Day 22 – Protector

“I have spent the greater part of the past (seven) months living on an Oncology floor. We live in a world of darkness here where there is little room for light to shine. Hope is something to fight for, faith is a constant choice and peace seems like a thing of the distant past. There are questions that will never get answered and a sadness that floats through the hall like the crisp autumn breeze. You can feel it against your skin as you pass someone in the hall. ”

That is an excerpt from an entry I wrote back in October and nothing I have written since comes close to illustrating what it’s like here. I have been trying to write a new post for three days but I just can’t find the words to say this time. Last night I found myself ending every paragraph with the sentence, “What kind of crazy hell do I live in?” I find myself tired and warn down after the news we received last week.

I came back from this weekend home to a fresh, recognizable Izzy. Before, she was retaining over 4lbs of fluid, her face lost somewhere within it all. Now there is definition in her eyelids, where before they were too swollen to blink, letting tears run out the outer creases. She’s smiling now and talking too. She actually started smiling on Friday but now her smile looks more like her own and it brings me such joy to see the smile that I both remember and have longed to see. It took four weeks but she has finally turned the corner.

But there is a little boy at home that waits for her. A little boy that just found out a few weeks ago when our neighbor died that people can die from cancer. Of course he asked if Izzy, his best friend and partner in the exploration of life thus far, would die. It was a conversation I had wanted to have with him but hadn’t known how to approach. We talked for a while about how there are different kinds of cancer and how it affects each person differently. And we talked about how Izzy’s cancer is actually gone now but we need to keep praying that it doesn’t come back. Then came the opportunity to talk about why it is so important that Izzy spends so much time in the hospital. Because cancer is such a very serious thing and it takes a long time to get rid of it. But now he knows the truth. A truth I tried to protect him from for a year but I knew couldn’t keep secret forever. The secret, of course, is that cancer is such a very serious thing.

All of our lives are different now and Carter’s is no exception. In kindergarten he is learning to read and write but in our own home he is learning powerful lessons on the harsh reality of life. Lessons most of us cringe at while learning in adolescence and adulthood. But none of us have any say on when they come. They just appear, like the early morning fog, clouding our view of what was so clear the night before. Making what once was clear, blurry and what once was light, heavy.

It was no secret to Carter that I felt a heaviness this weekend. No secret to him or anyone else I encountered. On the night before I came back to the hospital, as we lay in bed, he reminded me that I forgot to pray. I prayed for God to get us through this difficult time and for Him to continue to heal Izzy. Then he told me I forgot to pray for him not to have nightmares. He is my timid child and finds comfort in God as Protector. I asked God to cover him with peace that night and to protect him from any nightmares, secretly wondering what horrors had been plaguing him in his sleep. We lay in silence for a while when he suddenly reached his hand over and put it on my face. “I will always protect you, Mama.” He could not see the tears that filled my eyes or know how desperately I longed to feel protected too. But for him to offer me the thing he was in desperate need of himself, was so selfless and heroic. “You are so amazing,” I told him. “It’s my job to protect you, buddy. It’s just your job to be a little boy.”

Hope is something to fight for, faith is a constant choice and peace is a thing of the past. But moments like that make me want to fight, they make me want to choose, so that peace can once again be a part of the daily lives of both of my children.

Day 16 – Surrender

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.

Day 13 – Simplicity

Today is Day 13. Izzy remains mostly unchanged since my last entry. Her cells are coming in and there are small signs of progress but it is a slower process than we hoped. She’s awake now a few hours a day which is nice but she’s still too weak to get out of bed for anything, even to get on the scale. So we continue to wait. And to pray. It’s funny to me that we’re on Day 13 because she’s actually been in the hospital for twenty one days. Thirteen days inpatient isn’t too bad, but once you get around the three week mark it starts to wear on you. Everyday I see the number and I think, ‘How could we only be that far?’. I mean I get it, it’s thirteen days since the stem cells were placed. It just seems like a cruel lie.

I just got back from a long weekend home with Carter. At home I found a whole new whirlwind of emotions separate entirely from what I feel at the hospital. There was a comfort there and a peace. A sense of normalcy in doing dishes and making dinner. Until I saw it. I passed a picture of Izzy on the wall and my heart began to sink. Just a glimpse of her brilliant blue eyes and her soft blonde hair and I felt a pain so deep. It was such a stark contrast to her current state. The little girl in those pictures was innocent and free but the little girl I know has been forced to become a warrior. Thrown into a role no child should ever have to fill but so many do.

