Falling Against the Wind

Monday morning I went for a run after I got the kids off to school. Per the usual it wasn’t raining when I started and quit almost the moment my foot hit my front step. But for two miles there was a constant stream of water from the heavens. It was hard to look up, my head hid in the grey, cotton hood of my sweatshirt. I stared mostly at my pink, wet shoes as they splashed on the barren country road. When I did look up I was instantly captured by the rain in front of me. I couldn’t help but notice that regardless how gravity tried, it could not make the rain fall straight down. The wind was blowing so hard it made the rain appear to be falling almost sideways.

For the rest of my run I thought about the raindrops and how, in spite of all their aerodynamics, still some times there was too much pushing against them for them to fall straight. As I ran with my head back down, hidden in the security of my hood, my  mind wandered back to my own life and the life of my family. I begin to think about how even though we were created to fall so gracefully from the sky, we have found ourselves falling against the wind for as long as I can remember.

Today is Izzy’s ninth birthday. With her in remission and off chemotherapy I often find myself forgetting so much. I find myself living so freely, completely independent of where we have been or where we may ever go. It’s a gift to feel that – to walk in such normalcy, whatever that word is supposed to mean. The problem with walking in moments of normalcy is found when you remember all that is not normal. Like a smack in the face, glimpses of reality come from nowhere reminding me of it all. The pain, the suffering, the fear. The past that should have been, the innocence that was stolen, the days that can never be given back and the peace I know I may never feel again.

The truth is, like every parent, I want time to stop right where we are. Not just because she is growing up but because she is living. She is thriving and I want to experience this forever. She has defied the first set of statistics over the past five years and I celebrate that. I rejoice and stand with thanksgiving – forever grateful for not only what has been but what has not been. But next month. Next month will bring the two year mark since the cancer returned again and we were told the unthinkable. Told the five year survival rate for relapse was less than 1 %. Can you even imagine the weight of walking with that? Can you imagine living with that knowledge and watching your daughter live without it?

Do you remember those paper chains we made as kids right before Christmas? Each night you would tear off a link of crinkled construction paper leaving the chain a little shorter. As a person obsessed with numbers, there is now a permanent paper chain in my mind. It once held one thousand, eight hundred and twenty five rings on it, each representing the days we were told were left for her – best case scenario. Today, on her ninth birthday, I will tear off the seven hundred and thirtieth chain, leaving not even eleven hundred left. Eleven hundred days. These rings feel much heavier to my soul than construction paper. More like rocks, the weight of too many of them becomes unbearable. Over the years I have found a direct correlation to the weight we carry and our ability to find hope. When we walk with more than we were intended to carry, hope seems a permanent fixture in the distance that we will never reach. The weight of our burden prevents us from stretching to the place that hope lies.

The Lord is faithful to give us freedom in exchange for our burdens but he is also faithful to respect our privacy and our will. He will not force our burdens out of our clenched fists. We get to chose what we do with the weight we were never meant to carry. If we hang on to it, we will eventually find hope unattainable and freedom impossible. But if we can set the burdens down we will find hope well within our reach as the gentle breeze of freedom carries us there.

Many years ago our doctor told me that I would have to learn to live knowing that Izzy might not. In that moment I hated him. I hated him because I thought doing so would be quitting. I thought doing so would be a sign of weakness. But as the months and years have passed I have found great truth in his words. I still pray for healing every night. Still lay hands on her belly and speak life into her body. But as I leave her room I have learned to accept that her living isn’t dependent on me. And that means my living can’t be dependent on her either.

In three weeks we will head to Florida for spring break, enjoying a normal, restful week at the beach. The week we return we will head back to Cincinnati for scans to see how she is doing off chemo. I don’t know what the future holds for us today anymore than I did five and a half years ago. Don’t know if she will continue to be a miracle or if the Lord will call her home. But the truth is, its not my choice. The only choice I have in this is whether I will hold tightly to the weight, keeping hope and freedom out of my reach or if I will surrender it. Some days I make the wrong choice but some days I do it right.

For the greater part of nine years we have been falling against the wind and its exhausting. But here’s the thing about rain: the smaller the drops, the easier it is for the wind to move. But the bigger drops cannot be moved off course easily. The bigger drops have enough inertia to overpower the efforts of the wind. Today, I’m thankful to be in this massive storm with the daughter the Lord has given me. The wind is only blowing so hard because she is so hard to move. She is a God given force to be reckoned with.

Blessings on you today and LIFE for Izzy.

