This is where we live again. This stay we’re on the back hall, the second to last room on the right. A week ago today we were still at home and I packed up the car and headed here to begin our final phase of treatment. I honked at Carter as he ran alongside the car waving until he reached the neighbor’s mailbox. I would cry the entire two hour drive to the hospital. Izzy, on the other hand, was excited upon our arrival. Dancing up and down the halls she greeted all her favorite nurses and told them stories of her time at home and her trip to Disney World. The next morning she hopped out of bed and put on a dress to join the doctors for rounds in the hall. “It feels so good to be here,” she said.
A few hours later that would change. Once the antibody began to take effect she was overcome by lower lumbar and stomach pain. She began running fevers that hit 107 and required oxygen while she slept. Everyday brought a problem of it’s own. Once the pain was under control the fevers came. When they left they pain returned. “Why was I excited to come here?” she asked. “I like to come here to see my friends but I forgot about this terrible stuff.” I lay my hand on her stomach to pray. She lays her tiny hand over mine and closes her eyes in agreement.
The doctors consider this week a success for us, over all. Even though the side effects were less than desirable, nothing happened to send us to ICU and that’s a major plus when antibody is involved.
Three days after the final infusion we are still here. She is still having a considerable amount of pain when her narcotics wear off so we sit here and wait. We wait for the pain to go away, we wait to find out if the reason it is still there is of concern and ultimately we wait to go home. While so many others are off celebrating the holiday weekend, we sit back and watch the world go by.
I imagine myself looking out the window of our room to a park filled with families having picnics. To kids flying kites and dogs chasing frisbees. To swings flying higher and higher in the sky. It’s silly, I know, because there is not a park out the widow. What I actually see when I look out our window is a brick wall. The other side of the oncology floor to be exact. What I see is this:
This is where we live again and strangely all of it feels a little bit like home to us now. There is a comfort here that I both enjoy and regret. And while I do not want to be comfortable here, I do not entirely want to be miserable here. We live in a place where real live nightmares meet modern medicine. We live in a crazy kind of hell where kids are fighting every day for their lives and, truth be told, some will die trying. We live here, in this hall, in the second to last room on the right.
When I say it is our final phase of treatment it sounds more refreshing than it feels. I fear this phase itself and what lies beyond it. What is after this phase is a road I cannot see and surely don’t want to. If I had known at diagnosis how hard all of this would be, I’m not so sure I would have made it this far. So for now I’ll take a future of uncertainty. Sure, it is filled with fear but it is also filled with hope. Hope that we will never have to open this chapter again. Hope that every scan and every biopsy will forever remain free of disease.
But here we are now. My thoughts are scattered and my heart is hard. I am angry about the years the locusts have stolen from us and so many others I know. About the years they continue to try to steal. I want redemption. I want to believe the promise in Joel 2:25-27:
“I will repay you for the years the locusts have eaten—my great army that I sent among you.
You will have plenty to eat, until you are full, and you will praise the name of the Lord your God, who has worked wonders for you; never again will my people be shamed. Then you will know that I am in Israel, that I am the Lord your God, and that there is no other; never again will my people be shamed.”
I want desperately to believe that with my whole heart so I will read and reread it over and over again declaring it’s truth. If you are looking for a practical way to pray for us I would ask you to do the same. Pray that The Lord would restore to Izzy the years the locusts have eaten. Just as Izzy covered her hand over my own when I prayed for her tummy I would ask you to cover our family with your cries and declarations to The Lord.
“I need peace Mama,” she says when she cannot fall asleep. “Pray for peace.” Whether we’re in the hospital or back at home we live in a place where nightmares have collided with reality and we need peace to get through everyday. Pray for peace too.