I’ve been taking Carter to the Lego Store on the weekends we spend together. It’s a special treat that he looks forward to and I don’t mind that it’s in the middle of the mall either. “Mommy, just needs to look at one more store and then we’ll get your Legos, I promise.” Okay, it’s a special treat I look forward to too. Saturday we went for our weekend outing and were both relishing in our purchases when I saw them. My heart sank once again. Three little girls skipped passed us on their way to the Build-A-Bear store for a birthday party, their hair bouncing on their shoulders. The frolicking by with laughter I could handle, but the bouncing hair sent me over the edge as I envisioned my own daughter lying in misery back in her hospital room. I saw their smiling faces and long hair and images of Izzy still throwing up blood flashed into my mind. I saw their matching bows and tights and I thought of Izzy’s skin beginning to peel off from head to toe from this last chemo. I am ashamed to say it, but I have never felt such anger at little girls as I did in that moment. I didn’t even know them or their stories and yet I assumed they led perfect lives. My eyes followed them as they disappeared into the crowd. Why did they get this delightful, innocent journey, while Izzy got a journey to Hell and back. I kept walking, the injustice heavy on my shoulders.

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This is a picture of our backyard with the creek and woods behind our house. When we first moved in a few years back I fell in love with the solitude it offered. With it’s stillness. I had this illusion that if we moved here I could force simplicity into our lives. I was naive enough to believe I had that much control over the universe. Of course I quickly learned I did not. But for the first few years we spent countless hours watching the kids throw rocks into the creek and run along the bank chasing leaves. Izzy and I would take off our shoes in the summer and wade through, feeling the cold mud between our toes.

As I found myself staring out the back window this weekend, grasping for something in the stillness of the woods to dull the pain, I had a revelation. I got the simple life I wanted, it just cost more than I ever dreamed it would. Through this journey everything in my life has been hacked away so that the only things left of any real importance are the most basic, the most simple. Some of that has been hard, but the truth is some of it has been freeing as well. The day to day is complete chaos, but when it’s all said and done my mind is no longer cluttered with the ramblings of perfectionism or illusions of what life should be. It isn’t wrapped up in some unattainable ambition. Now my mind is free to focus on what truly matters, nothing less and nothing more. Before cancer I never had time to be still. But now, sitting in the hospital next to Izzy, I finally do. It took watching my four year old daughter fight like hell and wondering desperately if she’d win for me to finally stop overcomplicating life. I used to long for simplicity and I finally got it.

Day Five – The Darkest Corner

It is in the moments of her deepest suffering that I ask the greatest questions. Questions to a Father I know is listening but gives me no explanation despite my desperation. “Is there no other way for redemption but this?,” I ask, gazing at her lifeless body in the bed. There is a darkness in her now. Her face is painfully ill to look at. Even the whites of her eyes are grey. They stare off into the distance, at what I’m not sure. “When is enough, enough?,” I plead, blood dripping from her lips after she throws up. Her mouth and throat are painfully raw and still have nearly a week until her recovering counts will bring them any relief.
There is a pain pump next to her bed sending a small dose of morphine into her body. When she presses the button it beeps letting us know it has administered a dose. If she presses it again too quickly it beeps three times letting us know it’s not time for another dose. She can’t hear any of the beeps. A hearing test back in December revealed she has lost 50% hearing of high frequencies. A permanent effect of chemo. After transplant we will test again to see the full extent of the damage and they expect she will require hearing aids. I have said it’s a small price to pay, but I’m not the one paying it. It strikes me differently now watching her in her greatest place of suffering, not being able to hear the beeps that bring her even the smallest amount of relief. “Did it beep?,” she mumbles, trying not to move her lips.
This is just part of the road to recovery. The mucositis, the inflammation of your mucus membranes, is getting a little worse everyday. She’s producing so much mucus right now that her throat is filled with it making it difficult to breath. We continue to give her oxygen when she needs it and they’ve done three chest X-rays to keep an eye on her lungs. She has a fever that comes and goes. It’s hit 105 at it’s worse and never goes away completely for more than a couple hours. This is just part of the road to recovery.
It changes you, watching your child live and beat a disease like this. Whenever I talk to parents about their unique experience we all stand in agreement about one thing: it changes us. But it does not define us.
I have stood in worship services with hands raised in the air and praised The Lord. I have seen the hands and feet of God work while serving the poor and praised The Lord. I have even sat in the peace of my own room in silence and praised The Lord. But until I could stand in the darkest corner of pain and loneliness, of grief and helplessness and still praise The Lord I didn’t know what it really meant to.
You will never hear me say that I accept what Izzy has gone through has been from God, so don’t hear me say I am praising Him ‘for this’. But this journey has fundamentally changed the way I view tragedy. I used to believe that we walked along the road of life and that God sat up high in the heavens with a bucket. He would look down on us from time to time and throw junk down into our lives. But now I believe God is down here walking along this road with us. The junk is just already in the road. He doesn’t throw it at us, that is not consistent with the nature of a God who would die for His people. Among other things, I will never believe that we serve a God that gives children cancer. Since I don’t hold Him responsible, that means I can still stand in my daughter’s hospital room in the moments of her greatest suffering, asking Him questions, yes, but praising Him still. He is still a God worthy to be praised.
I do not believe that ‘God never gives us more than we can handle’ because I don’t believe He gives us this kind of ‘junk’ to begin with. I praise my God for that. God cringes at the sight of what these children experience and I praise my God for that too. He is standing with me in the darkest corner of pain and loneliness, grief and helplessness and for that, I praise The Lord.

