Monthly Archives: December 2012

Macy’s and Make-A-Wish

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I don’t have any pictures yet, but Macy’s and Make-A-Wish combined to give Phoebe is very special day yesterday. Macy’s is holding their annual fundraiser for Make-A-Wish and Phoebe got to be the face of it at the Tyler Macy’s store.

They showered her with lots of presents and we all enjoyed a ice cream party. Thank you so much to the Tyler Macy’s and Make-A-Wish for making Phoebe feel like a princess! Special thanks to Tony and Robin!

Thankful For The “Nothing”

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I suppose part of a “suffering” experience is feeling far away from God. Lately I have often thought about Jesus in the garden of Gethsemane, his petitioning his Father to “take this cup from me”, the feeling “forsaken” on the cross…and of Job when he cried out “If only I knew where He might be found!” I have identified so well, with these sentiments, as well as some of David’s Psalms these last several months.

Scarier than feeling pain, is feeling nothing, I think. For several weeks now I have felt just that. Maybe this “nothing” is God’s grace, a survival mode of sorts to be able to function in spite of heavy circumstance. Whatever it may be, it has been a strange place.

But I can already see the fruit. My empathy-meter has reached an all time high. I am slow to judge, and quick to identify with another’s pain. I am more forgiving of weakness in others as I have experienced it myself. And I “see” with new eyes, with His eyes, all of the hurt around me.

It has been a hard pill to swallow, all this coming to terms with things I never thought I would have to consider…all this sharing of Phoebe and realizing that she’s really God’s, I mean really, really His. And I have scraped bottom more than once. I have completely lost my marbles in a tiny ER room and found myself incapable of stopping the tears despite embarrassment. I have had crazy visions of pulling all the tubes and wires off my daughter and just making a run for it to God knows where.

I have had words from the Lord that left me soaring for days and moments when I just know that everything is going to be okay. I have laughed so hard I cried at Phoebe’s silly talk in the wee small hours and I have let those tears become sadness in the very next moment because I can’t bear the thought of losing her.

It’s been enough to make a girl feel like she’s a few french fries short of a Happy Meal. And then with an undetectable, subtle shift, something breaks open. A small crack of light peeks through the nothing and I can feel a little bit of joy. I see the purpose in the nothing for the first time. It hasn’t all been for naught. And that’s as far I can see right now, but it’s something, and it feels a little bit like hope.

One of my favorite online devotionals is http://www.adisciplesnotebook.com
and this is what I found there tonight;
God’s trusting child may say in times of trouble:

FIRST: He brought me here; it is by His will I am in this strait place: in that will I rest.

NEXT: He will keep me here in His love, and give me grace in this trial to behave as His child.

THEN: He will make the trial a blessing, teaching me the lessons He intends me to learn, and working in me the grace He means to bestow.

LAST: In His good time He can bring me out again—how and when He knows.

Say: I am here—
(1) By God’s appointment.
(2) In His keeping.
(3) Under His training.
(4) For His time.
Andrew Murray (1828-1917)
~~~
And call upon me in the day of trouble; I will deliver you; and you shall glorify me.

Psalm 50:15 (ESV)
Grateful, Amey

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A Little Bit About Phoebe’s Mom

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Just wanted to let you all know Phoebe was stable enough to come home tonight. Amey will write an update after she gets some good hibernating done.

It’s often said about the matriarch of a family how she holds everything together and is someone who everyone can lean on and count on. The rock that holds the family together.

I have never really thought about Amy like that before. I have always thought she was an amazing mom and a great wife, but over the last couple days I have seen her in a different light. This experience has transformed us all in so many ways. But I feel like I have been watching Amey change from a young mother to something so much more.

It’s hard to explain, except to say that when it was just me and the boys here this week, there was a palpable sense that our nucleus was missing. Her foundation in the Lord and the truth of what that means practically in daily life, while going through hardship, has been an encouragement to me and so many others. Warts, pimples and all, she has not been afraid to share her faith, struggles and fears with the world.

And let me tell you, it’s not easy putting yourself out there for the general public to see your struggles and fears, your imperfections. I certainly don’t do it. I prefer to remain silent during the hard times.

Beyond theology, doctrine and saying or doing the right things, Amey has embodied the reality of what Christ manifest in our lives looks like. It’s not always perfect and it’s not always pretty, but at its root is love, peace, joy and most of all brings glory to God.

-Nathan

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We’re Still Here

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We’re still here…Phoebe is still having severe diarhea, tummy pain and her bottom hurts quite a bit. We are giving her Ativan, Benadryl (to stop the itching) and Morphine to alleviate her discomfort but there is no real concensus as to what is causing these issues.

The Potassium seems like the obvious culprit to me, but I am told it shouldn’t cause this to this degree. The diarhea of course is messing with her fluid balance and sodium and electrolyte levels, so we are chasing sodiums and trying to keep her hydrated as best we can.

Her ANC is coming up slowly, and that’s good because it means that we should start to see some healing and recovery and hopefully her bowel issues will improve. Thank you for praying for our girl…

-Amey

Phoebe snuggles with her Grammy

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Latest Update

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Phoebe is still having a rough go in the hospital. Yesterday there was a mix-up in her orders and her Hydrocortisone was dicontinued. Well, Phoebe is cortisol dependent and can not live without it, so by yesterday afternoon she was floppy, distant and fading. Her heart rate was accelerated and her sodium was very high and thank God they finally figured it out before she crashed. Needless to say it was a rough day.

Her body is still not absorbing Potassium which is most likely a kidney issue, and that could continue for weeks, or months, or years or just suddenly correct itself. I constantly have to remind myself that people can live with potassium supplements but they can not live with AT/RT. People can live with Diabetes Insipidus but they can not live with AT/RT…etc.etc. Chemotherapy is a double edged sword.

Right now she is receiving her second blood transfusion and yesterday she received platelets. Her ANC is 40 today which is still pretty low, but at least on the upswing. We will be here for a few more days until her counts recover and she is in better shape. Thank you all for continuing to pray.

~Amey

Advanced Neutraphil Count

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Phoebe was admited to the hospital today. She spiked a fever, had an elevated heart rate, and her labs showed that her ANC (Advanced Neutraphil Count) was nearly zero and her hemoglobin was at a 7. She received a blood transfusion and is beginning to perk up now and feel hungry. Thank you for praying today. She is not out of the woods yet, as we are waiting on blood cultures to test for infection since her fever maintained itself rather than quickly coming and going as do her central fevers. I will post more when we know more.

~ Amey

Phoebe’s Feelin’ Puny

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Taking Phoebe in to the hospital this morning for severe stomach pain and quick, shallow breathing. Please pray that we get answers. Often times she has pain that never really gets addressed becaused there is no obvious reason for what’s causing it.

She has been on a steady dose of Ativan the past few days to ease her tummy, but I want to see her get some serious relief.

Thank you, Amey

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