 

 

 

 

A Walk Through The Waiting

Tuesday Evening: The Night Before

I sit on the floor of her room watching as she packs a tiny suitcase for her doll. Filled with tiny pajamas, a tiny blanket and a tiny bear it looks nothing more than a chore any other little girl would complete on the eve of a trip. Until she finds the tiny oxygen mask and packs it too. This is different, I think. This is what makes her different. 

Carefully she then undresses her doll replacing the pink shiny dress with a hospital gown. She begins to talk the way she always does before these things. She tells me her new doll is nervous about having her first set of scans. She has told her all about what to expect but still the doll is a bit afraid so Izzy goes on with more detail of what she can expect. 

For many years Izzy has managed her own fears and confusion by role playing with her dolls. The dolls have changed from time to time, even once it was her favorite stuffed elephant, but the story is always the same: the make believe friend is nervous about having a scan to look for cancer in her body. The scans make the doll nervous like Izzy once was. The equipment, the noises, the needles and masks. 

If asked if she, too, is afraid Izzy will always say, “No, I’m not afraid but I’m a mom. I have to take care of my daughter and let her know everything will be okay.” Isn’t that what mothers do, after all? We take care of our children – telling them that everything will be okay – even when we, ourselves, carry the very same fear. 

Wednesday: Scan #1

We sit quietly in the prep room while nurses and assistants come in to take vitals and write up notes. Izzy takes her doll from the stroller she has been pushing and climbs into the chair, holding her tightly in her arms. She whispers to her softly and I cannot hear her quiet words. 

A new nurse comes into our room. She works with the anesthesiologist and needs to go through Izzy’s history. She needs to confirm the things that have been in her chart for years. Things I will confirm again tomorrow. She begins to call off every procedure, every diagnosis, every complication Izzy has ever had like they are just words on a list. These words carry no weight for her yet they pull me down further and further as she calls them off. 

“Adrenalectomy, tumor resection, bone marrow transplant,” I nod. “Recovered pulmonary hypertension, esophageal strictures, hearing loss,” I nod again, saying only the word: correct. “History of multiple chemotherapies, radiation, a g tube placement, a g-j tube placement, multiple central line placements, a port,” I sigh this time as I nod, listening to the list continue. I tune out the words she reads finding too much pain in each of them. I grow bitter wanting to lash out at her: how many ‘words’ are on your own daughter’s list. It becomes too much so I fixate on the cartoon playing on the screen. She continues, “high blood pressure, intestinal obstruction, nightly feeds,”  I continue to agree. The cartoon is an older episode, one that has played over and over again during our years in this very hospital. This cartoon, I’m thinking, is one of the most constant things in our life. This cartoon, this complete fabrication of reality, is more constant than my daughter’s health has ever been. Izzy is kicking me now, noticing I have drifted off so I adjust myself and tune back in to the nurse.

“She needs to receive a dose of Dex before she wakes,” I say. “Sometimes they will give fentanyl too, right after the propofol drip finishes. Either is fine but she needs one or the other.” The nurse scrolls back through the notes in Izzy’s chart to confirm my request and agrees that I have told her what is needed. “And I’d like her to have an extra bolus of fluids. 500 please,” she says okay and continues typing.

Soon we walk back to a different room where they are waiting for her around the bed she climbs into. She covers herself in her purple blanket, left arm wrapped around her elephant. Then she pulls the doll upon her chest laying her in an identical position – covers her also in a purple blanket and places a stuffed bear under her left arm. With her right hand, Izzy places the mask over the doll’s face and then tells the team who has been most patiently waiting that she is ready. The anesthesiologist places a mask, not much bigger than the dolls, over Izzy’s face and tells her to breath slowly. She continues to hold the mask tightly over the doll’s face in unison with the anesthesiologist.  The smallest body in the room she is the strongest force, completely in control of all that surrounds her.

Suddenly her eyes move from the doll up to me and she panics letting go of everything and reaching for me. She is half awake, half asleep the drug beginning to take over. I take her hands and put them back exactly where they were before. I place one hand over her hand that holds the doll mask and my other over her hand that holds the elephant. I squeeze them firmly and warmly, assuring her with my eyes that I am there. I tell her, as mothers do, that everything will be okay.

Within seconds she falls asleep and I am asked to leave the room. I kiss her forehead and walk away heading down the long, white corridor to wait. 

