Monthly Archives: September 2013

Sunday Morning

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Updating is sometimes hard when we are in the thick of things. I know many of you have followed Phoebe from the beginning and are very invested in her life as well as those who are just now joining the fight. I will do my best to update during hard times.

Phoebe is having a bit of a rough time. The pressure and pain in her “noggin,” as she calls it, has been growing in intensity. She has been sleeping quite a bit, listless and doesn’t feel well enough to even sit up. To top it all off, she has high fever, which I’m sure is making her feel worse.

It has been hard to discern between what is disease progression and what are the things that we can do something about. On a positive note, her nerve pain is getting a little better and she isn’t complaining about it as much.

-nathan

Quick Update

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Phoebe has been struggling quite a bit with neuropathy (nerve pain) in her feet and legs. It makes her pretty miserable at night. She has also had high fever over the past 48 hours which makes her feel crummy. Through it all she hasn’t lost her determination and will. She never ceases to amaze us.

-Nathan

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HAIR Today, Gone Tomorrow

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We have been enjoying the past few days and getting settled in back at home. It’s hard to believe we are where we are considering how certain it seemed that Phoebe was leaving us last week. It’s incredible the way she turned around and we are savoring this time.

Unfortunately, our little fuzzy-headed girl is bald again. She had an atypical (go figure) response to a Phase III trial drug that we administered for a week that has shown promise in slowing down tumor growth. It was supposed to be pretty benign regarding side-effects, but Phoebe’s counts plummeted and she contracted the stomach virus and then lost her hair. And she could care less. As a matter of fact, she had fun pulling it out and Nathan videoed the whole 10 minute long event. That girl. She’s unstoppable. Hair shmare.

It was an emotional week, but bringing her home again has been such a blessing. She is weepy at times and is having some pretty difficult neuropathy pain, but on the whole she is doing very well. We have decorated the house for fall, and started back up with school, and we have been enjoying the cool mornings on the front porch drinking coffee and enjoying each other. The small things are everything. Just waking up in a body that is healthy and can move, doing school, cleaning the house, lighting a pumpkin scented candle, having a cup of hot tea, watching the boys play tackle football in the yard, having all four kids under the roof, watching a rain storm roll in…this is this stuff of life, the goodness of the Lord in the land of the living.

-Amey
Phoebe Clowning Around

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She Shines On

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I loved watching her make the clowns laugh today. They come to entertain her and brighten her day and she in-turn brightens theirs. There she goes letting her light shine again. This girl has packed more living into her four years than I have into my 37. How does she do that? She makes everyone smile, this one.

The past week has been a roller coaster. We have been through the wringer emotionally as we watched her heart rate dip while she endlessly slept and anticipated her departure. And then as we witnessed that heart rate come up and settle out we saw her filled with life again and hope was renewed that we might get to take her home. She is still in the hospital, but making improvement. The goal is to wean her from her IV hydration and Potassium and get her back to taking her fluids through her ng tube again. The problem is, that she has diarrhea that won’t abate and kidneys that are damaged and dump large amounts of Potassium from her body.

So, we’re working on those things these next few days and hoping for one more chance to have our girl at home with us. She is weak and hasn’t left the bed but to use the restroom, but her spirit is strong and her funny bone is in full effect. The rest of us are doing well, if not a little tired. Family has stayed nearby and we have encamped around her. Children’s Medical Center Dallas is Phoebe’s 2nd home and there are plenty of people who love her there to pop in and make her day. It’s a joy to see how she has touched the hearts of so many involved in her care. Her nurses and doctors are top notch and we couldn’t ask for a better team of people to care for her.

We are hopeful and prayerful for a safe return home for Phoebelicious and to come back under her hospice team in East Texas who have been equally wonderful to us. Thank you for your prayers and support.

With gratitude, Amey

Phoebe plays peek-a-boo:

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