Shine

I have been home for two days spending time with Carter waiting by the phone for Kendrick to call and say they were releasing Izzy. Last night he called to say they had given up on the new feeding tube, were swapping it out with the old one because it kept getting twisted up in her stomach, and then they could come home. And then moments later she came down with a fever.

Medical Interpretation: She is currently what they call Neutropenic, meaning a specific type of her white blood cells is below five hundred. It always happens about a week after chemo and is totally normal. But if you get a fever while you are Neutropenic you have to be in the hospital on antibiotics until your counts rise above five hundred. That usually takes Izzy about a week.

Personal Interpretation: Goodbye long week home together before the next round of chemo. Goodbye trick-or-treating in a princess dress with Carter.

Tomorrow I will drive back to Cincinnati with her Halloween costume and break the news to her. She’s going to be BRAVE which I think is more than appropriate. She’s also going to be broken-hearted. I’d love to tell her that this is the perfect holiday to sacrifice. That if we were going to pick, Halloween would be the one to spend in the hospital over Thanksgiving or Christmas. But the truth is I don’t have any control over any of it, so I don’t dare bring it up. Right now we are scheduled to be home for the major holidays but I won’t promise her that because as we know anything can happen.

Yesterday was a back and forth day for me filled with joy and sorrow. I was so glad to be home, but longed for her to be here too. I was so angry that she hadn’t gotten to come back with me Saturday night and yet when she came down with a fever yesterday, I was thankful she hadn’t been released the day before. It would have been so hard for her to have to go back to the hospital twenty-four hours later. I just kept crying out to the Lord throughout the day, desperately longing to know that He was near. And then last night as I was unpacking medical supplies that had arrived from home health care, supplies we never seem to need because we are NEVER home to use them, something amazing happened. I was walking out of Izzy’s room with a heavy heart and just as I left something caught my eye causing me to stop in my tracks. It was something that she had hung on her wall six months ago but suddenly had a whole new meaning. Something I’d probably seen twenty times a day at one point and yet now it was like I was seeing it for the first time.

It was a heart that was used as a decoration at a Women’s Conference I had been at and brought back for her. At the conference they had written a different verse on each heart and hung it on the end of the aisles. Women had prayed over them believing that God had a special verse for each person that would take one home. At the end of an evening session a friend and I had noticed how pretty and girly they were and decided to take one back to our daughters. The heart I picked had no meaning to me, it was just the prettiest, ‘izziest’ one. She had been disappointed she couldn’t go to the conference with me that night so she was excited when I came home with a frilly treasure for her. She carried it around with her for a few days and then found a place in her room where she wanted me to hang it. The spot she chose drove me crazy. It was off center and awkward, but I put a nail there just the same and let her hang it up. It’s hung there ever since as merely a decoration and nothing more.

Yesterday what I read on the heart was one word with a scripture reference that took my breath away. A reference I didn’t even know until last week. The word was “SHINE” but the scripture reference was Isaiah 60:1, the same verse a friend texted me last week that spoke so greatly to me because it aligned with what I saw when I was praying for Izzy. I wrote about how it spoke to me a few days ago, and I have continued to pray that verse over her believing God had given it to me for her. It just wasn’t until last night that I realized God had given it to me for her six months ago, I just didn’t know it.

When I left that conference I never, ever thought that God intended that verse for me let alone Izzy. Because that wasn’t my heart. I didn’t walk out asking Him to show me the meaning of that verse in my life or to bring it to fruition. But I didn’t have to. We don’t serve a God who only shows Himself to us when we ask. He is setting things into place everyday so that when we do cry out to Him He can show us that not only is He near today, He’s been hanging on our wall for six months waiting for this very moment. Because He knew even before the darkness, that it would come. And when it did He would be in it with us just waiting to SHINE.

In the Darkness

I have spent the greater part of the past four months living on an Oncology floor. We live in a world of darkness here where there is little room for light to shine. Hope is something to fight for, faith is a constant choice and peace seems like a thing of the distant past. There are questions that will never get answered and a sadness that floats through the hall like the crisp autumn breeze. You can feel it against your skin as you pass someone in the hall. Each time someone dies we all feel it. Like a stone being thrown in a quiet pond, the place of impact feels it the most, but the ripples continue outward touching us all. The closer you are to the family the more you feel it, but everyone on the floor feels it a little. There is a camaraderie between everyone who has walked down this path with you or before you. 

