Where We Live

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This is where we live again. This stay we’re on the back hall, the second to last room on the right. A week ago today we were still at home and I packed up the car and headed here to begin our final phase of treatment. I honked at Carter as he ran alongside the car waving until he reached the neighbor’s mailbox. I would cry the entire two hour drive to the hospital. Izzy, on the other hand, was excited upon our arrival. Dancing up and down the halls she greeted all her favorite nurses and told them stories of her time at home and her trip to Disney World. The next morning she hopped out of bed and put on a dress to join the doctors for rounds in the hall. “It feels so good to be here,” she said.

A few hours later that would change. Once the antibody began to take effect she was overcome by lower lumbar and stomach pain. She began running fevers that hit 107 and required oxygen while she slept. Everyday brought a problem of it’s own. Once the pain was under control the fevers came. When they left they pain returned. “Why was I excited to come here?” she asked. “I like to come here to see my friends but I forgot about this terrible stuff.” I lay my hand on her stomach to pray. She lays her tiny hand over mine and closes her eyes in agreement.

The doctors consider this week a success for us, over all. Even though the side effects were less than desirable, nothing happened to send us to ICU and that’s a major plus when antibody is involved.

Three days after the final infusion we are still here. She is still having a considerable amount of pain when her narcotics wear off so we sit here and wait. We wait for the pain to go away, we wait to find out if the reason it is still there is of concern and ultimately we wait to go home. While so many others are off celebrating the holiday weekend, we sit back and watch the world go by.

I imagine myself looking out the window of our room to a park filled with families having picnics. To kids flying kites and dogs chasing frisbees. To swings flying higher and higher in the sky. It’s silly, I know, because there is not a park out the widow. What I actually see when I look out our window is a brick wall. The other side of the oncology floor to be exact. What I see is this:
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This is where we live again and strangely all of it feels a little bit like home to us now. There is a comfort here that I both enjoy and regret. And while I do not want to be comfortable here, I do not entirely want to be miserable here. We live in a place where real live nightmares meet modern medicine. We live in a crazy kind of hell where kids are fighting every day for their lives and, truth be told, some will die trying. We live here, in this hall, in the second to last room on the right.

When I say it is our final phase of treatment it sounds more refreshing than it feels. I fear this phase itself and what lies beyond it. What is after this phase is a road I cannot see and surely don’t want to. If I had known at diagnosis how hard all of this would be, I’m not so sure I would have made it this far. So for now I’ll take a future of uncertainty. Sure, it is filled with fear but it is also filled with hope. Hope that we will never have to open this chapter again. Hope that every scan and every biopsy will forever remain free of disease.

But here we are now. My thoughts are scattered and my heart is hard. I am angry about the years the locusts have stolen from us and so many others I know. About the years they continue to try to steal. I want redemption. I want to believe the promise in Joel 2:25-27:

“I will repay you for the years the locusts have eaten—my great army that I sent among you.
You will have plenty to eat, until you are full, and you will praise the name of the Lord your God, who has worked wonders for you; never again will my people be shamed. Then you will know that I am in Israel, that I am the Lord your God, and that there is no other; never again will my people be shamed.”

I want desperately to believe that with my whole heart so I will read and reread it over and over again declaring it’s truth. If you are looking for a practical way to pray for us I would ask you to do the same. Pray that The Lord would restore to Izzy the years the locusts have eaten. Just as Izzy covered her hand over my own when I prayed for her tummy I would ask you to cover our family with your cries and declarations to The Lord.

“I need peace Mama,” she says when she cannot fall asleep. “Pray for peace.” Whether we’re in the hospital or back at home we live in a place where nightmares have collided with reality and we need peace to get through everyday. Pray for peace too.

Such is Life on This Journey

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Every afternoon at 3:40 Izzy and I pick Carter up from school and I am never really sure which one of us is more excited. Being able to take him to and from school is a privilege we both cherish. Once in the car he shows Izzy his work from the day and they talk about what it will be like when they go to school together. The moment we pull in our driveway they burst out of the car and into the house. For the next few hours they will play until Izzy tires or Carter gets hungry, which ever happens first. It is in these moments that I find myself forgetting the road we are actually on. For split seconds the nightmare we are still living seems a thing of the distant past. Then I remember it is not over and a panic washes over me.

In just three days Izzy and I will get in a car and drive to Cincinnati where she will be admitted for, God willing, just five days. I will take my daughter who has been running and playing carelessly in the yard and willingly hand her over for more treatment. Willingly submit her to pain, fevers and nausea, as if the four or five times a day she throws up now are not enough. I cannot find the words to express what that feels like. To look at her so joyful and seemingly carefree and know what is in store for her in the days ahead. Knowing all the while that she cannot comprehend what is about to happen or why it needs to.

