An Evening at The Fair Home Hospital

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Phoebe came home today after her final round of induction phase chemo which makes our Fair home hospital complete.

The new schedule began shortly after Phoebe arrived home when it became time for the bedtime routine. I have to share this here, because it will give you a glimpse of how our bedtime routine has changed in the last few months.

Phoebe’s bed has to be outfitted with a Chux pad and cover blanket in case we have a night time accident. Her nebulizer mask has to be changed out and 6 some-odd pillows must be arranged just so.

After I got Phoebe’s bed set up tonight, I gave Deacon his Loritab knowing that in half an hour it would be time for his uncomfortable washing and wound-dressing change. Nathan got Deacon in the tub for his “half-bath” and then placed him on a towel on the bathroom counter so I could wash his hair, gently clean his neck and face burns and apply his ointment. After this, I took off his bandages and cleaned the burns on his abdomen that are exposed. Deacon does not appreciate all this attention, but the Loritab is a huge help in making him more agreeable.

Three rolls of bandages and a couple of guaze pads later, Deacon looks like an old timey football player. The Mepoplex foam stuck to his chest makes him look muscle-bound, which is really pretty cute. Whenever he is feeling self conscious about his burns we remark about how awesome it is that he looks like a football player. He eats it up.

While I am mummifying Deacon, Nathan is doing Phoebe’s nebulizer treatment, and hooking her up to her bi-pap machine. When everyone is taken care of, my bed is outfitted with a special pillow and a cover blanket for Deacon so he won’t ooze on the bed linens. Tonight I will have Deacon shift (which doesn’t entail much once he’s asleep) and Nathan will be on the cot in Phoebe’s room. Once Phoebe is in a good, deep sleep, we will put her physical therapy boots on her for the night. (By the way, thank you ERIN for coming up to the hospital on your day off just to make sure Phoebe went home with the right angle of boots!)

At midnight, Benjamin and Phoebe need meds. Benjamin is taking an antibiotic for his skin infection and it seems to be getting better. Unfortunately, the medicine he is on requires that he sit up straight for 10 minutes right after he takes it, so we have to wake him up at midnight, have him take the pill, then sit with him for ten minutes to make sure he sits up straight. I have no idea why that is required, but that’s what it says on the label!

At some point after midnight we are finally allowed to go to sleep with our respective patients for the night. *Yawn…and then I set my alarm for 6 am when Phoebe will need her next shot. Crazy bedtime routine. Crazy life.

We are thankful to have our little patients at home but we need grace for this lot. I had a mini-breakdown today just feeling overwhelmed and pulled so many directions at once. Thank you to all of you who are praying for us, supporting us, loving us and just being there for our family. It means the world…

Here’s to a week with new mercies every morning,

~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.

22 responses »

  1. What wonderful parents your kids have been blessed with. May God give you grace and mercy tonight, I pray you all sleep sound through that little window you have. My heart and mind are constantly with you and praying for you.

  2. Oh mama and sister in Christ! It is ok to have those melt downs. It is so hard to stay strong. God knows your stress and every need. Praying for rest and peace and as much normalcy as possible. Praying you feel God carrying when you feel like you can’t take another step. Loving and praying for you. Also my girls have been growing their hair and hopefully get hair cuts this week for locks of love! 🙂

  3. We have been in a course and just saw. I am so sorry for you. I am praying for you guys. I don’t understand why when it rains it pours. I am praying double hard for you. Terry

  4. What strength you all have- and to mustard up what energy you have left to update us all is amazing. Thanks for the daily updates, i know it means so much to us and I’m sure it does for everyone else on here. I pray you get a solid six hours of sleep bringing you energy and a new day at home as a family:)! Praying and fighting for you all!!! We love you

  5. Amey y’all are so often on our hearts, its second nature now for Jesus to have us lift you up several times throughout our day. We are drawn nearer to Him thru your vulnerablility, thank you for that. Just wanted you to know how loved you all are and how blessed we are to be on your team! Love love love, The Kahle family

  6. good grief girl go easy on your self! Melt down as many times as is necessary to reshape what is gloriously possible.
    The ballerina princess and the football hero both are guarded and attended by the Major General Benjamin and the CEO of the Guardian Angels, Averic (sp). All guided and directed by The Holy Council and their lead Chief of Staff’s, Mom and Dad. Various assistants and support staff are waiting and willing at their command armoured with prayer, praise, hope, and encouragement. The Enemy doesn’t stand a chance.

