I woke this morning well before the sound of my alarm. Well before the dogs began to pace or the sun began to rise. It was not like one of those days when you wake up and it takes a blink or two before you remember where life has taken you. No, I knew the moment my lids separated that I did not want it to be this day. I closed my eyes tightly and sunk further under the covers trying desperately to fall back into a deep slumber. But my heart was racing too fast, my lungs were taking short, shallow breaths and I was trembling.
There was a time when I couldn’t stand the waiting. I wanted the tests because I wanted to know. But this time, because of the prognosis that was on the line, I didn’t mind waiting. I enjoyed what was happening in the waiting – the living. I simply didn’t know if I could bare to know the results. Could I handle it if they told me the cancer was back and we were only walking a downhill battle? I didn’t know.
I knew I had grown quite comfortable living in the waiting this past week. I had found hope there. Hope that could be torn away in a thirty second phone call later that day.
I began to read through scriptures of promise I have been trying to take up residence in. I tried to focus on words of Truth instead of statistics. Instead of the many heart breaking stories I am watching all around me in the lives of other pediatric cancer patients. I found peace.
But all day long as I waited the peace slowly began to dissipate. I nearly threw up three times in the radiology waiting room. I would run into nurses who have cared for us in the past and they would look at me with condolence in their eyes. I didn’t want their condolences damn it. She wasn’t dead. She was alive, on a scanner and it would not determine her destiny. And I claimed that over and over again through my tears. I declared it though I didn’t feel any emotion attached to it.
It was just after five when I got the call. The call that will go in the book of calls that has changed my life forever. The scan indicated the tumor was MIBG avid. It is indeed neuroblastoma.
I talked with no emotion to the doctors for several minutes. There will be a biopsy next week to see exactly how best to treat it and they have contacted their Phase I Research Team to begin looking at chemotherapys to possibly target it. We won’t know more until the first of the following week. But this is what I do know: with relapsed neuroblastoma the medical goal is no longer curing the patient, it’s keeping the patient stable as long as possible.
I told Kendrick and then together we came in the hotel room and told Izzy, “That was Dr. Weiss and Satheesh, baby. We need to talk.”
She wept. She buried her face in the pillow and did the thing that I wanted so desperately to do. She bawled her eyes out.
“I don’t want to have cancer again,” she said, her lip trembling. “It’s not fair.”
We talked for a long time and finally she said she just wanted to go to sleep. I snuggled up close to her, having flashbacks to all the times I lay close to her during treatment. Silent tears fell down her cheeks and began to fall down mine. I stroked her hair, cherishing every strand.
“I don’t want to start staying at the hospital again,” she said through her slow tears. “I don’t think we’ll be doing much of that babe. Treatment won’t look like that this time,” I assured her.
“Why?'” she asked? I swallowed hard and tried to keep my composure, “it will just be different this time.”
“Will I lose my hair?,” she asked with the desperation of a grade schooler now and not a four year old. “Probably at some point,” knowing I had no idea which chemo we would try first and finding one that kept her stable would be tricky.
“Then I want you to lose your hair with me again,” she said. And of course I said I would.
When it was all said and done and we said good night I told her I loved her forever like I sometimes do and this is what she said back, “I love you mama for my whole life…and my whole history.”
Blessings on you today…and I will declare it until the day either she or I take our final breath, LIFE FOR IZZY.
Molly, there are no words that I could write that could convey the depth of sorrow I feel in my heart. All I can offer are my prayers. I pray life for Izzy and calm and God’s ccomfort for you and your family.
my heart is breaking for you my sweet friend. I love you guys so very much!!!
LIFE FOR IZZY
Molly,
Of course, I’m praying for Izzy. But you know that God had directed me to pray for you. I am and I will. You cannot begin to fathom the depth of His Love for you. I see His arms wrapped around you.
Julie
Dear Molly, I know you through my cousin Jess miles. I have been following izzstory and recently I shared it with my pastor so we could pray for Izzy.
