Monthly Archives: July 2013

Her Light Continues to Shine

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It’s been a good day. As I type, I’m watching Phoebe make Play-Dough cookies and say “BEEP! BEEP! BEEP!” as she mimics her med machine. I can’t believe this is the same girl I was trying to soothe at 6:30 this morning while she was hallucinating and crying and agitated. The antibiotics are working and she is feeling better by the hour as she recovers from the C-Diff infection in her bowels.

Monday afternoon her fever was 106 and wouldn’t come down, she hadn’t had a bowel movement in several days, and she had quit urinating. Her tummy blew up and was hard and she was miserable. Given her most recent diagnosis of tumor recurrence, one of the first presumptions was that the tumor on her spine had compressed the nerves that control her bladder/kidneys/bowels. And often, people will quit urinating when close to death and we were told that she was actively dying.

When she became inconsolable and then lethargic we feared the worst, but knew we had to get her bladder emptied and take some pressure off. This is what we did at the hospice center in East Texas. While there, it became apparent that she needed more assistance than was available at that moment, so we went on to Dallas. An obstruction was found in her bowel and a tube placed down into her stomach to remove air and fluid that had built up and give her some relief. During this time she had a couple of diapers that concerned me. We were familiar with c-diff but Phoebe had never had it.

They cultured her for C-Diff and it was positive, and it made itself quite apparent over the next several hours with trip after trip to the bathroom. The antibiotics were started and immediately her tummy deflated and got soft again. Poor baby. She has been sleeping a lot and yelling at her brother, Averic when she sleep-talks. This of course makes all of us laugh. Today, the swelling in her face and eyes went down considerably and she perked up several times and laughed and smiled and played.

What a relief.

Phoebe got to travel in an ambulance today. We had a consult with a radiation oncologist at the radiology clinic to discuss radiating the tumor on her spine to give her some relief if the tumor was pressing on her nerves and causing discomfort. Based on the location of the tumor, which is really more of a nodule at this point, he thinks her recent back pain has been due to the C-Diff infection rather than the tumor itself. We will evaluate again after the c-diff infection is cleared up.

There are some other options in the future for using radiation as a palliative measure for tumor induced pain she might encounter, but I don’t feel like discussing those tonight, or with the general public. We get a lot of well-meaning advice, but honestly in our position, advice can be offensive at times. It implies that we have not done enough research, or looked at other treatment options, or considered other ways to see Phoebe healed. None of this is true. We researched our hearts out for treatment options and locations, we made phone calls, yes, even to Burzynski, we juiced , we used supplements, we looked into Gerson, we made ourselves crazy trying to make the best decisions for Phoebe. So, please, do not share advice. The cancer road is littered with “what if’s” and we just can’t go there anymore.

It looks like we’ll be headed home tomorrow and trying to work out a relationship with hospice that will best meet Phoebe’s needs and the needs of our family. Our hope is for her to be at home as long as possible, manage her pain in a way that enables her to enjoy life, and try to do as many fun Phoebe-things as we can. I don’t have the time or energy for the details just yet, but God’s peace and presence are with us in a real way and it is awesome to behold. Phoebe is precious as ever and I am so thankful she is feeling better tonight. My prayer is that her birthday party will happen in grand fashion when she is feeling up to it.

Thank you to all of you who have been visiting, praying, sending balloons and cards, cleaning our house, watering our garden and taking care of our animals. And thank you to those who have taken our boys out for some fun to give them a break. Our friends, fellow YWAM’ers and church family are a lifeline for us and we love you all.

With gratitude, Amey, for all of us, especially the Phoebster

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Update

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Phoebe is doing okay. She had ups and downs todays, but the good thing is that we found out why her tummy hurts so much. She has something called C-Diff, an hospital infection in her bowels that causes horrible cramping and diarrhea. It is easily taken care of with antibiotics, but gives us an explanation for her fever and discomfort in many regards. She has slept quite a bit, but we also see moments of lucidity. Breathing in each moment..

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To Dallas

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How quickly things can turn. Phoebe has been riddled with fever all night. She got up to 104.8 last night and is at 103.8 right now. Her pain has stepped up a notch and since hospice is not set up yet, we are headed to Dallas for morphine. Please pray for my girl, she is miserable..

A Good Day

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The fever came last night, 102.8 and her cheeks flushed. We called Oncology, the usual procedure, and it hurt just a little when they said we could stay home. No need to come to the hospital for antibiotics.

The tumor makes her brain unable to regulate her body temperature. So we gave her pain meds and she lit up like the bright illuminated light that she is. She has had a great day. I mean really great. Family is surrounding us, and it’s an easy come-and-go thing. Pastors and friends from our church have brought laughter and counsel and fellowship and food. And we just follow Phoebes.

Each new face that comes through the door gets escorted to her bedroom where she hosts a tea party with her beads. Hide-An-Seek follows and if you’re lucky, she’ll paint your nails. She has never met a stranger, and the visitors are fun for her. We are being purposeful about living in the moment and not getting ahead of ourselves. Sometimes that is easier than others and when I snuggled her at nap-time my tears soaked her pillow.

I shrink at the thought of her pink and yellow bedroom empty.

It completely levels  me.

But for now I memorize the soft, downy feel of her new-grown hair and smell her sweet little arm. How is this real?

This week we will do Phoebe’s special things while she still feels pretty good. We will go to the zoo, have a ballerina dance session with some little girlfriends at a dance studio, and have her birthday party.

Phoebe turns 4 on August 16th and we will be celebrating her birthday early. Right now we are celebrating each moment with her.

Please pray for her little noggin and her back pain. It comes and goes, but is very obviously painful when it sneaks up on her.

Thank you for loving us,

Amey

No words….

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It is with great sadness that I post tonight. Phoebe’s cancer has come back. She has a new tumor growing in her brain at the original tumor site, and a new tumor growth on her spine. Because the tumor site in her brain is in such a sensitive/integral area, it would not be ethical to radiate. She has already had the most intense chemotherapy protocol available; more chemo will not knock out these new tumors. We can expect to have 2-8 more weeks with our precious girl, unless we witness a miracle. We are clinging to the hem of His garment…Thank you all for praying for our family. We love you.