Stability

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I struggle with this place that we are now, this place of STABLE disease. There are moments of each day were I feel exceeding joy that Izzy is still alive. That she is in school and playing soccer and enjoying being a child. But those moments are always followed by fear of the future and grief of the past. STABLE. It means she’s not sick but she’s not better. It means we get to take a deep breath as we wait to see what’s coming next. But how deeply can you breath when you know there is still a spot, still nodules, still a lesion? These places are not active disease but they are still places.

This picture was taken almost a year ago when Izzy gave a kitten from our litter to our neighbors Tim and Lori. Patches, they called her. In March Tim died from a long battle with pancreatic cancer. In the days leading up to his death Patches was by his side constantly. She was his fearless companion to the end.

The night Tim died I lay in bed with Izzy talking for a very long time. She had the kind of questions most kids have about heaven and leaving our bodies behind. But she also had lots of questions only someone fighting cancer can come up with. Questions I wish my child couldn’t even begin to formulate at 8 years old. She didn’t understand how cancer can move from one place in the body to the next. She couldn’t understand how chemotherapy could stop working. As I lie in bed listening to her  my heart raced faster and my lungs took in shorter breaths.

“Did he know he had a cancer you can die from, Mommy?,” she asked, beginning to put the pieces together about this horrible disease. I told her that he did. “Did Miss Lori know?,” she continued, wondering about his wife. I explained that they both knew and had known for a while. “So, if someone has a kind of cancer they can die from, they know it, right?,” she asked and tears began to stream down my cheeks in the darkness. My heart was racing so fast I could feel it in my chest. I couldn’t take in enough air, couldn’t believe she was digging so deep. I didn’t know how to respond but knew that she couldn’t live everyday in the same fear as I.

I cleared my throat and asked God to guide my words, “Yes, baby. People know when they have a kind of cancer they can die from. The doctors tell tell them.” We lay in the darkness for quite sometime before she replied. “I’m glad I don’t have that kind of cancer,” she said and snuggled into me closer. “Me too,” was all I could muster out. What I had said was true, she didn’t have Pancreatic Cancer.

We lay in bed that night and cried together. She cried because Tim was in heaven. She cried because she was sad for Miss Lori and sad for Patches. I cried for that and all the other reasons you can think of. As she began to sob, I began to pray. Prayed for Miss Lori and Patches and all of Tim’s family. Prayed for peace and prayed for God’s presence to surround them. And of course I prayed that God would keep Izzy healthy and strong forever. That He would fill her with His glory and His love for all the world to see.

This weekend we are leaving for Disney World for a week.  Like every day of my life right now it will bring an enormity of emotion. I will celebrate that she is alive and running around with the joy of every other child. But I will grieve as I look at the others. I will envy their innocence. The purity that is inside their bodies. And, like always, I will wonder if Izzy will ever get to go back. I will ride rides with her and take photos and wonder if this will be her last trip to the Happiest Place on Earth. I will wonder if there will be a day I have to go back without her.

Weeks after Tim’s death Izzy and I ran into Miss Lori on our evening walk with our little dog, Rosebud. We chatted with her for a bit and then continued down the street. Izzy told me that she thought Miss Lori looked sad and I told her she would probably be sad for a long time because she was learning to live without Tim. We walked in silence as she thought about it.

“Someday she will learn to live without him,” she said. I agreed, helping her pull the dog  back to the road. “But you know,” she said with a pause, “that will really be the saddest part of all.”

Emotionally, Izzy is the most stable of us all. She doesn’t know the things the rest of us do and yet she somehow manages to know more than I am ever prepared to hear. Daily she teaches me about life and daily she challenges me to live more fully. For what it’s worth I think she’s right. The saddest part about loss is probably not in the losing but in the living that follows. And I pray daily I never have to learn to live without her.

Blessings on you today, continued grace to Miss Lori and LIFE for Izzy.

 

March 14 – Four Years Later

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Four years ago I was on staff at a church preparing for the celebration of Easter weekend. Each year from Ash Wednesday to Good Friday we would hold Forty Days of Prayer in a Prayer Room that had been built in the back of our sanctuary. During that season of Lent someone would be praying in the room twenty four hours a day. Some would sign up for an hour shift, some two or three. Some would sign up as individuals, some in groups.

The room held various stations to help facilitate your time of prayer. One could write, listen to music, paint or draw. There was a map on the wall to pray for different places across the globe, an entire wall where you could pin your own request for others to pray for. There was a desk, an alter and the place I always found myself, a cozy couch tucked away in the corner. It was home to soft fluffy pillows and fuzzy throws and had a space heater right next to it. I would often snuggle up with a devotional or my journal and spend moments in my own thought and then wait for Him to speak.

That year I found myself in the prayer room on March 14th. Towards the end of my hour shift I gravitated towards a table in the middle of the room that held a large bowl of note cards. Each little card had a verse on it. I reached in and pulled one out that read, Isaiah 43:2. I pulled out my bible and read the verse.

“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.”

I made a notation in my bible that I had found the verse on a card in the prayer room that day. That night at home I would also make a note in a devotional, adding I didn’t really want that verse and had looked at some other verses and wished I had pulled out one of those instead.

That would be one of the last times I was ever in the Prayer Room. Three months later Izzy would have a followup scan and the next day I would walk in requesting a leave of absence. That leave of absence would turn into the inevitable resignation I would require to care for Izzy during treatment.