Later that night I lay in a hotel bed wondering still what the test results will show. The doctor has emailed to say he is out sick and we would talk tomorrow after Izzy’s second scan. I think about the waiting and how I hate it. I think about how even though the waiting holds so much fear it holds so much hope as well. I think that maybe tomorrow I will wish I could come back to this place of hope. Think maybe this night will seem peaceful compared to what I feel. 

Then I think back to the thing Izzy said to me a few weeks back, the thing that has been in and out of my mind all day. I think back and I wonder what I will think about it once I get the results tomorrow. Its this thing she said that I can’t stop thinking about. This heartbreaking, beautiful, matter-of-fact kind of thing. This is what the thing was…

It was just a week or two ago and I was lying down with her before bed talking about the things of our day as we always do. Somehow she started on the subject of school and went on to tell me they were studying countries in her third grade class. She was studying Israel, her namesake. I asked her what she was learning about it and she began to describe to me what a beautiful place it was. A valuable place that bad people were always trying to destroy. I began to remind her why we had given her the name Israelle – because the people of Israel were God’s chosen people. What a beautiful thing to be – His Chosen One. 

She thought about it for a while and acted as though she had never heard that before even though she’s been told it many, many times. The room grew quiet but before long she broke the silence with her revelation, “Mama, I think I know why I have cancer.” My stomach dropped and I wished I could undo our conversation. I hesitated, “Why’s that baby?”

“Because my name is Israelle,” She declared, her words making the darkness of her room even darker. My heart ached and before I could begin to think I desperately blurted out, “Why would you ever say that?” 

“Well it’s just like the country, with people always trying to destroy it. But God saved the country … and it’s kinda like that for me you know, because I’m a survivor.” 

Thursday: Scan Day #2

She is back in the scanner sound asleep now as I sit in the designated waiting room for radiology patients. My heart is pounding and I feel my stomach creep and crawl within. I no longer feel the hope of not knowing, I feel the fear. It is surrounding me, over taking me and I want to either vomit or pass out. I know that someone back there is looking in her body at this very moment. Someone knows the thing I want desperately to know. I picture them all standing around her sleeping body talking about what they brought for lunch or what they watched on tv. I wonder where they put her doll. Wonder if they set her aside with dignity or cast her carelessly into a chair or table. I put in my headphones, close my eyes and wait. 

By the time we have picked her up in recovery and taken her to the oncology clinic it is all I can do to not cry. To not scream. We sit in silence in our room for an astounding thirty-nine minutes before the doctor opens the door. We are handed papers, conversation begins and finally, twenty-four hours since the first scan ended I finally know. She is still fine. The scans both revealed no change. She is stable. She is in remission. We will scan again in the middle of April.

This kind of waiting has become debilitating for me. My entire body is almost numb now. I do not feel joy but I choose it. I do not feel thankful but I choose it. I do not feel anything but I choose to not let that steal this moment. In this moment I am reminded of the ongoing attempted destruction of Israel and I hear my daughter’s words boldly in my mind: God saved the country…and it’s kinda like that for me, you know because I’m a survivor. 

Blessings on you today and LIFE for Izzy. 

Re-Birthday

It was early January, 2012 and we sat in her hospital room in the deepest level of isolation she had ever been in. Only one adult was allowed in the room with her around the clock and no one under the age of eighteen. We were allowed one visitor at a time but with our distance from home there were never many more than that anyway. She had been given high doses of chemotherapy beginning on Day -7 to kill nearly ever cell in her body. Unlike regular chemotherapy which left some cells behind, this killed everything. In the weeks to come she would shed her skin, her fingernails and any eye lashes she had left. But for today, today was Day Zero and she was finally getting her stem cell transplant. On the Transplant Floor this day was celebrated as her Cell Day. They hung a birthday sign above her door and the Child Life Team came in isolation gowns to sing ‘Happy Cell Day’ (to the theme of ‘Happy Birthday’ of course, for today was a day of re-birth). A day to start over in hopes for a cure.

Over the next two months I watched as what I knew of suffering was redefined. Most days she lay still in bed, fixated on the TV but not really watching. The morphine pump was running almost constantly so she didn’t feel the full magnitude of her pain. She was too weak to stand, to even sit, to even smile. Smiling required moving her mouth which was filled with bleeding sores that went all the way down her esophagus. This made the constant vomiting horrendously painful and she fought it every time. She didn’t want to throw up because she knew the acid from her stomach would burn the sores as it worked its way up her throat and out her mouth.