The pain along this journey is insurmountable, but by far the most difficult part is the loss of control. It hits on a broad spectrum with diagnosis and day by day it begins to consume every last detail of your life. Layer by layer I have continued to lose control. It started with the unknowns of cancer, next it was being separated from my other child and then having to step down from my job. But now I long for control in the mundane. I’d just like to know when the doctors are stopping by each morning for rounds so I know when to shower and when I can run downstairs for coffee. But I dont even have control over that.

Izzy is doing well today except for some nausea. This week she finally made it out of her room after thirty five days in isolation from C-Diff. She is thrilled to be going on walks downstairs again and is back to painting in the playroom. They said she could ‘maybe come home tomorrow’ but they’ve been saying that since Tuesday. The new feeding tube has created problems of it’s own but hopefully soon they will release us anyway. I would love for us all to have a long week home together before round six. And I know she would love to be home for Halloween to dress up and just be a kid. 

I always wonder after I write if I have accurately portrayed our journey. I read and reread each entry before finally hitting ‘post.’ I care little about the typos or grammatical errors. Of greater importance to me is if I’ve done our journey justice. Or the opposite, have I over done it? I can’t say for sure on the first, but I’ll tell you that I have decided it would be impossible to over dramatize this experience. Best I try, and I will keep trying, I do not think there are words in the English language that fully capture what’s taking place in my heart. Pain this deep can only be communicated through a secret, unspoken language that I have become more fluent in each day. Because each person’s journey through this type of pain is so vastly different, it’s a language only truly understood between the Creator and it’s creation. I find myself thankful to know the only other One who speaks it. Perhaps you too have discovered it along your own journey.

Of Dreams and Prayers

One of the first things we did after Izzy’s first tumor was removed back in December was plan a trip to Disney World. We had just gone last year and weren’t planning to go again so soon, but the whiplash of learning she had cancer and then learning it was gone made us appreciate every moment we had together. Our trip was planned for this week. For months I counted down the days til I would see her there in all her glory running around in a different princess dress every day. But clearly we aren’t in the happiest place in the world this week. We’re in the hospital.  I can promise you I haven’t seen a single pumkin carriage here, not one fairy god mother, and certainly not a castle. And what’s worse is most of the time this place is missing a Daddy and a Big Brother too.

Out of the past thirty five days she’s only been home three. We’ve finished this round of chemo and she actually recovered quite brilliantly from it but we are still having problems with her feeds. Tomorrow they are doing a procedure to redirect the tube that’s in her stomach directly into her small intestine. Her feedings will now bypass her stomach entirely. It’s not ideal but calories are so important to recover from chemo and IV nutrition is just so hard on your body. Everyday we make difficult choices and there simply aren’t any easy answers. Anyways, as I stand over her in recovery tomorrow and look at her with no hair, no eyebrows and no lashes, I’ll do my best not to think about how we were supposed to be riding It’s A Small World.

I know that going to Disney World isn’t the most important thing but I find myself desperate to see that Izzy does what she longs to do in life. Like going back to Disney World? Maybe. But there are two dreams she has that she’s been speaking of more and more these days that I think are even greater. For as long as I can remember she has said she wanted to be a baby doctor someday. She has since ‘discovered’ that doctors just walk around and talk all day which she finds neither impressive nor intriguing. Now she has decided that someday she wants to take care of babies that don’t have moms or dads or homes. This dream moves me because it’s evidence of the spirit of compassion and the heart for justice that are within her even at four years old. This dream makes me smile. It makes me proud.

The other dream she’s been speaking of isn’t nearly as noble as the first and yet it’s the one that makes me feel the most emotion. Someday she hopes to ride on a school bus. This dream is a painful one to hear because it’s something that most children will have the opportunity to do without effort and like so many other things it’s something that I can’t guarantee for her. If all goes well we will still be finishing our treatment plan next year at this time. Who knows when she’ll start school. But then again, who knows anything anymore.

