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)
11 Replies to “The Shadows of Suffering”
praying for her kidneys.
Lord hold Molly tight tonight! Continue to be her comfort Lord! Be with both Izzy and Molly this week as they tart the next phase if treatment. God protect Izzy’s kidneys and continue to let her feel you, let Sweet Izzy always sing your praise. Wrap your loving arms around the Mattocks family as they continue to travel this difficult road! Let them hold strong to You Lord! In Jesus name, Amen!
So in awe of the spirit of a child! We, who complain at the slightest inconvenience, and then there’s Izzy…..singing praises upon awakening! I am humbled. Praying for complete healing.
i was thinking about you yesterday Molly. I thought, “That’s Weird” ! My next thought was how weird it was that I was able to accept your teaching me prior to Baptism..just last year..because you are so young and I am so old. And then I laughed at myself…again…I pray for Izzy’s KIdneys and that you and she receive unlimited nights of giggling and planning for dreams to be true. They are true. Izzy knows this. I tend to forget. Jesus loves us. Thank You Molly. Beautifully written. And I pray God protects your heart.
I pray for Izzy’s kidneys and I pray that Izzy continues to sing her songs, to be happy and dancing all around and I pray for her strength for the treatments she begins today. I also pray for you Molly and your family for the Lord to give you the strength you need each and every moment of every day!!! I thank you for sharing your journey with us and know it is not an easy journey to share.
Write what’s in your heart sweetie. You need to. We are all here to help you hold that pain.
I am praying that Izzy’s kidneys are protected! I truly pray for her to have sunlight shine down on you and her while she goes through radiation and I truly hope you guys have more sunshine days to come then rainy ones! You are true to yourself and your family and that is all that matters!
Praying hard for Izzy, for you and the entire family, and for all the little children suffering from these horrible diseases and their families. Children shouldn’t have to suffer like this. God bless you all.
I know what it is like to be lost in the dark shadows of suffering and my heart aches for you and your little Izzy. Sometimes it seems so unfair to love a child so much because with it comes almost unbearable pain when your child is suffering. While you are going through this time when you feel lost, others are striving to carry you and your family to that time when you look back on all this as a distant memory. When it seems like it is too hard to carry on, think of how far you have come. The journey is part of the healing.
Thank you for your truth. I’m checking my schedule to see when I can come visit. I need to hug you sweet friend!!!
I love to hear what to have to say about your journey. I continue to pray for her and your family each and every day.