Those were the days when her hearing really started to go. We didn’t have hearing aids yet so she couldn’t hear my goodnight whispers in her ear anymore. Couldn’t hear the morphine pump beeping. Couldn’t hear the tv very well, though I’m not sure she was really watching anyway. She just stared into it day after day, the whites of her eyes growing grey as her skin continued to flake off.

A few weeks in she hit rock bottom and nearly went into kidney failure after a complication from the chemotherapy took over. For days we waited to see if they could get her through it. We delayed the radiation she was scheduled for waiting to see what would happen. The radiation would hit right next to the left kidney and we knew that if we began before her kidneys recovered we could send her into complete failure.

Those were the darkest days of my life, that portion of treatment where she was the closest to death I have ever seen her. But I knew that going through it was her only chance for a cure. That’s all it was too – a chance. A chance for a better life, a chance to overcome the disease that was trying to take her life, a chance that – as we know now – didn’t work.

Today is the four year anniversary of that stem cell transplant. Today, January 9th, is her Cell Day or as I like to call it, her re-birthday. And while I am so unfathomably grateful that she is still alive four years later, I am still so unfathomably terrified of what the future holds as well.

She had her last dose of chemotherapy on December 23rd and in two weeks we will go for scans to see what is happening inside that tiny, strong little body of hers. I told her last night that our nurse wouldn’t be coming to the house today like she does every Monday. Told her that we were taking a short break from getting labs all the time. She smiled and raised her hands into the air. “YES,” she said nearly screaming. “I’m so excited Mama. So excited that no one will hurt me anymore.” My heart broke as it often does when she says things like that. When she speaks about the injustice she has lived.

Izzy collected beads during her 18 month inpatient treatment protocol. She earned one for different procedures, different horrors she endured. This one here was given to her for her stem cell transplant. Like the others, I will cherish it always.

 

 Writing has always been my outlet. The way I feel, the way I grieve. But as the months and years have passed I find I have less and less to say. For a season I wanted to reconcile everything she had gone through into some kind of sense in my brain. But I finally accepted that some things just can’t be reconciled. Some things will never make sense, will never be fair. So this week when she talked to me about the four kids she wants to have someday, two boys and two girls, I didn’t try to stop myself from feeling the pain. The pain of knowing all the things that she doesn’t know. All the things that have been spoken over her. Things like: she won’t live long or that she will never be able to have children even if by some miracle she does. I don’t want to try to make myself feel okay about any of that because I’m not.

But I also don’t want to miss a second of her life because I’m too consumed by pain or fear. So if there is ever a moment to celebrate her life I will take full advantage of it. Full advantage of celebrating every milestone – like a 4th re-birthday. So I’ll buy a cake, I’ll wrap a gift and after dinner tonight we will have a 4th re-birthday party. Through the pain and through the fear we will sing and we will celebrate. But not because I’ve reconciled it into anything beautiful – quite the contrary. We will sing and we will celebrate because I can’t turn it into anything beautiful. We will sing and we will celebrate because the whole thing is an unholy mess but she is still alive in the midst of it. And that is reason enough.

Blessings on you today and LIFE for Izzy.

A Cross Stitch Perspective 

Someone once told me that life was like the a cross stitch picture. That the happenings of our life were the series of stitches, crisscrossed thread and knots – basically, the complete mess that is the back of the canvas. She told me that only from heaven would we be able to see the front of the canvas. That only then would we see the beauty that each tiny stitch and knot had contributed to.

I suppose I believe that something like that is true. You see, I do not believe that things in life just happen without a greater purpose or without an opportunity for their redemption. Just like with cross stitching, I do not think there are random threads and knots all over the place. I think it feels like that to us sometimes. Feels as if our lives are just one big knot after another but I think that’s just because of the side of the canvas we are looking at. In the end I believe we will see the finished product – a pulling together of all threads to make something beautiful. Even threads of pain. Even threads of heartache. Even threads of the most unfathomable loss.

Today, with the recommendation of Izzy’s medical team we made the decision to end chemotherapy. She will begin her final cycle next week and after that we will wait and see what happens. They essentially told us we would “wait for the cancer to return.”

The chemotherapy that she started in the summer of 2015 put her in remission and has kept her there. Stopping it is a complete risk, perhaps the biggest risk I have ever taken in my life. But not stopping it brings risks of its own. Eventually her body will develop a resistance to the drug and so the tumors will begin to grow again anyway. If we stop before her body develops a resistance, the chemotherapy could potentially work in her again. 

