Resurrection Life

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Izzy has completed seven of twelve radiation treatments and she continues to respond beautifully. There are multiple labs they continue to monitor and all of her numbers have remained perfect, showing no indication of TMA. I thank God for this victory and all of you for praying. I am thrilled to report that if things continue to go well next week we can go home after all of our appointments on Friday! It will have been Ninety Five days since Izzy has been home. Ninety Five. Before transplant I was told we would be here Forty. Of course no one could have predicted that things would go the way they did and in hindsight I find myself relieved. If I had known how long we would have lived like this, how long my children would each have to be separated from one parent and each other, it would have been too much. Not knowing made it much more tolerable. Please pray this week that things continue to go well. For the sake of Izzy’s health and our family.

Radiation completes the second phase of treatment, Consolidation. Sometime in the next couple weeks Izzy will have scans again to see if she remains No Evidence of Disease. This is, of course, the only result that we will accept. Now that she has gotten there once we want nothing less EVER again. In four to six weeks we will begin traveling back and forth to Cincinnati again for six months of Immunotherapy. This is the final phase of treatment called Maintenance. The process of Immunotherapy will look a lot like chemotherapy but they are very, very different. During Immunotherapy Izzy’s white blood cells will be learning to seek out any remaining neuroblastoma cells and kill them themselves. I will update with more details as we get closer to our start date.

Today is Easter, a day when Christians around the world celebrate the power of resurrection life. For the first time in ten years I have not put energy into how a congregation will celebrate it. I have not sat through staff meetings talking through the importance of each element of the service nor prayed for people who would walk through the doors so desperate for the power of resurrection life. Yet this year I find myself more desperate for it’s power than I have ever been. Desperate for power to bring light to what darkness has tried to claim in our lives. Desperate for power that can restore life once again. I believe in the power of resurrection life and am forever thankful for a Savior who died on the cross to give us access to it.

If Dolls Could Talk

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It is early morning, not even the sun is up yet. Izzy slides her body slowly down the side of the bed on her stomach, waiting for her toes to hit the floor. She drags the backpack which holds her IV nutrition behind her across the floor, trying not to step on the tubing. She has hours left until she will be free from this ball and chain that nourishes her. Her steps are stiff and small and her body is hunched over like a frail old woman. Ever since chemo really started taking hits it has taken more and more time each morning for her body to move without pain.

Standing at the hotel window now, only half awake, she looks out at the darkness before her, the tail lights of cars glowing as they pull out of the parking lot. I give her her morning meds through her G-tube as she stands there, with little disruption to her daydreaming. It is time to go now and I begin to bundle her up in her winter coat and help her with her shoes. I wear her IV backpack and she leads me like a leashed dog. I don’t make her wear her green mask, there will be few people in the lobby, but throw it in the bag for when we get to the hospital.

In the car she asks for the music up louder and louder, so loud that I can hardly think. Her tiny, pink hearings aids should arrive soon. I am anxious to see just how much they help her, convinced things are probably worse than I notice. To me her wearing them will be a visual reminder of her loss. But to her wearing them will restore something that has been taken. I am sure she will be happier being able to decipher what is being said around her all the time. Perhaps she will be less nervous around doctors if she knows what they are saying.

Our drive to the cancer center is short but she’s nearly back asleep by the time we arrive. This is not our usual hospital which is strictly for children. In fact, in the few times we’ve been there I have never seen a child. I am now quite used to people from the outside world staring at her. With no hair, a little green mask, and connected to the backpack I’m carrying, everyone knows she is, dare I say, ‘sick’. But the eyes I feel looking us up and down in this facility are different than eyes I’ve ever seen before. These are some of the most compassionate eyes I have ever seen because they are the eyes of grown, mostly elderly, men and women who also have cancer. They have what none of the rest of us have access to, an inside glimpse of what she actually ‘feels’. I have spent nearly every second of everyday with her along this journey. I have watched it all, but I cannot ever say I know what it feels like. Often times I catch myself when trying to comfort her, “I know, baby. I know.” Then I remind myself that I do not.

