Hard Day’s Night…

Standard

I’m discouraged.

It seems like we go along in survival-mode for a month or two at a time; have some highs, a few lows, and then we crash. Because really, in spite of the hope we have for life getting back to “normal” when chemo ends, I know it won’t be. It will just be “less crazy”.

After the last several nights, I wonder how we will survive…sustain, long term. Phoebe is awake constantly at night, wanting food. This is not abnormal for her, it just seems to be getting worse with no explanation.

Nathan usually takes the night shift for a couple of a reasons; first, he sleeps like a rock so he doesn’t wake up every time Phoebe talks or make a request, which is good because she will sometimes go back to sleep if he doesn’t answer. And second, I wake up and home-school the boys and this way, he can sleep off the night before with Phoebe. I am a very light sleeper and am usually awake most of the night when I take Phoebe night-shift, and I am unable to sleep once the sun is up. This isn’t a sustainable way to live, we know, but we were hoping things would get better when her body wasn’t so out of whack from chemo. Now we know it’s her constant hunger that keeps her awake more than anything, and aside from a miracle, that won’t change.

A typical night in our house goes like this:

At 8pm Nathan does devotions with the boys while I lie down with Phoebe and get her to sleep. At 9pm I go in and give her her DDAVP shot. I fill her water bag up with water and Potassium for the night. At 10 pm we go in and give her Melatonin and plug her ng tube in to her water bag . At midnight one of us goes in to administer her meds. Then we can go to sleep. No more meds until 8 am.

She usually sleeps decently until around 2am minus some complaining about tummy pain from the Potassium or the need for a diaper change. At 2 am the eating begins. We have tried re-directing her, distracting her, giving her Ativan so she will sleep it off, giving her a food she doesn’t much care for as the only option, etc. Nothing works. So we started putting a bowl of Cheerios by her bed at night. When she says she’s hungry, we give her the bowl of Cheerios. She will often eat for a bit then fall back to sleep. When she wants to munch, she just grabs a handful of Cheerios.Lately, a bowl of Cheerios hasn’t been enough. It’s been 4 bowls. I get up 2 or 3 times a night to check in on her since Nathan sleeps heavily and I can often hear her crying. She has unexplained pain in her bottom that keeps her up and makes her want her diaper changed frequently. Most mornings there are 6 or 7 diapers on the bedside table. In the morning, I shake out the sheets and clean up the Cheerios off the floor and toss all the diapers while Nathan sleeps off all of the waking-up he did. Her room gets vacuumed daily.

When she wakes up, she usually eats 2 or 3 “breakfasts”. This morning for instance, she has had 2 waffles, 2 cheese quesadillas and an orange. There does not currently exist any type of appetite suppresant medicine that does not work by signaling the pituitary gland to “trick” it into thinking the tummy is full. She has no pituitary function whatsoever, so a normal appetite suppresant will not work for her.

How can we live like this? I thought having a newborn was difficult, that was a piece of cake compared to this. We are on our third appeal with insurance for a night nurse, or even just a night helper who’s not a nurse, so we can get some sleep. But they keep denying us, saying that she’s not “sick enough”. I wonder what qualifies a family for such help? At any rate, it makes life feel hopeless. Eventually Nathan will be back at work, and then I suppose our only option will be to put the kids in school and me take night shift and try to sleep during the day while watching Phoebe and Deacon? What a life. Survival.

I’m certainly not the only one in the world with a child with special needs, but without some sort of help, I don’t know how care-givers do it. Being constantly exhausted steals initiative, makes us irritable with each other, and makes it hard to dream about the future. We need a miracle.

Having so many friends who have lost children to this disease, I feel ridiculous when I make posts like this. We still have Phoebe here with us, and there are just as many precious moments in the wee hours as there are difficult ones. I guess I’m just trying to figure out how we make this new life work…

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.

