The Search for a Name or The Diagnosis Part 2

When I was pregnant with Alannah, the hunt for a name was never an issue. Her name had been picked out since 1990, and she was born in 1994, so, yeah, we were good. There isn't really a suitable diminutive, and frankly, if you tried something like "Allie" on her, you'd likely get kicked in the shins. So, Alannah it is.

Then Zachary came along. I wanted to name him Jack, after his Daddy. He would've been a cute Jack, too. All blonde hair and blue eyes and a charming sense of humor that will, sadly, have girls flocking to him someday. Jack would have been great for him. But, noooooo, apparently having pushed an 8-pound object through a garden hose does not give me naming rights. Ronnie vetoed it. So, like 9.3 million of our closest friends in 1999, we named him Zachary. You can deduct 20 points for originality. He answers to Zach. He answers to Buddy. He answers to just about anything equally, which is to say you stand about a 3 in 5 chance of being ignored no matter what you call him.

To the legal authorities who keep track of such things, Mandy is actually Amanda. But don't call her Amanda. EVER. We named her Amanda, fully intending to call her Mandy, but thinking someday she might want a name that didn't sound so cheerleader-esque. Had I known then what I know now, I would have just named her Mandy and been done with it. She calls Amanda her "hospital name." It is actually on her charts at the hospital and at clinic, in big red letters. "PLEASE CALL ME MANDY." She hates Amanda and says it makes her not feel good when people call her that because it makes her think of doctors and hospitals.

Back in 2005, she spent a lot more time being Amanda then she did being Mandy. I told you about the first diagnosis and how that came to pass here. Since that point, she had regular MRIs and has been followed by a small army of doctors. During much of this time, she had very little that distinguished her outwardly from other kids. We used to joke about how much medical attention our not-sick kid received. We hoped her NF diagnosis would stop with just the cafe au lait birthmarks. We hoped she would be one of the 90 percent of people with NF who live largely asymptomatic lives.

In 2005, it became painfully apparent she was going to be in the other 10 percent.

They started slowly, the Episodes, as we came to call them. We needed to call them something, but that was the hardest name search ever. The Episodes, usually started with her seeming drunk: slurred speech, wobbly on her feet, memory issues, all without the benefit of a vodka and cranberry to get her there. As the Episode progressed, she would sometimes lose consciousness, and it almost always culminated in a very violent vomiting spell.

The very worst Episode was at her birthday party. The story would be slightly less painful to retell if it had started with "It was her 21st birthday and she had one cocktail too many ..."

But, it was the middle of her 5th birthday party, not 21st.

At a Gymboree Play Center, not a bar.

And it was absolutely terrifying.

A really nasty Episode starting rearing its ugly head and just kept escalating. It culminated with me rocking my unconscious daughter on my lap while the other 5-year-olds played around her.

Her physicians were so frustrated with what was happening with her that the rule had evolved from "take her immediately to ER when an Episode starts" to "We don't know what's going on and can't do anything to help. So, take her to ER or call 911 only if she is unconscious for more than 30 minutes."

Do you know how long 30 minutes is?

30 minutes is a sitcom.

30 minutes is a relatively short commute to work.

30 minutes is roughly 10 shuffled songs on your iPod.

Holding her, rocking her, wondering what was happening with her, wondering when was she going to wake up, being terrified what damage may be occurring ... 30 minutes, is a lifetime.

They thought they might be seizures. We spent more than a week in the long-term seizure monitoring unit of the hospital with her hooked up to an EEG and plugged into the wall continuously. They caught an Episode on EEG and video. It wasn't a seizure.

Neurology sent us to Oncology, thinking maybe we needed to address some tumors in her cerebellum. But they were not enhancing (growing) on MRI and didn't appear to be causing any pressure to account for the symptoms. They talked about neurosurgery, but that isn't something you go into unless you know what you are dealing with. We didn't. They talked about starting her on chemo. In fact, they talked about it to the point that they handed me the consent-to-treat form. Then decided they just weren't sure what they were dealing with. It wasn't worth the risk.

Oncology sent us to Neuro-Oncology -- as it turned out, an NF specialist in Dallas, where the original diagnosis had been made four years previous. Mandy and I got on a plane and flew from Tampa to Dallas only to hear more variations of the constant theme of, "Hm ... well, I have never seen that before." Could be this, might be that, I am just not sure, let me consult with so-and-so, were things we heard over and over. The sound of the phrase "unusual presentation" was worse than fingernails on a chalkboard to me.

Meanwhile, Mandy could not be out of my sight. School was an issue, playdates were an issue, everyday life was an issue.

Issues with no answers. None. At all.

The Dallas neuro-oncologist sent us to see the doctor who wrote the book on NF, literally. So, Mandy and I flew to Birmingham, Ala., hoping and praying that we would find an answer. We got more of the same: "I have never seen this before."

We chased our tails, desperate for an answer, a diagnosis, a name, a treatment for almost a year, to no avail. We had no idea what we were dealing with and no way to help her. Never have I been so desperate for a name. I just wanted a diagnosis, a prognosis, a treatment. But there was none. It was an incredibly helpless feeling.

After countless tests, EEG's, MRI's, bloodwork, plane flights and uninsured doctor visits, we still had nothing. The Episodes continued, uncontrolled.

Every time, at every new doctor appointment, they would call for Amanda Willis. Every time, at every doctor appointment, she would angrily grumble, "My name is Mandy!" She was desperate to just be Mandy. I wanted nothing more than to let her. Just. Be. Mandy.

And then, they stopped. The Episodes just stopped. They waned at first, less severe, less frequent and then finally they just stopped altogether.

Two years went by. I got comfortable. I started to believe everything was going to stay OK.

And then came the routine followup MRI a year ago. Honestly, I was more comfortable going into that scan than I had been in a long time. And suddenly, when that scan was read, words like "chemo," "oncology," "tumor" stormed back into our lives.

Now, it's been a year since chemo started, since that MRI that showed "significant disease progression." And honestly, I can't imagine ever finding my way back to that comfortable, safe, "maybe everything really will be okay" feeling ever again.

Now, we have a name. Now, we know what they're chasing. That's all we wanted. Having a name, as it turns out, doesn't make it better.

Love to all~

PS A post I wrote a few months back is being featured on the home page over at Divine Caroline. It is the second post on the carousel. Check out "I'm Sorry, What did you say?" over at Divine Caroline.