There is a sadness that has come over me the past few days as I have begun to anticipate this next phase. I am not only sad because I do not know how Izzy will respond to treatment, I simply don’t want to see her in a hospital bed. Period. It is not in one’s maternal instincts. Actually, it contradicts them entirely. The very image says: ‘Something is wrong with you. So wrong, in fact, that I can’t fix it.’

As if all of that weren’t enough, I have to leave Carter. My precious Carter. I could write a parenting book on my experiences with him from birth through the pre-school years. From nearly losing him at birth to his developmental difficulties that no one could pin point. From spinal surgery to intravenous iron infusions at the same HEM/ONC clinic I would some day sit in with Izzy as they told me the horrid news.

I still remember one time when we were at the clinic with Carter when Izzy began having an episode of stomach pain. One of the nurses gave us a hot pack for her but suggested the ‘pain’ was a result of her watching Carter get so much attention over the years. I watched cancer families come in and out of clinic that day for chemo and labs, of course, never imagining that would be me soon. Never in a million years had I dreamed that the pain in Izzy’s belly was cancer. It is hard to believe we were right where Izzy needed to be but no one knew it.

I have veered off. Back to Carter. We have been through a lot together and so our bond runs deeps. It pains me greatly to know that I will be spending so much time away from him again. That often times I won’t be here at night to tuck him in or in the morning to be sure the first thing he gets when he gets out of bed is a hug. I’m not the only parent that must make these sacrifices. Every parent fighting for their child’s life is making a choice to be there. And in making the choice to be there they are making the choice to be away from something, or someone else. Such is life on this journey through cancer.

Still I know The Lord is faithful to walk this through with us. But I must keep my eyes on the cross every second of every hour of every day. The moment I look away I stumble, tripping on my own fear, anger or pride, which desperately wants to have control. Over the weeks at home I have grown quite comfortable relying on myself. This kind of living will never make it on a journey through this sort of hell. Surely I will perish if I am relying solely on my own abilities to get through. Daily I must surrender everything I have to focus on the cross. Through it He will provide the strength I need to carry on, the peace we all need for this transition and the healing we so desperately want to see forever and ever.

Overdue Update

There are days on this journey when I lack strength. Days I lack hope and days I even lack the energy to get out of bed. But there are never days on this journey when I lack emotion. A lot of times our days are filled with the rawest, most paralyzing collaborations of fear and sadness, helplessness and despair. But for the past two weeks we have been blessed by an emotion we aren’t entirely accustomed to. We have been saturated in the folds of joy.

Living like normal people in a house and taking trips for fun not medical necessity, we have enjoyed every second. There has been far more laughter than tears and for once in a very long time cancer has not carried such a weight on us. It has been just another word in the English language, seldom triggering much response when used.

Disney World
By now I’m sure most of you know we surprised the kids with a trip to Disney World nearly two weeks ago. We found out we had a whole week without any appointments and were, surprisingly, given permission to leave. Thirty-six hours after we booked a reservation we hopped on a plane headed to the ‘happiest place on Earth.’ And for those five days, for this family, it was.

Everywhere we went our family was blessed with favor and Izzy was treated like royalty. Most of the time it is the little girls who wait in line to see the princesses. But for us, on nearly every occasion, a cast member would grab the attention of the featured princess at the front of the line, take her aside from her anxious fans and pull her over to meet Izzy. The princesses were literally leaving their lines to come see Izzy. It was beautiful. We were connected to a friend of a friend who is a Disney employee and she was able to make exclusive dining reservations for us at a couple places last minute that we would have never been able to make. From the moment we surprised the kids (with a local news station filming it all) it was nothing less than magical.

Aside from all the special treatment and splashes of Disney magic, we had five days and four days where the focus of our life was not Neuroblastoma. Five days with no appointments or home healthcare labs. Five days where, despite the IV pole in our hotel room, we were not attached to a diagnosis. We were free to run up and down the streets of the Magic Kingdom laughing and playing in the sunshine… All. Day. Long. Though Izzy threw up every time she tried to eat and I had to give her boluses of Gatorade in her G-tube to keep her hydrated, she could not stop smiling. She had been in strict isolation since December 31st and this was quite the introduction back to into the world. She was the most resiliant of us all even in the heat, staying out with me hours after Daddy would take Carter back to the hotel. It was as if we had set a prisoner of war free and she was not turning back no matter what. She could have been exhausted, dehydrated, even had a broken leg or two, but she was determined to keep going. “I’m the boss of my body,” she would say trying another French Fry after she had thrown the first two up. She would not let the nausea control her. I smiled proudly and nodded agreeing with the words I had told her over and over again.