It seems like only yesterday I was sitting in my office at the church working. I remember coming home from work to the synchronized shouts of ‘mommy’ as I came through the door. I remember going to the zoo and the splash park and having picnics on our deck in our wooded wonderland. And I remember thanking the Lord every night for the peace in our life, for the blessings of our children, and for the provision of our health and safety. But you know what I don’t remember? Meaning it. They were lines of thanks I recited out of obligation and obedience. Maybe I did mean it a little, but nothing like I would mean it now. I couldn’t have. There’s no way I could have known how precious, how valuable it was until it was all taken away and the thought of it ever returning remained in question.

Last week shook me to my core. Our doctors are not that concerned about the pathology reports and have continued to remind me of that. Still, it took a toll on me and has taken several days for me to settle down. One thing it stirred in me is a call to pray WITH Izzy more and more about her healing. It is something that we used to do every night and somehow it has fallen off my radar. I pray aloud for her and she just listens in agreement….

“Jesus, thank you for Izzy, whose perfect and wonderfully made.

Watch over her while she’s sleeping and help her to not be afraid.

and take away all of the cancer and keep her healthy and safe.”

The first two lines I’ve prayed over both my kids since as long as I can remember and the last verse has been recently added. After she falls asleep I lay my hand on her side and pray on my own. The image I see when I pray is light shining into her body breaking up the cancer cells. So I will continue to ask the Lord for His light to flow through her and bring healing and I would ask you to do the same.

Today a friend sent me some encouraging words including a scripture that seemed to confirm what I have been praying the past couple days. Receiving a verse that lined up with wear I felt the Lord leading me to pray warmed my heart. So maybe we aren’t at Disney this week, I can’t change that. But I’ll gladly settle for a word from the Lord instead.

Isaiah 60:1 “Arise, shine, Izzy! For your light has come and the glory of the LORD rises upon you.”

“I’m sorry”

When your child has a life threatening disease there are two words you never want to hear in regards to test results, “I’m sorry.” Who knew two words that have always brought comfort and warmth could suddenly instill fear. Those two words finally brought me to my breaking point this week as I heard them over and over again in regards to pathology reports we got back on the tumor. 90% of the cancer cells were still alive. That means that the chemo didn’t actually kill most of the cancer, it just shrank it. In neuroblastoma that information is not a predictor of how things will continue to go, but it wasn’t what our team was expecting. A report that said the cancer was almost completely dead would have, in the words of our doctor, made everyone feel warm and fuzzy. Instead we got results that made people say, “I’m sorry. That’s not what we had hoped.”

Our doctor (the expert) still believes things will continue as planned for Izzy. He still says that all the important stuff you need to see at this point to keep moving towards a cure we have seen. A clear MIBG scan and practically 100% of the primary mass removed. He’s still hopeful. Atleast someone is. I managed to lose my hope in a puddle of tears as I wept on our bathroom floor one day This past week. “Please save her, Lord,” I pleaded over and over again in desperation. “Please.” 

I don’t walk around everyday in the reality that this is life and death. I see a child who is suffering and my heart breaks, but I don’t think about the unknown possibilities of tomorrow. I can’t live in that reality everyday but this week I got a brutal reminder of it. 35% of Stage IV Neuroblastoma patients find a cure. If they can make it to cell the stem cell transplant those odds jump to 65%. We have to be cancer free to make it to the transplant. In six weeks we’ll have more tests to see where we are. 

Most days along this journey I feel like we’re climbing up a mountain of gravel on our hands and knees. The gravel just continues to slide underneath us trying to take us down and steal every inch of victory we’ve claimed. That’s the thing about climbing up a mountain of gravel. There’s nothing sturdy enough to hold onto, no ground firm enough to regain your grip. There is nothing, nothing but the grace of God that can help us find our way to the top. I don’t know why we’re on this mountain. I’d give anything in my life to have another mountain, any mountain but this one. But this is the mountain He has allowed for us. So I am left with two choices each morning. I can wake up with the new mercy He has deposited in me and keep climbing or I can roll over and go back to bed. God forbid I ever go back to bed. God forbid I ever stop climbing. I will climb this mountain until He reaches down from the heavens to pick us up ever so gently, only to set us down on the other side.  

