Friday, September 27, 2013

National Childhood Cancer Awareness Month; or, When Big, Bad Things Happen

*if you're a longtime reader of this blog, you may remember this from 2009.  If you're a new reader, this piece is a collaboration with Annie Howington (from whom I stole this photo).

On Memorial Day weekend, 2008, Annie, Ben, Jack (aged 3), and Lila (aged 3 1/2 months) left Brooklyn for a weekend trip to North Carolina, Ben’s hometown.  They never came back.

What happened isn't quite as ominous as it sounds, but nearly.

In short, a CAT scan detected a large tumor in baby Lila's brain, and North Carolina became their home, and uncertain became their future.

A year later, in 2009, I called Annie with some questions, and she answered them.

Do you ever consider what life would be like if this had never happened?

Certainly. Yeah. I mean, I don't think what would we be doing at this exact moment?, but I do think about what it would be like if life had just kept going on.  
I also wonder what it would be like if it hadn't happened in Raleigh. I wonder what we would have done without the family support, and I also think that both times we've lived here, it has been because of forces beyond our control. Both times we faced less than ideal circumstances, and just kind of gotten stuck.
In short, yes, I've thought about it.

Was there ever a moment, especially in the beginning, when you were in denial about what was happening?

There was never a chance to be in denial. There was processing, but no denial. I thought, I can't believe this is happening, but never this isn't happening.
From the moment the resident in the emergency room came in with her attending, there was always something to do. There was a plan of action right away, and we had to follow it. I just thought, this is what we're doing, this is what needs to be done. I had what if thoughts, but I couldn't think, this is what we're doing...but what if this doesn't work. I literally couldn't think both those thoughts simultaneously. I would think, what if this doesn't much time do we have with her.... But, there were things to be done, and with that kind of thought process, if you're thinking one, there's no point to the other.

Tell me about when the resident came in with the attending physician.

We took her into the emergency room because of symptoms we'd noticed. She wasn't focusing, and her eyes were bulging out. They'd always done this, but this was more, worse. I actually thought she'd lost her sight. I didn't know why she wasn't reaching for her toys, and when we drove her to the hospital she wasn't looking at me, she couldn't focus on me, and I thought she'd gone blind.
They did a CAT scan. I don't even know what they were looking for. Oh, wait, yes I do. They said it might be hydrocephalus. They said that it was fairly common, and sort of fit the symptoms. That's what they were looking for.
So, they swaddled her in lead, and did the scan, and while we waited for the results, they only take about an hour, the resident doctor came into take Lila's vitals. That was the last time we saw that doctor alone. When she came back in, she had the attending doctor with her. I don't know if that's procedure, or if she was nervous.
When she came back in, with her boss, I knew, on some level, that something was going on.
Although, if ever there was a time when I experienced denial, this was it. I had no idea what they were going to tell me.

What was it like when they did tell you?

Ben and I reacted very differently. Right away, Ben started to cry. Maybe you shouldn't write that. I just sat and listened to everything until the doctor was done talking. I guess it's surprising it wasn't the other way around.
She said, "Well, we were right, it is hydrocephalus. But we found something else. There's a tumor."
Time stopped. The floor dropped out from under me. All those cliche things really did happen.
Then the doctor said, "There's nothing more we can do for her here."
That statement...I'll never forget it.
We've had a lot of moments this year, but that first one, it's...indescribable. I can feel it, still, but I can't articulate it. I just don't have the words to give that moment the impact it deserves.

What was it like to tell people this news?

Oh, it was awful. I didn't want to make that phone call. I wished anyone else could make that call. But, I needed to call my mother and tell her. I didn't know she was driving at the time. I still feel bad about that. She had to pull over. I had her make the rest of the calls. I didn't feel it was my responsibility to spread the word, but I knew I had to call her.
Ben called his mom while she was giving Jack a bath. She started to cry, and for a long time Jack associated that phone call and her sadness with Lila's sickness.

How did you explain all this to Jack?

We kept it pretty basic. We explained that Lila was sick, and the doctors were going to help. We had many conversations about it.
Once, I tried to get more specific, I tried to explain what cancer was, but he didn't really get it.
It just became part of his life.

What have you done over the last year to retain normalcy?

In the beginning, there was a plan for Lila's treatment, but no plan for our life. We knew we were going to stay in North Carolina for her treatment, but we didn't know where we were going to live, what would happen to the apartment in Brooklyn, who would take care of Jack. In the beginning I would go days without seeing him.
Eventually, we worked it out. Ben and I would take turns at the hospital, one of us would be there during the day, and then we'd switch off, and the other would be there at night, so both Jack and Lila could see both their parents every day. Julie (Ben's mother) went to the hospital so Ben and I could be together, and be with Jack together.
We taught Julie and Janelle (Ben's sister) to administer the chemo so Ben and I could go away for our anniversary. This was a struggle.


