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..

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..

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

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.

Phoebe falls asleep during her pre-surgical work up this morning (for her MRI tomorrow)

The long anticipated video of Phoebe’s life from birth in Meixco to the end of Chemo treatment a couple of months ago. We praise God and thank all of you for where we are today! What a difference…

Youtube:

Click link below to watch on Vimeo:
Phoebe’s Video on Vimeo

Asking for prayers for Phoebe; she is having headaches that won’t abate with Tylenol and that makes me nervous of course. Her labs checked out fine this morning, and I was really hoping that the pain would be easily pinpointed with an electrolyte issue. Unfortunately the headaches are unexplained. Her oncologist said no need to worry yet since there are a great many things that cause headaches, but that doesn’t offer much solace to a brain tumor parent. Next MRI is due August 5th, but will be moved up if we don’t see improvement.

On the way home from Florida, the kids have nothing left!

This week we are in Florida attending a family camp for kids who have cancer. It has been an amazing experience, we have been able to sit down with lots of Other families that know exactly what we’re going through.

They have pampered us and gone through extreme measures to make sure we feel comfortable. Our meals are cooked for us, our clothes are washed, beds are made, and activities planned for the kids and adults.

Everyone is having a great time!