A Holy Distraction

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It was the morning of the first day of school and by the excitement in our house one would have thought it was Christmas. Hundreds of thousands of kids were getting ready for school that same morning, but few were doing it with the enthusiasm of a child who had been locked in a hospital for the past year. This morning was so much more significant for Izzy. It was not just a milestone in her growth and development, it was even more than a sign of all that has been accomplished, all that has been overcome in the past year and a half. For our family this was the first day of a new kind of normal. One I could learn to learn to love.

That morning she drug the bag which held her IV pump and fluid on the floor behind her shouting, “School! School!,” as she ran from room to room. Carter sat on the couch with his iPad much less enthused about the morning. School was not a privilege for him, it was a chore. When I dropped them off a bit later they said goodbye. Carter’s eyes held my own as we parted ways but Izzy never looked back as the words rolled off her tongue. “Goodbye Mom,” she said mostly out of habit. Her eyes were fixed tightly on the doors ahead of her that she couldn’t wait to burst through.

That first day of school was priceless but the second and the third day took extra energy for me to even out of bed. On those days there was a stuffed monkey named Rose sitting in the chair at school assigned to my daughter. Instead of there, Izzy was in Cincinnati with me awaiting scans and their results had me paralyzed with fear. I found myself considering that this season of our life was too good to be true. Surely at any moment the sky would come crashing down on our new reality. Surely something would go wrong. For those two days as I listened to Izzy talk about school and how she couldn’t wait to get back, I sat quietly and wondered how I would break it too her if she couldn’t. My fear transitioned slowly into anger at the thought of other families who never had to live in this reality. Their kids were off playing at recess while my daughter was getting sedated two days in a row as we waited to hear what the medical community had to say about her destiny. A destiny they say she only has a 50% chance of living out. Consumed by anger and paralyzed with fear I began to read scriptures of promise over and over again. At first my readings were methodical, containing little belief or meaning. But as I read them again and again I began to mean the words I was saying. Though my flesh was afraid my spirit had hope again which propelled me to read the verses with authority. With declaration.

Friday evening we learned both scans were clear and Izzy remained No Evidence of Disease. The panic I had felt all week instantly subsided and we gave thanks to God for His continued deliverance. We rejoiced. But in an imaginary little place Izzy was grieving in a not so imaginary way.

Both days Izzy had brought her favorite baby doll, Miss Judy with her for scans. Miss Judy must go through everything Izzy does. She gave her ‘sleep medicine’ and put her through the scanner for the first set of pictures. It was then she told me. “Mamma,” she said. “Miss Judy has cancer. They found three rocks.” I looked at her shocked by her words. “But Izzy, I thought Miss Judy’s cancer was gone?”

“It was but it came back yesterday,” she said taking the doll off the toy scanner and holding her in her arms. “She has been running high fevers. She’s very sick”. She talked with little emotion which led me to believe there was little involved. I knew this was the way she processed her own reality. I told her we would pray for Miss Judy and continue taking her to Cincinnati. Together, with both of those things, she would get better.

But Izzy’s make believe world began to get very busy. There were many medicines that had to be given, prescriptions she had to refill and doctors to call. It was the night of the first scan she came to me, “Mama, I’m so worried about Miss Judy. I can’t get her fever to go away. I’ve given her all of her meds and it just won’t.”

I looked down at her gripping her baby doll against her chest tightly and thought for a moment about what to say. “Would you like us to pray for Miss Judy?” I asked. “Yes Mommy and pray for me because I’m so nervous about her,” she said, her eyes filling with tears. Together we prayed. And though we got news twice about Izzy’s good news it did not not carry over to Miss Judy. “But Izzy, if your scans were okay, doesn’t that mean Miss Judy’s were too?”

“No,” she said every time I asked, “because her cancer came back. We can’t make it stay away.” Eventually I had to admit what I did not want to believe was happening. Though she could not articulate it in any other way I began to see that she was afraid her cancer would come back too.

