This past week Izzy has carried a nervousness that has been both heartbreaking and expected. She has cried about things that I cannot fix and asked questions I cannot answer. I have tried my best to circle around her inquiries drawing attention away from that which I do not know to that which I do know. “Your eyes are the most beautiful thing about you baby, you don’t need hair,” and “I don’t know how long we’ll get chemo for but I will be right by you through it every single day.” Sometimes my efforts have been successful and sometimes they have not.
Monday night we were coming in from playing and she was being extra delicate about something. I picked her up and carried her into the house, asking what was really wrong. “I just can’t get my mind out of the idea that I have cancer,” and she buried her face in my shoulder and began to cry. “It’s all I think about,” she muttered. And so I realized that I had to find a way for it not to be the only thing I think about. I had to find a way to not walk around in sadness all the time. For her.
That night she slept with me and I prayed the Lord would consume her with a supernatural peace as she slept. I prayed He would take her every thought about cancer captive, freeing her mind to be a child.
Yesterday she had a port placed in her chest. It will provide direct access to her heart for this poison we call chemotherapy. There were problems placing it, the first location they tried had too much scar tissue built from the last tine she had a line place so they had to go in through her neck instead. Is that too graphic? Imagine how I felt when I walked into the recovery room to find her beautiful hair saturated in dried blood. Saturated. Her eyes opened and as soon as they met mine she tried to speak. She was in pain. Her mouth was dry from the breathing tube and words weren’t coming out but the tears falling down her cheeks told me what she was trying to say.
The nurse began to scroll down what she had been given in the OR and I kindly acknowledged the list. She then asked if I wanted her to be given a dose of Fentanyl or IV Tylenol. Hmmm, they just cut into three different places of blood vessel and proceeded to stitch a piece of plastic to a muscle underneath her skin – let’s go ahead and assume we’re past the IV Tylenol. But a simple, “Fentanyl,” was all I said.
Her vitals were off for a while. I chatted with old nurses we used to know. But through it all I managed to keep it together on the outside, in spite of what I was feeling on the inside. Until we were wrapping up and the nurse handed me this:
If you don’t know what it is I’m happy for you. It is a CVC (Central Venous Catheter) Emergency Kit. Anyone with some type of line that goes to their heart must have one with them at all times. I carried one in my purse for a year and a half. We had one in each of our cars. Anyone who took Izzy anywhere had one. On the oncology floor they are everywhere. They hang on every IV pole as a precaution. A child can’t even walk down the hall without one.
So when the nurse handed me one yesterday and said, “I’m assuming you know what to do with this,” it just hit me in one culminating wave of trauma from the past and fear of the future. You see, I do know how to stop my daughter from bleeding out, should the line be ripped from her chest. I do know how to replace her g-tube should the one in her stomach now be pulled out like it was once before when it got caught on a blanket. I am not a nurse but soon I will be giving her shots at home and taking her blood pressure regularly. They have taught me more than I ever wanted to have to know.
But you know what no one has taught me? How to walk on this path now. How in the hell I walk forward every single day full of hope and fully present with Izzy, never missing a moment, when in my heart I am consumed by grief and despair. No one shows you how to walk forward authentically, not pushing down the hard stuff, but still clinging to hope, still clinging desperately to the possibility that this may not be the beginning of the end.
When Izzy finally woke up and began looking around her pain was much more controlled. I was trying to carefully clean the blood out of her hair without disturbing the wound on her neck. Together we looked down at the port that is hidden closely under skin right above her heart and she started to cry.
“What’s wrong, baby? Does it hurt?,” I asked stroking the strands of precious hair away from her face. She shook her head.
“I don’t like it. I want it out of me,” she wept. I tried talking to her but she just cried. “When can it come out?” My heart broke then and there because according to the doctors it never will. I am trying so hard to hope for more, to believe that God has more for her and that He will deliver her once again. But I just stood there, silent, stroking her hair.