A few months back, following a very traumatic procedure that occurred while she was awake, she began roll playing medical procedures on her baby doll. She told me that the doll, Miss Judy, had cancer. She said it would take a long, long time for it to go away. During these procedures on Miss Judy that were hurting her she would comfort her and tell her the doctors were nice people who only meant to help her. She began to tell me all the things ‘Miss Judy’ felt. ‘Miss Judy’ was afraid of sleep medicine but she liked to be asleep for certain things, like whenever they had to fix the tube in her belly. ‘Miss Judy’ did not like it when nurses held her down because it hurt sometimes. One night we couldn’t find something that Miss Judy needed to calm down and I told her it was okay. “It’s fine, baby. Miss Judy is okay.” She looked me straight in the eye with the candor of someone far beyond her years, shook her finger at me and said, “She is not okay! No one knows what Miss Judy feels but me!” How right she was. She had found the only way she could to tell me that no one knew what she felt. Since then I have been careful to let her be the one who communicates on behalf of Miss Judy.

Even though Miss Judy had walked through every day with Izzy, she could not fully know every detail of her heart, like any good doll should, until she shared her diagnosis. Until she had gone through the same procedures, taken the same medications, even had a central line placed. Then and only then could Miss Judy truly understand the things Izzy whispered to her at night. If only Miss Judy could talk I’m sure they would be up for hours.

Miss Judy can see Izzy through the eyes of someone who knows, firsthand, each detail that comes along with this disease. And so can the men and women we see at the cancer center. They look at Izzy with eyes of compassion like I have never seen. They are not eyes of pity or eyes fixated on our life like a car accident you just can’t turn away from. No, they stare at her with tears of grief at the realization that such a small, delicate child should go through the same horror they are living in. The first words out of their mouth are mere words of comfort, ‘Bless you,’ by a man I later learned has had brain cancer for five years. ‘Poor, thing,’ by a random man walking back to his treatment. I was completely unprepared to find some of the most compassionate faces on the bodies of grown individuals in the midst of their own suffering. It has been both humbling and deeply moving.

Over the past week God has given me the grace to stay in the present moment, never looking too far down the road, or at least not staying there for very long. I am working to make conscience choices focusing on what ‘IS’ instead of what ‘IF’. Choices to trust Him, if only for the day. To be thankful, if only for a moment.

“Trust is the channel through which My peace flows into you. Thankfulness lifts you above your circumstance….practice trusting and thanking Me continually. This is a paradigm shift that will revolutionize your life.” Jesus Calling

I need a revolution in my life, don’t you? The patterns and habits we use to give us illusions of control provide mere crumbs of peace compared to what He can provide. They satisfy us for a while until we need control more than we’ve ever needed it before, perhaps when we wake up in the midst of tragedy, and then they fail miserably. We would have more luck finding comfort in our childhood baby dolls than finding lasting peace in our own self-contrived strategies. We need the kind of peace that is sustainable and life giving. The kind of peace that only Jesus can give. He gives it freely, but it is up to us to accept. That acceptance cannot be found in a church, it cannot be found in religion. It is a daily act of surrendering what isn’t working and in it’s place allowing Him to wholly fill us with Himself.

The Shadows of Suffering

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It is Sunday night and Izzy and I sit alone in our hotel room. We had family here all weekend but everyone is gone now. It’s just the two of us snuggled warmly in bed while the snow begins to fall outside. I have not been home in three weeks and it has been two and a half months for Izzy. If I were to guess, I would say over the past eight and a half months she has probably only spent four or five weeks there. Home is merely a memory for her. She doesn’t ask about it anymore. Living in a hotel has satisfied her desire for freedom and I provide both the security and stability she requires.

