The In Between

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

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

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

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

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!

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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. ♡

In The Pause

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I do not ask questions for which there are no answers. A question is followed by a natural pause. When we ask a question that has no answer that pause goes on forever. If the questions are important, if they come from the depths of our broken soul, that pause is accompanied by a pain that goes on forever as well. There is no room within my heart for anymore pain. My heart cannot handle the pause of asking a question like, “Why is this happening to Izzy…Again?” Questions like this will never be answered this side of heaven and I have learned to simply not ask. To accept this broken world for what it is: a land of constant tragedy, void of reason.

Our first week of treatment was such a kind re-introduction to chemotherapy. But this week. This week we remembered chemotherapy is often a lion in sheep’s clothing. It is so gentle and quiet at first and then it attacks, like a thief in the night, stealing quality of life, pilfering joy and hope.

This week Izzy lay on the couch and moaned quietly, her hand never far from a basin to throw up in. This week she hardly moved from that couch each day, mostly to run to the bathroom, her bowels tormented from the poison. She cried and she cried but mostly she just lay. Just lay, with a sad, pained expression on her face.

Izzy has lost over 4lbs in the past two weeks. The bones of her pelvis stick out obnoxiously on each side. Everything that goes in her goes straight through her. The nausea has subsided, but the diarrhea and abdominal cramping are at an all time high. Her counts have dropped, she couldn’t go out in public if she felt like it. She is too weak to do much of anything. On the occasion we journey outside for a bit but she grows tired. She longs to go back inside to the couch.

I have made a pallet for her on the couch. Her favorite blankets and her pillow. Even her favorite stuffed animals on the back of the couch to sit watch over her. But they look creepy actually. They look lifeless and stuffed as she has paid them no attention. What good are a child’s toys if the child has no life to give them?

This week I remembered what the fight is all about and this week I remembered that it is her own. I can get a tattoo and I can shave my head. We can all rally around her with all the love and support and prayers in the world. But at the end of the day, and at the beginning of the day for that matter, the fight is Izzy’s. She is the one being knocked down. Yes I know, she will bounce back. But then, right away, she will be knocked right back down again. And with each hit she will fall faster, she will hit the ground harder and she will stay down longer. That’s not me being gloom and doom. That’s the science behind chemotherapy.

I have never known a pain like this. A sadness, a hopelessness so big that it would not fit within the confines of your heart. Often times I hear nothing around me but the emptiness inside my chest. I hear the void that is my soul and I think that this life cannot possibly be my own. But it is. That this life cannot be my child’s. But it is.This is our life for now. As we wait. As we pause.

As I was writing this post I listened to a worship song I used to listen to over and over again two and a half years ago on the Stem Cell Transplant floor. Desperate cries for redemption to overcome flowed from the headphones into my soul. Tears streamed down my face as I typed each key. My soul was raw and free for the first time. The Lord began to lift my head from the darkness. Suddenly I looked up and saw Carter standing in the doorway. He was watching.

“What’s wrong, mom?,” he asked, still keeping his distance. I struggled with my words. First said nothing and then decided to be upfront. He knew. I know he knew. “I’m sad baby.”

He walked closer to me now, “Why?” I took a deep breath and gathered my composure enough to speak clearly. My words were slow and deliberate. ” I am sad because Izzy is so sick.”

We have talked about Izzy being very, very sick since she relapsed. He has never wanted to go further. But this time he understood the word ‘sick’ to mean what it truly does for us. “Izzy is sick?,” he asked, as if he had never heard those words before.

“Yes, baby. Izzy is sick.” And he ran to my bed and buried his head in me. After a few minutes he looked up, “How sick is she?”

“She is very sick baby,” I said and he cried. I don’t know why he got it now, don’t know why he suddenly understood but he did. “Is she going to d-i-e?,” he asked with a terrified look on his face.

A few tears finally fell down mine, “I don’t know baby. I don’t know.”

“But. But. But I don’t want to be an only child,” he said and climbed up onto the bed with me to get more closer to me still.

For the next ten minutes we talked about tumors and chemotherapy, praying and healing and we talked about hope. I promised him that I would tell him if the doctors told me they thought she was going to die. I promised. And I asked him to promise not to tell Izzy about how scary the kind of cancer she has is. He agreed.

If you wanted a feel good read tonight, you clicked the wrong link. This is the honest, raw, heartbreaking story that is ours. That is Izzy’s. This is Izzy’s story and this is Izzy’s fight.

