can’t see those movies on her portable DVD player anymore. She’s not doing Braille. But she still has one hell of a sense of humor.

I wish I could say that surgery in Portland saved Taylor’s life. Some people, in fact, actually think it did. They’ll ask me how she’s doing, and when I tell them, they’ll say, “But she had that surgery…”

That’s when I tell them what a phase one safety trial is. And, as if that isn’t enough of a knock, I’ll remind them that Batten disease is a monster.

When we received that deciding phone call in late 2007, Portland was the best shot Taylor had. We were desperate. We didn’t know if it would work, but we also didn’t know if we would ever get another shot. And when Taylor was finally accepted, we called it a gift. But if you want to know what I really thought then – and believe more than ever today – it’s this: Taylor, and the five other children in the trial, gave the greatest gifts of all. They endured an incredibly invasive brain surgery and intensive recovery and gave the gift of hope to millions with Parkinson’s disease, Alzheimer’s disease and other far more prevalent brain disorders who will very likely someday benefit. I will never forget that week I spent with my little sister in Portland, OR. And I don’t want the world – or the company that sponsored a particular phase one clinical trial – to ever forget the grand sacrifice of six very sick children.