Good Weekend!

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We got brave and took Phoebe to our annual YWAM Tyler staff conference at a hotel nearby this past weekend. It was the first time since her diagnosis that she has spent a night away from either our house or the hospital. She loved being in a new place with new people and looking at all the waterfalls in the hotel lobby. Nathan’s Mom went with us and stayed with Phoebe and Deacon so that we could attend a couple of sesssions of the conference. Ben and Averic got to do VBS and swim with all their old buddies which was just over-the-top fun for them. It was a great time for everyone.

It was so nice to be surrounded once again by those who know and love our family and to see just how many people are really invested in praying for Phoebe. We couldn’t ask to be a part of a better ministry family, they blessed our socks off!

Phoebe had a clinic visit today to have labs drawn and everything is looking good. She does have a little cold and some coughing and sniffles, but her blood counts are over 9,000 now so her immune system should kick this bug before too long. Benjamin came with me today to clinic and brought his school work. He is growing up so much and is such a big help to me these days. He carried bags and helped me with her feeding pump and entertained Phoebe while we waited for her labs and somehow managed to complete his school work in between all of that. I was so thankful to have a him along today.

On Friday Deacon has another follow up burn appointment. His burns are looking so good and the two little spots that were not quite healed last week look great! I expect that after Friday he will be done with bandages and that will be nice. We will have to keep him out of the sun for the rest of the summer (oh me) and slathered up with sunscreen any time he might be exposed. The new skin is susceptible to bad burns so we have to be extra careful.

On Monday Phoebe will start her next round of chemo and we might possibly be doing it out-patient for the first time if we can get her home-health physical therapy set up. If not, we will go in-patient so she can continue to receive her occupational and physical therapy each day. We are also tweaking her formula feeds through the ng tube and trying to work on cutting back on the formula so she will desire more table food and drinks. This can be tricky with her Diabetes Insipidus because it messes with her fluid intake, but I would love to ditch that little black backpack she is always attached to any day! Having my girl tethered to something continuously is not my favorite. So, here’s to eating and walking! It’s liek starting over again with all of these abilities she once had. Sometimes it’s hard for me to imagine that she use to climb up into her booster seat and sit down and eat a meal with us. I pray for those days again. I might explode with joy when I see her take her “second” first-steps…I can’t wait for that day!

The night has gotten away from me and I’m tired, but tomorrow I want to talk about Ziglar Women, a conference that I am (God-willing) going to be sharing at in a couple of weeks. Writing that here will remind me to talk about it! I can hardly have a cohesive thought these days so I have to write myself sticky notes to remind me to do things like laundry! So, I am reminding me: tomorrow share about Ziglar Women!

G’night

~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.

9 responses »

  1. What a great weekend for all of you and you so deserved it. I will be thinking and praying for Phoebe that her counts continues to rise.

    The Ziglar Women conference sounds amazing. Isn’t it wonderful to be on the ground floor of
    something so empowering for Women of God. I remember when Women in Faith first started. Best wishes to you all on this venture.

    Hugs, Marilyn

  2. Love the photos of your precious four!!! Amazing!!! So thankful to hear you got away and had some “normal” time as a family with the family of God who loves you all so much. Praising God for all that He has done in protecting Phoebe through the first 12 weeks. Have a wonderful week home and we will continue to pray without ceasing for your precious family!!! We love you from Va. 🙂
    Nadya for all the Blow family

  3. That’s awesome! I am so happy to hear such great news! Your family is being blessed over and over again. I am excited thinking about the day that Phoebe does all those things that we take for granted in the early childhood stages. The 2nd first steps will bring you joy, and pride, and show Phoebe that GOD is with her..and with all of you…and with GOD she can do ANYTHING but fail! What an inspiration YOU are… Passing this along to let everyone know that PRAYERS WORK..and your family is proof of that! God bless, and keep you all…and give you another awesome weekend…

  4. Hello Fair Family!!! It is great to hear about your wonderful weekend! We continue to pray for your family, and we know that each day will bring continued blessings of healing for all of you. Can’t wait to hear about the conference. I am trying to get to Dallas to be at the conference….Nicole and I are hoping it works out that I can. Would love to meet you!!!! Hugs and prayers from south Louisiana!!!!

  5. Wonderful news! I am so glad you all had a great weekend and there is a chance to do chemo at home.
    What a blessing Benjamin is! A man of God in training helping mom and sister. God is really blessing you.

    Always praying.

  6. Praise God! I so wanted to come to th to go to the Lady Zieglers conf, and meet you,i have met you wonderful Father at an event, I have been praying for your family. I am leavin to go to FL that day tho,will so miss out,Im sure it will be such a Huge Blessing to hear you speak. Praying everything goes well and you are able to attend the event.

    God Bless,
    Tracey

  7. The drama becomes addictive to me. So glad for the (relatively)mundane news about going to conferences, staying up with homeschool, and possible at-home care. You guys get all the rest, down-time and sunsets you can. You’ve earned them. Oh, I know that’s not a very Evangelical thing to say, but, as Stuart Smalley used to say, “Gosh darn it, (you’re) worth it!” God thinks so.

  8. So many and incredible blessings in this post. I will be at the women’s conference and hope to cross paths with you so I can hug your neck.
    Continuously praying for the Fair Family,
    Marsha Perry and family

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