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Everyone loved her from the start. Here she was, all blonde and blue and fair, born in Mexico. “Ella parece una munequita” they said; “she looks like a little baby doll.” And they would ask to hold her, and I always said yes because that is the culture in Mexico; babies belong to everyone, they are for everyone to admire, touch, and love. And while they were fawning over her, I would proudly announce; “Ella es Tapatia” ; “She was born here, in Guadalajara.” (Essentially, she’s a Guadalajaran) And their eyes would light up and I would smile. Such sweet days.

We lived in a house in town with a banana tree in the yard at the foot of a mountain range that surrounded a lake. The boys were 7, 5 and 2 and then baby Phoebe. I home schooled 2nd grade and kindergarten that year and taught writing and composition 2 days a week at the Christian school on the missionary base. Nathan coordinated short term outreach teams, taught a Bible study at a local prison, and headed up the Homes of Hope home-building ministry.

After school, the boys would play in the water-hose and Phoebe and I would relax on a blanket under the trampoline with her dog Sadie. Getting her dressed each day felt like Christmas, finally a girl to gussy up! It was a precious time, and the last year we would have before our lives were touched by suffering.

Shortly after Phoebe turned 1, we moved back to Texas after 3 years in Mexico. We lived and worked at an agricultural training farm called World Hunger Relief, and hoped to return to Mexico with some real life experience in agricultural practices. It was a tough year. I miscarried a baby at 13 weeks and then miscarried again 3 months later. I spent so much time feeling ill with morning sickness and then feeling sad about the losses. I regret not paying more close attention to Phoebe…it was the last healthy year I would have with her. It’s hard to believe I had a daughter who could run and play and sleep in her own bed and who didn’t need meds or shots or an ng tube. It seems like a story I told myself.

On new years eve 2011, my face book status said this; “Ready to give 2011 a swift kick in the rear on its way out. Here’s to a better 2012.”

The next evening I was in the ER at Children’s Medical center Dallas with my mom and a very sick Phoebe waiting for CT scan results. I can close my eyes and see it so clearly still. Phoebe was wearing her dark blue jeans with the big ruffles on the cuffs, and the maroon shirt with the flower embroidery and ruffles at the wrists. She had on her Stride Rite Mary-Janes, the brown ones with the scuffs on the toes. I ran my fingers through her blonde curls while she slept next to me underneath the fluorescent lights.

I often think of the lady who performed the CT scan. She saw that baseball size tumor on her screen, and for just a moment she was the only one in the world who knew that life as we had known it was over. Phoebe held still and the lady gave her a teddy bear. I still have the teddy bear, but my daughter is gone. How can that be?

After that everything is a blur. “She has a mass on her brain”….”take her to the ICU”…”will need surgery”…”we’re so sorry”…

And there we were taking each moment as it came, not fully realizing the path we had started down.

We pulled in to a gas station today and Nathan hopped out to fill the tank. I leaned my head back on the seat and looked out the window. ‘EL TAPATIO RESTAURANT’ the sign in front of me read. “The Guadalajaran”. Nathan tapped on the window just then and pointed toward the sign. I nodded, knowingly. And at dinner tonight they accidently gave us 6 waters. At the end of the table was an empty chair with a little cup and straw. I loved it, and cringed inside all the same time.

Remembering my girl tonight…
Phoebe amey

Phoebe cute




The highs are really high and the lows are really low; Phoebe is being admitted back to the oncology floor today. Four fevers in a row, vomiting and lethargy are enough to know that something’s not right. We are feeling pretty sad that she is gone again as quick as she came.


Highs and Lows


I am so proud of this girl. When I think of what she has been through the last 3 months, I realize how incredible she has been at handling whatever has come her way. She has been in the hospital for so long now that she has learned the ropes. When the blood pressure cuff deflates after taking her blood pressure she now announces to the nurse “ALL DONE!” and points at her leg. When it’s diaper change time she likes to stuff the cotton balls in her diaper that they place there for her urine tests, and when the respiratory therapist comes to do her breathing treatment she no longer fights the mask, she just holds my hand and gets very still. I am so moved by her strength and her motivation.

She had a great time with her Daddy this morning, went to color in the playroom, rode her wagon down the hall and did lots of visiting. We had a small episode where her ddavp shot didn’t work and her sodium shot up when her body let go of all that fluid at once, so we scrambled to get her another shot and get some fluids on board. Managing Phoebe’s fluids is a full time job and somewhere along the line I have become very adept at how to manage Diabetes Insipidus, intake vs. output, specific gravity tests and how to detect dehydration. I have learned more medical terminology in the last 3 months than I ever knew before. I’m told cancer-kid parents become experts in their child’s specific type of cancer, chemo protocols and care. I have met parents in these halls who have been doing this for three years. The marathon.

I try to remind myself of the marathon when I’m too stressed to eat or when I’m skipping important things in a rush to get back to the hospital. This is our life, and it will be this way at least for a long season. I can’t rush through this rough patch and buckle down until it’s over, that’s no way to live for an extended period of time. I need discernment in how to pace myself. So, here’s to the marathon…

I don’t have any news about being released to go home. Phoebe’s sodium is of course still the issue, so we are still hoping to see those levels regulate without so much maintenance. Well, the Phoebster is asking for Backyardigans, so I’m off. We are so grateful for the improvements we are seeing in her!

Thank you all for praying, ~Amey

I am so proud o…