I think this is the longest span of time I have gone without posting. The most obvious reason is that Phoebe is home and life is moving along, but school is happening alongside a lot of fun summer activities, and my sister in law and her husband and children have been visiting from Liberia, Africa where they serve as missionaries. This was their first time to meet Phoebe and our first time to meet their second daughter, Myriam. It was so nice to see them after three long years and the boys had a wonderful time with their cousins.
Phoebe has been doing well for the most part. We did have to make 3 unexpected trips to the hospital this past week; her ng tube got pulled out on two separate ocasions and then we had an ER visit the other night because she had a qustionable mental status upon waking from her nap. At the time, we knew her hemoglobin could be low and that she was also likely experiencing some drug withdrawals from her Methadone wean. It’s always deflating to decide to go to the ER late at night and know that we will be there for several hours just to have her labs checked, but with the possibility of a dangerously low hemoglobin level, we couldn’t risk it. I don’t know how we would do this if we didn’t live 15 mins down the road from the hospital.
Now that Phoebe is home more often and life has settled down a little (a very little), I think the reality of this whole thing has taken root in me. I feel a pervading sadness underneath the surface most always. I know some things now that I didn’t really have time to process before. For instance, I now understand that come what may, if we are a year out, or two or more from Phoebe’s chemo treatment, we will live our lives with future MRI’s and their possible life-altering results forever. I know now that secondary Leukemia is a possibility down the road. I am aware that Phoebe’s fellow AT/RT friends are slipping into eternity…some of these, the very first families to reach out to us when Phoebe was diagnosed. These things weigh heavy in the quiet spaces of my life. I prefer distraction.
I also have realized the ways that Phoebe has changed. Her cognitive abilities are wonderful, her intellect intact. I could not have hoped for a better outcome from her brain surgery. But…she no longer has the attention span for books. She will not allow me to read to her or thumb through the pages of a book just looking at pictures by herself as she used to do. She has no attention span even for her favorite shows…she can not focus long enough to watch or follow a story line. The steroids that she must take for the rest of her life render her impatient, demanding and prone to mood swings. I miss who she was before, even as I love her now. These are the little losses strung out over this cancer road. These are the subtle ways our lives change a little every day. The medicine that kills her cancer, kills her attention span and healthy cells.
When Phoebe was first diagnosed, we looked into the Burzynski clinic that several people had mentioned to us. There is a popular documentary out right now about this controversial man and his cancer treatment that utilizes antineoplastins. We were warned to stay away by our neurosurgeon. He said it was the only piece of treatment advice he would give us. But, we researched, even called the Burzynski clinic for information. When they heard Phoebe was 2 and had AT/RT, it became apparent that they were not convinced they could help. Upon further research, I dicovered that they have a 0% success rate in treating AT/RT cancer. So, that was the end of that. Next to Gliomas, AT/RT is the big, bad, nasty childhood cancer. Thus we chose the Dana Farber chemotherapy protocol which has a 50% success rate in treating AT/RT cancer.
We made the only choice there was to make. But waiting for chemo to work or cancer to kill is a feeling akin to being trapped in a small, dark space. I wish I could expalin it better. Life is on hold. That’s what I mean. And “doing” cancer is maddening. The not knowing is of course the hardest part. Who will I be when this is all over? Well it depends on how it ends, I think to myself. But no, I’m forever changed either way. We all are; Nathan, myself, the boys…Phoebe. How will God shape this thing for our good, for us, who are called according to His purposes? All this growing thick skin is for the birds and I’m tired.
And that’s what I feel right now. I feel quiet. And never quite at ease. And unwaveringly grateful for the cherubic little girl asleep in her canopy bed right now…breathing and dreaming.
Tonight I am remembering these lines from Rilke’s Book of Hours, Love Poems to God….
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God speaks to each of us as he makes us, then walks with us silently out of the night.
These are the words we dimly hear:
You, sent out beyond your recall, go to the limits of your longing. Embody me.
Flare up like flame and make big shadows I can move in.
Let everything happen to you: beauty and terror. Just keep going. No feeling is final. Don’t let yourself lose me.
Nearby is the country they call life. You will know by its seriousness.
Give me your hand.
~Rainer Maria Rilke
An Atypical Miracle 
My heart is heavy when you’re heart is heavy, my bestest. I love that you feel safe to be open and honest with those who are walking this with you in prayer. You, Nathan, the boys and the punkin’ are in our thoughts and prayers and conversations daily. I will drop everything for you if you need me. I hope you never question that. I love you mostest.