We walk slowly with her in this suffering, in this pause. We wait and see what the journey has next for us. We continue to ask the Lord to lift our heads from the darkness every day. We ask for His mercy, His grace and above all, His Healing. And then we wait, in yet another pause that is accompanied by a great pain.

Blessings on you today and LIFE for Izzy.

The Purple Card

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Sunday evening I packed our bags for the week we would spend in Cincinnati. There were bags of clothes, bags of toys, bags of blankets and pillows. I have grown accustomed to the systematic way of packing for these trips. The things you bring to make you feel at home even though when you finally climb in bed at night, the pain that has been hiding so deep throughout the day emerges just long enough to remind you that you are not.

I reached to my night stand to grab a few books and heard the shuffling of papers between them as I carried them to my suitcase. Random things I had placed there. Important things I sometimes use to mark a page of scripture or a reading in a devotional. It wasn’t until I packed the books and walked back around the corner of the bed that I saw the thing that had fallen from the papers onto the floor. It lay next to my night stand innocently as if it were just another piece of paper but it was not. I stopped, staring at it on the carpet, my heart racing and I felt the thing I had not felt entirely that much of.  I felt something that had been lurking at the surface of my soul for weeks but had not been able to come out. That evening, as I stood in my bedroom with bags packed for our first week of chemotherapy and I stared at the little purple card on the floor, anger began to consume me.

I knelt down to pick it up and like any other crazy person I turned around and looked in the mirror waving it around. I began to yell at The Lord. “Is this a joke? Is this funny to you. Of all the things I could possibly find on this night, why this? THIS is just cruel” I was pissed. I walked back to my night stand and slammed it down. My hands were trembling. My heart was racing. I continued to pack but my eyes kept finding their way back to the purple card.

Izzy collected Beads of Courage during her treatment. She has hundreds. She received a bead for everything. A yellow one for every overnight stay in the hospital, a red one for every blood transfusion. On our last day in the hospital she received her Purple Heart of Courage, symbolizing the completion of treatment.

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It came with a small purple card that explained it’s significance. She kept the bead to put with her others and I kept the card to remember all the Lord had delivered her from. To remind me of where we had been. To remind me it was over. As I stared at this, of all the nights in the world, I grew angrier and angrier. Our journey was far from over.

This first week of chemotherapy went beautifully. Other than being a little tired while the IV chemo was running she has been completely her normal self. The first day was the most emotional for me. It was so hard walking back in and meeting eyes with those staff members who were so sad to see us back. They remember so much of Izzy’s time here. She left an unforgettable mark on the hearts of so many. But Izzy has managed to block out almost all of her season here. She remembers virtually none of it. I attribute part of that to a covering of grace that’s over her and part of it to all the drugs she was on while she was here. Either way, I’m glad she does not remember the horrors that I can never forget.

This weekend she wants to cut off all her hair. She is anxious for it to fall out and we expect the process to begin soon. I don’t want that process to have any control so if she’d like to do it now I will gladly give her the scissors so she can take all the control herself.

That has been one of the hardest things for me this week. Every time I run my fingers through her hair I wonder if a strand will come out with them. I want so desperately to touch it and yet I am afraid. Afraid to disturb it, afraid to initiate the process. It’s nonsense, I know, but I haven’t even been able to brush it much because I don’t want to pull too hard. I cannot bare to see the strands, strands that have given us such joy with each centimeter of growth, fall out.

Relapse. There are few things I can think of more cruel. For family, for patient, for friends. Just as you finally start to enjoy living outside the shadows of fear, it hits, dragging everyone in it’s tracks through the dust. But these aren’t the things we get to choose. What we can choose is how we respond.

We can choose to respond with grace and determination and we can choose to not stop fighting. To not stop hoping. To not stop asking the Lord for His deliverance again. And to not stop asking Him for another purple card.

We can even choose to believe that maybe it was no coincidence the purple card fell out of my bible that night I was packing before this first week of treatment. Just maybe The Lord knows how desperately I needed to be able to hope. And just maybe he wanted me to see the purple card so that I could have the hope to ask for another one.

Blessings on you today and LIFE FOR Izzy.