20 responses »

  1. Dearest Lord Jesus, Please give this family a miracle! We thank you for all the miracles you have given them so far, and that Phoebe is still alive, that the family is healthy, the boys are good, and that Nathan can sleep inbetween awake times easily, we are very grateful for every good and perfect gift for this family! I pray right now for help at night, either the insurance company come through or someone or two or three who can do this on a regular basis to come forward. I pray for Phoebe that either her glans will work or you will just heal her hunger need to a normal need for food. Mostly Lord, give this family strength, wisdom and grace! In your precious name we pray this, amen

  2. Amey, you are being a “loving, caring, concerned, overwhelmed and…and…and… Mom”! As well as you should be! We can not begin to even comprehend what Phoebe, you and Nathan (and the boys) have/and are going thru. We are glad that you feel you can “VENT” with those of us who have chosen to be your “Prayer Warriors” and want to hear the “the Good, the Bad, and the Ugly”! Praying for the miracles that Phoebe needs. You all are in our prayers…May God continue to lead you down HIS PATH that He has planned for you 🙂

    Peggy & Mike

  3. This is a hard one for sure. Thank you for sharing this problem in greater detail. I will be praying directly for a miracle.

    Psalm 68:19
    Blessed be the Lord, who daily bears our burden, The God who is our salvation.

    Father, You know exactly what is needed here. You alone can make Phoebe’s pituitary gland function in the way it was designed to work. Touch it Lord and make it work again. Reverse the damage done here in Jesus name. Sustain Amey and Nathan during this trial and give them peace and rest. Lord, you know how deeply Amey wants to keep her children at home and school them, Father have mercy and keep them there. Thank You Lord in the name of Jesus Christ amen.

    Praying and praying,

  4. Oh my dear Amey…your frustration is so incredibly understandable. I’m frustrated FOR you, for goodness sakes. You keep referring to a miracle…our God is a God of Miracles! I’m praying for your miracle every day, sweet girl.

    If nothing satisfies Phoebe’s appetite, let’s try to think of something that’s crunchy and yet has hardly anything in it calorie-wise. Hmmm…everybody think!

    Keep your eyes glued on Jesus, Amey…don’t look down at the waves…glued on Jesus.
    Love and prayers, prayers, prayers…to our Omnipotent Father!
    Suzy

  5. I believe God holds a very special place for care givers such as yourself and Nathan! What you do every day/night is something amazing! You are truly Gods Angels! My mother-in-law raised a special needs daughter to the age of 53! She was an amazing young lady and Momma is truly a blessing from God! My sister raises a special needs nephew and God bless her for the magnificent job she is doing as he is now 21!!! 😉 There is always hope in God’s loving arms, my prayers are with you and your precious Phoebe daily.

  6. Amey
    Thank you for always being so real. I wish I could change something’s for you 😦 Thinking and praying for you.
    Rayleen

  7. It is not even one little bit ridiculous to have these feelings. Yes, you are incredibly blessed to still have Phoebe with you still, but acknowledging that doesn’t mean ignoring the difficulties too. It is so hard when the future seems full of needs that are so difficult to sustain. Thank you for being brave and sharing that.

    There is so much pressure on caretakers to only tell the good, to focus only on the positive. While being able to acknowledge the positive is vital to your mental health, so is acknowledging the bad. I hope your words encourage others to come alongside you, to think about what life is like for caregivers of people with special needs and what we as individuals and as a society can do to make that life easier for those who are struggling.

    Love to all of you.

  8. As heartbreaking as it is to read of the struggles you are having, it is nice to read an honest report of what your lives are really life with the big “C”. So many of the posts people write when they are dealing with a sick child is all roses, flowers and unicorns. It makes those of us struggling to make it through the day feel like we are not coping very well. Thank you for sharing the good and the bad. Praying God will bless you and your family with coping skills and the rest needed and for sweet Phoebe to deal with the hunger issue.

  9. I appreciate your transparency in the raw. I am crying out for favor with the insurance and angelic help for all that your family is going through. We love you guys so much and pray for you daily. Hugs. I wish I could be there to listen, cry, help in whatever way possible. Hugs.

  10. Amey/Nathan-
    Just because we have faith in God does not mean that we don’t have feelings; they are normal and quite understood by the One who lived for a time on earth and experienced how life can happen. I’m glad to see you two speaking out about these inner issues instead of bottling them up as “inappropriate” for a Christian (or some other kind of nonsense that pop Christianity often supports). I don’t know the end results of the Chemo, but I’m praying for God’s will in this as in all things.

  11. I am a private care nurse for special needs kids where I live. My advice is to keep bugging insurance and whoever else you can talk to about it. Try to find a company that does home health nursing for children. They may be able to help you get nursing care! Praying for you and your family daily!

  12. Amey, my heart aches for the struggles you’re going through right now. Your honesty is so fresh and raw that I feel it in my heart as well.