I can hear your heart cry Amy – and God knows it even more. Life is changing us and the circumstances we live in are doing their own. Trust in God he is always the same, neverchanging and loving us! Phoebe is his little girl, his creation his wonderful little miracle. And you and your family are miracles too – you walk on the small and difficult path of faith and angels are guarding you. Caring your little light ahead. Never know when the path is ending and turning into a wide and glorius street. But I think there are many families walking behind you and your light is lightening their path too.
So our prayer goes this morning out to your family and Phoebe to strengthen you and renew your feet and matches!
Bless you and lots of hugs,
Chris
Amey and Nathan—–
As mentioned before, I met you all in Mexico, at LCBC. I often think of the morning that Nathan spoke about one of the moments in his life when he knew clearly, that God was telling him that it was time for change. That was when he literally threw out the television set. His message was so compelling and I never forgot it………….this was a person who was truly listening to what God wanted him to do. I knew then, that this was a man who would lead his family with a faithful heart.
I have followed your family’s journey of faith and sorrow, and was one of those who pledged to pray daily for little Phoebe and all of you. I have done so, and will continue. I just wanted you to know, that despite how hard and sad it is to know all you have endured as a family, your story has also lifted me up. Just one person, but I’m sure many could say the same. Although I now live in Washington State, I know our former church family in Chapala keeps you all in constant prayer, as do I, and many from here that are now aware of Phoebe’s battle. I know a little about sorrow, although of a different kind. I also know without any doubt, that our only hope is in our Lord, Jesus Christ who strengthens us, even in our deepest and darkest moments.
I just wanted to say to you, that one small voice from far away, is cheering for you and thanking you especially, Amey, for the courage to voice the joys, the sorrows and the fears you are experiencing. I send you love.
He will make your feet like hind’s feet and set you in His high places.
My prayers continue for all of you.
*God is Good*
I continue to pray for you. That you and Nathan will be strong and feel God’s mighty arms around you. Cancer is not nice and I don’t understand why people little ones especially have to go through it. You are right it’s the whole family that goes through it but leaning on the Lord gives us strength to endure and knowing that other people everywhere are praying helps tremendously giving us the strength we didn’t know we had. God bless you Amey and give that sweet Phoebe a hug for me.
“How will God shape this thing for our good, for us, who are called according to His purposes?” He will somehow. Hang on! I know some of the frustrations with cancer treatment hangover. It’s not good, it’s not right, but God still IS! I’m lifting you to Him!
My heart goes out to you Amey. I always try to believe strongly that cancer, and life altering events happen to those that can handle it and are strong enough to battle it and god will never give you more than you take. But in this situation, Phoebes situation I tend to doubt myself. Such a strong family, sweet tender little girl Phoebe is and for you to go through all of this just breaks me. Sunah is Phoebes age and to watch Phoebe crawl again, or not want to read a book or not be able to speak- I just can’t imagine going backwards. But reading all your posts for all this time has inspired me, and so many others I know and you’ve made it through so much already, you can do this and continue to pray that after months and years of it- the outcome will be Phoebe alive!!! Maybe changed, and your life altered in so many ways but we pray for Phoebe to be the new healthy, cancer free sweet girl:) may your tender times be few and think of only all of these precious moments that we have in life!!! Sunah went to the dr last week and what I thought was going to be a simple teething issue or school kids virus ended up in the hospital with many tests ran for her heart. As I sat there alone with her waiting for family to arrive, waiting for more Drs to come get us for more tests, I thought of you. And thought- this is her life, but multiple times a week, every time something goes wrong your off to the hospital and you wait and wait praying that it’s nothing serious and all that testing wAs “just to be sure!” I don’t know how you do it, BUT YOU DO and I pray that your Family continues to do it in such a positive manner. I don’t know you personally but wish so badly I could meet you all!!! Were always thinking of you, sharing your story and giving updates. Lots of love and prayers from Colorado!!!
I am speechless.
In tears.
Amey, You are blessed in that you still have your beautiful daughter with you. GOD is working through all of you, and I do believe that is okay to feel the way that you do sometimes. I didn’t have any “warning signs” that either one of my sons could be taken away… one at 19, the other at 30, a father of 3, but it happened…in 2 separate accidents…both involving trucks. To this day, I stay as far away from trucks on the road as I can.
Prayers from our church continue for you and your family! We have the same issues with concentration with my grandchildren.
Have you considered St Jude’s for Children Research hospital…. YOU see without a St Jude’s mechanical AORTA valve, I would not be alive today! God bless and keep you all!
Praying for you all and Phoebe every single day. My heart is so heavy for you. Phoebe is a special girl who us loved by so many and has touched so many people. I’m praying for complete healing! I’m pray for that Phoebe you once knew to return to you. Did is with you. I don’t understand why this is happening to your sweet girl and i dont like it. Praying for peace in this storm. Love, Chelsea
You expressed where you are at very beautifully. I continue to lift your precious family to our heavenly father. Thank you for sharing your journey. < 3 ~ Amy
Thank you for sharing this. I am amazed at how you have always managed to remain so focused on God through all of this. I fear I would have cursed the heavens if faced with the same situation. You encourage me to rely on Him for my strength. We continue to hold you and your family up in prayers and hope for miracles.