We want you to know, that God is greater than neuroblastoma, he is the great physician. This is not over. Gods truth is the truth, not what we see or even feel. My pastor asked me to encourage you to only speak truth into Izzy’s life. Only speak truth!!! We believe that God makes all things possible. I have witnessed miracles with several members of my church! I believe! I’ve seen a child’s heart go from 5% functionality to 100% by God alone! The surgeons opened up this child and found her heart 100% perfect! They were astounded! This was after several surgeries had already been performed and she was expected to have a heart transplant! That meant that someone’s else’s baby would have to die for this one to live. My pastor said thats when he realized that someone had already died for her! And from there they declared that truth! I’ve had the chance to hold this beautiful little girl in my arms…a miracle in my arms! IT IS TRUE FOR IZZY TOO!!!
We are here for you! And
We welcome you to reach out to us for strength for yourself, and we are continuing to pray and believe LIFE FOR IZZY!!! The Lord is faithful, sweet and precious Molly!
All My Love, Heather Ford
Life & love for Izzy and her family! Prayers to heaven for a complete healing! Our God is able! Don’t give up Izzy!
I’m sending healing prayers for dear Izzy, as tears are rolling down my cheeks, my heart is breaking for Izzy her loving family. May God give you all the strength to fight the fight one more time.
Prayers for Izzy and you and your family.
Molly, not many days pass by without me thinking of Izzy or you. You both show courageous strength and faith. I as well have a difficult time finding words to say that could even begin to heal or help you. But I do know that as I sit here crying reading this post, I will pray harder and stronger for a cure for Izzy. May you be able to rest knowing we all are fighting for Life for Izzy! Lord comfort and strengthen all of you at this time.
Molly, you do not know me but I know your mother-in-law, Bev and I knew Kendrick when he was a child. I am holding Izzy and all of you in my prayers and in my heart. I will also ask others at First Baptist Church, C’ville, to pray for Izzy. LIFE FOR IZZY!
We are praying. When your up against a wall, and your mountain seems so tall. And you realize life’s not always fair. You can run away and hide. Let the old man decide. Or you can change your circumstances with a prayer.
When everything falls apart, Praise his name. When you have a broken heart, just raise your hands and say, “Lord you’re all I need you’re everything to me,” and he’ll take the pain away. When you feel you can’t go on, Praise his name. When you feel you’re all alone just raise your hands and say,”Greater is he, that is within me,” and you can praise the hurt away. If you’ll just praise his name.
Molly, my heart is breaking for Izzy and your family. Thoughts and prayers for strength and comfort being sent your way.
God is still in the miracle business and so that’s what I’m praying for for your sweet girl. I’m also praying for peace and for God to prepare your heart for His decision. 🙌
I get the happy to wait thing. I’ve seen this posted on FB three or four times before actually opening it to read. I would just look at the photo & hope. Now that I’ve read it, I’ll hope still.
I don’t know what to say. I am so so sorry for you all. My heart is breaking 😦 I keep praying for strenght for going true this all again. I believe God can do a miracle and I will pray for for a miracle in lizzy’s life♡
I have been asked about Izzy and your family updates many times by our concerned Sunday School class who have prayed over these years because of your grandmother, Sharon. We will continue to pray for each one of your family as you walk this world with the Lord daily with faith for Life in Christ.
Prayers for everyone
I am so very sorry. This breaks my heart. My sweet granddaughter Israelle Grace was named in honor of your Izzy and my Merry Grace ( profoundly handicapped). Every time I see my granddaughter, think of her or talk to my daughter Melody, I will pray for your Izzy. I don’t understand this journey. I agree with Izzy- ” It’s not fair!” I will be praying for your strength and courage, hope and peace. Please know how much you are loved.
Duke university is running a phase 1 trial – treating neuroblastoma tumors with the polio virus. You have to have had surgery and a recurrence to qualify. Huge success rate of curing this incurable cancer. 60 minutes had a half hour episode about it last month “curing cancer with polio”. My sister has been working on this team for the last 8 years or so.
… I’m so sorry to read this… i will be praying for you and your family.
I’ve been following Izzy’s story. Tears are rolling down my face. My heart breaks hearing she (& the rest of your family) will have to go down this road once more. I have been & will continue to pray for your little one, that God will keep her in His hands & heal her perfectly. Keep trusting in Him! We will all continue to pray! Life for Izzy!