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Last Sunday, March 13th, I was reading before bed and I came across those notations on the March 14th page in my devotional. “In the Prayer Room tonight found card with verse Isaiah 43:2. Wished I would have gotten a different one like…” So, I grabbed my bible and flipped to Isaiah 43:2. Sure enough, there was a similar notation at the top of the page. As soon as I looked at Isaiah 43 I wondered why I had not spent more time in it for the title of the passage is: Israel’s Only Savior. I started reading and instantly my heart began to grow with excitement. Verse One: “…Fear not, for I have redeemed you; I have summoned you by name; you are mine. Why have I not been reading this everyday of my life? Then as I read the passage given to me four years ago my mind instantly flashed back to the drawing Izzy had done of the leaf that never burned.

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In the fall of 2013 while still in treatment she drew this image. She told me it was a leaf next to a bonfire and she was so excited about it. And then she told me that the leaf never went in the fire NO MATTER WHAT.

The more I remembered and the more I read the more excited I became. I kept reading. Chapter 44: Israel the Chosen. For the first time in a very long time I had hope.

The next morning, March 14th, I woke much like I do everyday but there was a little deposit of something new in me. We got Carter on the bus and then Izzy and I headed to her regular pre-chemo appointment in Cincinnati. I drove through the rain in silence as she slept and my mind wandered back to all the things I had seen over the years. Questions that have no answers raced through my head and by the time I pulled into the parking garage I was a nervous wreck. It was as if I had re-accepted that the doctors had told me my daughter had a cancer with no cure and she would be on chemotherapy all of her life until it no longer worked. As if the hope from the night before had been washed off by the rain during the two hour drive.

We walked down the long corridor of the hospital, got checked into our room and soon they accessed her port and drew her labs. The nutritionist stopped by, our care manager and finally our oncologist made his way in. After a few minutes of chatting he got serious.

“I want to talk to you about something,” he said sitting on his stool, spinning from Izzy back to me. I didn’t like it when he got serious. I just looked at him and he continued. “I think we might want to consider stopping chemo.”

I. Froze. He had said we never would. He had told me she would be on it forever. “I don’t understand. Why would we do that?”

“Well she’s doing really well and she’s stable. She’s been stable since we started,” he said building his case. I just stared at him blankly with shock and fear and joy and more fear. He could see the uneasiness in me, “Why do you hesitate to stop, Molly?”

I started putting pieces of words together that I’m not convinced only made partial sense, “You said we would never do that. I said I wanted that and you said we wouldn’t. And the spot is inactive but there are nodules and and no one seems to know what these nodules are. I’m worried about the nodules.”

“I’m optimistic. I have to be optimistic in what I do and right now I don’t have any reason to believe those nodules are of concern,” he said.

“Well I’m pessimistic and you know that,” I said laughing. He laughed too but then he said the thing I wasn’t prepared for. The thing I could have never been prepared for.

“Aren’t you a person of faith?,” he asked and there was silence. Did my doctor just ask that? What was happening? But I continued breathing.

“I am,” I said without hesitation.

“Well I know you have way more faith than me. So maybe with my optimism and your faith…”

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March 14th 2012 the Lord gave me a verse. I’m not so sure I would have been ready to step out in faith like I was on March 14th, 2016 without it. Or without the picture that Izzy drew in the middle of it all. Perhaps the Lord knew that and perhaps that is why He allowed for it to play out like this. Because now these pieces that have been lining up over the years have prepared me to step out to a place my emotions would have otherwise prevented me from going.

Izzy did start chemo today but in two weeks she will go back for quarterly scans. If those scans show that she is still stable we will stop chemo and just wait and see. I will tell quite honestly that I am terrified. But I will also tell you that I am hopeful.

Blessings on you today and LIFE for Izzy.

 

 

 

 

 

 

 

 

 

 

 

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Season of You

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Dear Izzy,

You are eight today and and you are beautiful. For your birthday I pray for a miracle. I pray that you are alive in another eight years to read this. I will not write this post about the things I wanted for your life. The things I covet. Things I cannot give you. I will not tell you about the fear I have for tomorrow. All I will do is tell you how beautiful the past eight years have been to me. And when I’m done writing I will pray for more.

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A long time ago I dreamed of what my life would be like as a mother. Dreamed of all that would come from carrying tiny ones within my womb. Raising them, falling in love with them and then, ultimately, releasing them into the world. As it came to be, the things I thought would be hard turned out not to challenge me so. And the things I had not even considered, well they turned out to be the hardest.

I, as most first-time mothers would say, was not prepared for the birth of your brother. He and I, we learned together. The nursing, the napping, the whole ‘learning to love someone you’ve never even seen before’ bit. But we did great together and we formed a special bond. Thinking I had mastered the ‘baby phase’, I felt fully prepared for your arrival. How funny.

Never one for sharing, you didn’t want to be lumped into the ‘baby phase’ I had already experienced. You wanted your own. And so the Season of You began. At times it was a very exhausting season, but it was still a season marked by beauty through out. It was not until the Season of You that I would learn to love like I have never loved before. Or that I would fully learn what loving was. It was then and only then that I would learn to embody the word as it was meant to be embodied. It was in this Season of You that who I was and all I would become was drastically redefined. Because of your suffering I would be stripped of all I had ever believed about the world. I would wake up one day, no longer disillusioned by it’s promises of entitlement, realizing a blessing for what it truly was.

In all my dreams of motherhood I thought I’d pass down to you much. But instead, you came with sparkling bags packed full of your own spiritual gifts. The beauty with which you distribute them stretches me to new places. I am inspired daily as I watch your gifts unfold.

You carry with you a spirit of grace. Your careful actions bring peace, your gentle words cause pause.

You carry with you a spirit of power. You fight with the same fearless tenacity as you love.

You carry with you a spirit of joy. From the hugs you give to the hand written notes you leave behind, you deposit pieces of joy everywhere you’ve been.

