Best Fairy Tale Ever

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It’s the day before Thanksgiving and as I sit comfortably at my kitchen table watching the snow come down on the woods behind our house I cannot help but think back to where we were a year ago today. It seems like an eternity has passed since then, like I have lived a thousand days walking through the darkest forest dragging heavy stones behind my feet. But we made it. We made it through the dark forest to a place that I cannot fully I say I call Hope, but a place I most definitely am learning to call Peace. A place I most appropriately am learning to call Thankfulness. Daily I am learning that while I do not know what the future holds in store for us, what I have today is a beautiful thing. I will not allow it to be ruined by fear. I will not allow it to be stolen by pain. I will fight to walk in it presently. Yes, it is a daily fight, but one well worth it.  

At night before bed Izzy often asks for a bedtime story. She is young enough to long for fantasy but is getting old enough to reconcile fact from fiction. “Goldilocks isn’t real, Mama, is it? Tell me a story that is real.” (It’s also possible that because of other influences in her life she will grow up to be more of a realist than anything else but I wouldn’t know anything about that). For some time there has been a story brewing in my heart and finally this past week I told it to her. This is how it goes:

 

Once upon a time, in a land far, far away there lived a princess with long blonde hair and big blue eyes. The first night I told her this story Izzy said, “This story is about me, isn’t it?” rolling her eyes. I laughed and told her just to listen. The princess lived in a beautiful castle with her parents, the King and Queen and her brother, a brave night.  And everything in her life was perfect. Sadly, after I said that last sentence her face got very serious and she decided this story was definitely not about her at all. “Just listen,” I told her. 

One day a great darkness fell on the kingdom. Soon the King and Queen received word that there was a fierce dragon after the princess. A dragon, they were told, that could not be stopped. They had no choice but to take her to a village very far away and lock her in a tower where she would be safe.  Her mother was able to stay with her in the tower but the King and the brave knight had to go back to their kingdom. The princess had to stay in the tower for a very long time. Every day people from the village would come with spells and potions that were known to keep dragons away, but no one knew what would work for sure. The Queen told the princess that if the dragon left and stayed away that they would know that it would not just be because of the potions and the spells but because of the work of their God. At this point (the first time I told the story) Izzy began asking a lot of questions and was very concerned for the princess. It sounded terrible having to stay in a tower and not being able to be home with your family and friends. And what if she didn’t like the spells and potions?

Finally, one wonderful day, a prince rode up to the tower on a white horse with news that the princess was no longer in danger for he had killed the dragon! Izzy sat up in bed and smiled from ear to ear! “Was he a tall prince? Did he have dark hair?,” she asked? “Yes. He was very tall and strong and sure He had dark hair.” He carried the princess and her mother away on His horse back to their kingdom where the sun was shining brightly, for the darkness had been lifted. The princess was back home safe and sound in her castle with all her family and friends. 

“Now Izzy, do you know what the prince’s name was?” I asked her while she was still celebrating the joyous rescue. She shook her head. “His name was Jesus. Do you know the name of the princess?” She looked at me with a blank stare and thought for a while. “Her name,” I told her “her name was Izzy.” 

“What!?” she exclaimed, first probably thinking that had never happened to her. And then suddenly you could see the light bulb click. Her mouth dropped wide open and her face sparkled with sheer joy because she understood. “And the dragon…” she began to stumble over her words because she was so excited. “The dragon was cancer!!” She loved it. She was so excited to hear a real live story that she was a part of. And I have to admit, I was pretty proud of myself too. Except for one thing. I don’t think I said she lived happily ever after. 

I don’t know for sure but I don’t remember saying it. I end every single story like that and for some reason I don’t think I ended the most important one that way. And I want the story to end with her LIVING happily ever after. That’s kind of the most important part to me. I don’t want the prince to come back and take the princess away to a heavenly kingdom where she will be safe from the dragon forever. But as I said in the beginning, I am learning to live daily in a place of peace and a place of thanksgiving. I will not let fear of the future steal the good that has already been accomplished. The truth is, SHE HAS BEEN RESCUED. The truth is, THE DARKNESS HAS BEEN LIFTED.

Next week we have a couple post treatments scans, a bone marrow biopsy and a kidney function test. It will be an intense week as I wait for the results to slowly trickle in. Of course, the two most important ones are at complete opposite ends of the week: Bone Marrow (looking for neuroblastoma cells in the marrow) Monday morning at 7am and MIBG (looking for neuroblastoma cells throughout the body) Friday afternoon at 1:30. But that is then. This is Thanksgiving and I am thankful for how far we have come. I am thankful that we are not in a hospital this year and I am thankful that Izzy finally got to swim with dolphins. And for all this I give God glory. 

