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.