I had to trust someone to give my child poison, essentially. It was a challenge to enjoy ourselves, thinking about that, while we were away. But it was necessary. We knew, even though it would be difficult to leave, it had to be done.
We tried to keep life normal for Jack, and hospital life was normal for Lila. It is what she's known for most of her life. For her, it is what it is.

And what about you?

What do you mean?

Is it what it is, or do you rail against what's happened?

The day it happened, sometime within the first 24 hours, someone said to me, "I don't know how you're doing this. I could never do this." And 24 hours before that, I suppose I would have thought the same thing. But if it happens to you, you do it, because there is no alternative.
You can't resist what you have no control over.

Can you speak to the response you've gotten to Lila from the public, both near and far removed?

I've never been a church charity case before, so, it was a personal process to learn how to accept help. A friend told me people wouldn't offer if they didn't want to help, and when people offered, I should say yes. So, I had to learn to say yes. It wasn't easy, but it was good for me, and it was good for Jack. Up until that point he had, let's say, a small circle of trust. He was looked after by only a few people, besides Ben and me, and this year has loosened him up. He's been watched by so many people, and it's helped us both to trust others.
The thing is, it's incredible.
Lila's name has been on dozens of prayer lists. People of all different religions were talking to God, whoever their God is, on her behalf. A friend put her name on the first presidency's prayer list, so Lila was prayed for, by name, by the prophet of our church, the Church of Jesus Christ of Latter-Day Saints.
It's been incredible, weird, and difficult.

What about this response surprises you?

It's surprising how this little person has impacted people who have never met her. I got an email from an acquaintance from college who told me that Lila's story changed her life. Until this point I'd only thought of how this had changed my life. I didn't consider how it had changed other people.
We recently ran a 10K for brain tumor research, and I got a list of the people who had donated to Team Lila, and an old college friend had donated $100. We hadn't been close since college, and he hadn't mentioned it, and when I saw his name on the list--I don't know how to describe that experience.
I guess I'm surprised, and moved, that people, so far removed, have been so affected. I don't pretend to know what it means, but any positive that's come from this, somehow makes this experience a little more worthwhile.

Has this changed the way you see service, or how you serve others?

Absolutely. I used to think that I owed so many people favors for all they had done. But it doesn't work that way. I had a trial, people helped me. Someone else will have a trial, and I'll help them. That's the way life is.
My mindset has changed. When I hear that someone needs help, I don't think, oh, someone else will handle this. I know now that it's my responsibility. If we all considered the burdens of our brothers and sisters our own personal responsibilities, then everyone would be taken care of.

Lila is in remission. Do you see this as a miracle, or do you feel that this was the only possible outcome?

I think this is a miracle. The type of cancer, which is aggressive and pervasive, is rare. The location of the tumor in her brain is rare. That she had this at her age is rare. Everything about this is extraordinary.
After her first surgery, because it's what we'd heard people on TV ask, we asked, "What are her odds?"
The oncologist said that he didn't do odds. It was 100% or 0%. She survives or she doesn't. It was the nature of what she had--it was really bad. I'm going to get into some medical terms here: she had a golf ball sized tumor in the back of her head, pressing against the brain stem. It was mostly calcified teratoma. There were also components of immature teratoma and the germ cell tumor, which is the kind of tumor that causes ovarian and testicular cancer.
The calcified tumor was so hard that, when the doctors removed it, it virtually peeled away from the brainstem, and they were able to get all of it.
Well, I take it back. That was in June, and we continued the chemotherapy through July and August. When they did the MRI in September, we were sure everything was fine, and the results would be good. We were cocky. If there was a time when I didn't consider anything less than a positive outcome, it was before the MRI in September.
But, there was another tumor. The chemotherapy had addressed the germ cell tumor, but not the immature teramoma, which is what had grown back.
After being so certain in September, we were terrified for the MRI in December. Terrified. The day after the test, we were in for labs, and a nurse passed us in the hallway and said, so casually, "Oh, the results were all clear. Everything looks good." It was amazing. She had given us, in passing, the best news we'd ever been given in our entire lives.
I mean, I would love to tell you that from the beginning I thought everything was going to be fine, that she was going to be fine. But, I didn't.
Medicine is incredible. All the prayers and was a series of miracles.

Since we did this interview in 2009, Lila has been in remission, and will celebrate her fifth remission-versary this December 4th.  She just began kindergarten in July, and spends her days doing gymnastics, drawing, catching bugs, riding her scooter, and playing with her older brother Jack, now 8, younger sister, Alice, and is waiting to meet her littlest sister, due in December.


  1. Wow. Thanks for this interview and for posting it here. I'm so touched and humbled. What an incredible heartbreaking journey for this family.

    None of us can ever possibly hug our babies enough.

  2. Annie and Valerie thank you for sharing this very personal experience with the world. I have a friend in England who is going through a similar experience. Her 2 year old daughter just got diagnosed with Leukemia. I can only hope and pray for the same wonderful miracle as little Lila's. =) She truly is a joy to watch grow up.