Wondering how we got to day 51? Don’t worry, you didn’t miss anything. I am done counting our inpatient days as days since transplant. That number is only relevant until engraftment is a success and you meet the transplant criteria for discharge. That happened weeks ago and that is not what is keeping us here. We are here because of TMA and the effects it is having on her kidneys and the recent development of her lungs now, too. Since the game has changed, now I’m changing my recording of it too. The doctors can call it what they want but we have been here for 51 days not 42. Seven weeks not six. Let’s call it like it is.
Almost every February (minus pregnancies) I begin training for the Indy Mini Marathon. Seven years I’ve trained but not this year. Just another thing, no matter the size, that cancer has stolen. I see runners along side of the road now and I long to be them, if only for a moment. I long to feel the momentum of moving towards a goal that is both fixed and well defined. Instead I am moving thru hell towards an exit I cannot see or touch. But we press on.
As time goes by, I feel more and more isolated from the world I used to be a part of. A born extrovert, I long to be in social settings but our hospital room is gets smaller and lonelier each day. At the hospital I think going home will numb the pain. Once home I think going back to the hospital was better. The truth is the pain follows me everywhere. There’s no where I can go to escape it. Nothing can make it go away for long and the worst part about it leaving is that then I have to remember all over again.
Izzy is so much more like herself these days. She laughs and smiles and sits up in bed playing with things. She has gone to physical, occupational and even music therapy everyday and it’s been great to see her excited to get out of bed. I’m even told that yesterday she walked all the way back from therapy with her walker! Our doctors are very pleased with her response to the TMA treatment and even asked to start talking with Radiation to know exactly how to best protect her kidneys. We don’t have a date set yet but I am encouraged to see the ball rolling. Now they are even talking about the possibility of treating the TMA outpatient within the next week or two. That would be wonderful. Mostly because, while we would still have to stay in Cincinnati, Carter and Izzy would be able to see each other again on the weekends.
I stayed home for an extended weekend this time and I needed it more than I knew. Yesterday was beautiful. Carter and I spent the afternoon outside enjoying one of the first tastes of spring. I took some photos while we were out back and this one spoke to my heart.
Light has been a continued theme in my prayers for Izzy. I have asked repeatedly for light to fill her body and destroy any darkness. What I had not thought of, however, is light's role in bringing life to the dead of winter. As I looked at this photo of the sunlight penetrating through the barren forest I was reminded of Izzy's tiny body. It is now free of disease but in order to stay that way it needs desperately for God to fill it with life. Life so strong and powerful that it cannot be overcome by this disease. What I also saw when I looked at this photo is that the light can only shine through this beautifully when the trees are completely bare. When spring is in full bloom and the trees are filled with life their lush canopy actually blocks the light from showing through so completely. Interesting, isn't it? To be honest with you it would be way more interesting to me if I was learning it by watching someone else's life but it is what it is.
Yesterday when I looked deeply into this photograph I found hope. And hope is hard to come by on this journey and it does not always last long either. Who knows what I will find waiting for me when I wake up tomorrow. But today I have hope and I will hold onto it for dear life, sure to get every last second's worth.