You carry with you a spirit of hope. Believing that God has healed you, you make all who know you want to believe it too.

The truth is, Israelle Marie, when I wanted to be a mother I had no idea what that meant. Had no idea the capacity my heart could have to love. Or to break. But you, you ARE a Chosen People. You ARE a Royal Priesthood. It is part of the beautiful calling that is on your life.

When I wanted to be a mother I never in all my dreams could have imagined that you were part of the plan. I was so unbelievably unprepared for the Season of You that was our road ahead. But I am honored to be on this road. Because this? This. Is. Love.

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Blessings on you today and LIFE Izzy.

The In Between

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The past few weeks have taken us through the ups and downs that are our life. The unforgiving, rocky terrain that is a journey through childhood cancer. I have been forced to remember the thing I have gotten so very good at forgetting. To remember the thing I have pushed so far back in my mind, so far deep in my heart. To remember that Izzy has a cancer that has no cure.

Three weeks ago today Izzy became ill in the middle of a regular course of her at-home-chemo. She stopped eating or drinking anything and began to not tolerate the tube feedings she receives overnight. Eight days went by with nothing of any substance staying in her. Every day she grew more and more weak until eventually she was admitted for six days. Seeing her so lethargic took me back years ago to the treatments I used to watch her go through. To the way she used to lie around so helplessly ill and I would stand by her side feeling so completely inadequate as a mother.

We got through the admission. They pumped her full of fluids and eventually her stomach began to calm down. We made it through that little valley we weren’t expecting and much to our surprise there was a hilltop of joy waiting for us as we climbed out.

Throughout this past week she participated with the students of Fishers High School in a Fashion Show and Dance Marathon to raise money for Riley Children’s Hospital. Those students embraced her and loved her with their whole hearts. They fell in love with my Izzy and she fell in love with so many of them.

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She spent three evenings with them this past week, laughing and dancing and soaking up the selfies. The night of the fashion show the other models were sitting in the front row with their parents but not Izzy. She was backstage with the high school kids all night. She ran around with them all week like she was one of them and it was so important to me to just let her.

When I look back on the two weeks in comparison, the one she spent in the hospital and this past one she spent with the Fisher’s kids, I have to say that there was one week immensely more painful for me than the other. I wish I could say it was the one she spent in the hospital, but it was not. I’m used to seeing her in hospital beds. I’m used to seeing her as a child that is sick.

What I’m not used to is thinking about the high school years for my kids. Just a year a part, she and Carter should spend three years in high school together. But this past week as we stood in the high school, long deep breaths of sadness filled my chest. The medical community says she will never go. Not to high school, not to prom, not to spring break. They say she will never make it there with her brother. So as I listened to her squealing all the way home from the high school each night, silent tears fell down my cheeks in the darkness. For I know the thing she does not know.

I believe God can heal her, I do. I still lay hands on her tiny body every night and ask Him to. I declare that she is free of disease. I declare that she is filled with His goodness and His glory. But somewhere between our will and God’s will is everything that happens in between. Somewhere there, in the in between, is all that we will never understand this side of heaven. And I have to be willing to accept that.

I am so grateful to the all the kids at Fishers that loved Izzy so well this past week. So thankful for the time you took out of your schedules, the effort you put into making a difference and the compassion you demonstrated by embracing this cause. I like to think that she helped each of you to see that behind every great cause are real, live people with real, live, but sometimes heart breaking stories.

I do hate this journey but I wouldn’t trade it for anything in the world because this journey was custom cut for me with Izzy in it. Yes, I want more for her but this is what we’ve got. She’s worth the rocky terrain, the uphill walk both ways, the sleepless nights and the constant flow of tears. No matter what happens, when it’s all said and done I’m so proud to say I AM her mother. Always and Forever.

Blessings on you today and LIFE for Izzy.

**Medical Update: Tomorrow morning Izzy will start another 2 week cycle of chemo. Please pray this one is easier for her. It will end on Friday, March 11th, her 8th birthday and we would like to stay out of the hospital so she can celebrate all weekend.

We go back for quarterly scans the last week of March. So far, the spot has remained inactive since we began this chemotherapy but we’d like it to go away. In addition the last scans showed nodules in her lungs and liver that we’d like to see gone too. They aren’t active either but we don’t like them. Thanks for praying.

 

Beauty From Ashes – December 23rd

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Weeks ago I lay in Izzy’s bed late at night talking about Christmas. We talked about baby Jesus and how she wanted Grace, the American Girl Doll. We talked about the animals that were probably in the barn the night He was born and we talked about how Christmas was really about his coming into the world. She said she knew all that but had counted the presents under the tree and she still wanted more. I smiled and reminded her that some people wouldn’t get anything for Christmas this year. She was stunned.

“But why, Mama? Why would people not get presents?,” she asked, her world suddenly widening.

So, I told her. I told her how blessed we were to have things like a house and a car and food in our cabinets. I told her that things like presents and toys were all extras. And then I asked her if she had seen the people sleeping on the streets a few nights back. She told me she had not and she was confused that some people didn’t have homes. She grew angry. At me.

“How could you have just driven right by them? How could you not have stopped?”

“Izzy. What would I have stopped for?,” I asked, so proud of the compassion rising up in her even if it was misdirected in anger towards me.

“To bring them home with us,” she said. “They can’t be out there, it’s too cold.”

“Baby, we can’t bring them home with us. They are people. They don’t want to come to our home, they want their own,” and I continued talking about their lives, who they might have been and how they might have gotten there. At that point she wasn’t listening to me anymore, she was dreaming up her own plans.

“They need blankets. We have to take them blankets, Mama.”

