Archive | September 21, 2012

RTLF #16- Ashley’s story

I am doing a series of stories for Childhood Cancer Awareness Month. I’m reading Mary Tyler Mom’s account of her baby daughter Donna and their journey through her cancer. She chronicles Donna’s cancer in a series for Huffington Post for this month of September. You should follow it too if you aren’t yet. And share it. Please, please share it.

Last week was Siona’s story. A heart-rending tale from Siona’s mom of love and loss. Today’s is about Ashley- a survivor. But it’s not always rosy and easy. This is for sure.

“I want to be unaware of childhood cancer.”

This is what my friend Christin said when I asked her to help out with my blog series this month. I don’t blame her. She’s pretty blunt and to the point.  Her 7 year old daughter Ashley is a cancer survivor. Wouldn’t you want to hide under a rock and pretend there is no such thing as childhood cancer? Especially since for 2 1/2 years, they lived the days of treatments, fevers, surgeries, infections, hospital stays… more acutely aware than most of us.

I’ve known Christin and family for 6 years. Ashley was an infant when I met Christin. Tons of fun and a huge personality is how I describe my friend. She never minced her words on how hard it was raising a 1 1/2 year old boy with an infant daughter. Oops, Christin got knocked up when Dean was only 3 months old. She cried when she learned she was pregnant. I would too. But that doesn’t make her any less grateful of a mother to two healthy children.

Ashley, age 1. Uhm, yeah, that is cuteness alright!

If you met Christin you would notice her huge smile, her charisma and her wit. She’s as sharp as a tack and cracks me up all the time.  She’s a stay at home mom to two kids, a first grader and a third grader. She has a husband who runs a company called Baconsalt. She’s never idle or bored. She is always on the move. Now that her kids are in school, she has some ‘normal’ mom time. No more trips to the hospital and days for chemo. But is she doing cartwheels? Hmm, not quite.

I asked her if she thinks about Ashley’s leukemia every day, or has life started to distract her from all that. Yes, there are days she is able to be carefree, but once a month Ashley goes in for blood work, so there is that reminder.

When Ashley had her last chemo back in December 2011, well wishes and congratulations were abound for the family. Every one was celebrating. Christin had a quiet reserve. You wouldn’t know it, but on the inside, Christin was terrified. The safety of treatment, scrutiny, observation and specialists was not going to be routine anymore. What paralyzed her most- the thought of leukemia returning.

You don’t get a Cancer Free card when you are a kid with leukemia, unless you’ve been 5 years in remission. Ashley is coming up on her 3 year mark. The biggest chance of relapse is in that first year. Statistics and numbers occupy your thoughts.

Let me take you to the beginning:

Ashley was diagnosed with ALL acute lymphoblastic leukemia in September 2009. This is called the ‘good kind’. I know, stupid, but bear with me. She had the  Type B cell kind, again, the ‘better’ one. (Type B is  for better) (Type T is for terrible). There’s little alliteration  tricks to help parents remember. Although if you have a kid with the Type T, I’m doubting they use the same one.

Ashley had been a tippy-toe walker since around the age of 2. They were trying physical therapy and treatments to help her walk flat footed. The tippy-toe walking had been severe enough to cause Ashley not to be able to run, jump and land on her feet. So when a 4 year old Ashley went to her pediatrician wearing a diaper, Christin explained that Ashley said she couldn’t feel when she had to go poop. So to avoid accidents, she was wearing a diaper. Even though she is potty trained, Ashely knew, 4 year olds don’t wear diapers! So their doctor ordered an MRI to check for any nerve damage from the tippy-toe walking. The MRI showed spots on Ashley’s spine. The radiologist happened to glance up on the scan and catch them. Attention was focused on Ashley’s pelvis area, not her spine, so for the radiologist to look up and notice- was what changed the course of their lives completely. Hindsight also says, it’s what saved Ashley’s life.

After the MRI came blood work to check those spots. It came back clean. Then a CT scan was ordered. Came back clean. Thanks to the perseverance of their pediatrician, she wouldn’t stop until she knew what those spots meant. A spinal tap was ordered. The bone marrow aspiration tested showed leukemia. That day was when the bottom of the world dropped out beneath Christin and her husband Dave.

Immediately, surgery for the port access was done, chemo started and the dizzying, numbing existence of living at Children’s Hospital in Seattle began. Because the leukemia was caught at 33 %,  eight days after diagnoses and chemo in her system, the doctors announced the leukemia was essentially gone.

Ashley during treatment. I can hear that laugh!

Ashley is a stubborn, head strong, iron willed girl. I’m thinking she told cancer to Fuck off and it did.

That damned port was the bane to Ashley’s existence. For 2 1/2 years she hated that thing. It bothered her terribly. Access times were agony. Yes, it was part of what was saving her life. But tell that to a 4 year old!

Last December when chemo ended, it wasn’t until that port was removed a week later did Ashley feel liberated.

I asked Christin how wonderful that Christmas must have been for them. Ashley being chemo free, no more port, no more frequent visits to Children’s. She said it was awful. Christin was terrified.

What if the leukemia came back? This thought permeated Christin’s existence. The safety net of treatment was gone. Without it in her system is the leukemia going to rear its ugly head again?

This year, she says, her breaths are a little deeper than last year. As they approach the 5 year mark, there’s a release of tension uncoiling, slowly, ever so slowly.

After the new year, then blood work will be every three months. Which sends her thoughts into wondering if she is further from being checked frequently and what danger this poses. You can’t blame her for the paranoia. You can tell a parent that statistics of their children being hurt in a car accident, or riding their bike, are more than their risk of getting cancer.

But a cancer parent veteran is always that. A cancer parent. We haven’t even begun to discuss the guilt you can feel as well when you’re the parent whose kid lived. And you know parents that wish they could worry over blood work.

It’s a constant cluster fuck. Excuse me, but it is.

What we can focus on is Ashley at this day and time is a beautiful, thriving 1st grader. She had her tippy-toe surgery to correct her feet. Now with that behind her, the world is her oyster. She is still as stubborn as ever. But a sassy Ashley, is a healthy Ashley. And when you’ve seen your kid limp and exhausted from chemo and steroids on the couch laying with a blanket and stuffies, you take those parenting moments that make you want to pull out your hair. Because it’s life.

Ashley today. Her hair is long and wavy and beautiful. But her best accessory, that big smile.

Please spread the word of Childhood Cancer Awareness. Spread Ashley’s story, Siona’s story, Donna’s story.

Thank you.