    What exactly does your insurance company need to “prove” Phoebe is sick enough to require a night nurse? Would a petition help? An email campaign from all of us who love your family? A phone blitz? I am praying that God will show the answers and provide the respite so desperately required. What about friends and family…could you post your need for a night companion at church (or through all the churches in your area) to see if there are volunteers, preferably with a medical background?

    I like to be in control (can you tell?) and I suspect you do as well. I am praying that God will clearly show you the answers, and that He will perform a miracle in Phoebe’s body where her hunger pains disappear, even if there is no change in her body physically. We know He can do anything, so I trust He can do this as well, if it be His will.

    Mostly Amey, I want to encourage you. I understand your exhaustion (I have health issues that include constant daily pain and chronic fatigue disorder) and I know what it’s like to try and function, never mind function normally. I don’t have any fancy speeches or special ideas for sleep – I only have prayer, but I’m thrilled to have that, because it’s all that matters in the end. Prayer and God and Love. I will ask the Lord to give you a fresh spirit and an energized body, all while finding better, more permanent answers to the problem.

    Thank you for your honesty in these posts. I wish I had the power to change things, and through prayer, I hope I do. God bless you and Nathan and all your family.

    Hugs,
    Pam

  13. Amey, you are absolutely correct in your lament, for that is wwhat you are doing: experiencing the Brokenness in a way I am not. “Eli! Eli! Lama sabachtani?!” No special technique, no esoteric knowledge, and no judgment. I weep and pray for you.

  14. Anything I can say seems completely inadequate given the struggles you are enduring. I just want to say that I hear you and I am praying for you and your sweet family. I admire your courage and your determination and the way that your walk with the Lord is so clear and strong.

    Blessings to you and your family.

  15. amey, i consistenly read your blogs and the part about being up all night, especially the hunger aspect, really tugged at my heartstrings the first time you wrote about it, and now the second time even more-so. as far removed from you as i am, i ‘feel’ this aspect keenly whenever i think about it and feel just terrible for you and phoebe! i would be the one up too…my husband is also a deep sleeper and whenever our toddler or 3 month old wake up i’m always the one to hear first…it’s how God made some of us. anyway, i cannot imagine the frustration…you need sleep…oh, may the Lord continue to endow you with supernatural refreshment- physically, emotionally and spiritually! my prayer continues to be for HEALING, all the way, for your sweet girl. extend YOUR right arm Lord!!! amey, we are standing with you!!! i love you and your family even though i don’t know you. thank you for continuing to share. hugs, tears and prayers from ecuador…

  16. Praying for a miracle to cure Phoebe’s hunger, take away all pain, and restore perfect health to her! I also pray that you are comforted by the Holy Spirit and that hope returns to replace the understandable weariness of the routine. May Christ sustain your spirit steadfastly.

  17. Hang in there mom! God has a plan! In His Time He will reveal what it is.
    Sounds like a lot of platitudes. There is truth in there somewhere. At some point in each of our lives, if we are honest, feels this way about something that is going on in our lives.
    Discouragement is one of Satan’s tools and he wields it with a vengeance when we least expect it.

    The weariness that comes with all that you and your family are going through is fertile ground for discouragement. I pray God will give you the rest that is needed and that Phoebe’s body be healed. Wouldn’t it be wonderful if there were gizmo’s and gadgets like I Pod music to distract and help her sleep. God does have answers. My prayer for those answers come quickly and clearly.
    Blessings to each of you.

  18. Dear Nathan and Amey,
    It was exactly one year ago that we first heard of your story. I sat on the couch during Superbowl 2012 and wept as I read your story. Not a day has passed since then that the Fair Family has not been lifted up in prayer in our house. Many days, there are constant unclosed prayers whispered throughout the day – even through the night. We pray for God’s healing of little Phoebe. For wisdom, comfort and grace for you. For strength and endurance to continue on each and every day. For the boys, protection, understanding and light hearts. We will not stop. Thank you for faithfully sharing – even when it’s hard. God is good. May you feel Him holding you close.

  19. Amey/Nathan – I want to try and assist with your insurance problems. I am in the insurance business and have been for 35+ years.

    Please email me at tommyhiebert@gmail.com and we can arrange a time to visit at your convenience.

    Tommy Hiebert

    p.s. I “met” you all via Terry Waller. I know Terry quite well and have for 30+ years

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