And that’s how it started. A seed was planted in her heart for “people with no homes” and she began to talk about them each night. Some nights she would talk about ideas she had for helping them and other nights she would just cry for them. When I would pray for her, thanking God for her and asking Him to protect her forever she would remind me to pray for the people with no homes. She wanted me to always pray for God to protect them, to keep them warm and to help them find homes.

I kept putting off the blankets. I was busy with work and life and our own Christmas stuff. But she was insistent, “when are we taking the blankets to the people with no homes? I will give you all the money in piggy bank to help pay for them.”

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Four years ago on December 23rd we got the call that would change our world forever. The call that said Izzy had cancer. I still remember sitting in the rocking chair in her bedroom listening to the doctor’s words. I remember sliding off of it onto the floor in disbelief. It couldn’t be.

But it was to be. I never could have imagined what the next four years would have in store for us. How difficult the journey would get. How the years would change me. How my heart would harden and thaw over and over again through re-diagnosis, remission and relapse.

Yesterday morning started off just like most every morning has for the past four years.

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We unhooked her formula from the night before, gave her her morning meds, then waited an hour and gave her her chemotherapy. But after that, well after that we gave Izzy the day she had been wanting. We headed downtown to pass out blankets…and cheeseburgers too.

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She signed all the cards and decorated the wagon while I tied the sparkly red ribbon she had picked out around the blankets. As the morning went by she grew more and more excited. Daddy came home from work early and the four of us loaded into the car with twenty blankets and headed joyfully downtown. And then it started pouring. I mean wind blowing, tornado warnings, pouring and we had a wagon decorated with Christmas lights and a card board sign filled with fluffy warm blankets.

So we are driving downtown in this storm, Carter is freaking out because he’s terrified of storms, Izzy is getting carsick from the chemo because we can’t have the windows down and Kendrick and I are arguing about how many cheeseburgers to order. Everyone has a different idea of how we should change the plan because of the rain and I am just pissed. Nope. We weren’t changing anything. We were walking around that damn circle and Izzy was going to pull that wagon she decorated. The end. So we did.

We walked around the entire circle in the pouring down rain (covered each blanket in a plastic bag) and Izzy found one person who had no home. A man named Richard. We told him how significant today was for our family and how much Izzy wanted to pass out blankets. He was so blessed to get a blanket from her.

After that we loaded up the car and drove around finding people to pass out the other blankets too. We didn’t get to use the wagon but we got out of the car each time and the kids got to pass them out themselves. And it was beautiful. And it was redemptive. And it was an act of love birthed from a child who has suffered much.

It’s been four insanely long years but here we are and here she is. She is still alive and fighting and while this isn’t the path I wanted for any of us I can see redemption in it. I can see power in it. I can see God’s hand on her and all of us. But most of all, after days like yesterday, I can see the beauty that has risen from the ashes.

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Merry Christmas to you and LIFE for Izzy.

Emmanuel

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There is a stirring in my heart that has begun. Days ago we got our first snow, prompting me to get out the tree a little early. To bring in the aura of Christmas before the turkey was even bought (as if I cook a turkey anyway). But my planters are still on the deck. The pillows are still on the outdoor furniture and I was not quite ready for the seasons to change. But they did and they do.

So this stirring, it is found in the looking at this tree. In the remembering of all the things this tree has seen and in the wondering of the things it has yet to see. I have found I cannot sit alone with this tree and not be overcome by emotion. For there, in the silence, I begin to walk back through the Christmases.

It was 2011: Izzy had just been diagnosed on the 23rd. Surgery was scheduled for the 27th. We sat around the tree that morning in a puddle, neither child knowing why. That morning there was devastation.

It was 2012: Izzy had been discharged from the hospital on Christmas Eve. She had been in ICU in septic shock from a line infection. Once things had settled down they sent her home for a week. She was scheduled for Stem Cell Transplant on the 31st and would spend four consecutive months in Cincinnati. We were afraid of the months ahead but so grateful for her life. That morning there was thanksgiving.

It was 2013: Treatment had ended just two months ago. The nightmare was over. That morning there was joy.

It was 2014: Izzy had been in remission for over a year. It was starting to feel like I might not wake up every day wondering if the cancer would come back. That morning there was peace.

I put the tree up on Saturday and I went three whole days before wondering: how many more Christmases with Izzy will it see? The question broke me.

My brain tells me not to go there. My heart tells me to stay in the present and cherish every second I have with her. My spirit tells me to have hope, to have faith. But there is a thread that ties all of those pieces of me together. A thread that keeps those pieces in tact on days when they might otherwise fall apart. That thread is the core of who I am. It is knotted with deep pain and deep fear and it comes from the spool of reality.

Keep it light, right? Just talk about the everyday, right? This has been the everyday this week. It has been mine but it has not been hers.

She was so excited about the first snow. So excited about the setting up of this tree. She sat on the couch and watched as Kendrick slowly lifted it in the air piece by piece. She watched the lights as they were wound and the berries, and delicately she began to lay out each ornament in order that she would hang them. She pulled each one from the container, making piles: ‘favorites,’ ‘sort of favorites,’ ‘ones she was willing to hang but didn’t really like’ and ‘ones she wasn’t interested in at all.’ She was getting so anxious during the placing of the lights that she suggested perhaps our tree didn’t actually need lights at all. But once we turned them on she changed her mind and was ecstatic about their twinkle.

After the tree was complete she asked for the Nativity set which we had not really wanted to tackle on this impromptu Christmas decorating day. Still we got it out and she set under the tree, carefully placing each shepherd, each goat, each wise man around the Savior with care. Carter came out of his room for all of five minutes and found the whole thing entirely too boring which did not surprise me for a nine year old boy.