Nearly three weeks after discharge Izzy is doing remarkable. She’s running around here like she owns the place and even playing golf and riding her scooter up and down the halls. She’s strong enough to climb in and out of the car on her own and beginning to take bites of solid food. Honestly she’s doing better than she was even before transplant. Naturally it is time to knock her down again – we start radiation tomorrow here in Cincinnati. The first two days are just preparatory and then she will receive outpatient radiation to the surgical bed around her left kidney for twelve days beginning Wednesday.

They decided to keep us in Cincinnati for radiation to keep her on Solaris to prevent a TMA flare it can trigger. We need desperate prayer that the TMA does not flare up again. Her kidney function is back to optimal performance now without any medication but these twelve doses of radiation are going directly around one of her kidneys. They will do their best to shield the left kidney but it is impossible to block it from all exposure. Too much exposure could trigger another flare which could result in kidney failure. Kidney failure would bring problems of it’s own, but our biggest fear is not being able to continue down the path of treatment we are headed. A path that increases the chance of a cure by an additional 20%. Please pray specifically for the protection of her kidneys. Pray that this radiation kills any invisible cancer cells that may be present but still undetectable. That’s how Neuroblastoma works. A patient is labeled ‘No Evidence of Disease’ because there isn’t disease that can be detected, but it will be years before we are given the word ‘cured’ meaning hers has proven itself to be all gone. That is why they continue on with treatment. The statistics for relapse are so high they always assume there are still some cells remaining. And the those statistics after relapse are horrid.

I find myself lost in the dark shadows of suffering, struggling to hope, fighting to keep my head above water. Daily Izzy dances around our room giggling with innocence. She talks of all the things she longs to do. Plant flowers. Go to Poppy’s lake. Build a sand castle. Swim. Go to Disney World. Most of which will not happen in 2013. I cry because I know I can no more promise her that she can do her favorite things than I can promise her it will not rain tomorrow. I am sad and long to go to bed but she is so full of life and joy she wants only to lay awake all night laughing and talking. My heart is broken to see her so happy and so healthy because I know more treatment is on the horizon. And when she recovers from that there will be more. She will drift off to sleep dreaming of her favorite things. I will cry myself to sleep wishing she could have them in real life.

I have put off a written update as long as I could because I never wanted this journey to be one that takes people down with it. But I have no need to pretend to be something I am not, to pretend to be stronger than I am. If I have ever been anything it is authentic. I cannot write words of joy and hope when I do not possess them. I can only paint a picture of our journey as I see it on any given day. Somedays I see the potential for it to be a beautiful work of art when all is said and done. I see the blobs of color on the canvas as they come together with the potential for brilliance. But then there are other days. On those other days I simply can’t look past the shadows suffering has cast on the room to even make my way to the canvas.

The past few mornings Izzy has woke up singing ‘O’ Come, O’ Come, Emmanuel’, which I haven’t sang to her since the first few weeks in January. Once again The Lord reminds me that first and foremost she is His child. Even though I am so tired and broken down, He has ensured that this song of liberation continues to make it’s way into her spirit. I can only imagine what has been happening in her dreams before she awakes singing, “Rejoice, Rejoice. Emmanuel. God will come for you, rescue you, Israelle.” (Her version)

Happy Birthday Izzy

Today is Izzy’s birthday. In her honor I have put together a video of this journey. The photographs tell the story along the way, from the first picture which was taken the day after her re-diagnosis to some of the final ones which were taken just this week. The song was recommended to me by my friend Sarah, whose son is another brave warrior on this battlefield. For the past couple months I have listened to it hundreds of times as I lay in Izzy’s hospital bed weeping from exhaustion and despair. I urge you to listen closely to the words. They are words of hope and words of redemption. Words of a desperate people who need a God that is desperate for them. They are words I am declaring for Izzy today.

Happy Birthday Izzy. May God bless you with a hundred more.

A Prophecy of Healing

Life in the hotel is not quite what I was expecting because Izzy is still getting started with life after transplant. She isn’t allowed out in public places yet so we are confined once again. At least at the hospital I had a variety of people to interact with throughout the day but not here. It isn’t that her counts are low, it’s just that her immune system has been completely reset. Her body has no memory of simple viruses that ours have learned to fight. In a few months restrictions will slowly be lifted and eventually she will need to be completely revaccinated. Until then we will remain ‘in hiding.’

