ICU: Seeing Her Tomorrow!!

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Tomorrow I will FINALLY get to see my girl. At long last Nathan and I are over this cold. I hear she is doing well, improving in small ways each day and I can’t wait to see her with my own eyes.

Phoebe trying to get some sleep with her Aunt DeDe watching over her.

Speech therapy came today and performed a swallow test which showed that she is not quite ready to swallow liquids on her own. They gave her some toys to chew on that will help her with that reflex. I had no idea she would need so much therapy to re-learn how to do things. I guess I expected that it took longer to lose those abilities. She will have to learn how to swallow, drink, eat, walk, use a fork, etc.

Tonight we took the boys out to eat, something I usually enjoy, but ever since Phoebe has been away from us I ache each time we have to request a table for five. She is so obviously missing from our family and that revelation sits like a heavy rock in my gut each time we go out somewhere without her. I see a little girl her age and I physically hurt, I pass by the little girl clothes in the store and turn my head. I’m weary of that empty feeling. Tired of it hounding me. I was thinking tonight that even if she was at dinner with us, she can’t swallow, can’t eat..can’t walk. I feel like I am losing her in increments.

I might be extra emotional tonight because I haven’t seen her since Friday and maybe I will feel like it’s all turning around when I see her in the morning, but right now I just miss her here with us, living a normal little girl kind of life. I miss being free from “what if’s” and having the luxury of a mind not consumed with medical details.

Tomorrow is our meeting with the ICU and Oncology doctors to talk about where Phoebe is in her healing process and where we need to go from here. This is not a chemotherapy meeting to discuss the details of her chemo treatment specifically, it is more to get everyone who is working with Phoebe on the same page. She has several teams of doctors involved in her case: Oncology, Endocrine, Infectious Disease and of course the ICU team, so it’s important that good communication takes place between all of those and everyone works together toward the same goal.

It looks like Phoebe could be moving back down to the Oncology floor as soon as this weekend if all goes well, and that would be wonderful! We love our ICU nurses and Phoebe has some very special ladies taking care of her right now who know her from before when she had her brain surgery in early January. We hate to leave the nurses, but we won’t miss the ICU floor. We love the HEMOC floor (Hematology/Oncology) because we have fridge space, comfy couches for sleeping and we can have food and drinks in our room. It’s just easier to feel at home there (and we have great nurses there too!).

Of course, ultimately we would love to have her at home for a few days and we are praying for that opportunity soon! We have gotten to know some of our neighbors this week and are really blessed to live in a great neighborhood with such wonderful people. People have been bringing food over, inviting the boys to play and stopping by just to chat. We feel very welcomed here.

I can’t wait to post pics tomorrow of Phoebe awake and playing. I am looking forward to seeing her really awake for the first time in weeks! Here’s to a wonderful day with my girl!

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.

13 responses »

  1. Oh the pain of separation is unbearable for a parent. Praying and praying that Phoebe will be able to relearn all that is needed quickly.

    Praying for good direction tomorrow and a treatment that will work and that Phoebe will be able to tolerate it.

    Praying and praying,
    <

  2. Thanks for the update. I finished my radiation treatments in my own cancer journey today and the bible verse that my smartphone popped up was quite fitting and I thought of your family too.

    1 Peter 5:10 — and after you have suffered a little while, the God of all grace, whom has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.

  3. Asking God to give you His patience and joyful perspective as you walk each step of recovery with your baby girl. I am also still praying for the “calm” in the storm only He can bring you…not based on circumstances or reports but a GIFT from him to your spirit. This gift of calm also gives you the joy in the moments that normally would not bring joy…..like ot, pt, dr meetings. I have to say that this kind of joy has given my heart excitement as my baby boy has started smiling with eyes shut tight. The first time he did it I cried but now I see the joy of my baby boy and who is and am able to better accept the visual impairments, absent focus at times and the latent milestones that our friends babies are meeting. He is my baby and is wonderful created in God’s image. Love you dear momma. Enjoy your day!

    LeAnn Sewell

  4. Amie my heart aches for you and your precious little girl! Your family and little girl stay in my prayers and thoughts everyday! You are such a strong beautiful woman and you inspire me to be a better mother and to take everyday with a blessing and every moment as a precious gift! I hope your visit with your angel relieves some of the pain your are carrying! You are in my prayers!

  5. Keep on keepin on, one step at a time..one step in front of the other… Know that prayers are going up each and every day. I’ve never met you, but I love you guys!

  6. I’m sure you are missing her. This photo of Pheobe is great. Wow! She looks so much better. Her hands really healed well. Yes, she needs to re-learn quite a lot, but……….look what the lord did. Praying still……..Anita

  7. I have been following your story for quite some time. I am a homeschooling mom of 6 and a school friend of Amy Rai. I am so touched by what you are experiencing since our lives have had similiar heartaches. Amazing how the Lord works in our pain. Thank you for your faithfulness. It is so encouraging.
    Our third child was our first girl. Her brothers Isaac and Josh were 3 and 2 when she came to us. She began to have seizures right away and ended up with brain surgery when she was 3. She is now 16 but mentally she operates at about 4. She is extremely happy, musical, and artistic. Learning to give her to the Lord from infancy prepared us to trust the Lord when her oldest beautiful 4yr old brother passed away in a car accident when she was 1years old (back in 1996). All your heartfelt cries and struggles were mine and the same Holy Spirit has been with me, comforting me all these years. Joshua age 18 is now in college, leads worship and our other 4 children born since then have been a great comfort to him and my husband and I. In fact our 14 yr old is a best friend to Josh who lost his #1 companion

    • Wow Lori. Thank you for commenting here. I marvel lately at the depth of suffering God allows in our lives, and am equally in awe of the grace that is sustaining me in the midst of it. We too, would love to be blessed with more children.

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