I am learning to be okay with the differences in who they are and in where they are. Learning to be okay that Carter’s Christmas list is over a thousand dollars long and Izzy’s is still completely blank. What could she possible ask for? She has everything she wants and the very thing she needs, well the doctors say it’s off the table for her. I know the current state of Izzy’s health is confusing. We keep getting good scans, what they call ‘stable’ scans. But her medical chart reads: Stage IV Relapsed Neuroblastoma. And to the medical community that means: terminal. But she is here today and she remains vibrant as ever.

As I was laying on the couch yesterday, looking up at the tree that has seen so much of our life, I noticed the cross that is above it. My thoughts stopped. My perspective broadened. I realized that cross in my living room has not just seen our months of December, it has seen all of January through November as well. It has seen every day.

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The cross has witnessed Izzy as she has lay on the couch with Kendrick holding her tub to vomit. But it has also seen her sit on the floor with her American Girl dolls. It has seen Carter as he lay on the floor with a book to take him somewhere, anywhere and yet watched him run through the room with his friends laughing. It has seen me on the couch typing hours at a time and watched me stand in the kitchen drinking glass after glass of wine, trying desperately to numb the pain. It has seen the mornings before school, the nights before bed. The board games, the puzzles, the laughter, the tears. It has seen it all.

Emmanuel: God with us. Always. Not just on the bad days. Not just on the good days. Not just the desperate or the victorious. Not just on the days we’re proud of or the days we’re ashamed of. It sees everyday. And it sticks around. Emmanuel.

Happy Thanksgiving. Emmanuel and LIFE for IZZY.

 

 

 

 

 

Everyday Kind Of Beautiful

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A little over a week ago I found myself in the foothills of southern California in a little town called Ojai. It’s the kind of place that’s so tiny you can find your way around after five minutes. But it’s the kind of place that is so far removed from reality you get lost there after five seconds. For four days I sat around fireside with a group of women on a retreat and together dug to the darkest places of our souls. We wrote pieces of our stories and shared them over and over and over again. And then it ended and we all went home.

As my plane landed last Monday morning my own reality seemed too unbearable to come home to. I stood in front of my seat and let several others exit the plane before me for I was in no hurry. My eyes were tired and my body was heavy and I wondered if maybe I could stow away on the plane for a day or two. Maybe then I would be ready to go back to my reality but I knew the answer. Never would there come a day that I would be ready. So I just went.

I walked upstream through the terminal of hurried bodies. My mother was waiting for me in her car out front and once I saw her I walked faster toward the door. Reality would not wait. I gave my mom a hug, put my luggage in the trunk and got in the car against my will. My home awaited.

This is the place where I began to feel guilty. I knew the other moms were so excited to get home to see their little ones but I simply was not. Seeing would be acknowledging. Embracing would be accepting. The truth is I liked talking about the story as though it was someone else’s. But walking through my front door would force me to acknowledge that reality was my own.

Soon we were pulling down the street and before I knew it I was home. Carter was the first to greet me. He came out of his room, messy hair, sleepy eyes and tied his camouflage robe at the waist. He smiled big with squinty eyes still half sleeping and then buried his face into me, “Hi Mom.”

“Hi Baby,” I said, holding him close. We walked to the couch to sit down, arms around each other.

“Mommy,” I heard, as Izzy raced down the stairs. “Mommy, mommy, mommy.” She ran to me as fast as she could and soon I scooped her up into my arms. I wanted to cry because this tiny place of my heart thought maybe when I returned it would have all been a dream. Maybe she wouldn’t have lost her hair. Maybe she wouldn’t have a g-tube or need all the meds. Maybe, just maybe, she wouldn’t have a cancer they said could not be cured. But as she melted into my arms reality invaded that tiny place of my heart. My baby did have cancer.

I sat on the couch that morning with both of my children, grateful they were alive for me to come home to. I listened to stories of their weekend and held them tight trying my hardest to stay in the present moment.

I don’t write much these days and honestly it’s because I’m always waiting for the next big event or this next big thing to say. But the truth is Izzy’s story is more than just those big things. Those things are just big rocks along the road. But Izzy’s story isn’t just the big rocks – it’s the entire road. It’s long and winding, beautiful and broken. There are places of gravel along the way, cracks from the summer’s heat and sometimes, sometimes there are big rocks. But in between each one it’s just a road. Just a journey like your kid is on. It’s filled with bike rides and tea parties, soccer practices and sleepovers.

I don’t want to be so caught up in waiting for the big rocks that I forget to write about the regular stuff on her journey too. That’s really the stuff I want to chronicle. Those are the things I want to remember forever. Things like how she likes for me to hold her hand at night when she falls asleep sometimes and other times says, “I’m too tired for you, please leave.” That’s the good stuff friends. The everyday beautiful.

In the future I’ll be writing more about our days and the moments that have made them special. You can expect to see more from me but it might not be as dramatic as it has been in the past and I’m okay with that. This, is Izzy’s Story. It’s a chronicle of her everyday and the beautiful that is in it.

That morning that I flew in from California I got up from the couch snuggling to look in my suitcase for the treasures I had got them there. While I was digging Izzy came up behind me with an envelope, “I made this for you, Mommy, while you were away.” I stepped back from the suitcase and took the envelope gracefully into my hands.

“Where did you get this?,” I asked, pointing to the sticker on the front.

“I found it downstairs on the floor. In front of the dresser,” she said and my mind flashed back to the mess I made of the craft drawers right before I left. Inside the envelope was a little note that said, “I Love You.” But outside. Outside was the real treasure. On the envelope, surrounded by her hand crafted decorations was a scrapbooking sticker that read, “May the Lord watch between you and me when we are absent from one another.” Genesis 31:49

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And that’s just Izzy and her everyday kind of beautiful.

