A little update on life with some pictures too…

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I am 6 months into my pregnancy. Baby Fair #5 is due end of Sept./beginning of October. This time last year we were returning from our family beach trip to Florida with Lighthouse, a ministry to pediatric cancer families. Phoebe was feeling great and life without chemo felt amazing. In just a few weeks I would notice that she had quit climbing up on the kitchen chair and seemed to weaker; we would find out on July 26, 2013 that the original tumor had returned and was already half it’s original size with new tumor metastasis in her spine. I can’t believe she’s been gone almost 9 months. We have learned new coping skills through our grief, but there is always pain just beneath the surface. I’m told it can feel raw for years and that the 2nd year is tougher than the first. I try not to dwell on that thought because I can’t fathom it. In the midst of pain, life continues, and beauty is still beauty and we are still able to recognize it. Benjamin and Averic both had birthdays this month turning 12 and 10; their first birthdays without Phoebe. We had a little party out at the lake and they had a blast. Last month also found us in California for the memorial service for Nathan’s grandmother, Marlene. Phoebe has no shortage of great-grandparents with her..I get jealous each time someone we love leaves this earth for Heaven. Our trip home included a stop at the Grand Canyon and a train ride complete with cowboys and outlaws.

Unfortunately some sad news has also made it’s way into our lives; my Dad was diagnosed with lung cancer and begins chemotherapy tomorrow. He tells me Phoebe is his role-model and her Beads of Courage now hang on his IV pole.

Also, my midwife passed away suddenly and unexpectedly from stroke this past week. This was of course shocking and sad. It seems that suffering is so pervasive right now and I don’t know how to process all of it to be quite honest. I have been reading and re-reading Romans 8:18-25 these past two weeks and trying to focus my heart on this passage:

“For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. For the earnest expectation of the creation eagerly waits for the revealing of the sons of God. For the creation was subjected to futility, not willingly, but because of Him who subjected it in hope; because the creation itself also will be delivered from the bondage of corruption into the glorious liberty of the children of God. For we know that the whole creation groans and labors with birth pangs together until now. Not only that, but we also who have the first fruits of the Spirit, even we ourselves groan within ourselves, eagerly waiting for the adoption, the redemption of our body. For we are saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees? But if we hope for what we do not see, we eagerly wait for it with perseverance.”

~Praying for perseverance~ Amey

amey prego

boys at party

chickens 2

deacon with veggies

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.

12 responses »

  1. Thank you for the update. Was wondering how you were. We know your grief, I lost a stepson and my husband a son at age 21. We were blessed to have him as long as we did. It was almost 15 years before my husband could talk about him. I was blessed with his 3 brothers and I have a daughter. Everyone grieves differently, thanks again for allowing your precious Angel into our life. I know my grandmother will find Phobe and love her with your family! Bet she is being Spoiled!!

  2. Hi Amey,

    As always thank you so much for allowing me to walk this path with you. Sometime I feel your thoughts carry me on my road of grief and at other times I hope my prayers and words help encourage and carry you.

    I have no words for you with all the extra grief thrust upon you right now, I wish I did. I do know that God always listens and He always answers our prayers….I’ve learned that no, and not right now, are as much of an answer to prayer as a yes is!

    I also know that every tear we cry He captures and puts in a container, and somehow that thought always comforts me when the tears are rolling faster down my cheeks than my brain can come up with words for prayer…it is then that I know the comforter left for me and for you is groaning and praying for us when we just can’t…..

    I hold you before the throne of our Savior and ask for extra measures of …peace….strength. and the return of more joy and contentment in your daily life as you head into the last trimester with the new stress of finding a midwife and supporting your dad. Know the Lord lays you on my heart when you are in a place that needs extra prayer.

    Love, hugs, and prayers,
    your sister in Christ and grief,
    Sandra.

  3. So good to have news of your family. Think of you and pray for you and hope you continue to have joy in the midst of your sorrows. So much has passed and so much to come…

    Sent from my iPad

  4. Thanks for the update on your family. You all are always in my thoughts and prayers. I’m so sorry to hear about your dad’s cancer, but what a role model he has in Phoebe! (as I do, too!) Prayers continue for you and your family. You look so cute, by the way!!

  5. So great to see you and the family. I know that there are hard days… One of my sons has been gone almost 19 years… almost as long as he was on this earth. The other son has been gone almost 11 years! So sorry to hear about your dad, but I know that Phoebe is his role model…and there couldn’t be a better one! He will face it with the same fighting spirit that she did! God bless and keep you all. Have a great 4th of July… just like the one that Phoebe is going to have in Heaven!

  6. I am so glad you updated on your family. I love reading your posts. I also love looking at your pics of your chickens. It reminds me of Psalm 91:4…under His wing you will find refuge.
    Thank you for sharing.

  7. Once again I marvel at your courage. And sit with you in the ashes. There is an old phrase about our brief earthly lives, “this vale of tears.” The older I get, the more that resonates. Which makes it even more amazing that the older I get, the deeper grows my reverence for God. He really is The Almighty.

  8. Amey, you amaze me as usual. Your pain always gives you an opportunity to witness. Your family seems to be healing as God and Phoebe would want it to be. God never intended us to remain here in our temporary state, once you receive Him you have your eternity, or Christ, as promised. Your father will have to go through his suffering here but remember that if he has already chosen His Savior then he already has eternity. As a Christian our sufferings are gain, not losses, and we will never perish. Hope and faith in God and Christ are what we hold on to. God is not a liar and as Phoebe wound say, “God is not a meanie!!!!!!!!” He has blest you with another child to spread His word. How glorious is that!!!!

  9. My prayers will echo yours for perseverance for you and all your family. May Jesus heal your father and give you all peace as he goes through his treatment. May His Word continue to sustain you as you mourn your new losses and remember this time last summer with Phoebe. You and Baby look beautiful! Thank you for writing and sharing the cute photos. I keep you close in prayer. Love and hugs.

  10. I am soooo glad for your update . I am sad too at this time I lost a younger brother in June some somewhere around the 11th . But did not find out about it until last Thur . Had been trying to get hold of him since Jan. I can not wait to see you new little one. Prayers to you all Lee

    • HI AMY, THANK YOU FOR THE UPDATE OF WHAT IS GOING ON IN YOUR LIFE. GOOD TO SEE YOUR BOYS AS WELL AS YOU. KEEPING YOU AND YOUR FAMILY IN MY DAILY PRAYERS. THANK YOU ALSO FOR SHARING YOUR THOUGHTS AND FEELINGS ABOUT PHOEBE – I KNOW SHE WILL ALWAYS BE IN YOUR HEART . THINK OF YOU AND PHOEBE OFTEN. SENDING MY LOVE AND HAVE A BLESSED AND BEAUTIUL DAY.
      WITH LOVE, SUZANNE

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