Blessings on you this weekend and as always, LIFE for IZZY!

She Is Free

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I posted this picture on Facebook during our Make-A-Wish trip to Miami, Florida. A simple glance at it holds much meaning to anyone that has followed our story for long. Izzy had waited so long to fully immerse herself in even a bathtub but the ocean was the ultimate prize. A person standing on the beach with arms stretched open is a classic symbol of freedom and I knew I was flirting on the line of cliche but I didn’t care.  I can’t imagine that there is a person that has followed our story that doesn’t see freedom when they see this picture. I also can’t imagine they really knew the kind of freedom God was speaking to me about either. As I watched her play on the beach that afternoon God spoke to me in a way I was finally ready to receive. 

I was around thirteen years old when I gave my heart to the Lord.  I surrendered myself completely to a culture of legalism and impossible expectations in hopes of receiving salvation. A culture that would raise me up with words and laws only to abandon me when I fell short. A people that would leave me for dead, literally. Ten years later I would only just begin to fully understand what a relationship with the Lord was really about. One fully apart from church or religion. Gradually I began to walk in wholeness and the Lord pursued my heart in a way I had never known before. It was still another ten years until I knew what it meant to walk in the fullness of my calling, to be free from the expectation of others and just who I was. I began to walk in the kind of freedom that only a relationship with Christ can bring. Freedom from the things of my past. Freedom from my wrongs or the the wrongs that had been done to me. Freedom from anything that was not of the Lord. 

As I looked at Izzy standing on the beach last week with arms spread wide, the waves knocking up against her legs as the wind blew in her hair I realized that same freedom was available to her too. She is free to be a child. Free to go to kindergarten and free to go to the beach. She is free to live a long, healthy life but she is also free to go home whenever the Father calls her. She is not a victim to cancer. She is Izzy, the daughter of a King and when He is ready for her to go home she is free to go back where she belongs. Who am I to hold her here longer than she’s intended?

I cannot hold her in my hands and try to make her life something I want it to be. That prevents her from walking in the fullness of her calling. The truth that I have to accept is that I don’t know what Izzy’s life will look like but she is free to live it. Christ died so that we might be free. Free from sin, free from shame, free from selfishness and free from disease. How that plays out we don’t always understand but the reality is we don’t have to understand it we just have to accept it. 

In three weeks Izzy will go for her first set of post treatment scans. They will continue every three months for at least the next few years.  There were two other little girls I knew of with the same diagnosis going through treatment around the same time. A little girl who finished 6 months ahead of us recently had her week of testing. It revealed Neuroblastoma had returned to the bone marrow. The other little girl who finished three months ahead of us just had her testing this week. A scan indicated Neuroblastoma activity in her liver, though that has not been confirmed. This is what I know: Neuroblastoma sucks. More often than not it does not stay away. It is a nightmare I want desperately to wake up from everyday but I cannot. This is our life. Day in and day out it is our reality. Thankfully we are not alone. We are saturated in the grace of Christ. Grace He gives us everyday to keep going. We continue to have hope for His ultimate healing but we walk in Freedom knowing that NO MATTER WHAT, she belongs to Him. She is Free to serve Him here on earth or dance with Him in heaven. 

Blessings on you today and LIFE for Izzy. 

Prayers of Healing

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It’s Monday morning and I can’t even believe it but I’m packing for Izzy’s Make-A-Wish trip that we leave for tomorrow. Well, I’m supposed to be packing but I paused to piece together these three different blog posts I have never been able to finish into one. And that about sums up the state of my heart right now, or shell of a heart I’m trying to live with. I start to think I feel a certain way, not for the sake of communicating but simply for being it, and by the time I’m done with the thought in my mind I decide it isn’t fully true. I think to myself, “This is nice, I am at peace,” and then I realize that no, no I am terrified. Then I decide mostly I am afraid and then I think, “Are you crazy? This is wonderful!”

I guess the truth is that I am just not one thing right now, I am a lot of things and then I am nothing at the same time. Carter and I had fun together last night before bed and we laughed one of those laughs that you can’t make stop. Afterwards he told me it was the first time he had ever seen me laugh. That, of course, was not true but it broke my heart. We talked about it for a bit and he said that when I laugh I don’t really laugh. I guess he would be really right.

