We Feel Your Love (Jan. 12, 2012)

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1:24 pm-High Soium, Hanging On: Phoebe’s sodium just jumped from 146 to 165. They will be giving her a shot in her muscle of something called ddavp. This is the hormone that she would be sent home on if her Diabetes Insipidus continues, which they are thinking might now be the case. I noticed that she was getting distant and cloudy which usually precedes a big jump or a drop in sodium. In some small way I am thankful it is just her sodium and not the actual brain issue that causes her to be cloudy. Surprisingly, I slept peacefully, but the pain was immediate upon waking. I realize that I cannot think about what life was like just a month or two ago. I cannot go back and live in those memories of a healthy Phoebe. It will kill me. I also realize that I cannot live in time a month from now when we are in the thick of chemotherapy.

Phoebe and the Boys last year(2011)

There is too much fear there, too much unknown. I must stay RIGHT HERE, today, with Phoebe, moment by moment, face each hurdle as it comes, and smile at her and be strong so that she feels at ease. She is sleeping now, in the way that she sleeps..with a lot of movement, and for about 30 or 45 minutes at a time. She is not in pain, just weak and sleepy. We are loving reading all of the e-mails and notes and messages you all are sending. Never think they are a bother. Several have mentioned that they don’t want to bother us, but we have yet to be bothered by all the messages, love and support we have received. Your words are a lifeline. A verse of scripture that you send, or a thought about our situation, an admonition, a word spoken in due time..these are all so meaningful to us. Thank you for your continued prayers and outpouring of love. We will meet with the Oncology team this afternoon to talk about a treatment plan for Phoebe. Will update more on that later. All our love..

5:59 pm-We Feel Your Love: I read the guest-book here and am bowled over with gratitude. So many of you have re-posted Phoebe’s story, contacted your prayer networks and walked each day of this journey with us in prayer.

Some of you have posted our girl on your blog, sent her story to friends who contacted us with their own cancer success stories to encourage us, and sent out newsletters asking for prayer. Many of you have sent gift baskets, hospital survival-kits and books and toys for our children, others have given us meal cards for the hospital or gift cards to go out to eat. Our needs are being supplied, and more. So thank you, all of you, for the ways you are reaching out to our family. We feel your love. We feel upheld.

All of these things have enabled us to focus our energy and attention on Phoebe and our boys. The Ronald McDonald house continues to be a huge blessing for our family and we rotate nights with the boys between Nathan and myself. Both of our Moms rotate nights with us as well so we can always have two people staying the night with Phoebe.

Today has been another day of managing sodium levels and Phoebe has been pretty cloudy most of the day because her sodium was very high. She received a little cell phone toy tonight that she enjoyed for some time while she chewed on some ice and that was nice. Nathan is not feeling well, with a sore throat and coughing, so he couldn’t be around Phoebe today at all which made him sad. Please pray that he would get well quickly and it wouldn’t pass to the kids.

We are still waiting to meet with our Oncologist again tonight to discuss the chemo plan. I was expecting that it would be some time this afternoon, but we will update as we know more. We know that chemo will start sooner rather than later, that the first 12 weeks will be incredibly harsh and aggressive, and that the whole process will most likely last 18 months.

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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