When I started izzystory two and a half years ago I had a clear purpose in mind: to speak to family and friends throughout the journey. But God had a different purpose: to speak to me throughout the journey. I very quickly found that He would meet me in my writings and in my attempt to speak to others He would speak directly to me. I would often begin to write from a place of desperation and deflation but He, in all His goodness, would meet me there, reminding me that I was walking with a God that had not and would not abandon us. I would sit down unable to understand the suffering and stand up able to see around it.
About a year or so ago I began to wonder when this journey through neuroblastoma (I don’t capitalize that word) would end. And therefore, I wondered when izzystory would end. There were some good posts where I thought to myself I should just stop there but then I would realize the journey still wasn’t over. There would be an emergency surgery that came up or scary labs and then it would be time for scans again. There was just always something drawing out the end.
So finally I get it. Things like neuroblastoma have a definite beginning. There is a definite point in time when they crash into your seemingly perfect life path and change it’s course forever. But that’s just it. The course changes forever. There will not be a day in time when the journey ‘ends’. Ever.
We met with her cardiologist this week and her heart is actually looking really great. She had Prolong QT syndrome for a while and pulmonary hypertension but we aren’t seeing evidence of either at this exact moment so I’ll take it. He reminded us that kids that go through treatment this aggressive are watched under a microscope for a long, long time. Because the treatment, that hopefully killed the cancer forever, is toxic. It’s poison. And in their tiny, little, growing bodies…it can cause a lifetime of problems. So this isn’t just a journey anymore. This is our life.
Diagnosis was gut-wrenching. Recurrence was a slap in the face. Treatment was the closest thing to hell I have ever experienced and it nearly killed me. But this past year, even with none of that, has been filled with insurmountable pain. Because all the emotion I didn’t have the capacity to feel during those first three sentences has been haunting the secret places of my soul since treatment ended. And I’ve been running like hell to avoid it.
I see the scars on her body when I dress her in the morning and I shove the memories down inside. I watch her eat her breakfast and remember the hundreds, thousands maybe, of times she threw up. I remember how her lips and esophagus used to bleed and I shove the memories down deeper. We get her hearing aids out and check the batteries and I remember when she couldn’t hear the beeps from the morphine pump. I remember all the times her body was consumed with pain. Pain she couldn’t talk through and she couldn’t even hear if the pump was working because chemotherapy took her hearing away. I remember and I shove the memories down even deeper. By the end of the day I have shoved down more memories than I can count. But you know what? She doesn’t remember any of it. Nothing. And I would feel all of this pain every day for the rest of my life it meant she never has to remember. Of course it doesn’t work like that so hopefully someday we can both walk in freedom.
I can’t tie up our final chapter with a bow. I can’t write one last post that makes everyone feel warm and fuzzy. The final chapter of izzystory isn’t this post. It’s all of 2014. Because no matter how painful this year has been you know what it hasn’t been? A year my daughter had cancer – like 2011, 2012 and 2013. Let’s end the story there. Izzy can’t hear great. She still gets most of her caloric needs through a tube in her belly overnight. She will go for quarterly scans for probably the next four years and be monitored closely for other organ system problems that may recur. But she lives. She lives as fully as any other six year old I’ve seen. And you know what else? She’s mine.
Bless you for your faithfulness to our family over the years. For the time you have taken to pray for our sweet Israelle. Your encouragement and support have meant the world. I have received so many kind words from so, so many of you. No matter what role you have played in supporting us I just say Thank You. It has not gone unnoticed.
I will continue to post occasional updates on the Fighting For Izzy Facebook page. I would ask you to continue to pray for fullness of life for her. That she would have no lasting conditions from this treatment and of course that she would never have any evidence of this horrible disease again.
After the first of the year I’ll be starting a new blog. Blogging has been such a healthy outlet for me and I intend to keep up at it. The new blog will be focused on issues of social justice and the active role I think Christians are called to play. It will probably ruffle some political feathers so it’s cool if you unfriend me on Facebook, just keep praying for Izzy. 😉 But you know, I think Jesus was a feather ruffler. I think He would be outraged by some of our complacency and I’m happy to be the one to stir things up if it means it will make a difference…even for one.
Merry Christmas to you. Blessings on you today and LIFE for IZZY!