Drama Drama Drama

Standard

Phoebe is doing better today. It has been a tough couple of days trying to get her sodium to come back down to a reasonable level, but it seems that we are on the way now. Diabetes Insipidus is a tricky issue to have because all of her fluids have to be just right in order for her sodium to be level. The brain usually regulates your body fluid and sodium and the vast majority of people never have to think twice about it. That job is now completely controlled from the outside of Phoebe’s body and any little change in fluid intake or DDAVP dose sets the whole thing off. This will be MUCH easier to regulate when she is older and understands that she HAS to drink to keep her body okay. For now, she is not recognizing thirst and her fluids have to be given through her ng tube.

The other drama, (because we Fair’s are drama magnets) is that the day after Phoebe was rushed to the ER and put in ICU, Nathan’s Dad, Scott who was staying with us and helping out with the boys was taken to the ER at Southwestern hospital for severe abdominal pain and cold sweats. He was diagnosed with Diverticulitis and is still in-patient there for the rest of the week while he receives antibiotics and is put on a liquid diet for a short time. So, once again we have two family members in nearby hospitals. You can’t make this stuff up. It’s absolutely ridiculous.

In the meantime, I am trying to carve out any time I can to prepare for the conference on Saturday. I might have dark circles under my eyes and be slurring my speech, but I’ll be there! Life is messy.

The boys are doing well and Nathan is going out of his way with Phoebe duty this week so I can focus on this weekend. He has such a servant’s heart and I am so thankful for him. His Grandparents are also staying a couple of nights with us this week to sit with Phoebe during the day so we can get things done. I joked with Grandpa this morning that it’s usually the old people in the family that are doing hospital time, not the old people that are making rounds visiting all the younger folks.

We’re not sure when Phoebe will be released to come home. They are wanting to see her sodium levels find a good stable pattern before she leaves the hospital. We’re just taking it one day at a time around here. It’s a surreal life we live right now…

Thank you all for praying for us. And thank you to those who have sent us giftcards to go out to eat on dates, care packages for the kids (we have received some amazing care packages) as well as prayer cloths and blankets. And thank you to the Lawson family who hosted the “FROG’n For Phoebe” fundraiser…all of these gifts and efforts boost our spirits and I wish I had the time and energy to individually thank each and every one of you. Please know that we feel your love and support!

~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.

14 responses »

  1. Continuing to pray and pray for all of you. When it rains it pours. I’m glad to hear Phoebe is doing better, maybe now you will be able to get that home sodium level monitor.

    Praying for a quick recovery for Scott too.

    Blessings,
    <

  2. So happy to hear that Phoebe is doing better. PTL or that.

    Hope Scott has a quick recovery also.

    Be Blessed and know you remain in our prayers.

  3. Love the photo of Phoebe smiling up at her grandpa 🙂 Praying her and Scott will both be able to come home soon. I’ll be thinking of you on the weekend and I know you’ll do great….wish I could attend, but I’m in California. Hugs to you all!

  4. I am sure you have tried this but have you thought about trying different flavors of drinks or letting her eat her drinks through slushy type treats? Freeze lemonade, etc. Do you think it could be a texture or swallowing issue? There are thickeners you can try too.

  5. I pray for little Phoebe and the family daily. I follow your updates and can’t imagine your struggles. Stay strong in the Lord and we will continue to hold you up in prayer.

  6. Dear Amey- this is Kasha Lewis from Stephenville. I posted once before on the caring bridge site, but never here. I’m the one with 2 small babies that just lost my husband to a brain cancer. Just wanted our family to know that my kids and I still pray every night for little Phoebe. Also, a little over a month ago I received a ‘random’ email that just happened to NOT get caught in my spam folder. This email was advertising the conference for this weekend. I knew it had to be a God thing since I keep up with you daily and our stories are linked in simliar ways. So my sister and I signed up immediately and we look forward to hearing what God has laid on your heart.

    So many of the things you write bring back memories from not-too-long-ago. Like I said before, I have never been in your shoes with a sick child; but I have been the caregiver of someone with brain cancer/brain surgery – while caring for small babies at the same time. So in a very small way I can relate to some of the same things- and my heart goes out to you. Just wanted you to know that I think of you daily and am in constant prayer for your family.

    Kasha

  7. Hello,
    My name is Sarah. I met Steves mother, Sarah, in the Lindale walmart checkout line a few days ago. We chatted about why she had so many travel size things. She then told me about her granddaughter and how she had cancer. She was buying her some lipgloss and nailpolish. She then told me that her husband had just been admitted to the hospital too. I explained that I was an Intern at Teen Mania in Garden Valley and that I would be praying. She showed me a picture of Phoebe and gave me a bracelet that says ” Phoebe’s Prayer Warrior”, which I am currently wearing. She told me your website and that is how I made it here. I am actually in our prayer room here on campus right now. We have a prayer wall that interns pray over everyday. I wanted you to know I am adding Phoebes name to the wall. Know that all over Texas people are praying for Phoebe. I am inspired by your familys joy and faith in the Lord. Please let me know if there is anything more we can do. Or any other prayer requests. :]

    Serving with you,
    Sarah Dimovski

  8. Internet in Colombia and blessed with a Phoebe update!! So glad to see that picture of her smiling face and glad to know she is ok. Sounds like your hands are incredibly full again. Will pray for a calm weekend and a lovely conference for you to attend. Many love and prayers from your Colorado family:)

  9. Today, you are blessing women with your faith and your story. We love you all and are praying for you.

  10. Nathan and Amey, we are back in Bolivia with Margarita and Marilu and too this time. We are praying for Phoebe and you guys and Nathan’s dad too. Just looking at the picutes of all your kidos is a lift. I know you love them so much. Just knowing the love you have for them and seeing you fight so diligently for Phoebe is inspirational. God is with you in all of this. Terry, Kathy, Margarita and Marilu y los hermanos y hermanas en San Julian Bolivia, saludos!.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s