The only difficult thing about the trip was the racing thoughts in my mind that would come from time to time. The day before we left I learned that our youngest little friend from the Cincy Oncology floor had passed away. ‘Baby M,’ I had read on a friend’s care page. My heart had sank deep into my chest. She had turned two around Thanksgiving time. I remember her birthday well, we sang to her through the window of her hospital room door. She spent months alone in the hospital. The nurses loved her dearly and would carry her around when possible or play in her room. “Hi Gorgeous,” she would say to anyone that knocked on her glass door. She was gorgeous and I’m sure someone had called her that a time or two before. In December her grandmother had seen enough. She quit her job, packed a suitcase and came to stay in the hospital with her. She was a saint. Baby M had her transplant at the beginning of February. For weeks grandmother was one of the ones I ate with in the family lounge sharing stories of our days. Talking. Listening. I have no idea what happened to Baby M but I know she doesn’t have Leukemia anymore. I know she is with Jesus now and she knows nothing of the pain she felt here. Nothing of the sadness. With the sudden news of Baby M’s death I found myself reminded again just how real cancer is. It was more than just a word and the heaviness of it would come over me every now and then. Out of nowhere the enemy would pummel me with waves of fear, “What if this is our last trip here together? The last time I see her face light up here?” Everyday it was a fight to look past the fear and focus on what we had for the moment. By God’s grace I managed to stay on top of the fear. It would not control me. I was the boss of my body and I would not let fear steal our five days of joy.

Poppy’s Lake House
This last weekend we even got to go to Poppy’s lake house. Kendrick’s parents live on a lake and we have not been out there since before her diagnosis in June. Though she knew she wouldn’t be able to swim, Izzy has often talked of going back out there. We used to go out there quite often and it is one often kids favorite places, there simply hasn’t been time this past year. I will admit that there is an unexpected pain that comes in doing things that you used to do ‘before’. While she loved running around playing with things she hadn’t seen in nearly a year, every now and then you would catch her staring down at the lake watching the ripples in the water or a boat buzz across the shore. “Are you sad?” I asked her once. “No,” she replied looking down at her toes. Then she continued. “Nothing is fun if you can’t swim.” It was too cold to swim anyway and it was sprinkling on and off all weekend but I knew that wasn’t the point. “But honey, no one can swim.” We talked more but as I watched her eyes find the lake again I imagined her remembering what it felt like to be able to move freely through the water. I thought of how paralyzing it must feel to not be able to feel water over your entire body. To have another person, a medical institution, place something in your body while you were asleep and then tell you once you were awake you couldn’t be under water for the next year and a half. That must be unimaginable for a child. One who loves to swim, whose favorite part of the day used to be bath time. But now she cannot do either and as I watched her stare mindfully at the lake I knew this alone had a greater effect on her than I would ever know.

What’s Next
I know everyone’s dying to hear what’s next on the horizon for us. Well, I haven’t known exactly which is part of why I’ve waited so long to write. Yesterday I was finally able to sign consent for Antibody Treatment which will begin late next week. It has taken awhile to get through all the red tape of this research study and we had to get a PET scan of the cyst the other scans found which came back fine. After that an exception study had to be written for us since we are outside some of the perimeters of the main study, regardless, we got approval. We are so thankful to our team for their continued dedication and faithfulness.

For this third and final phase of treatment Izzy will be receiving Antibody 14.18 in conjunction with the standard Immunotherapy. ‘Monoclonal antibodies are proteins made in the lab, designed to attach to specific cancer cells. CH14.18 was designed to attach to neuroblastoma cells. When it attaches, the body’s immune system is stimulated to attack and kill the neuroblastoma cells without killing nearby healthy cells.’ We will be giving her other drugs to help make this process as effective as possible. Drugs to boost white blood cell production and maintain the response she’s already had to previous treatment. This phase consists of six, twenty-eight day courses of treatment. Each course looks a little different and will consist of varying amounts of time inpatient depending on how she responds. This phase should, however, be filled with our shortest stays in the hospital thus far and if all goes well should finish up mid-November.

While we are hoping to have more time at home during the next six months, this therapy is intense and has harsh side effects. It causes a lot of pain, fevers and most unfortunately for us, blood pressure problems. For this reason we are starting out at only a quarter of the recommended doses for one of the drugs and will increase as tolerated. I will update with specific prayer requests as the days approach. I cannot emphasize enough the need for prayer that the cancer cells are banished from her body forever. Though a lot of children do well this far into treatment, they are at ‘high risk’ for the disease returning. Join me declaring this unacceptable in Jesus’ name.

She will not be admitted until Sunday evening, May 19. Until then we have freedom – and I don’t plan to write again until then – it’s hard to write when you are enjoying every moment of life, you know. I am so thankful for these days at home enjoying life. I am thankful for days I can pick up Carter from school and watch the kids run around the yard. All things I never knew mattered quite so much. I am choosing not to think about the future or the odds. I’m choosing not to indulge in the great ‘why’s that cross my mind daily. For now, I’m choosing to focus on the gifts I have been given today, especially one tiny little princess whose home, NED and feels so good she can seldom stand still long enough for me to take a picture of her in focus.

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