Missing Phoebelicious

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What a crazy week it’s been. I haven’t seen Phoebe in seven days and I miss her so much. Fortunately, a dear family friend of ours had already loaned us a week at her time share here in East Texas, so last Sunday I loaded up my sick boys and came out.

Deacon started the week off pretty rough and Ben followed suit soon after. They have both been on antibiotics for several days and seem to be doing better although Ben still has some residual coughing. Averic had some symptoms but never really got it full-on, and I didn’t want to be a party pooper, so I got sick as well and am currently nursing my own cough and congestion.

I am so done with all this sickness and ready to be with my girl again, and I know Nathan is ready to be with all of us as well.

I can’t complain too much, because if you have to be sick, the piney woods of East TX and a nice swimming pool are a perfect setting. We coughed all night and slept in each morning and then headed to the pool for the afternoon where I got to do a lot of reading and relaxing. One of the perks of being a home schooling family is that when everyone else heads back to school,  they leave resorts and vacation spots empty. So, we enjoyed a very quiet pool with a couple of younger families with toddlers and another home educating family. It was very nice.

Nathan and I took endless pictures of the kids that were with each of us and sent them back and forth on our phones. Taking a family vacation without half the family was more than a little sad, but God provided for our needs and we at least got to “enjoy” our mandatory quarantine. It was also good that Phoebe was close to the hospital since she needed a transfusion and platelets.

Phoebe was released from the hospital tonight and her Grammy is there to help take care of her so Nathan can get some rest. My Mom stayed with her a couple of nights this week as well to help out. I can’t imagine doing this without the help of our family and friends and even the generosity of strangers. A kind stranger that we met at the time-share this week, paid for the boys and I to enjoy a day at the indoor water park there. I found the tickets pricey and didn’t want to spend the money, but God used this man to bless my boys and I.

And I guess the other most exciting news, is that we are looking at buying a home in East Texas! We have found a little house on some land and we are praying through the process of buying our first home. I will share more detail when I know more, and when I am feeling a little better, but we are very excited. Moving will mean a lot of things for our family; we will have to transfer Phoebe’s weekly therapies and get set up for blood labs at a local clinic who will work with Children’s Medical Center in Phoebe’s care. But it also means that we will be back at home with our church family, we will live 10 minutes from Nathan’s parents and we will be with our YWAM Ministry family. We have been feeling the need for that kind of support for some time, and at least in a few ways it will allow us to move on with our lives. The boys can be a part of the local home school group and we will have grandparents and friends in town to help out.

Moving away from the hospital is nerve-wracking in some ways, but we feel the Lord’s leading in this and that gives us peace. Please pray for us as we try to make this transition; first and foremost that everything would fall into place with the house if this is the one He wants for us, that our finances would come together and all of the details of Phoebe’s medical care would be taken care of with ease. It has been so difficult to make a BIG decision in the midst of all this but making it feels right.

We are all hoping to be together again by Monday if we are better.

Thank you all for praying for us these past several days, and here’s to everyone being healthy again soon!

~Amey

P.S. She took SIX steps BY HERSELF today!!

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’m so glad everyone is getting well and Phoebe is out of the hospital. And six steps! Weeeeee!!! I’ll be praying for continued healing for all and your potential new house!!! I wanna help you move so keep me posted! Love you all!!

  2. We will continue to pray!! You have been such an inspirations to me and my family! I have been celebrating steps with my 15 yr old son too!!!! I will have to share our story soon!!! Get well!!!

  3. Amey and Nathan, what a delight it is to find good things to cheer about, even in the middle of rough times. I’m so happy to hear that everyone is on the mend, from viruses and what have you. Soon, you’ll be together again and picking out paint colours for the bedrooms!! Oh, I know you don’t have the house yet…but I have no doubt God will provide.

    Amey, I have to tell you this. I live with chronic pain every day of my life and have for years. I’m dealing with Fibromyalgia, Myofascial Disorder, Chronic Pelvic Pain and I have Trigger Points throughout my body…and the list goes on. I’m on disability now and my entire life has changed. Last week, for whatever reason, my pain flared up from it’s normal 4/10 – the whole week was misery upon sickness upon pain upon misery. While I was feeling the worst of it, a lovely picture of Phoebe and her daddy came through my email and I looked at your little girl’s eyes and thought to myself, “Self…what are you whining about? There’s a little girl there who has gone through SO MUCH and you don’t see her whining, so get it together Self. Have your pity party and then move on”.

    So I did.

    Thanks to God and your little girl, I’m reminded that I’m not the only one who suffers, and that Our Heavenly Father is big enough to get us through the worst of times. I trust Him and I love Him even when I don’t see my prayers being answered. I never asked God to heal me, because I was afraid His answer would be No and I wasn’t sure I was strong enough to handle it. Then I realized, if I’m not strong enough, it’s because God wants me to rely on Him completely. So, that’s what I’m trying to do, and your family with all it’s ups and downs, is a constant source of inspiration.

    Hang in there. I continue to pray for all of you, and will be praying especially hard for the house deal to work out perfectly.

    Hugs,
    Pamela in Calgary, AB

  4. Great news, sweet Amey. So glad Phoebe is out of the hospital, and sorry you and the boys are fighting the bug. Praying for all you asked. You are so right about East Texas: if you have to go to ground for a few days, that is such a nice option!

  5. A message from Sunah, she wanted to call Phoebe so we decided to write a note instead!!

    Grin ;)8,??!&@; daubing cxfhikllmvxaqqwemhvcfesssertgbhjvxaaadnllzl z ksmzmxh
    Vdg qsisnzhhccfqr z

    Love your friend Sunah!

  6. Way to Go, PHOEBE!!! Proud of your 6 steps!! Glad everyone is feeling better! Take care. May God bless the gentleman who donated the tickets to the water park!
    Blessings,
    Peggy

  7. Oh Amey! Your family has been heavy on our hearts this past week and been prayed for so many times. We have also been praying for peace in the midst major decisions. So glad that God is meeting you in each area of your lives. We’ll keep praying that by tomorrow you all will be well enough to be reunited tomorrow! Rejoicing over Phoebe’s steps – exciting!! Love you all so much!

  8. That is awesome on Phoebe taking those steps!!!! I’m excited for you guys to have a place to call your own. You will feel so much better knowing it’s yours. I’m really happy for you guys. Love you guys lots!!!!!

  9. Just wanted to check in and tell you we’re thinking and praying for you all still! I just can’t imagine the strength and endurance it takes to go through this. We’re really looking forward to having you guys around here more and praying that everything will fall into place nicely. In Jesus name! Love you guys, Emily and Christian

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