Blessings on you today and LIFE for Izzy!

A Celebration of Unawareness

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September. Summer’s heat meets Fall’s crisp air and school is back in full swing as if it never stopped. I sit out on my deck this chilly Sunday morning with my coffee and my headphones listening to the same old worship song on repeat over and over again. Just this week I received some photos Izzy and I had taken at the hospital through an amazing program called Flashes of Hope and I am waiting for them to download. I scroll through them with different eyes this morning because it is September and it is Pediatric Cancer Awareness Month. Though I have had a child which brings an awareness to this injustice for almost four years now, I still look at each photo in disbelief.

Four years ago something like Pediatric Cancer Awareness Month would have certainly meant most nothing to me. Because I could not understand. Because I was not aware. All month long I have wondered what to say to my small world to help bring more awareness. But the truth is, if you have followed our story, if you know Izzy exists, then you are aware. I could take you down the dreary journey of a day in my mind or a day caring for her. But I will not. For that is a hopeless path that gives glory to the enemy and what he has stolen and I simply will not go there.

For some reason greater than I could ever understand this is the journey the Lord has allowed for my family. I will not choose to invite you on a journey of awareness with us today. What I will do instead is invite you on a journey of unawareness. An unawareness that is Izzy’s. What I will do, in this month of Pediatric Cancer Awareness, is choose to focus on all that Izzy is unaware of. And I will ask you to celebrate and give thanks for that with me.

Just this week we were at a hospital and the registration clerk was being silly as she checked Izzy in, “Are you married, Miss?”

“No, but I want to be,” Izzy smiled and looked at me in the chair next at her. Her eyes went back to the woman across the desk, “And I want to have babies too.”

Izzy is unaware that the medical community has placed an expiration date on her forever. It has never occurred to her that she might not grow up and get married or have children. She still dreams of being a bride, of wearing a beautiful wedding dress on her wedding day and of having babies. She still dreams without hesitation and walks forward everyday with hope for her future. She is unaware of any reason not to and I am so very thankful for that.

Not long ago we were at a playground and a little boy asked why she didn’t have any hair. The truth is, Izzy is unaware that one can slide back and forth on the spectrum from ‘survivor’ to ‘fighter’. She was given the title ‘survivor’ once and still she claims it. Her response to his innocent question had nothing to do with the chemotherapy that she knows she takes. The chemotherapy that she knows has taken her hair. Her response to the little boy? “I don’t have any hair because I am a cancer SURVIVOR.” Perhaps she is unaware that she ‘should’ say she is fighting now or perhaps she is declaring her own destiny. Either way I am so very thankful for that.

Izzy is unaware of life before cancer. That is a one of the hardest things for me to be thankful for but I have no choice because, diagnosed at three, it is simply all she knows. Izzy is unaware of what it was like before she received the bulk of her caloric intake through a tube in her belly overnight. Unaware of what it was like before ulcers lined her esophagus and as they healed it narrowed. She cannot remember the months of vomiting blood and not being able to swallow that has given her an aversion to food. She is simply unaware life was ever any different. As hard as it is, I am so thankful for this unawareness for then she would mourn as I do.

Izzy is unaware that she used to be able to hear perfectly. That she could hear me whisper, “Goodnight love,” in her ear at bedtime. While she recognizes the difference in her hearing with and without her hearing aids, she doesn’t remember a time that she could hear perfectly without them. Her feeding pump often goes off at night, beeping for some unknown reason – kink in the cord, air in the line – but she can’t hear the high pitched noise. A noise we can hear on other levels of the house. She is unaware the pump is beeping and unaware the damage chemotherapy has done. I am so thankful for that.

Izzy loves to look back at her baby books. She loves babies so she loves to see herself as one. I on the other hand can hardly sit through the entire book. She is unaware the cancer cells where already there, in those photos. She looks back at pictures of the first birthday party, laughing, the cake all smeared upon her face. It was there, no body knew. Second birthday party. Third birthday party. Pictures of the first pony ride. It was there, growing the whole time and while I am now very much now aware, she is not. I am so very thankful for that.

This week we have scans. Tuesday and Wednesday. Thursday we will go back for our appointment to talk about our plan going forward based on the results from those scans. Izzy is unaware of what all this is about. She loves Cincinnati. She loves getting sleep medicine and seeing all her friends at the hospital. I am so very thankful for that.

The truth is as adults we need to be aware of a few things when it comes to Pediatric Cancer. Not enough money goes to fund Pediatric Cancer Research. And until more does, finding cures will be slow going. Until more does, kids will keep dying. We also need to be aware that feeling sorry for sick kids isn’t enough. It does nothing. When you see a bald kid out and about or, God forbid, on a billboard don’t feel sorry for the kid. If you feel pity, just stop. Because that child is stronger than you and I combined. But if you feel compassion, let it motivate you to do something. If you can’t think of anything to do, don’t know where to donate, just stop and pray. Pray for a miracle for that child you just saw.

I walk around with an awareness that my daughter has cancer. An awareness that haunts me. That drains me. Izzy does not. She walks through each day with joy and hope. She has dreams of growing old and has approximately five careers lined up. She doesn’t know or care what the medical community says about her future. She lives each day to the fullest always expecting more from the next. That is how I want to live too. I want to stop being so aware of disease and statistics and just be consumed by hope. I want to be consumed by God’s promises and believe they can be possible for her once again too.

In this month of awareness let us not become consumed by the dreariness of this disease. Let us not become so overwhelmed by how horribly sad it is that we lose hope, that we stop asking for healing. If anything, let the dreariness motivate us to an intolerance. An intolerance to accept such an injustice. May we continue to move forward believing that God can heal and that these kids are not defined by the diseases trying to take over their bodies.