    Levity aside, strength and comfort to you and the family. It is ok to have professional help in the home from time to time to help in times like these. They are out there, some waiting to be asked. Most are willing on a 24/7 basis. (just a suggestion) . Prayers continue. Thanks for having the strength to share the journey!

  7. Hi Amey,
    I’m wondering why you have to wake Ben up at midnight to take an antibiotic? That seems strange to me (as a pharmacist). If you would like me to look into this a bit more, please e-mail me: hbislew@charter.net and we can correspond directly. Otherwise, I would encourage you to talk with your personal pharmacist, as well, and maybe this dosing schedule can be changed to be more convenient for your family. Praying for you!!!! Heather

  8. bless you amey, my heart goes out to you. so much of the time it’s taking it one day, moment sometimes, at a time, putting one foot in front of the other. i was reading an article recently about how stay at home moms are more depressed than other moms, how we tend to feel isolated, etc. and that’s of course without all the crazy worry and stress of having children who are deeply hurting. even as life is normal, dealing with my kiddos who are sick with a virus etc, it’s hard to see the light at the end of that tunnel. waking up repeatedly at night for i’m not sure how long, i don’t know when i can finally go back to sleeping all night, could be days, weeks, months? it’s hard to tell. but for me, i have mostly healthy kids. today. but i struggle still, putting one foot in front, moving along, from today to tomorrow. i struggle with isolation and feeling depressed, like my work is never done, feeling overwhelmed. we are not in the same boat you and i, but on a much lesser scale i understand how you feel, and my heart goes out to you. i know you are weighed down by so much more, so i hope my prayers reach you, lift you up, and i hope your burden is lightened.

  9. Who will you let in to help you? Will you let a play therapist in to have ‘child life” therapies in you your ‘Hospital Fair’? Will you allow a mom who has been there, as much as anyone has, to help? We have a team praying for you, and as for us, it makes us hold on to our loved ones a little stronger. Having had a very sick and disabled child, I have done the all nighters to keep my daughter at an angle and monitor her breathing while giving meds single-handedly. Or i could just be there to listen as a licensed therapist. I could help, if you run out of reserves and will accept a newcomer. In any way, Janell

  10. Bless your heart, Amey! I have NEVER been through what you are going through, but as a grandmother of 6, 3 of which live with me (and their mother, too) we have some moments of demand from all 3….but we never have gone through things you and your family have. YOU are all still on the First United Methodist Church prayer list. I was asked about you all yesterday. By the way, my middle grandson almost 7 years old… decided when the microwave rang out that his hot tea was ready… raced to the microwave to remove it… Thanks to your updates, and what had happened to your precious son.. I SCREAMED AT THE TOP of my lungs.. DON’T OPEN THAT DOOR… so you see even OLD 57 year old NANAS have our breakdown moments….so YOU are entitled for sure!
    God bless and keep you all… WE are all still praying for you!!!

  11. This is a crazy routine, I will pray God will give you the grace and strength to make it through. Your children are very blessed to have you.

    Continuing to pray for healing.

  12. You are an amazing mother. I marvel at your strength. Our Lord will see you through when you are weary. Praying for continued strength for you and your family.

  13. Amey, I think you are practicing to be an Angel, because only Angel can handle what you are doing!!! I Pray that with each day it gets easier and easier for your family!!! God Bless You!!!

  14. the last picture there just melts my heart into a puddle on the floor… love those two sweetums. Glad everyone is home together and am praying that you are able to manage today with encouragement and ability to remember all of the details. you guys are not just our friends but our heros. Praying for you everyday!!!

  15. Deacon looks so good especially given the circumstances. In his padded, camo stuff he rather reminds me of The Teenage Mutant Ninja Turtles. Cept cuter!. Praying for you ALL daily!

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