Day One

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This picture was taken on Izzy’s first Day One. This was her first chance at life. I always said that she was ready for the world the moment she was born. She came out looking around and it was days before we ever heard her cry. But when she did it was strong and fierce just like her. I, of course had no idea just how strong and fierce she would need to be to survive. More than likely, in this picture there were already tiny nerve cells yet to form. Neuroblasts that would form a mass in her adrenal gland years later. We can say that this photo was her first chance at life, but in reality it wasn’t a fair one. This stem cell transplant is providing a second chance that will even the playing field. This time the odds are not stacked against her.
Today is Day Zero. Her cells should be placed today but because of the time chemo wrapped up earlier in the week she won’t get them until tomorrow, Day One, at 10am. The process of placing the cells is quick and simple. They will run into her central line for all of ten minutes. That’s it. The real work has been the blood and sweat she has poured into the past six months getting her body ready, slowly destroying each and every cancer cell in preparation for this big event. This round of high dose chemo has not hit her nearly as hard as it hits some. Probably because the other six rounds took such a toll. She is very tired, with mild symptoms, but she rests peacefully waiting for her second chance.
Her name is Israelle, our feminine take on the name Israel from the Bible. When I thought of the nation of Israel as God’s chosen people I thought it was a beautiful name for a child. But I never studied it’s meaning. A few weeks after she was born I remember someone asking me why I would have chosen that name. I responded by telling them that the the nation of Israel was God’s chosen people and that the bible was filled with promises to Israel. He then went on to tell me that Israel meant ‘he who wrestles with God.’ I was mortified. Perhaps it had been a poor choice? It wasn’t until after her diagnosis that I really began to press into the meaning of the name. The first time the name is used in the Bible was when it was given to Jacob in Geneis 32:28:

“Then the man said, ‘Your name will no longer be Jacob, but Israel, beause you have struggled with God and with humans and have overcome.'” (NIV)

And it wasn’t until then that I found out that ‘he who wrestles with God’ was only part of the meaning. The full meaning is ‘he who has wrestled with God and man AND OVERCOME.’ And overcome. What an important part of it’s meaning.
Tomorrow just like you name a child on the first day of their life I want to affirm Izzy’s true namesake. She is not just God’s chosen one. She is not just one who has wrestled with God. She has wrestled with God and man, but by His incomparable grace, she has OVERCOME. Israelle is a true overcomer.
Last week I had curled up with her to take a nap and after she thought I was asleep I heard her talking. I opened my eyes briefly and saw her looking up at the ceiling. This is what she said: “God, you’ll always take care of me, right?” It was the first time I had ever heard her ever go to The Lord without my prompting. The first time I had ever heard her come up with her own question for Him and just ask without hesitation. It was sweet, but what blew me away, was what she said next. In one word she answered her own question with a declaration, “Forever.” If you want to pray for Izzy in the days to come, I would ask that you don’t echo my cry to the Father but echo hers. She knows what she needs and she knows that He’s good for it.

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