Blessings on you today and LIFE for Izzy!

View More: http://flashesofhope.pass.us/izzymattocks03-11-08

Homemade Hideaway

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I sit back in my chair and watch as my children enjoy what is left of the fleeting days of summer. Izzy has built a fort in the bushes that line the driveway and daily, children from the neighborhood come in and out of her hideaway. There are blankets on the mulch, a few chairs and hung on the branches are the real treasures; hula hoops, nerf guns and of course a toy medical kit.

Each day she plays in the confines of these four towering bushes. She brings her dolls and their strollers, snacks and bottled water and I sit back to watch her take on the world from the safety of this Homemade Hideaway.

I think many things when I watch her play. Think how these bushes will forever be so precious to me. Think how she really has no idea she that she is any different from the other children that enter her fortress. That she has no idea she has anything more to fear in life than they do. And that, of course, makes me happy but also makes me sad.

The mother in me longs for a fortress that could actually protect my princess. And that is perhaps the saddest thing for me about watching her play in this vast hideaway she has built. I want it to protect her from more than things that are imaginary. I want it to protect her from the darkness trying to take over her body. The truth is, as her mother, I want to protect her myself but I can’t so I sit back in my chair with silent tears falling down my sun kissed cheeks. I sit back and watch her role-play this illusion of safety and pray that it is happening in the flesh.

Not much has changed since my last post and that is the reason for my silence. I suppose another reason for my silence is because I don’t want to acknowledge we are here, back on this journey. That Izzy has cancer and that Carter is anxious all the time now. That I’m taking unpaid days off work to be with them because I realize the summer is drawing to a close and I’m running out of time.

We finally had another round of chemotherapy two weeks ago and this past weekend she was in the hospital for dehydration from it. We are finding with this regimen that Izzy is not sick the week of the chemo but the following week instead. There was some delay between this cycle and the first, so chemotherapy has taken up much less of our time this summer than I originally thought it would. For the most part my children have had a good summer, TOGETHER, and for that I am so grateful.

Her next cycle will be given at home next week but the side effects won’t be in full force until the following week – the first week back to school. I have already told her she probably will not be able to go. She cried and said she hated cancer. Said she hated chemo. I told her that I hated them too.

This diagnosis of ‘Relapse’ has hit everyone in our home harder than the first diagnosis of ‘Neuroblastoma’ or the second of ‘Stage IV Recurrent.’ The anxiety level for each of us is at an all time high. We have been down this road before and yet never THIS road. Perhaps the one who continues to walk with the most grace is actually Izzy herself.

The other night as I lay snuggled next to her before bed I placed my hand gently upon her abdomen and began to pray over her as I always do. My prayers over her are vague these days as I do not want her to grow worried for her life. I pray for God’s presence to fill her body, for Him to cast out darkness and, of course, to protect her and keep her safe forever.

As my prayer was drawing to a close I prayed the thing that won’t surprise you at all. I prayed LIFE for Izzy, “Lord, fill Izzy with LIFE.” What surprised me, was actually her her reponse to my prayer that night.

“Mama?,” she asked, cuddling up to me in the darkness.
“Yes babe,” I said, wondering if my prayer had gone too long and she was going to ask if we could just go to sleep.
“I think we should ask God to fill you with LIFE too.”
“Sure,” I said, tears flowing down my cheeks in the darkness. “Mama does need life too.” So she put her arm around me and I asked the Lord to give me life too.

The first time I walked this road I had stamina, I had endurance and I could bounce back up after hard days. This time is different. It’s like I’ve flat lined. And while it grieves me that she sees that, it amazes me that she knows what to do for it.

The truth is I have camped out inside the confines of my own home, isolating myself from the world in attempts of creating my own homemade hideaway. I have withdrawn from nearly everyone, even the Lord. But He has not stopped pursuing me. He never does. That is part of the beauty of this journey that I cannot deny. And the real beauty is that He speaks to me through my daughter, Israelle, because He knows how to get my attention. And because she is one of a kind.

Blessings on you today and LIFE for Izzy!

Nothing We Do

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When I was a little girl about Izzy’s age I had big brown eyes and dirty blonde hair. I see myself in her as she explores each summer day with her whole heart. Caterpillars and lightning bugs, butterflies and hummingbirds. Rocks, trees, the creek. Like her, there was nothing I was afraid of. Nothing that could stop me from being a child.

As I grew up life deposited seeds of expectation within me. I began to hope for things as each season of life drew closer. Like most of us, I had a picture of what my grown-up life would look like. The white picket fence and all that. In my picture I saw my future self standing at a kitchen sink doing dishes, towel draped over my shoulder, suds up to my elbows. That self watched her children play in the front yard through the kitchen window. I can see ever so clearly the perfection of the house, of the street, of the life. I can see the perfection of the children playing in that perfect yard, on that perfect street, in my perfect life. Those children played fiercely. Those children were afraid of nothing and nothing could stop them from being children.

But I grew up and of course did not get the life I envisioned. In my real life I seldom actually do the dishes and even if I did there isn’t a window above the sink where I can watch the kids play. But most importantly my children are agraid of things that I cannot protect them from. There are things that can prevent them from being children. Things like cancer. Things like death.

At this point in the game what I most want is for Izzy to get to be a child. I want her time to be spent playing, not laying in a hospital room. Not hooked up to an IV 24 hours a day at home either. I will never stop fighting for her but I will not ask her to spend every breath fighting. It isn’t fair.

That first round of chemotherapy hit her so hard she spent 5 days in the hospital recovering. And they wanted to send her home on IV nutrition 24hours a day. They wanted her dragging around an IV pole at home to be sure she was boosted up enough to get knocked down again.

