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)