The problem with High Risk Neuroblastoma is that after relapse a chemotherapy only works for so long. After a resistance is established to one, you try a second. Once resistance is established with the second you try a third and so on. You continue until there is no longer one to try or until the side effects simply become to unbearable. We have been told this many times and it never gets easier. Making the decision to stop feels like jumping off a cliff and just waiting. Will there be a parachute to catch us or will we crash violently into rocks and waves along the rugged coast?

Of the 365 days of the year Izzy will take her last dose of chemotherapy on December 23rd  – the five year anniversary of her diagnosis. On the five year anniversary of the day that changed our lives forever we will close out another season. That day we will also go downtown and pass out Christmas gifts to the homeless per Izzy’s request. We did it last year and this year we have decided to make it an annual tradition. We will choose to take what the enemy tried to mark as a day of PAIN and turn it into a day of LOVE. Choose to GIVE on a day we remember all that has been TAKEN.

We went away this weekend to a hotel with an indoor waterpark. Izzy ran around like every other child there- full of joy, full of life. Late last night I watched her play in the wave pool, waves crashing up against her little frame. From out of nowhere a baby girl, probably around one, walked up to me and smiled. With blonde hair and blue eyes she reminded me so much of Izzy when she was that age. Soon Izzy found her way back to me and soon the baby girl found her way to Izzy. They began grinning back and forth at one another, making faces and laughing. Izzy loved it. 

Eventually the little girl wandered out into the water, just far enough that the waves washed over her feet. Izzy followed and the two stood side by side for a few moments smiling and watching the water grab their toes.For just a moment time stood still as I watched the two together. I looked at the baby girl on my right and I remembered all that I had wanted for my own baby girl. I remembered the innocent way I had once held her and rocked her and dreamed of what her life would be like. Then my eyes went back to my own daughter, her frame so slender, almost bony from the effects chemotherapy has had on her appetite. I looked at her thinning hair and then I began to cry. I cried because her life did not turn out the way I had expected. I cried because I was jealous of the baby girl and the life that was most likely ahead of her. I cried because I now know a pain and a fear I had never known when Izzy was that little.

Soon Izzy raced back to me and I held her close, wrapping her in a towel. I dried her off, put on her cover-up and she told the baby girl goodbye. We walked away leaving them with their innocence and their dreams. We walked away with fear of our future as they stayed and played with hope for their own.

We have a plan for now until December 23rd and after that I don’t know what to expect. I do not know what December 24th or the days that follow will bring. I know only two things for sure: 

1. God is and always has been faithful – not to give us what we want but to walk with us through the good days and the bad. 

2. We must always walk forward with hope even when we have been told there is none – ESPECIALLY when we have been told there is none. Because what we do when there is no hope, how we choose to live in darkness, THAT is what defines us.

I have watched as it has defined Izzy and I can tell you this: Witnessing the creation of the cross stitching that is her life, even the messy and tangled side I can see, has been the greatest privilege of my own. 

Blessings on you today and LIFE for Izzy.

Forever Fall

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Fall is, by far, my favorite season. It is those classic cliches that I love the most: the crisp air, the turning leaves, the bonfires begging you to gaze into them. All that and more makes Fall my favorite. Makes me love it more every single year. For about one fourth of my life now Izzy has been around to share my favorite season with. Most Falls we have spent jumping into leaf piles and sitting around fires. Most Falls but not all.

The picture was taken four years ago. Izzy was three months into aggressive treatment, with 15 more ahead. At this point in our journey I was completely lost. I had been ripped away from my family and friends and was stuck in a hospital room almost constantly. Two hours away from everyone I knew, I was alone and afraid. In spite of it all, I still had one very fragile thing in this picture: hope. There was a thirty percent chance that this horrific treatment (of which the worst was still to come) would provide a cure. That somehow between the chemotherapy, the radiation and the stem cell transplant – somehow between her unfathomable suffering and the equally unfathomable grace of God – this nasty disease would be eradicated forever. But as life would have it, that was not to be.

One day the disease would come back and one day the doctors would look at me and say that there was no longer hope for a cure. They would tell me that all we could do was delay the inevitable. Our new goal became to give Izzy as many years as we could and to try to make them as painless and joy-filled as possible. You can imagine how that moment changed everything. How in that single moment in time life crumbled, never to be the same again.

So often we talk about how our life experiences create a ‘lense’ through which we ‘see ‘ the world. Over the past few years I have learned that what our life experiences do is actually so much more complex than that. I believe that we choose whether to let them mature us or destroy us. We choose to let them shape us or define us. But I have also learned to believe that our life experiences actually create the ‘skin’ around our heart through which we ‘feel’ the world. And on that day last spring when they told me hope was gone the skin around my heart grew thick and dark, rapidly covering the brilliant root of my soul.

