December 31, 2011

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The night before Phoebe’s diagnosis, Nathan and I went out to celebrate our eleven year anniversary. We had been looking for weeks on Craigslist for a bunkbed with drawers for the boys and finally located one in Longview, about 40 minutes from Lindale. Our idea of a romantic evening out, was to buy some used furniture and hit up a hole-in-the-wall Mexican restaurant on the way home. Fancy, I know.

When we arrived at the seller’s house to pick up the bunkbeds we were met by a married couple our age who had three boys. She looked like the artsy type, with cropped hair and a black beret and he was a good ol’  boy with a thick East Texas accent. I made small talk with the lady while Nathan and her husband disassembled the bunkbed and before too long we were talking about the “Make-A-Wish” vacation they just returned from as a family. She said they went to Disney World, the opportunity of a lifetime, something they could never afford otherwise, but since her son had a life-threatening disease he qualified for this trip. She said he has seizures..constantly. He sleeps with her at night and has a device in his chest that detects seizures. When he has one, she runs this “wand” over the device and it stops the seizure. I was astounded.

I told her I couldn’t imagine having a child so sick, and that it must be difficult on the family. Then she told me she had cancer. Poor Mama. Her hair is not cropped by choice, rather it is growing back after chemo. Now she takes oral chemo pills. I couldn’t believe her misfortune. How could she take care of her boy who needed so much while she needed so much herself? She seemed so strong, and happy. I commented on her situation and mentioned that the hardest thing we had ever had to deal with healthwise is a blood disorder our Benjamin has that makes him very anemic. She said I should apply for a Make-A-Wish, wish. I said, (and these words have replayed in my mind a thousand times since that night) “Oh, I don’t have a child sick enough for THAT, we have been very fortunate in that regard.”

Exactly twenty four hours later, I was cradling Phoebe’s head in my lap in the emergency room in Dallas having just been told she had a large mass on her brain. I must have been in shock because I didn’t quite grasp the magnitude of the situation until a neurosurgeon came in at 1 am to show us her CT scan. He had obviously been called at home, roused from sleep, to come take a look at the baseball sized tumor in her head and decide if she needed emergency surgery. And then I let myself feel it.

And I thought of her. The cancer Mom to the boy with seizures and how the world can turn upside in a matter of hours. I thought about myself, standing in her yard in the dark telling her how fortunate I was. I wanted to go back, be there again, have the story play out differently. That was the end of whoever I was before. Now I am a cancer Mom.

I think of her often and how different my conversation would be with her now. Maybe one day I will get that opportunity. Tonight my boys will sleep in the bunkbed of the boy who has seizures. And Phoebe qualifies for a wish.

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.

11 responses »

  1. I have been following your blog for about a month. I never knew quite how to leave a comment however I have wanted to so often. I am so astounded by the strength and love of your family. I think of your sweet Phoebe daily and cry out to our God for mercy on her. I pray that He provides you all with the strength to get through all of these challenges. My heart aches for everything that your family is going through. Phoebe is such a beautiful gift and I know you treasure her every day, as you do your boys. Please know that others adore your family as well and that we will continue to send love and strength and prayers.

  2. Wow Amy! I have no words to express the sadness I feel… What a powerful and moving update. As an ER nurse of many years I have witnessed many times people’s lives change in an instant. I have sat with families and comforted them after giving them the worst news they never wanted to hear.. My heart breaks for you and your family. I will continue to pray for your daughter and your family. And for the mother in your story and her son. May the Lord bless all of you with healing.

  3. Hi Amey,
    Life is so precious and can change in an instant. A crisis in the family can cause one to grow up very quickly. Praying for you Amey, the intensity of this situation can be overwhelming. I am so thankful you have Jesus as your comfort.

    Praying and praying often,
    <

  4. Once again, I get choked up and my eyes tear up. I share your grief and share your joys, Amey. We have so many reminders to pray throughout the day and send our love to you always.
    Love you,
    Lu

  5. Amey, your story is too uncanny. A few weeks before we found Anna had a tumor, I was standing in the back of our church with her when I struck up a conversation with another Dad. He began telling me about his daughter that he was holding. She had been diagnosed with cystic fibrosis. He went on to tell me, that with today’s medicine many kids live into their 30s with the disease, but otherwise it is fatal. He told me about the various treatments they had to give his daughter each day. I could not fathom what he was going through, despite expressing my concern over his situation. Now that my daughter has passed and his daughter is still alive, the tables have turned. I’m sure the conversation would have gone much differently if he knew such a small percentage of AT/RT kids survive to 5 years. It’s so sad what so many kids have to silently struggle through.

  6. Amey – You do not know me, but we are sisters in Christ. My oldest son is with YWAM in South Africa and when I happened upon your blog one day, I felt an instant bond with you. I pray for Phoebe and your family daily, and I admire your strength. My youngest son recently spent six weeks in the hospital after a car accident and I can relate to how one’s world can change so quickly and unexpectedly. Trust in the Lord completely, and trust that He gives you a mom’s instinct when something is not right with your baby. Be her strongest advocate and do not worry about the doctors’ feeling as if you are second-guessing them. It is your job as Phoebe’s mama. God bless your family.

    Barbara

  7. My guess is that the bunk bed Mommy felt a connection with your warm and caring spirit- you both had many things in common pre tumor. I’ll bet she will gain strength from your blog!!

  8. About four years ago I was told by one of our therapists and meanwhile a very good friend of the family, that God is looking for parents to give special children to special familys. She said, God is choosing by heart and that he prepares parents for it.
    While I was pregnant with Lulu I watched by incident (while switching on TV) a report about deaf born children and what opportunities they do have. I never thought this would regard our family one day. None in our families knew about the genetic defect and my husband and me have it both in our Gens.
    Amy you wrote that you thought so many times back to this night. You know that God has the big plan and he has much more in store. While dedicating him your life he has opened the door to new opportunities and so many new and directed relationships. Reading this Blog from the very beginning I think it’s gonna be a Wild, exciting trip God has for you and the family.
    But :
    Jesus has risen! He had overcome death and closed the Gap so we can come anytime before the Throne of the Father! Happy and blessed Eastern to your family and the Blog Community!
    May you all rejoice in Jesus victory and celebrate his Glory!
    Chris

  9. What an amazingly poignant story this was! GOD brings people to us so that we know we are not alone. This other cancer mom may very well be reading Phoebe’s story and knowing that she is not alone. GOD’s plans seldom make sense to us but we just have to have faith that things will turn out right. I agree with Chris, above, who said that GOD looks for special parents to raise very special children. HE has certainly found that in you and Nathan! No matter what the future holds, you know in your heart that GOD knew you both were strong enough to handle this and that your lives will be a shining star for others to follow on their path to HIM. What a tremendous blessing that is! And, precious Phoebe will always be in HIS loving arms.

  10. She’s looking beautiful and full of LIFE! Tell your sweet Nathan, not to lose that sparkle in his eye. He looks exhausted. I do pray for y’all and will now focus on STRENGTH! His plans are for y’all to PROSPER!!!! ❤

  11. I read this last night before going to bed. I’m praying for you guys and this difficult paradigm shift in life. I know God is going to use this for His glory in ways you could never fathom. You are light in a very dark world. I know He is your strength and grace in places you have never had to experience and He is carrying you guys! I love you Dearly!

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