Yesterday Izzy began her fifth round of chemo. There was no break after surgery, no quick trip home, we need to keep on schedule. Last night she woke up every twenty minutes or so gagging on vomit in her sleep. She would sit up momentarily and then collapse on my lap. She was exhausted from the anti-nause meds. As she lay on my lap and I listened to her breathing I was reminded of simpler times. Times when I had rocked her in my arms and felt her breathing just the same. Times when Tylenol and Motrin could cure her ailments and I could keep her safe. But even that was just an illusion. I know now that even then the cells were there. There was a lethal weapon sitting idle deep within her aiting to explode and destroy our lives. And all the while I rocked her to sleep singing lullabys none the wiser. Please pray that it will die, this deadly weapon that keeps trying to steal from us. 10% of it dead is not enough. All of it needs to die. Either it dies or…. Pray with me so I don’t ever have to complete that sentence. I believe my daughter has a destiny that goes beyond Neuroblastoma. Join me in asking for it. 

A Safer Perimeter

Thursday was filled with good news all around. Upon our arrival at the hospital the surgeon told us a second look at the scans had changed his first impression of what we were dealing with. He now believed that the ‘mass’ that remained inside Izzy wasn’t actually tumor but scar tissue. Surgery confirmed most of what he believed to be true. Most of it was scar tissue. There were just two small spots that appeared to be tumor and he was able to remove both of them entirely except for a one millimeter place that was right between the kidney and the artery that connects to it.

That morning was a whirlwind of emotions. I had been up since 3am and surrounded by friends and family all morning. Having spent so much energy focusing on the surgery I had failed to remember how difficult recovery was. She had had this same surgery just ten months before and as I walked down the halls of the recovery unit to her bedside images of that last recovery began to flood my mind. The last surgery was much smaller than this one. They had only removed a small tumor, but this time they manipulated her bowel and stomach to chisel away at scar tissue that needed to be picked through with a fine tooth comb.

I passed the beds filled with children sitting up eating popsicles and sipping ice water. Each bedside was separated by just a brightly colored curtain. At the end of the hall were larger isolation recovery rooms with sliding glass doors. In the room they told me I’d find her obviously wasn’t a child eating a popsicle. What I saw instead was an unrecognizable figure lying on it’s back face turned toward the glass door. I peered in but didn’t dare open the door. The child’s face was swollen and round with no distinct features that told me this was my child. Without distinct features and no hair I could not tell if the child was a boy or girl.

The nurse motioned for us to come in. “Why is she so swollen? Why is she so pale?” I asked staring at the child they said was mine. They said it was all the fluid she had gotten but this seemed ridiculous. Even though she had a central line for access to run two types of meds or fluids at a time they had put in two more IVs so they could run four. Her once tiny arms were so swollen they would soon have to cut off the hospital bracelet which was now cutting into her skin. Between the oxygen line, the drainage tube hanging from her nose and the two drainage sites at her side she was lost somewhere in a tangled web of chords and fluid collecting around her. When she finally tried to open her eyes her eye lids were too swollen too part more than 1/4 of an inch or so.

The first two days after surgery were painful to watch. An epidural kept her pain under control except for when she would sit up to vomit. Her digestive system has been under constant stress from chemo on and off. Now things that may normally make someone a little sick to their stomach send Izzy over the edge. That first night she was up constantly but not from pain, from nausea.

It’s hard because everyone is celebrating the good news, everyone but Izzy. For her this has been the hardest week she’s had. The fact that all the rocks are out means nothing to her. She doesn’t even know what that means.

On Friday the day after Izzy’a surgery we got some big news about her treatment plan. We were four weeks out from a part of the plan I’ve been dreading. A part I’ve never had peace about. Friday we found out the study we were a  part of is off. There were problems with the study and it was stopped just befor Izzy was to move forward. From what they know now that change in plans could save her life.

When I first started this journey the Lord quickly taught me that the only way I would make it through was one day at a time. I began to stop thinking about tomorrow all together and focus just on this one day, asking for the grace to get through it – “give us this day our daily bread.” And that was all I could do for a season.

But it seems that there is a shift now. Like now I’m moving into a new season. We’ve had some hard days and I know we have some really hard ones before us too. But asking for the grace to ‘get through’ isn’t enough anymore. I find myself wanting to hope. To hope for a time when this will all be a thing of the past.

In the beginning, I didn’t have it in me to hope. But over the past few days the Lord has shown me He’s trustworthy. He is delivering my Israelle. He showed me twice in the same week and now I’m ready to hope for that continued deliverance.