This isn’t what my life was supposed to be like, you know. Haven’t you ever thought that before? Haven’t you ever thought that the thing that happened yesterday shouldn’t have happened or should have happened differently? That the end result should have left you in a different place?

Most of us think along those lines. When the life we wanted doesn’t line up with the life we actually have we tend to think that something is wrong. And it is. But not with the life we have. What is wrong is actually found in the life we thought we were going to get. That life, the one we wanted, is a fairy tale and our fixation on it can prevent us from fully experiencing the life that isn’t. We have to let go of our fairy tale before we will ever find peace in our reality.

Izzy has been fighting a cold for a week or so. That combined with two rounds of chemotherapy and she’s just wiped out. The past few days she has continued to spike fevers requiring us to take her to the Emergency Room. Today was Pajama Day at school and she cried that she couldn’t go. “I feel fine,” she cried, tears streaming down her cheeks, her temperature 103. I knew I couldn’t send her and it broke my heart. She slept most of the day and woke up this afternoon in a panic about gymnastics tonight – it was the first night, “Please, Mama, please let me go to gymnastics tonight. I promise I will feel good” She has been waiting for months to go. She lay her head on my lap and we sat in a ball together, both of us crying. She looked up at me when she heard the shudder between my sobs. “Why are you crying, Mama,” she asked, the whites of her eyes stained red. I took a few breaths and thought about how to respond.

“I’m crying for the same reason you are. I’m crying because you’re sick and I’m crying because I can’t make you better.”

“It’s okay, Mama. It’s not your fault I’m sick,” she said, coming up from my lap and wrapping her arm around me. “It’s nobody’s fault.”

I let her go to gymnastics tonight. I let her go for the same reason I am letting her participate against the recommendation of her medical team: because she’s a kid. Because this disease has already stolen too much. Because I’m her mother and I am her greatest advocate on this earth.

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I don’t know how many more Falls I will have with my Izzy. Don’t know how many more times we’ll lay in the leaves together and look up at the sky. That alone makes me want this one to last forever. I want these days, these ones from that life I didn’t want at all, I want them to be never ending. But as we know, nothing lasts forever and here’s the thing I love about Fall the most: the elegant way it teaches us that. It is during this one time of year that the earth shows us the beauty that comes from letting go. The leaves turn their colors and drop from the sky, creating a wondrous canvas upon on the ground. The branches of the trees stand empty and alone. They stand in a long and glorious pause – waiting, teaching – because even though it seems hopeless there is still more to come.

 

I encourage you to join me this Fall in letting go of the life you didn’t get and enjoying the one you did.

Blessings on you today and LIFE for Izzy.

 

The Exclusive Club of Pediatric Cancer

izzy laughing best

Photos courtesy of Lantern Tree Photography

The laughter of a child is captivating. It is consuming. It lingers to the deepest place of your soul, awakening all that is within. The laughter of your own child is even more captivating, more consuming, more awakening. It somehow finds its way to the forgotten corners of your heart, stirring joy that you thought was lost. It seeps into the crevices of your soul breathing life to pieces you thought were long dead. The laughter of your own child is nothing if not transformational.

Imagine for a moment that you could never hear the laughter of your child again. That the sound of their laughter could never again reawaken you. Imagine that instead the last sounds you heard of your child were sounds of pain, sounds of sadness and sounds of fear.

For some parents this is a reality. A lonely hell they walk in, with only memories to guide them through the darkness of their everyday. For other parents this is what we have been told will be our reality all too soon. While we may walk in joy that our children are still alive, we carry with us the knowledge that their days have been numbered by a diagnosis with no cure. We fight to hope that modern medicine will be wrong, that our child will be the one to defy the odds so heavily stacked against them.

One thing I remember about my own childhood is belonging to clubs. A group of friends would have an idea, come up with a name and in minutes a secret club was born. I was member to clubs themed around bands, tree houses and even sidewalk chalk drawings (don’t judge, you know you were too). Such secret clubs provided a sense of belonging, a sense that I was understood and accepted by others.

As I began the ‘adult’ season of life I found myself longing to belong to groups of a different kind. Married couples, then pregnant women, then young mothers. These groups of people and the stage of life we shared offered hope and joy. We were embarking on one of life’s most promising adventures: parenthood. If we were lucky we would give birth to the little ones who grew inside our womb. We would teach them life’s most basic of lessons: how to eat, how to sleep and how to love. Though there were challenges in those early years of parenting, I finally found that I fit into a place I had always longed to be: the club of motherhood.