As I put the CVC kit in my purse it felt like an acknowledgement of where we are now. I remember how freeing it was a year and a half ago to throw them all away. I hid it in the very bottom so I couldn’t see it, still not wanting to believe chemo would be starting in a little over a week, her hair would fall out and her suffering would begin. Yesterday I read the first chapter of a book that is all too familiar and I hated it.
I want more than anything to embody a grace, a peace and most importantly a hope that overflows to Izzy through this hell. I have to figure out a way to keep going, to keep fighting, to keep believing she can be healed because she needs me to.
Blessings on you today and LIFE for Izzy.
izzystory 
My prayers are with you and your sweet girl! I pray a peace that passes all understanding, an overwhelming peace and comfort for you both as you begin this journey together. May God place His healing hand on you both and may you find rest in His arms!
Oh, honey. You’re right. There are no words to make it better. Nothing MAN can do will cure this. We continue to PRAY and HOPE that God will see fit to say, ” That’s it. Enough.” And show His mighty power to heal her completely and immediately. We pray for this. I’m so sorry. My heart aches with you. Life for Izzy and HOPE for you. Dee
It breaks my heart reading your posts about Izzy. She seems like such a sweet girl and you one of the best mommas! I wish there was something more to do to help, but all I can do is pray. And pray I will for Izzy and your family.
Prayers for your sweet Izzy….praying for you to mom … that God will wrap you both in his loving arms and that you will be filled with His peace.
Praying for you and for Izzy.
my heart aches for your family, you write so beautifully about your journey but I know that you’ve reached a point of desperation and I’m praying for God to lift you all up in this storm. Sometimes He calms the storms and sometimes he calms us IN the storm. That’s my prayer for you. Thank you for writing this story and we prayer warriors will continue to hold you up when it’s too hard to continue! Step by step!!
I pray that you will find something “fun” to do each day. That you will read good books to Izzy,that you will wear a red nose and cross your eyes when you come into her room, that you will singv silly songs, that you will put fairy lights all over so the night might be magical, that you will color together in one of the beautiful color books at Costco, that you will cuddle and listen to musicor audio books, that you will bogh love on the ogher children at the hospital. All kinds of ghings that will let your mind see beauty in the midst of pain. God bless you all as you fight together anx may you take some comfort fro all the prayers winging heavenward, asking for healing and miracles.
I have been reading of your journey via a mutual friend. As I shared with her when you wrote that you were “numb” and unable to feel, we are all out here, feeling for you when your heart cannot. On those days when your tears run out, we cry in your place for the pain you no longer feel. Please know that when you feel alone, we pray for God’s abiding presence around you and this precious little one. Our church family has a favorite motto: God is Good. All the time. All the time, God is Good. It is an expression we speak easily when times are good. We try to choke out the words when times are difficult. Know this, even in these dark days, God is doing many good works in your life, in Izzy’s life. For example, you are reminding us to pray for one another now, love now, live now, be grateful now, forgive now, hope always. My hope and prayer is that these journal entries you write will one day become a publised book with a happy ending. It is my prayer for Izzy. LIFE
There is nothing I can say that will make you feel any better. But I hope you get some measure of peace knowing that people all over are praying for you and Izzy and your whole family. As lonng as you have to go through this we will be praying. I am praying for your miracle and life for Izzy.
I know every step of your journey with the chemo and the surgeries and the lumens and portacaps, the dressings and the clamps, the flushing of the lines to keep them free of blood clots. Most of all I know your heartache. My son did not relapse with a secondary cancer or another neuroblastoma but he was stage IV inoperable and it was in his bone marrow too. 2 years of aggressive chemo and all the hell that comes along with it. God bless little Izzy. I pray for her miracle and I do believe in miracles as my son lives today at age 28. I know secondary neuroblastoma news is devastating but I know God hears your cries and your prayers, he is with you, guiding you, giving you strength.
