Gratitude (Feb. 10th, 2012)


7:56 pm:

Phoebe had a good night with her Grammy last night. She has had a hard time getting comfortable in her bed with her sores and her tummy bloating so they increased her morphine drip last night and she slept peacefully. The morphine makes her face really itch so she receives Benadryl to help with that as well. She is being seen by the wound care people in the hospital and has a regimen we follow to keep her bottom protected until those sores heal up.

Phoebe Loves to Brush Her Teeth

Sodium is still all over the place with a high of 166 today. I have a hard time not getting all bent out of shape when I get the sodium reports. Nathan reminded me today that there’s nothing I can do about her sodium and that she has a whole endocrine team consulting about her situation around the clock. I do know this, but it’s hard for me not to react to the news each time that number climbs. Her high sodium keeps her tummy bloated and tight and makes her feel miserable. If high enough it could cause a stroke. I constantly have to give these things to God because I have several months of this ahead and can not live in this constant state of hyper-concern. Peace Lord..

The endocrine team is always commenting how tough a case Phoebe is to regulate because she is so sensitive to any change in her intake, ie: if she drinks an apple-juice box it can totally change their game. Most DI patients are not so prone to sodium swings with such a small intake, so Phoebe really throws a wrench in their DDAVP scheduling and dosage. So, they are constantly tweaking and changing things, IV fluids and the timing of her shots and the specific dosage. Grrrrr.

In spite of all this, Phoebe is managing to feel well enough to sit up quite a bit and play with her stacking blocks and put stickers in her sticker book. She also enjoys coloring or throwing her blocks into the bucket, catching bubbles and being read to. I got to see her do all of the above this afternoon and that was nice. She was having a good time and smiling even though her eyes were a little silly from all the morphine. She asked for some clothes and I put her jammies on her which she appreciated.

Her appetite is growing and she had some chicken and green beans and peas today, but we could not get her to drink. She NEEDS to drink and I’m not sure why she stopped since last night, but please pray for her to feel thirsty, she needs to help lower her sodium levels by drinking fluids. She is also receiving nutrition through her ng tube and seems to be tolerating that well so far. We are also avoiding salty foods for her.

We have received so many lovely toys, cards, baked goodies etc. and I recognize many of your names from Caring Bridge even though I don’t know you in real life, and we just want to say thank you for your thoughtfulness. I can not believe the stories I hear about the people who are praying for our little Phoebelicious from all over the world!

And thank you to those of you who have given financially towards Phoebe’s care and are helping us to be able to live here in Dallas near the hospital while she receives chemo. This is a huge blessing for us, and especially our boys so we don’t have to split up our family and commute. Phoebe has been in the hospital for forty days, since Jan 1st. It’s hard to believe she hasn’t been outside in forty days.

Tonight Nathan and I are BOTH home with the boys while Nathan’s parents are with Phoebe. We are enjoying an almost normal night with homemade cookies and America’s Funniest Home Videos. It feels good to laugh with the boys and unwind. Tomorrow I will be back at the hospital with the Phoebster and she will have her outpatient chemo IV drip in the evening.

Thank you all for traveling with us down this grace-filled, sometimes raw and too-real, road. Thank you for leaving your encouragement in Phoebe’s guest book. We read it daily, often cry, sometimes laugh or marvel at who is following Phoebe’s journey…

all our gratitude,  ~Amey

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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