Since she has shed her old skin and fingernails from the intense chemo that were administered the ones she has now are brand new, just like the little sprouts of eyebrows and lashes that are coming in. To say she is a ‘new creation is more than just a beautiful metaphor. I, however, feel like a very old, very tired one. I do have a new perception of reality. One that has been molded through tears of pain and alienation. I have a new sense of self, whether I like all of it or not. One that has risen up through the crumbling around it. I have new fears and new dreams, most of which I seldom thought about before but now would nearly give my life for.

Back in the Fall when Izzy was over on the Oncology side and was actually allowed out of her room, we used to see a little boy who I’ll call John. Izzy would always ride her little pink school bus and he would ride his John Deer tractor up and down the halls, their IV poles never far behind. John went over to transplant at the beginning of December and was getting discharged shortly after Izzy got her cells. His room was just across from ours and on the day of his discharge he caught me in the hall as I walked down to get some water.

“Hey Lady!,” I heard from behind. I turned around to see five year old John standing in his doorway, door propped open with one hand and the other hand on his hip. He stood wearing only a white t-shirt, socks and a pull-up. (Most young kids regress back to pull ups during treatment because of the large volume of fluids hey receive). I smiled at his boldness, knowing he wasn’t allowed to have his door open. “Hey there, John.”

“I’m going over to RMH (Ronald McDonald House) today. Mom’s over there taking some of my stuff right now,” he said, so excited he wasn’t really breathing between sentences.

“That’s wonderful. You look like you’re doing great,” I told him, thrilled to see him so happy.

“Ya, Jesus healed me. How’s your little girl doing?”

I couldn’t believe he had said it so plainly. It was so pure, so beautiful. “She just got her cells,” I told him, “so she isn’t feeling quite as good as you just but she’s alright.”

“That’s okay, Jesus is going to heal her too.” When he said it I got chills. Then he continued on to other important things. “Did you know we have an isolation room over at RMH? We can even have food in it?”

We talked for another minute or two before a nurse came along and reminded him about the ‘germies’ that were in the hall. He didn’t care, he instantly directed his RMH excitement towards her.

“Bye, John,” I said, laughing.

“Bye, Lady,” he replied, shamelessly not knowing my name once again.

John, passed away last Monday two days before our discharge. He had been doing well and then relapsed just the week before. It was hard and fast and then it was over. The doctors and nurses up there deal with the death of children everyday. The rest of us do not. As I was coming up from the pharmacy that afternoon I saw his parents from afar. They were leaving the hospital alone. They were leaving for the last time. For every child that is fighting cancer there is a parent who fears that someday that will be them. We may have hope that get us through the day but it is glimpses of that fear that wakes us up in the morning and tuck us in at night.

Perhaps you are thinking, “But things are going so well.” That is true. But even at this point in therapy 50% of neuroblastoma patients still relapse. That’s why we continue on with so much more treatment. The cancer may be gone, but we cannot stop petitioning the gates of heaven. The battle continues, we are just playing offense now. That means when I pray for her now I don’t just ask for any invisible cancer cells to flee, no, I DECLARE LIFE over her and ask God to fill her with His Presence in such a powerful way that there is no room for cancer there ever again. I ask Him to reclaim his territory.

Last week I also prayed a lot for John’s mom. It was not his dad or his siblings but his mother whose heart I could not get off my own. I was overwhelmed with burden for her and I just prayed that she would be able to reconcile this nonsense. I prayed that she could feel the embrace of the Father without having to believe that He would ever want a child, her child, to die.

Like so many of the other children I’ve met along this journey I will never forget John. That last conversation I had with him will forever echo in my mind pummeling questions at me that can never be answered. “Jesus healed me,” he said. “Jesus is going to heal your little girl, too.”