I wish I could say I had it in me all along…to hope for it. That all along I’ve been sitting back with my legs propped up and a smile on my face knowing with certainty that God would come through. But I didn’t. I’m a real live person and I’m broken. Just because we don’t always trust the Lord doesn’t mean He gives up. He never gives up on us, never stops loving us and never, ever leaves us to walk our journey alone.

Today He has given me reason to hope for tomorrow. I have stood at the pit of hell and looked in with despair and disbelief. But step by step He has pulled me back to a safer perimeter. And I will wait in eager expectation for Him to pull me further away until the pit is no longer in sight.

Vast Understatements

It still seems so surreal, this journey I am on. I can’t believe that this is my life that I’m living and that this is my child I’m looking at. My child who walks daily with suffering and injustice. This road is harder to walk down than I ever could have imagined in a thousand years. Most days there simply aren’t words that would do justice to describe the things I feel. Words like ‘sorrow’, or ‘pain’ seem to be such vast understatements to the emotions enveloping me. 

We came home Monday after twenty-six days. I had come home the weekend before to spend some time with Carter but Izzy hasn’t seen our house in nearly a month. She told me Sunday she couldn’t remember what her room looked like. This trip certainly won’t etch it in stone for her. We’ll return tomorrow, or in the middle of the night tonight, rather. Her surgery is scheduled for 7:30am. Her scans showed that the cancer is responding well to treatment. The ten or so spots in her bones are no longer visible and her primary mass has shrunk considerably. It still wraps itself intimately around arteries that lead to the left kidney. They won’t know until they get in there if it too needs to be removed. A kidney for you and I is really no big deal, but for someone going through cancer treatment, kidney function is huge. Having both kidneys is the best case scenario to ensure she can receive the maximum dosage of drugs during the remainder of therapy. Needless to say tomorrow is a big day for us. 

I’m learning that everyday is a big day though. That’s why everytime Izzy comes home I take Carter out of school for a day or two. Tomorrow isn’t a guarantee for any of us and I am now more aware of that than I have ever been. When it’s all said and done I would rather look back and see that Carter spent time with Izzy when she was home and felt well than have a certificate of perfect attendance hanging on the fridge. He needs it and so does she. And to be prefectly honest, so do I. It warms my heart to see them together.Their times together are so few and far between that they cherish every moment. Their laughter is contagious, their smiles are inspiring and their willingness to sacrifice for one another and share can come only from children who have truly longed for one another. A year ago I never would have dreamed that Spiderman and Cinderella could have had tea parties that would bring tears to my eyes. 

Before we came home Izzy told me she couldn’t wait to go “fire flighting.” ( I think that’s her term for catching fire flies. It’s kinda catchy, I know. You’re welcome to use it). I didn’t have the heart to tell her that she spent the entire summer in the hospital and it was too late to go fire flighting. Before I could even think of how to change the subject she began to cry. She then confessed that all she really wanted to do was go swimming like other kids but she couldn’t because of her “dressing.” (That’s what covers her central line). This time I did tell her that summer was over and even other kids weren’t swimming but I didn’t tell her she would still have her central line all of next summer too. 

By then the flood gates were totally open and she began to weep about wanting her hair back. Her hair would never come back and never be as long as Pocahonats’ and blow in the wind like hers. She laid her little bald head on my lap and wept. As I stroked the the top of it, peach fuzz wet with sweat, my heart broke with hers. A mother’s greatest longing is to satisfy the needs of her child. I couldn’t give her hair, or let her swim or take her fire flighting. 

I think that God must feel the same way when He sees us suffering. Certainly at any point He could take away all the problems of the world in a snap of His finger, but He doesn’t and we don’t always understand why. He could have stopped Jesus from dying on the cross but He didn’t do that either. And yet knowing everything I know about Him I have to believe that it was hard for Him to watch that whole episode on the cross. I have to think that words like “sorrow” and “pain” must have seemed like vast understatements to Him too. That even though it it was necessary, it broke His heart.  Because even though I don’t understand what the heck is happening to my life, I do still claim to understand something about the nature of God. He is love and He is compassion. Those aren’t just qualities He posesses, they are who He is. So when He sees a child like Izzy crying, whether it’s because of mouth sores or because she wants her hair back, it breaks his heart. And when He sees me crying, whether it’s because I’m heartbroken for Izzy or I’m even mat at Him, it breaks His heart. Maybe you don’t agree, and that’s okay. But this is my journey and this is what I believe about my God.