For the past three and a half weeks I have had more hope than I have had in a long time. Making it through the Induction Phase of treatment with NED is as good as it gets. That news has carried me through these weeks. In spite of everything I have watched my daughter go through, I have known that we were moving in the right direction and I no longer had a looming sense of fear hovering over me. Yesterday all of that fell apart.
Izzy has developed a serious complication from transplant called TMA. It is very complicated but here’s my attempt at an overview: the chemo triggered an alarm in her immune system and now her body is attacking itself over and over again. Because of the attacks, tiny blood clots are forming all throughout her vascular system and now her kidneys. They started a medicine today that they believe can stop the attacks, but it takes time. It can take several doses and it is only administered weekly. The good news is they caught it early so they seem confident they can shut it down quickly. That’s where I’d like to end. I wish I could ask you to pray and stop typing there, but unfortunately that’s not the full extent of the news. The other news, that is not so good, is that the TMA is not the greatest concern. What’s of most concern is how long it takes the kidneys to heal and if there will be any permanent damage. Permanent kidney damage would mean she may not qualify for the remainder of treatment that we desperately want. There are other options for the remainder of treatment but we want the best of the best and you have to have healthy kidneys to have it.
Needless to say, I am devastated. It isn’t the end of the road and there is still hope but I can’t see it right now. I am angry. I am angry at myself for letting my guard down for a few weeks and I’m angry at the world for being so massively unfair.
I had originally started another post before I found out about the TMA. I left it unfinished and unpublished because it wasn’t time for it yet. I think it’s time is for today. It’s a fundamental part of our journey and today I find myself grasping for some illusion of control just like I did back then. Here it is:
Back in July I began to feel convicted about the way I was praying for Izzy. I found myself refusing to acknowledge that she was God’s child first and unwilling to care what His plan for her life was. All I cared about was my own plan for her life. I wanted her healed. I wanted Him to make the cancer go away and that’s how I prayed. But I started sensing that He wanted me to surrender her to Him.
I thought about Abraham and how God told him to sacrifice his son, Isaac. I began to think about that story and how God promised them a son and then asked for it back. Honestly, I began to think it was a pretty ridiculous story. I told Him, “I am not about to surrender her to you, so stop asking.” But I knew in my heart that He never would.
Finally, at the end of what seemed like the longest week ever, I lay in bed weeping at the thought of losing my daughter to cancer. I was so afraid of what was going to happen to her. My way wasn’t working so I finally agreed to try His.
I closed my eyes and pictured myself at the bottom of a large grassy hill. The sky was grey and overcast and on the top of the hill was a large wooden cross. In my arms I carried Izzy, wrapped safely in white robes. I carried an Izzy who still looked full of life. Her skin was vibrant and her hair was long. I knew I had to climb to the top of the hill and lay her at the foot of the cross. I began to weep in my bed. Even though it was just an image in my mind I did not want to do it. But slowly I walked to the top of the hill and laid her down. She was asleep and rested comfortably where she lay. Even though my heart really wasn’t in it, I had done it. I looked up to the heavens and waited, “Are you happy now?” But my heart wasn’t in it.
It didn’t feel complete. At first I thought it was just because it was inauthentic but then I realized something was missing. I sat in my room for a minute and waited. And then I understood. He wanted me to walk away. Taking her to the cross was only part of it, but to really surrender I had to leave her there in His care. Absolutely not. There was no way I was doing it, so I went to sleep.
But the next day I couldn’t get the idea out of my head. I still felt horribly out of control and I knew I had to do something. I couldn’t go on like this. So that night I tried again but again I failed. I tried the next night and the next one and so on. Some nights I saw myself carry her back down the hill with me and some nights I curled up next to her at the cross. But I could never leave her. Until finally, I began to realize that not being able to walk away was really more about me than it was about her. I began to learn that she was safer in His care than she was in my own. So one night I turned around and walked back down the hill…alone.
That night I had the sweetest, most peaceful sleep. And in the days to come I could truly say to the Lord, “I surrender all of this to you.” And pretty soon I felt like He gave it back to me to ask for whatever my heart desired. ****
If I close my eyes today and look at that cross I know I won’t find her laying at the foot of it anymore. I have since picked her up and am clutching her with such fear and such anguish because I have grown so afraid again. Because the pain has been to much. Picking her up has been a comfort to me, but it has done nothing for her. I am not in anyway saying God is punishing us for that. I don’t believe He works like that. But I know that He is calling me to surrender her again. My prayer is that in my surrender I will find freedom, but most importantly that He will be able to fully embrace her, like only the Heavenly Father can. And He can’t do it if I’m standing in the way.