5.28.2012

Two Doctors Walked Into a Bar


by Stacey Graham

Note: As editor, I asked the Ermas to describe their life 15 years ago. Some columns are hilarious and others more poignant, but when I took a spot I didn't realize that I'd be describing my daughter's experience instead.

My second pregnancy was a breeze. No complications, labor was a short 1.5 hours and on her due date my lovely Syenna was born a healthy weight. At 10 weeks old, I noticed her stomach was hard to the touch - I figured she had gas. Her three-month visit to her pediatrician had yielded nothing abnormal. Two weeks later, however, the world turned upside down. At her four-month checkup, her doctor couldn't feel her kidneys so sent her for an ultrasound; there the technician discovered Syenna's abdominal cavity was filled with fluid. We were in the hospital the next day where they extracted a liter of a milky liquid called chyle from her belly. She was diagnosed with Chylous Ascities,  a condition that didn't have a great batting average due to being associated with cancer, organ failure and ripe for infection from her loss of antibodies. She had nothing else, thank goodness, except for a whopper of a birth defect. In the past few hundred years since Chylous Ascities was recorded as its own condition, there have been less than 400 cases -- out of those only a handful were females. Awesome.

Eighteen months passed with us in and out of the hospital, usually for three weeks out of every four. Three major surgeries, shunts and blood infections from procedures and the tubes criss-crossing her body kept us regular guests at Doernbecher's Children’s Hospital. I had my own mug at the nurse's station. I showered on the oncology floor while old ladies rocked Syenna so she wouldn't be alone. My eldest daughter, who was two at the time, stayed with her grandmother during the day while her father split his time between work, visiting Syenna and I, and still being a fantastic dad. I watched as families admitted their child and the patience of the nursing staff as they guided completely freaked out parents through the horrors of what came next and I said goodbye to a disturbing amount of children as they passed from this life. Our surgeon worried that our marriage would be torn apart since so many couples handled stress differently, it only made us stronger. If we can face down this, what's arguing over who forgot to do the dishes that night?

At her last major surgery, which ripped open her belly for a second time so the surgeon could look for the leak in her lymphatic system, he told me this was it. Our options were limited if he couldn't repair the damage. The operation was not a success and while devastated I asked what the next step was and to move forward. I had no time for weeping. She was put on a cocktail of meds that were piped through a tube into her chest -- and no eating for 13 weeks. By now, Syenna was nearly two years old and hadn't taken a step, she was too weak. She refused to eat the no-fat formula the doctors prescribed so was losing weight quickly though her belly had swollen to 64 centimeters around. Obi-Wan, the cocktail was our only hope.

It worked. Thirteen weeks later, she ripped out the tube and took her first step. This chapter was done. She’s fifteen now and shows off her scars proudly. I think this week the says she was bitten by a shark. Last month she’d been caught by spies but escaped under barbed wire. Nothing is going to slow this kid down. Syenna's case was (and still may be) used during lectures at Oregon Health Sciences University because of its rareness and that she's adorable. CA hasn't returned but it doesn't stop me from squeezing her a little tighter during hugs -- just to be sure.


Stacey Graham has only a slight twitch from her experience with hospitals and went on to have three more children with no medical difficulties. Syenna is a straight-A student and plans to be a marine biologist unless One Direction asks her to be a roadie. Stacey is the author of two books: The Girls' Ghost Hunting Guide and the Zombie Tarot, as well as an editor and short story writer. Visit her at her blog, on Twitter and on Facebook to say howdy.

18 comments:

  1. Your girls are lucky to have you. <3

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  2. This is beautiful, beautiful. What an amazing story and I'm heart broken you and the Mr. had to go through all of this.

    You are strong people and Syenna is a miracle.

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  3. :Wiping tears from my eyes:

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  4. *sniff* Don't mind me, I just...I just got something in my eye there.

    Also, there's a reason your kids are awesome. Takes awesome parents. ;)

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  5. Awwwww. She's fine and as sassy as the rest of them. I had a great support group and Bryan was (and is) amazing. This wasn't the easiest column to write but life has an odd way of making you stronger whether you want it to or not.

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    1. Amen to that. Thanks for sharing your story, Stacey.

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  6. Damn, Stacy. Don't make me cry at work!

    I love the happy ending.

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    1. Thanks! When she was diagnosed there wasn't a lot of information on the web so I spent a lot of time emailing doctors around the world and discussing her case with anyone that would spend a minute with me. Luckily my surgeon was the rare kind that welcomed input from parents and we worked together on her case.

      Now I see from that article linked above that mortality rates are very high. Good thing I didn't know that then (though I suspected it), there would have been trouble.

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  7. Amazing, inspiring story. That kid's going to be one heck of a woman, especially since she has such a sterling example to follow.

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  8. Tell her to be more careful around barbed wire :P

    I love happy endings, and good to see she inherited her mother's sense for story telling <3

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    1. She has tiny scars over her torso from where the tubes were placed; I told her (as a baby) we'd get matching tattoos to cover the scars. Now we'd just look like a constellation.

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  9. Give that sweet gal a special hug from her Uncle Haggis, okay? And keep a second one for yourself.

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  10. Heart-wrenching and amazing. I bet you have a hard time letter her go.

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  11. Super mom! And super kid! Holy wow, you guys have to be up for some kind of award!

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  12. You are an amazing lady. I had no idea before now what a massive struggle you'd been through. Now, I'm even more proud to call you my friend. And that is one spectacular daughter you've got. Give her a hug from way up north!

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  13. Wow! You have been through so much! You are my hero.

    Love,
    Selena

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  14. Awesome tale. I know we'd talked about spending so much time in Intensive Care that the maintenance crew just swept around you and you found yourself instructing noobs on what expect on the cafeteria menu. Had no idea it was this dramatic. Wait . . . this is a Graham girl we are talking about here . . . ::facepalm:: Nope, no run-of-the-mill crisis for her, it had to be done with style!

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