My heart aches for you.
Amey, your writing makes me want to be a better mom. Thank you so much for sharing your heart and being real. I am on my knees for you and your precious girl. She (and you) have changed so many people through your story. We want to know the Lord more intimately because you you. In Eternity with our precious God, we will all rejoice in our perfect bodies. No more sickness. I am praying for you with my mother’s heart. For the everyday activities that you are walking through. I am praying for you as you watch other mothers/fathers go through the unimaginable. Thank you for sharing yourself so beautifully with us. You are helping many of us to change the way we walk through this life. We love you and pray for your precious girl daily, and for all of you.
Oh Amey, I hear and feel your pain and sadness. Change is so hard and when it involves one of our children being so sick it is heart wrenching.
This new ‘normal’ that is so hard to adjust to or to accept, is something God has been preparing you for your whole life. He knew this would happen and He is in control of all of it. I have been reading through Job, this has been the 5th time I have read through this book and I am just as awed at our God now as I was the first time I read it. New meanings are popping out at me and I just feel like a lump. Job 32 till the end of the book is very sobering and very descriptive on God and how He is divine and in control of all things. Who are we to question Him and His divine plan? Reading this book again has put me in a very sobering frame of mind. Maybe you might want to pick up this book and read it again, as I am sure you have read it many times just like me. I know the book of Job will bring you comfort. 🙂
God loves Phoebe so much more than you or Nathan do and He has a plan for her, a good and wondrous plan that doesn’t fit into what your ideas were. He has prepared you and changed you to handle this. I know this is so hard and hurtful but God’s plan is perfect and Phoebe is perfect and is, right now, just the way God wants her. Because I know our God, I just know in my heart there is a new Phoebe waiting to come out, one that is very different from the ideal earthly child. One that is so very gifted in a unique area. I urge you to look for this and cultivate it and give her room to grow into it. When one of our areas of life is taken from us another one grows in it’s place. Just like a blind person’s hearing will increase upon the loss of sight or how a bind and deaf person’s senses will increase on the loss of their hearing and sight. I know God has preformed many wonderful miracles in her life and we are told to continue seeking and knocking for what we want; a 100% healthy Phoebe here on earth. God’s plan may not be for Phoebe to be the way she was but to be a new and more wonderful Phoebe that only the pain of sickness can release in her. Satan may have thought he got her but God takes what Satan has planned for bad and turns it into good. Give our glorious God the room to perform His amazing work in your sweet precious daughter.
I love the ending of Job how God restores him to health and wealth. I am seeking this for Phoebe; complete health here on earth.
Praying and praying always. In the love of Jesus Christ.
“Let everything happen to you: beauty and terror. Just keep going. No feeling is final. Don’t let yourself lose me.” When I read the poem, Amey, I knew that this line is right where you are having to live, through no choice of your own. I love you and am praying for you.
Amey, I have no words only to say I love you and your family and pray that God continues to give you grace for each moment as they arrive. Your never far from my mind.
Thanks for the timely post!!! Everyone at church was asking me if it was Phoebe that had gone home to be with the Lord. (I guess from a Caring Bridge post on another precious child.) I assured everyone she was fine, but in the back of my mind I really wanted proof. Thanks!!! and Praise God!!!
Amey, I am sure you are tired, numb, quiet, anxious, and whatever else a mother in your shoes has been through. You are probably “depressed” from all you have been through. After a long stressful time the “pistons in your brain” grow sluggish and cannot function like before- for a little while. God will see you through this as well, but if you want to talk to your doctor about how you feel, there is help out there that is a God Send. Get as much rest as you can, when you can.
Bless the hearts of the Fair Family!!!!
LaNell
Amey ~
I don’t know you other than through your blog…I honestly can’t remember how I came across your blog…however, it is bookmarked and I check it every other day to see how I you are doing. I have three children about your kiddos ages and I ache for you and rejoice with you as you jump hurdles and stand victorious at different moments in this journey. I don’t know how it will all end or how you will feel; what I do know is that your story and your faith has moved me closer to Jesus. All things are to bring glory to our Lord, big…small…significant…or insignificant…You are glorifing God and you are strengthening the faith of other believers as you walk through this valley. Thank you for growing me, for turning my eyes to Jesus. You and your family are in my prayers.
Blessings,
Maren
You are such an inspiration, there are no words I could imagine would make this any easier. I hope you know your family is in my prayers always. God bless you!