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I was having so much fun with Phoebe last night that I forgot to post! I spent much of yesterday afternoon hunkered down with my boys in the bathtub with a matress over our heads since there were several tornadoes in the Dallas area so I was late in getting to the hospital. But I was delighted to find a happy, very energetic Phoebe upon my arrival. We made sticker pictures, played with play-doh, read stories and played Phoebe’s favorite game: scare Mommy. Scare Mommy goes something like this: Phoebe says “go to sleep Mom”, so I pretend to sleep, then she growls in a scruffy, deep voice; “RAWR!!” and I jump up, startled. This gets her goat every time. After the 18th time in a row, I’m kind of over it, but she loves it, so we play on.

At 2 am she woke me up for another play-doh session and again at 6 am. This is one Play-Doh lovin’girl. The chemo started last night and she is receiving more this evening. So far she has only been sick once, and she had such a great day I would have forgotten she was getting chemo if the nurse hadn’t reminded me when she started it. Of course, her immune system is still in-tact, and as it starts to fall she will be more tired.  That should happen in about 6-10 days.

Phoebe’s newest “thing” is that she has recently discovered how enjoyable it is to champion my “using the restroom skills” much in the same way I championed her when she was potty training before the cancer diagnosis. Each time I emerge from the bathroom in her hospital room, she says “Did you go potty Mom?” to which I reply “why yes, Phoebe, I did.” This is met with a “Yay!” or “good job Mom!”. Today however, Phoebe took it a step further and decided to announce my fine progress to each person who entered the room. The nurse came in with some meds and Phoebe said “My Mom go tee-tee on the potty.” Oh me. The Pulmonologist came in: “My Mom go tee-tee on the potty.” Fortunately, Phoebe’s speech isn’t very clear right now so I just acted like his guess was as good as mine when she told him that. She cracks me up.

Dad and the boys go out for some hot wing and fun!

She seems to be tolerating the chemotherapy much better than last time which is encouraging. Only 2 more days of infusions to go. Her sodium levels are doing great, and for the first time in about 4 weeks  Phoebe is sleeping lying down rather than sitting up. She still can’t be on her back because her lungs don’t respond well in that position, but she is sleeping tonight on her side and geez if that isn’t the biggest bright spot in my day. I was seriously elated when Nathan sent me a picture of her on her side tonight. These little victories feel so triumphant!

The biggest prayer need right now concerning Phoebe is that they would be able to detect why she seems to be having so much atrophy in her muscles. The PT said her movements are not consistent with neurological issues, but rather severe muscle weakness. Her strength was normal after she rebounded from sepsis, but has really gone downhill over the last 2 weeks.

Thank you for praying!

~Amey

Phoebe sleeps through a breathing treatment.

“RAWR!!”

19 responses »

  1. What an exciting update!! I was getting so anxious not hearing from you for so long but it sounds like it’s been an adventurous two days. Praying for Phoebe’s muscles, breathing and for a smooth chemo ride. What great photos of all the kiddos! Always thinking about you Phoebe and will continue fighting and praying for you Fair family:)! We talk about you often and share your story with so many others!! So much love from Colorado~the Williams family

  2. Great post and I love all the pictures! Hoping this go round will go much better than the last one. As always, Phoebe and all of you are in my prayers daily.

  3. Glad you guys did well with the tornadoes. I was praying. So thankful for the good news and praying for her muscles and this round of chemo. Hugs!

  4. Amey, Your girl sounds great! I’m so happy that you’ve been with her, while she is so ‘light’.

    I remember applause from my daughter (now almost 15)……and it brought a joyful memory to mind. I’m laughing at Phoebe’s cuteness.

    I was thinking, while Phoebe was intubated and inactive, she may have just burned up a lot of calories. Muscles atrophy…….but she wasn’t really eating, outside of NG tube feedings. Also,…..the lack of using her muscles in her legs…….may have just caused atrophy.

    I will pray for her ability to get her legs stronger.

    I have been going through my own epic battle with cancer. I have just one (1) drug left to try. I know that feeling of worry…………I will be leaving my two kids behind .

    I pray for you, Phoebe, your entire family to stay strong…..and never give up. There is always HOPE….FAITH……and eternal LOVE. Holy Thursday is tomorrow, good Friday……….and then the holiest day of all. Praise to our Lord. Prayers.

  5. We praise you oh God for each Victory Father. To us they r your Victories ….cont oh God to be with the Fair Family. Cont oh God to walk with Phoebe Father may she sense your presence. I ask the same for Nathan, Amey n the boys. Thank you for protection, provision, and the assurance that you are all around every moment of every day. We Praise your for your Grace, for what you did on the cross for us as we celebrate this week and each day of our lives. We Just Praise your Father for you are worthy of our praise.

  6. O wow… that picture of sheer delight in the bubbles… the prisms of light refracted and reflecting the glories of our Almighty One. Phoebe’s face is, it seems to me, the heart of God for us >> delight, awe, wonder, abandonment as she just rests her arms and is mesmerized at the colors…

    May we too be as Phoebe is in this picture… as a child, seeing the magnificent colors of the spheres, as they float and turn to reflect the light.

    She is always teaching me!

  7. Seeing little Pheobe smile at the wonder of bubbles, surrounded by the “armor” of the hospital,with all it’s monitors and sharp edges, touched my heart. How much our Lord wants us to be like little children– just like that. Seeing little bits of wonder in the world of woe and hard edges—thank you Phoebe for showing us. Lord strengthen her physical body, as you have her spirit.

  8. I am so glad to hear you all are fine through those tornadoes. That was pretty scary watching a tractor trailer fly through the air like a child throwing around a toy.

    Praying and praying for strength and complete health during this infusion. Praise God she is doing well!!

    Praying and praying,

  9. Thank you for keeping us updated! I loved reading this blog 🙂 She is such a cutie!! Dios les bendiga mucho!

  10. I can’t tell you how happy I was to read this post tonight! I was praying for you today & just asking God for a good day. I knew chemo days aren’t the best, but He is a good & faithful God. I just laughed when I read about Pheobe congratulating your “success” on the potty. My girts do that too. And when we are in a public bathroom all together my one daughter likes to hold my hand and say “I’ve got you Mommy!” (just in case I might fall!) And the other two are usually holding up my shirt in the back (making sure it doesn’t fall in like their dresses do when they are not careful! Oh 2 1/2 year olds! Love them to pieces!

    Always praying,
    Rebekah (triplet mom from Kalamazoo, MI)

  11. I am praying for God’s wisdom to be revealed for Phoebe’s muscle weakness. I had weak legs beginning about 2 months after chemo and I got very little help. I kept walking and kept praying and got some suggestions from an alternative doctor and slowly my strength began to return. Every day I pulled myself up the stairs, saying, They who wait upon the Lord shall renew their strength . . . And, it did come!

  12. I read these posts aloud to my husband, Luke. I could not get through this one due to severe fits of laughter when I got to the part about her cheering you on. What a sweet little girl. Just went and looked at your Dad’s site to go through the prayer list there. Just wanted you to know I am praying through out the day. I loved the photo of her with the bubbles. So joyous. Pleasant dreams.

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