It just seemed too hard and I didn’t know what to do so one evening I sat down with our oncologist in the parents lounge for a hard talk. I stared at the floor as he spoke, “I want you to remember that this trial is not going to cure her. The trial isn’t looking for a cure. There is no cure. She could get in remission on it but she could also get in remission just on chemo alone.”

Tears filled my eyes and began to wash down the front of my face as he said the thing I was tired of him saying, “So you do think remission is possible?”

“I do but getting there can take a while and we just don’t know how long she will stay there. It will come back over and over again until either you are done fighting or it takes over.”

I sat with him and talked and I cried and I cried. Other parents came in and out to get their dinners out of the fridge and I just sat quietly in the corner listening to him in his white coat.

“Molly, there isn’t a right answer. There won’t be a right way to do this. You just have to decide what you think is best for you and Izzy. And clinical trials aren’t right for everyone.”

That night Kendrick and I talked and decided to pull her from the trial. It was the first time in the several weeks I have felt peace. Real, true, God given peace. Peace that says: walk forward in this for it is good.

The plan was to pull her from the trial drug but keep her on the two chemos she had started on. But they could both be given orally at home and shouldn’t hit her so hard. To be sure that the chemos she was on were still good options for us our oncologist wanted to do scans again. He wanted to do another MRI of the abdomen to see if there was any growth and do a full body MIBG (neuroblastoma specific) to see if there were any new spots elsewhere. If there was no progression of disease we could continue with these two chemos. If there was progression we would need to find other chemos to try.

The MRI results showed no change in the size of the original spot. It had not grown. This past Wednesday we had the MIBG looking for neuroblastoma activity elsewhere. They called late that night with the results. It wasn’t our primary oncologist that called but the third year fellow that has been with us through our entire journey in Cincinnati.

“Well, it’s good news, Molly. The scan was not MIBG avid,” he sounded confused and now I was too.

“What do you mean?”

“The scan showed no spots of neuroblastoma activity. None. Not even in the original spot,” he still sounded confused and so was I.

“What? How is that possible? I mean, there wasn’t even question that there would be activity there. The question was if there was activity elsewhere.” He laughed.

“I’m not entirely sure. I suppose it’s possible the one dose of chemo took it out or it’s possible there was a technical problem with the way the scanner read. But that’s not likely. I, I’m just not sure quite honestly.” We agreed I would need to talk to our primary oncologist to get all my questions answered and he was out of town.

It is hard to capture the very emotion that I felt during that phone call. I could breath again for the first time since I had seen the tumor on the computer screen and yet part of me was afraid to breath. I felt joy and then moments later I was afraid to feel joy.

The truth is, this was a big week for us. On June 25th, 2012 we found out that neuroblastoma was back for the second time. Three days later, on Carter’s birthday we found out it was Stage IV. In the middle of that, on June 26th, was my own birthday. As we grow older birthdays aren’t as important as they used to be. But mine is so significant to me now, in a not so good way. I relive so intimately those emotions that came with re-diagnosis the second time. And I think of how many times my birthday has passed and I have not appreciated it. I think of my own beating heart, my own healthy body that I have taken for granted and I wish I could give her those years. How I would give anything to give her the years I have not appreciated.

Yesterday I finally got to talk to our primary oncologist. Honestly he couldn’t explain the clear scan either but did seem confident that it was correct. That there is no sign of neuroblastoma activity in her. He wasn’t expecting one round of chemo to knock it out but said that had to be what it was. What else could it be?

I don’t have a label for what we are or where we are. They aren’t comfortable calling it remission just yet but there isn’t sign of the disease. They want us to continue on with our chemo plan but we don’t know for how long. We continue to exist in the pause but we have moved further away from this horrible disease and for that I am eternally grateful.

There is so much we don’t understand about life and about death. So much we don’t understand about the workings of our world. But if we are really honest – really, truly, painfully honest, we have to acknowledge that there is much we do not understand about God as well.

Do you know how many times I have layed my hands upon Izzy’s fragile body and asked for her healing? But do you know how many other parents have done the same and their children haven’t been healed? Their children have died. Their children are dying. If we want to believe that God still heals today we have to also be able to embrace that there is no formula for it. That there is nothing we do correctly to prompt it. That His plans for our lives are so much bigger than we can ever fathom that sometimes the healing comes and sometimes it does not.

I thank God with every breath I take that Izzy is alive. I thank Him for this most recent news that seems puzzling to the medical community. Because it very well may be a result of what He has done. But it is not a result of anything anyone here has done. We cannot get wrapped up in this language of saying, “We prayed and God answered.” That language is hurtful, confusing and creates a block between God and those that have not seen healing. So, no, you will not hear me say that we prayed and He answered our prayers and do you know why? Because I have to look other mothers in the eye whose prayers have not been answered.

When I started writing three years ago my purpose was to allow God to be glorified through our journey. So that I could share His goodness and His constant pursuit of us through the darkness. And I still write for the same reason. Yes, I believe we serve a powerful God but, no, I will not use language that isolates people from the Lord and leaves them alone in their pain. I do not understand so, so much about what He does and doesn’t do. But I can tell you so much about who He is. He is faithful. He is constant. He is hope. He is love. He doesn’t just give us what we need when we need it, He is what we need when we need it.

This week I celebrated my 36th birthday. This week I also cautiously celebrated hope for Izzy’s life. I have no idea what this road has for us around the next bend. We will continue with chemotherapy, we will continue to pray with desperation and we will continue to believe that anything is possible. But not because of anything we do. Because of all the things we just can’t understand.

Blessings on you today and LIFE for Izzy. ♡