ICU: TV News Story (Feb. 29th, 2012)


News interview about Phoebe

10:45 am:

Tonight Nathan and I went through all of our family videos and got to see our sweet Phoebe when she was healthy.
There she was, July 4th weekend, slurping on an orange popsicle on her Mammaw’s front porch, rocking away on the rocking horse, “Happy 4th of July!” she said in a sing-song voice. There she was on the couch with Mommy growling in jest until I would wake up with a startle from my pretend nap, reducing her to a heap of giggles. There she was blowing out her birthday candles, blond pig-tails bobbing, smacking her lips for a bite of cake…that was just in August.

How I long to jump through that screen and scoop her up and kiss her sweet face and hold her in my arms without a tube, without a med-schedule, without a port, without all of this heavy ache that leaves me bone weary. I look at her face in the video and think “she didn’t have the tumor then”, or “that tumor was growing in her brain right then, and we had no idea.”

Love long, and drink deep these little ones entrusted to your care. Memorize the smell of their sweet baby scent, boy sweat, or freshly shampoo’d silken toddler hair. Trace that forehead with your finger while she sleeps, forget the “rules” and let her linger long in your bed, snuggled into your heart while she slumbers. These are the days.

Oh how I miss her. She’s only been asleep for a week and it feels like five.

And there’s all this waiting for neutrophils, and blood counts to climb back out of the ditch and get back in the fight. Waiting for cultures and tests to come back and waiting for Phoebe to rally back from this sepsis.

There’s a Phoebe shaped shadow in this house and I am spent with trying to remember how she fit with these boys and this family when she walked around and we didn’t notice or applaud the miracle it was. I should have looked harder, breathed more “thank you’s” to her Designer. I do that now.

The clothes hang, dusty in her closet. The purple sweater that saw her through fall, the one she wore the night we brought her to the ER, the flower girl dress from just September..and there’s still a clod of dirt on her tenni’s, dirt that she put there, while playing, while living, unaware. And my heart cries out, “Jesus, please…”

There is a poem by Pablo Neruda that I have always loved. It is about love lost, but several stanzas keep coming to my mind lately when I think about Phoebe. I think I must be grieving life “pre-cancer” with Phoebe, because these words resonate with me so much right now..

Tonight I can write the saddest  lines. To think that I do not have her. To feel that I have lost her. To hear the immense night, still more immense without her. And the  verse falls to the soul like dew to the pasture. What does it  matter that my love could not keep  her. The night is shattered and she is not with me. This is all. In the distance someone is singing. In the distance. My soul is not satisfied that it has lost her. My sight searches for her as though to go to her. My heart looks for  her, and she is not with me. The same night whitening the same  trees. We, of that time, are no longer the same.
I know I still have Phoebe, please don’t mistake my feeling of loss as one of giving up hope. I feel a deep sadness for the change in our family dynamic, for the absence of her little spirit in our home each day, for the loss of “life before cancer”. So, all this waiting continues for another day.

Please pray that Phoebe will pull through this sepsis, that her immune system will come roaring back in the next couple of days and begin to fight the infection raging in her body.

All our love and gratitude to you all, for staying with us and praying us through…

7:40 pm-Swollen Phoebe:

Today Phoebe is pretty swollen and to be honest, it was a shock when I first put my eyes on her this afternoon. The fluid in her body is immense, puffing her up and making her little feet and hands red and taut.

A CT scan today showed that her lungs are mostly collapsed minus a small portion of one lung. They intensified her ventilator setting and gave her more sedation. They had to go back up on her blood pressure meds as well which is disappointing. BUT, she has some neutraphils and we love neutraphils. She has a few white blood cells but needs MANY more in order to fight the sepsis.

Today I had to remind myself again and again that “we walk by FAITH and not by SIGHT”, that “faith is the substance of things hoped for, evidence of things unseen.” My eyes tell me something is very wrong with Phoebe. Seeing her attached to all of these lines, 3 different IV sites, swollen and still, her chest moving out rythmically with the ventilator, makes it difficult to see how she will recover. But, I walk by FAITH and not by what I see.

My heart knows very well that God can turn a thing around very quickly. He turned me around at age 21, took a dead girl and breathed life into her, in the matter of a day. He set my feet on a straight path. I didn’t do that. I didn’t pull myself up by my bootstraps and get my act together, He did that. We made a trade; I gave Him ashes, He gave me beauty and invited me to a life of adventure and scary surrender. I said yes, and it has cost me everything and blessed me tenfold. Such a Suitor is this Hound of Heaven, relentless in His pursuit. And all because LOVE compels Him.

Tonight, I think on this:  Romans 8:35-37

“Can anything ever separate us from Christ’s love? Does it mean He no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death? (As the Scriptures say, “For your sake we are killed every day; we are being slaughtered like sheep.”) No, despite all these things, overwhelming victory is ours through Christ, who loved us.”

He loves me, and He is good. His character is love and He has shown Himself true even when I have been faithless. I keep thinking of Job’s words to his wife, “shall we only expect blessing from God and not suffering?” No, everything good in my life is because of His mercy. With a thousand miracles behind me I can’t shake my fist at Him now. I must trust that He knows what He’s doing. And so I wait on.

I pray this night will hold a million more miracles in the secret places of Phoebe’s body, white blood cells bursting to life inside those veins and rushing to every site that needs repair. May it be so, Jesus.

About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th. A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle". We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms. We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated. Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope. Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

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