I have certainly recognized this deep disconnect between my heart and mind and have begun counseling, fully acknowleding that I have done what I have to make it through this horrid season. Last week the counselor said something similar to what Carter said. She told me that she hears me talking but I am completely removed from the story I am telling. And that’s just it. I talk about this experience like a story. Someone else’s story because I desperately don’t want to acknowledge that it is mine.

It’s great to celebrate that a little girl made it through this journey, but it’s easier when it’s someone else’s little girl. When she’s mine my heart cannot fully engage. It is torn to shreds from the pain it has felt over the past two years and the fear that the pain will return. It was really fun to see a little girl running around her party with cowboy boots on smiling about swimming with dolphins. Until I realized she was mine. The same one I used to hold a bucket for while she threw up ounces of blood. Then it became easier to forget. Sometimes I can forget, I can pretend that none of this happened, but there are times during the day when I can’t. When there are reminders. Those reminders start every morning first thing and linger through the day.

At 6:30am the pump for Izzy’s fluid goes off. We have transitioned her from IV fluids that ran through her central line to Pedialite that runs through her Gtube. Kendrick stays home a little longer in the morning now while we adjust to this new routine.

At 7am she is up and dressed and it is time for her first of three doses of meds. She gets five in the morning: something for nausea, an appetite stimulant, an acid blocker for her tummy, an antifungal and an antiviral. In the past month we have weaned her off two others. The meds need to be given an hour before her feeds so she doesn’t get sick.

At 8am it is time for a puree meal that goes into her Gtube 3times a day. It consists of a high-calorie formula that has been whipped together with peanut butter, greek yogurt, baby cereal and canola oil. A batch only lasts for forty eight hours so it must be made a few times a week.

The puree must be pushed into her Gtube slowly because her tummy is still so sensitive. We sit on the couch and read one of our favorite books or watch one of our favorite shows while I push 5ML at a time until the entire 8oz is in. Then I change the gauze dressing around the Gtube site applying a topical ointment twice a day. 

As she and Carter put their shoes on for school Kendrick begins to wash all syrines and tear down the fluid bag from it’s pole. I strip down the protective pad that was on top of her sheet that is soaked from overnight and throw it in the laundry with her wet night gown. When a child is getting nearly all of their fluids overnight they can’t possibly contain them all.

It’s not that the amount of work or the weekly drive to Cincinnati are bothersome or even overwhelming compared to where we have been. What they are is constant reminders of the trauma from the past. They are constant reminders of the possibilities for the future. They feel like weights keeping us attached to the past, never allowing us to break free and fully embrace hope.

Sometimes Izzy asks what will happen if the cancer comes back, an answer I will not go into great depth with my 5 year old about. I only tell her we will continue to pray that it never happens. At night before bed I often ask her to pray with me. I ask God to keep her disease free and boldly declare LIFE over her. Her prayer, however, always goes something like this:

Dear God,

Thank you for everything you have done for us. We just love you so much and trust you and know that no matter what you will take care of us because you are God.

Amen

I smile gently completely unsatisfied with a prayer holding that much wisdom and maturity. I don’t want something from Oswald Chambers here, I want the innocence of a child asking her God to keep her from getting sick. I ask her to please ask Jesus for that and she very willingly agrees. But much to my surprise she opens her mouth only to release almost the exact prayer as before. And this happens every night. I say, ‘Izzy, can you pray, too, and ask God to keep your cancer away?’ She always does but she always prays the same way, ‘thank you…we love you…we trust you NO MATTER WHAT.’

The thing is, she always looks at me like we just prayed for the exact ask thing. Like me saying my exact same rigid prayer is the same thing as her saying that we trust Him because we know He will take care of us. And I find myself wrestling with God on that because I don’t want to say that prayer at all. But maybe, just maybe I should try. Because one of us is running around in cowboy boots laughing and the other one is living with the shell of a heart.

*****

I’ve included a picture of Izzy pretending she was at the beach. She used to do it all the time when we were inpatient and I can’t wait for her to see the beach for the very first time in her entire life tomorrow. I praise God she gets to see the real one. You’ll be happy to know that Miss Judy’s bag is packed too and for the first time ever it isn’t filled with stuff for chemo or anesthesia but with a bathing suit and a towel.

Thanks so much for everyone who came out to celebrate with us this past weekend. Izzy had a wonderful time and it was such a blessing to be surrounded by family and friends who have cared for us throughout this long journey. Special thanks to everyone who volunteered – we couldn’t have done it without you. Pictures of our trip will be posted on FB throughout the week. Praying for a chance to relax and heal. Blessings on you today and LIFE for Izzy! (or let’s just trust God or whatever!) 😉