Matters Of The Heart

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This past week Izzy has carried a nervousness that has been both heartbreaking and expected. She has cried about things that I cannot fix and asked questions I cannot answer. I have tried my best to circle around her inquiries drawing attention away from that which I do not know to that which I do know. “Your eyes are the most beautiful thing about you baby, you don’t need hair,” and “I don’t know how long we’ll get chemo for but I will be right by you through it every single day.” Sometimes my efforts have been successful and sometimes they have not.

Monday night we were coming in from playing and she was being extra delicate about something. I picked her up and carried her into the house, asking what was really wrong. “I just can’t get my mind out of the idea that I have cancer,” and she buried her face in my shoulder and began to cry.  “It’s all I think about,” she muttered. And so I realized that I had to find a way for it not to be the only thing I think about. I had to find a way to not walk around in sadness all the time. For her.

That night she slept with me and I prayed the Lord would consume her with a supernatural peace as she slept. I prayed He would take her every thought about cancer captive, freeing her mind to be a child.

Yesterday she had a port placed in her chest. It will provide direct access to her heart for this poison we call chemotherapy. There were problems placing it, the first location they tried had too much scar tissue built from the last tine she had a line place so they had to go in through her neck instead. Is that too graphic? Imagine how I felt when I walked into the recovery room to find her beautiful hair saturated in dried blood. Saturated. Her eyes opened and as soon as they met mine she tried to speak. She was in pain. Her mouth was dry from the breathing tube and words weren’t coming out but the tears falling down her cheeks told me what she was trying to say.

The nurse began to scroll down what she had been given in the OR and I kindly acknowledged the list. She then asked if I wanted her to be given a dose of Fentanyl or IV Tylenol. Hmmm, they just cut into three different places of blood vessel and proceeded to stitch a piece of plastic to a muscle underneath her skin – let’s go ahead and assume we’re past the IV Tylenol. But a simple, “Fentanyl,” was all I said.

Her vitals were off for a while. I chatted with old nurses we used to know. But through it all I managed to keep it together on the outside, in spite of what I was feeling on the inside. Until we were wrapping up and the nurse handed me this:

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If you don’t know what it is I’m happy for you. It is a CVC (Central Venous Catheter) Emergency Kit. Anyone with some type of line that goes to their heart must have one with them at all times. I carried one in my purse for a year and a half. We had one in each of our cars. Anyone who took Izzy anywhere had one. On the oncology floor they are everywhere. They hang on every IV pole as a precaution. A child can’t even walk down the hall without one.

So when the nurse handed me one yesterday and said, “I’m assuming you know what to do with this,” it just hit me in one culminating wave of trauma from the past and fear of the future. You see, I do know how to stop my daughter from bleeding out, should the line be ripped from her chest. I do know how to replace her g-tube should the one in her stomach now be pulled out like it was once before when it got caught on a blanket. I am not a nurse but soon I will be giving her shots at home and taking her blood pressure regularly. They have taught me more than I ever wanted to have to know.

But you know what no one has taught me? How to walk on this path now. How in the hell I walk forward every single day full of hope and fully present with Izzy, never missing a moment, when in my heart I am consumed by grief and despair. No one shows you how to walk forward authentically, not pushing down the hard stuff, but still clinging to hope, still clinging desperately to the possibility that this may not be the beginning of the end.

When Izzy finally woke up and began looking around her pain was much more controlled. I was trying to carefully clean the blood out of her hair without disturbing the wound on her neck. Together we looked down at the port that is hidden closely under skin right above her heart and she started to cry.

“What’s wrong, baby? Does it hurt?,” I asked stroking the strands of precious hair away from her face. She shook her head.

“I don’t like it. I want it out of me,” she wept. I tried talking to her but she just cried. “When can it come out?” My heart broke then and there because according to the doctors it never will. I am trying so hard to hope for more, to believe that God has more for her and that He will deliver her once again. But I just stood there, silent, stroking her hair.

As I put the CVC kit in my purse it felt like an acknowledgement of where we are now. I remember how freeing it was a year and a half ago to throw them all away. I hid it in the very bottom so I couldn’t see it, still not wanting to believe chemo would be starting in a little over a week, her hair would fall out and her suffering would begin. Yesterday I read the first chapter of a book that is all too familiar and I hated it.

I want more than anything to embody a grace, a peace and most importantly a hope that overflows to Izzy through this hell. I have to figure out a way to keep going, to keep fighting, to keep believing she can be healed because she needs me to.

Blessings on you today and LIFE for Izzy.