In a lot of ways Izzy is just like all the other kids at her school. She wants to color and play, she listens when she chooses and sometimes talk too much. Some day she might even get to ride on the bus like them, though she did tell me she thinks you can kiss boys there so I’m not entirely sure we will ever allow it now. But in a lot of ways she is very different. The reason she is different is not because she hardly has any hair or wears hearing aids or even because she has a central line. She is different because she already knows far more about the reality of life and death than kids twice her age. She walks around with a knowledge I would like her to ‘unlearn’ though I know she cannot.

My best friend said the following about Miss Judy: “Sometimes I wonder if Miss Judy is a holy distraction to keep Izzy’s attention off of her own circumstance and on caring for another.” I found both beauty and truth in her description. While Izzy’s relationship with Miss Judy is a beautiful and holy way The Lord has provided for her to cope, He is also using it to equip her to care for others.

About a month or so ago a nineteen year old girl from our church was diagnosed with Leukemia. She was someone Izzy had never met and yet she was broken hearted when I told her about it. I asked if she would want to go to the hospital and pray with me and she responded with excitement. “Sure! I could tell her about cancer, too, because I have cancer everyday.” I told her I thought the girl would like that. “Mama? Do you think I could get in bed and snuggle with her?” she asked. “Because I like it when people snuggle with me.” I smiled and tried not to let her see my eyes filling with tears, “I think that would be great.”

And she did. We went to see her once we were home from the hospital ourselves and Izzy climbed up into her bed and sat with her while talking shyly about cancer. When it was time to leave we prayed for their family and they prayed for our own. We all gathered around the bed and Izzy boldy said she wanted to go first. She put her hand on the girl’s leg, bowed her head and then began to pray silently as her lips moved a million miles a minute. “I’m done,” she said when she looking up at me after a minute or two.

I would give anything to know the words she said, to hear the declarations of truth or the crying out to a God we believe is mighty to save. But she said it was a prayer just to God and she didn’t want to tell me. Though I’m dying to know I will respect her privacy never asking again.

This is God’s Kingdom at work. A child suffers, fighting to stay alive, she learns to care for others through a doll and then goes into the world with God’s mercy and truth. She boldly asks God to intercede. I am humbled to get an inside look at such beauty and privileged to see God’s redemption in the making.

Tomorrow night we leave for Cincinnati where we will spend two weeks inpatient for Round Four. Izzy is sad to leave her school for so long, but she knows that she and Miss Judy have medicine they need to receive. After that we have just one more inpatient round and then God willing we will never need treatment again. I do not know about Miss Judy. I do not know how long it will take until Izzy feels safe enough to say her cancer is gone. Until then we will continue to pray for the imaginary healing of an imaginary doll. In the meantime I am excited to see Izzy continue to take her knowledge and gifts into the world declaring healing for others and the Truth about who God is.

Sandcastles

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A week ago yesterday, Izzy, my grandmother and I arrived at the hospital to begin Izzy’s third round of antibody treatment. This time instead of walking down a long, stale corridor of white to our assigned home for the week we were welcomed into the warm colors and modernity of the new oncology unit. The rooms, which used to be white from ceiling to floor, are now filled with color and texture making each moment we are here slightly more tolerable.

This week was successful, with pain management being our only hiccup. By the grace of God and perhaps a tiny bit of luck we will be home in our own beds this time tomorrow. As of now we are scheduled to be home for two weeks before our next two week stay. That sentence looks better in my blog than it looks on my calendar. In reality what they mean when they say ‘you get two weeks home’ is that we won’t be inpatient for two weeks. Several of those days, however, will be spent here in Cincinnati outpatient.

Wednesday, August 14th, will be Izzy’s first day of kindergarten. For now, the time each week she is allowed to be in the actual school building is minimal in an effort to limit her exposure to snotty noses. We will start out sending her just 2 hours each day and if that goes well, work our way up to two full days each week. The rest of school we will do on our own. Cincinnati has a program called ‘Monkey in My Chair’ for children with diagnoses that require them to miss a lot of school. We have been given a monkey that will sit in her chair at school when she is not there. The class will be encouraged to take the monkey everywhere they go so Izzy doesn’t get forgotten by her classmates. The teacher (who we know is phenomenal from past experience) is then asked to take pictures of the class with the monkey and send them our way so Izzy doesn’t forget she’s a part either.

