Forever Free

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Nearly five months ago I wrapped up this blog. Not in the pretty little bow I wanted but with an acceptance of life on our journey. Yes, there was a definite moment neuroblastoma invaded our world, changing the course of our journey forever but there was never really a moment when the journey would end. Life would just always look different. With the constant array of medical complications resulting from the treatment that saved her life, her journey with it all would never really end. Or so I thought.

Today I sat in the Oncology clinic after her quarterly scan and watched her sleep peacefully on the table. I could hear her breathe, the congestion in her nose and lungs so deep. We had been on the road since 4am and she was exhausted but still delighted to be in the children’s hospital she had learned to love over the years. I, myself, drifted off to sleep too, waiting for the doctors to arrive. My main concern was some iron that had build up on her liver. I wondered what the imaging would say about that.

We have worked with this team for three years and I know them well. They opened the door and though we were sleeping, they still didn’t greet me with the same enthusiasm I have grown accustomed to. I knew.

They chit-chatted about meds or something, I honestly can’t remember and then there was an abrupt shift they had been waiting for the right time to make.

“There is a spot on the MRI I am a little concerned about. A spot on the spleen. It was there in 2012 and it’s back now,” he said, as the other doctor stood there staring at the floor. This time was the first time since 2012 she hadn’t had two scans. We always do two scans. One to get a picture of the abdomen where her primary tumor was anf one to rule out neuoblastoma activity throughout the entire body. This time we did not. We were finally far enough out from treatment he didn’t think both scans were necessary. Without the second scan, the MIBG, they didn’t know what the spot was. Could be anything but they were concerned.

He continued about how he had seen the spot in January but because it wasn’t Neuroblastoma active he thought nothing. I was not aware the spot was there in January. I interrupted, “Show me the scans. From today and January. Just stop and show me,” and I stared at the computer screen as I waited.

Two scans soon appeared, side by side on the screen. There was zooming and scrolling and then I saw the thing on each picture I did not want to see. The thing on her spleen that should not be there. Suddenly, I couldn’t breath. Well not really. I think I lost my will to breath. I think the part of your brain that tells your lungs to take in oxygen just said: STOP – It’s not worth it anymore.

He went on to say that the soonest we could do an MIBG was next week. Or he said we could just watch it for three months. I laughed. “Don’t laugh,” he said. “This isn’t like adult cancers where the sooner you catch it the more of a difference it makes”. Subtle tears streamed down my face as he said it. It was harsher than he meant and the look on his face told me he knew. “I know what this is like. I know if this is Neuroblastoma…” I trailed off.

“Let’s do the scan next week,” he said, “but even if it’s not active I may still want to get a piece of it. It may still be Neuroblastoma, just slow growing. And that would still be good news.” I rolled my eyes. “Or it could just be something completely benign that has developed there.”

All the while we talked my mother sat behind me silently crying, listening, wondering. All the while we talked Izzy lay on the table peacefully sleeping, dreaming, dancing, maybe. All the while we talked my heart grew hard, cold, angry and afraid.

The picture above was taken the 2nd week of April on spring break. I had taken the one below during Izzy’s Make-A-Wish trip almost a year and a half ago and it occurred to me to take another when we were back at the beach. After I took the photo of her freedom a few weeks ago I sat back and watched her play on the beach. I realized then that a true picture of freedom, one where I really embrace all the things I say about living a life of surrendering her to the Lord, would be a picture of the ocean without her. A picture of the beach when we go and she is in heaven. I sat in the sand and thought about that for a long time.

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The Lord has taught me so much about love through Izzy, about real, true altruistic love. About the kind of love it hurts to hold onto but the kind of love that finds freedom in letting go. So this is me saying I guess I was wrong. I guess the journey can end for her just as quickly as it began. There really could be a definite moment in time when just like her journey through Neuroblastoma began… it ends. Will you join me in praying against that? In coming against this horrible disease that has already claimed the lives of so many children and say: no more.

Next Thursday I was scheduled to do a lot of things. It’s the National Day of Prayer and I was supposed to be leading prayer at the Lawrence Government Center, praying specifically for the families in the community I serve there. That evening I was scheduled to speak at a Mother’s Day Banquet. I was contacted by a friend’s pastor who has followed Izzy’s story and wanted me to share our testimony. I was going to speak on Isaiah 60:1 “Arise, shine, Israelle, for your light has come and the glory of the Lord is on you.” That verse was a pinnacle for me during treatment and I had decided to to speak on it next week. Instead of doing those things I will be in Cincinnati while Izzy has the scan.

Since it is the National Day of Prayer and since I was planning to speak on that verse, will you pray that specific verse over her?

My heart is broken and my mind is empty now. Blessings on you today and LIFE, always precious life, for my Israelle.

19 thoughts on “Forever Free

  1. Praying for your precious Izzy. Praying for life, freedom, and pure enjoyment for her, as well as comfort and peace for her family. May God bless you all.

  2. Wow left me in tears!!!! Your words are so wonderful and your faith blows me away!!!! Truly makes u take a look at your own life n how blessed we are…and how much we take our blessings so lightly. I have followed u and ur daughter on fb …. she is so precious I wish nothing but the best for ur family 🙂 God is good all the time!!!!!

  3. Thank you again Molly for sharing your journey. You are not alone as you walk this journey. Prayers will continue as we believe, Life for Izzy!

  4. I just prayed that specific verse over her. AND a special prayer of strength for you…. Hugs to you. I have never dealt with cancer with my children. BUT I have two kids chronically ill. My daughter has Osteogenesis Imperfecta type III. She struggles daily. We, together, are praying for your family too.

  5. I just prayed that specific verse over your daughter as you requested. I also prayed for your strength. I have never had to deal with cancer. Both of my kids have had medical issues. My son was a preemie. (1 lb 12oz) and my daughter has Osteogenesis Imperfecta Type III. She has had 18 surgeries, and over 100 broken bones. Together we just prayed for your family. Praying for a miracle, super strength, and continued grace.

  6. Words cannot express my heart for Izzy, you, and your family! I’m praying for you all! May God wrap you all in his wings and carry you through this! Hugs and prayers! FREEDOM FOR IZZY!

  7. My daughter, Christine, has shared Izzy’s story with me; my prayers have followed this journey. I look forward to the weekly picture for Izzy from Christine and now find it hard to not feel the sadness.

    Michael McNeal

  8. My precious child run into His outstretched arms and lay your head on His heart and be still and KNOW HE IS GOD…💖 I WILL BE PRAYING WITH YOU AND FOR YOU MY SISTER IN CHRIST🙏

  9. Praying for sweet Izzy and your family. Dear Lord heal her and give her doctors wisdom to find the best treatments for her.

  10. I will pray for complete healing and that the Lord will give you strength and a peaceful heart in this difficult time of insecurity.

  11. Our love and prayers to you and of course Izzy. Do not give up…this could be a smoke screen to get your hopes down. When we are weak HE IS STRONG! My husband and I will join the other saints in intercessory prayer for a complete manifested healing for Izzy! God’s blessings and love to your entire family!

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