Nearly five years ago I was inducted into one of the most exclusive of parenting clubs. It was not a group you could sign up for at church or the gym. This club was ‘Invitation Only’ and participation was not an option. One day I was drifting through life just like anyone else and with just a phone call I became a member of the exclusive club of Pediatric Cancer. My membership card would soon be the bald head of my daughter, announcing to all the world that we belonged. My monthly dues, any sense of peace I had ever known.

Over the months and years to come I would learn intimately about this group that I had never even known existed. I would come to find that there were floors in hospitals where children suffered twenty four hours a day, seven days a week. The halls of these floors were filled with a silence that only broke when crying could be heard. The parents that passed one another in these halls were stoic, their souls numb to a reality they could not escape.

There are three types of childhood cancer: Leukemias – cancer of the blood, Lymphomas – cancer of the immune system and Solid Tumors – cancer of the bone, organ or solid tissues. Neuroblastoma is a Solid Tumor affecting only 650 children in the United States each year. Izzy was only three years old when we won the lottery with that diagnosis. Five years, two relapses and two remissions later she still receives chemotherapy two out of every three weeks. Though she is currently in remission they tell us that when we stop the chemo another relapse is inevitable. And another and another until the cancer can no longer be beat.

When you join this club of Pediatric Cancer you don’t ever leave. You are a member for always. I believe that those families who do find cures are able to separate themselves from the pain of the past but it is still a part of their story, a part of who they are. Once you lie in a hospital bed with your child and watch them vomit blood day after day after crazy day you can’t go back. Once you lie awake at night and wonder if the drugs you’re giving your child will kill the cancer or kill them, you can’t go back. You can never go back to what life was like before that. Ever.

September is Pediatric Cancer Awareness month. Do you know what that means? It means that for thirty days our social media feeds will begin to shower statistics about the lack of funding available. Funding lacking from the Federal Government and Pharmaceutical Companies alike. For thirty days individuals and organizations will rally together and try to make a difference. And the truth is – they just might. But you know who none of that will make a difference for? The kids fighting right now. Kids like Izzy. Izzy.

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By the time the funding is there to support the research needed it will be tomorrow. And tomorrow will be too late for the kids waiting for a cure today.

So you know what you can do this September? Be thankful for what you have and be kind to those that don’t have it. Stop complaining about traffic on the interstate and the crappy weather. Stop making a big deal about things that just aren’t. Don’t look at what your life is missing but look at what is right in front of you. And then? Enjoy. Every. Second. That is the story of Izzy. She has brought and continues to bring life and joy to those around her. She teaches us to live in this moment and to never stop hoping for the next.

I accepted a long time ago that a cure for Stage IV Relapsed Neuroblastoma would probably not become available in my daughter’s lifetime. But that does not stop me from asking for a miracle every day of my own lifetime. It does not stop me from pleading with the Lord or in hoping. It does not stop me from enjoying what is right in front of me today and declaring that it will not parish.

Israelle – “But you are a chosen people, a royal priesthood belonging to God, that you may declare the praises of him who called you out of darkness into his wonderful light.” 1 Peter 2:9

Blessings on you today and in this month of September and LIFE for Izzy.

**If you do feel led to help support Pediatric Cancer Research, Children’s Oncology Group is a great place to put your funds. DONATE HERE

 

 

“I will watch them.”

 

Last week Izzy had quarterly scans. I received email confirmation that they looked stable but it was not until today’s appointment that I actually got to talk to our oncologist who had been out of town. It was not until today that I shared with many of you the good news we received at that appointment.

When she relapsed late last spring we knew that while remission was possible, it would be challenging. And we were told it would not last long. Her team was shocked when she so quickly responded to treatment. Just one dose of chemotherapy and there appeared to be no sign of disease in her body. “What does this mean?” I asked, so desperate for them to say she would be okay. “Could mean something, could mean nothing,” they seemed to imply, insisting only time would tell.

Three months later there was another scan that was not active. “Is she in remission?” I asked, still longing for assurance. “Maybe,” they said. “But there is still a spot there, it’s not active but it’s still there and it’s just too soon.” They seemed hesitant to use a strong label like, ‘remission.’