Have been praying and declaring the goodness of God over you and your family. Having walked this walk with two of my own, the 23rd Psalm has always spoken to me. Even if I walk through the valley of the shadow of death, you are with me and all that concerns me. Your rod and staff of love comfort me when nothing else can. Brian Simmons of the Passion Translation says it like this…” Lord, even when when your path takes me through the valley of deepest darkness, Fear will never conquer me because You already have! You remain close to me and lead me through it all the way. Your authority is my strength and my peace. The comfort of Your love takes away my fear. I’ll never be lonely for you are near.”
I think you are an awesome mom and I am believing heaven on earth for you, Izzy and all that concerns you. Praying for great strength for you all. Much love… and blessings!!!!
We love you guys. We are praying every night for Izzy.
My heart breaks for you both as you go through this. 365 times in the bible God tells us not to worry – one for every day of the year. I’m praying for you both to have peace and as much joy and hope as possible and as few worries as possible – leave the uncertainties to God. go ahead and be upset that this is happening, then let that go and focus on all the positives you can find in each day and spend your energy there. I will be praying for you!
All of you are in my prayers many times every day.
“Little Izzy” I am your friend Carmen’s step-grandma, you will be prayed for daily asking for your strength and endurance to handle whatever is before you! You must be a strong little girl ! Tell mommy that we know what it is to be lifted up with family and friends as we have been there.
Praying for all that may have contact with you and be lifted up by the One that cares the most.
Diane Perry
My heart is utterly totally breaking right now for both of you as I read this, I too have had to have my port replaced and start this chemo journey over again, but my doctor says my prognosis is very good, but at the same time I wonder is it really. The only thing I know for sure is God will be with me through it all and I wish so much they had better treatment plans for children, especially since I know they are coming up with new and better treatments for me everyday. Even though I love my life and I enjoy living I still can’t help but wonder when I see and hear these horror stories about babies suffering if I had the chance to do what Jesus did and take their place could I, would I, I like to think that I would, but then I remember Peter said he would be with Jesus through it all and we know how that turned out but still my heart breaks for your precious child. It’s just not fair. I know God has a plan, but I just wish he could share it with us, to help us understand why we have to endure so much. Then I remember that Jesus didn’t ask why he just trusted God. I really want to trust like that and most of the time I can, but when tragedy strikes a child it really hits a nerve deep inside my heart. Please know my prayers are with you both always and no matter what the doctors say God can still restore dear sweet Izzy to perfect health. That is my prayer and my wish. My heart is breaking for you, I can’t even begin to imagine how you must feel trying to be strong for the both of you and trying to hide your fear from her at least I can let it all out. All I can do is pray for you, but oh how I wish I could do more. May god give you peace and comfort,
Char Scott
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I’ve been praying for Izzy and your whole family. Margaret keeps me informed. It is so sad that that evil cancer has returned. But please keep hoping for a miracle. I pray for peace for you all. For Izzy to be able to enjoy her life. I know you are surrounded by loving friends.
You and Izzy are in my thoughts and prayers. I am in awe of your strength and your mother’s love. I am also heartbroken reading your story. I pray that Izzy conquers this awful disease and that your faith sustains you-know that when you are at your lowest others are praying for you both.
Praying for you Molly. The way I’ve been able to keep going through the hellish trials of life is sharing them with others and allowing their prayers to carry me. Thank you for sharing and for allowing us to pray for and with you and Izzy!
She is beautiful. I am a next door neighbor of Marcia and Keith Calhoun from your church and I think about you and Izzy all the time. I am praying very hard for your family.
While I have followed this story from the beginning, tonight is the first I’ve commented. After I read this entry, I went back and read your first post on July 2, 2012. I was struck by something you wrote…”Hope doesn’t always come in a pretty little box.” It didn’t then and it certainly doesn’t now…but hope does remain.
My faith looks differently than yours, but I offer it just the same. From my heart to yours, I offer my dedication. To you I hope for love, grace and peace. To Izzy, I radiate life.
Peace and much love to you always.