On her first day we will introduce the monkey and then Izzy won’t be back in class for nearly three weeks. That very next day we will head to Cincinnati for two days of scans and then Sunday we will leave to begin Round Four. The protocol calls for scans after Round three and then again after Round Six. Even though I continue to believe that she is disease free I still don’t like to think about scans. If you’ve ever had a scan or two come back bad, it’s hard to erase that terror from your mind.

But after August, well after August things get fun. After that we only have one more inpatient stay – Round Five. Because Round Six is just a medication that can be given at home we have no need for a central line after Round Five. Are you putting the pieces together yet? We’re wrapping this thing up and I don’t think any of us can fully grasp that.

It seems like only yesterday we were walking up and down the white hallways of the unit pushing Izzy in a tiny pink ‘school bus’ while her chemo ran. Now we have six rounds of chemo, surgery, stem cell transplant, radiation and half of antibody behind us and the walls aren’t white anymore either. They are suddenly fresh with color. Fresh with hope.

It has been a year since those first days. A lot of grains of sand have fallen on the sand castle of Izzy’s life. What once was threaten to be washed away by the tide now stands taller and firmer than ever before. Life happens so fast.

In just the month since our last admission two families that we know have had a loved one diagnosed with cancer. They are now members of this long, exhausting journey. I see the tide etching towards the foundation of their castles and I pray it subsides.

In just the month since our last admission two other families we know from Cincinnati had celebrations. These two families were both able to take their well deserved Make-A-Wish trip. I can see the flags waving proudly on new towers that have been added to each of those castles. Castles that have come a long way.

And yet, in just the month since our last admission two different families we have had the privilege of meeting on this journey have had a tiny castle completely washed away to sea. Castles washed away far too soon. Castles made of sand on this earth now turned to gold in heaven.

I use the image of the sand castle because Izzy loves the beach. For weeks she sat in her hospital bed playing beach, swimsuit and all. This make believe game spanned over many admissions and her picture circulated amongst the doctors with a joke about chemo that none of the rest of us would get. But the truth is, Izzy has never even been to the real beach. Not one on an ocean. At least not yet, anyway.

This fall Make-A-Wish will be granting Izzy her own wish, which is to swim with dolphins. For the first time in a year and a half Izzy will be able to swim – and she’s going to do it in the ocean. Make-A-Wish will be sending our family to Florida to the real live beach AND to swim with dolphins (though we likely won’t swim with dolphins at the beach because Izzy can’t actually swim. That will be done at an aquarium).

I am amazed at the mercy The Lord has shown us over the past year and, yet, I confess I continue to find myself in need of more. It is a daily challenge to not walk in fear of the future, to not look too far ahead and wonder. And worry. I continue to declare life over my daughter and invite God to reign in her with all His glory. I pray His light would continue to cast out any shred of darkness that attempts to attack her body. That he would block any tide that eases near her foundation, trying to wash away bits of sand and I would ask you to join me.

**IMPORTANT** As I was finishing up this post Izzy was back having an endoscopy which revealed an ulcer and a narrowing of her esophagus which had to be dialated. This explains the difficulty she continues to have getting food to go down. The narrowing was caused by other ulcers that have since healed.

There is speculation that the Acutane (Cis-Retnoic Acid) is what is causing this problem. This creates a whole new problem. Let me explain. Acutane kills Neuroblastoma cells. It is standard protocol to take it for the last six months of treatment. The study we are on just adds the antibody on top of the Accutane. As of now I do not know if we will be able to continue taking the Accutane.

PLEASE PRAY. I am choosing to believe, regardless of what I feel right now, that God still has a plan for Izzy’s life with or without completing the Accutane therapy. Please join me.