Forever Free

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.

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.