Finally, today – after one year of chemotherapy and good scans – they gave it that strong label. Today they called it: No Evidence of Disease / A Complete 2nd Remission. Today I read that there was no sign of a ‘spot’ on the report.

I sat in the Oncology Clinic with joy as I listened to the words I had waited so long to hear. I sat there with hope and I sat there with great pause. But it was not until my drive home that I grew overwhelmed with joy. Not until the long drive home that the world seemed to stand still as I remembered my prayer time with the Lord last night. As I remembered, my heart stopped for just moment and when it started again it was more whole than it had been in a long, long time. This is the story of what I remembered…

Izzy wanted to sleep with me last night because we had an appointment in Cincinnati today AND because she was convinced that when she did it ‘encouraged her to get a good night sleep.’ So after further negotiating I climbed into bed with her captivating smile. We were talking about our dog and how old she was and Izzy said she hoped she made it to her next birthday. Without skipping a beat I began the same old talk I give every time she mentions death. The talk about how everyone dies and when we die we go to heaven because we love Jesus and He loves us. I am well versed in this talk for I have long believed I would someday need to prepare her for her own death. I am so well versed in it in fact, that I completely detach from myself as I give it. “This is this and that is that.” I might as well be talking about her school supply list. As I talk I become void of all emotion, numb to the potential of love around me.

So last night, after I give my talk about death, this is what she says, “But one thing never dies, you know?” I assumed she was about to adorably regurgitate my language and talk to me about God. “Are you talking about God,” I asked, confident I knew where this was going. “No, but of course He doesn’t die either,” she replied. Her response puzzled me and I knew I would soon have to walk her back down an appropriate theological track. “What one thing doesn’t die,” I asked. “Your smile,” she said, staring up at the ceiling. “Your smile never dies.” I don’t remember how the conversation went after that because my heart broke into a million pieces as my mind began to run ahead of me.

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The truth is, I make a choice every day to declare LIFE for Izzy for one reason: because I do not have the faith to fully believe it. That’s why I have to declare it again and again. I have to make a conscious effort to believe it because inherently I do not. Inherently, I am exhausted and inherently I walk in fear.

I lay in bed last night long after she fell asleep still thinking about what she had said. I was so, so tired but my mind would not stop. I knew last week’s scans looked good but they never seemed to be good enough. In my fear and in my exhaustion I began a prayer exercise I had not done in a long time. I closed my eyes and pictured myself in a garden. I was surrounded by lush green leaves and bold flowers that seemed to go on forever. I sat on the edge of a stone fountain and watched my children play. This was a safe place for them, perhaps the safest place they had ever known.

I remember going to this garden in my thoughts years ago – when Izzy was first diagnosed and then again during treatment. I would lay in her hospital bed, tears flowing onto her bald head, and picture her running through this garden with long, flowing hair. And the Lord would always meet me there. I would picture him sitting next to me as we talked about my fear and my anger. I would say things to Him I couldn’t say to anyone else while she would run around and play with Carter. I could process what I was feeling because I knew that she was safe.

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Last night as I lay in bed concentrating on this image of my children playing in the garden something different happened. The Lord came and sat next to me at the fountain just like he always did but as I started to talk he stopped me. He pointed away from my children to a couch I had never seen before and very simply He said, “You sleep. I will watch them.” It seemed very unprofound and yet as I looked to the couch I understood. As much as I wanted to watch over them and try to ensure their safety I was too tired. And having tried to do it for so long I knew I really didn’t have the power to protect them anyway. So with surrender I stood from the fountain and walked across the garden to the couch. I closed my eyes, then opened them one last time to be sure he was watching them. He was.

When I woke up at 4:30 this morning I completely forgot about the whole thing. I climbed out of bed with the same weight I do every day. I drove to Cincinnati, listened to the doctor and drove home. It wasn’t until I was driving home listening to a worship song that I remembered. It was a Matt Hammitt song that was very significant to me during aggressive treatment. The chorus says:

I couldn’t love you more, no I couldn’t love you more but somebody does. And as I heard the words I remembered last night.

You are mine for a moment but you are His, forever His. And in this life I am holding you but in His arms you live. As they washed over me I remembered the words of the Father: “You sleep. I will watch them.” And He was. He really, truly was.

I still don’t pretend to know what God has planned for Izzy’s life. But I am more sure today than I have ever been that He does have one.

Blessings on you today and LIFE for Izzy.

Photos courtesy of: Lantern Tree Photograpy

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.

—–

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…”

—–

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.

 

 

 

 

 

 

 

 

 

 

 

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.

—–

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.