It was early January, 2012 and we sat in her hospital room in the deepest level of isolation she had ever been in. Only one adult was allowed in the room with her around the clock and no one under the age of eighteen. We were allowed one visitor at a time but with our distance from home there were never many more than that anyway. She had been given high doses of chemotherapy beginning on Day -7 to kill nearly ever cell in her body. Unlike regular chemotherapy which left some cells behind, this killed everything. In the weeks to come she would shed her skin, her fingernails and any eye lashes she had left. But for today, today was Day Zero and she was finally getting her stem cell transplant. On the Transplant Floor this day was celebrated as her Cell Day. They hung a birthday sign above her door and the Child Life Team came in isolation gowns to sing ‘Happy Cell Day’ (to the theme of ‘Happy Birthday’ of course, for today was a day of re-birth). A day to start over in hopes for a cure.
Over the next two months I watched as what I knew of suffering was redefined. Most days she lay still in bed, fixated on the TV but not really watching. The morphine pump was running almost constantly so she didn’t feel the full magnitude of her pain. She was too weak to stand, to even sit, to even smile. Smiling required moving her mouth which was filled with bleeding sores that went all the way down her esophagus. This made the constant vomiting horrendously painful and she fought it every time. She didn’t want to throw up because she knew the acid from her stomach would burn the sores as it worked its way up her throat and out her mouth.
Those were the days when her hearing really started to go. We didn’t have hearing aids yet so she couldn’t hear my goodnight whispers in her ear anymore. Couldn’t hear the morphine pump beeping. Couldn’t hear the tv very well, though I’m not sure she was really watching anyway. She just stared into it day after day, the whites of her eyes growing grey as her skin continued to flake off.
A few weeks in she hit rock bottom and nearly went into kidney failure after a complication from the chemotherapy took over. For days we waited to see if they could get her through it. We delayed the radiation she was scheduled for waiting to see what would happen. The radiation would hit right next to the left kidney and we knew that if we began before her kidneys recovered we could send her into complete failure.
Those were the darkest days of my life, that portion of treatment where she was the closest to death I have ever seen her. But I knew that going through it was her only chance for a cure. That’s all it was too – a chance. A chance for a better life, a chance to overcome the disease that was trying to take her life, a chance that – as we know now – didn’t work.
Today is the four year anniversary of that stem cell transplant. Today, January 9th, is her Cell Day or as I like to call it, her re-birthday. And while I am so unfathomably grateful that she is still alive four years later, I am still so unfathomably terrified of what the future holds as well.
She had her last dose of chemotherapy on December 23rd and in two weeks we will go for scans to see what is happening inside that tiny, strong little body of hers. I told her last night that our nurse wouldn’t be coming to the house today like she does every Monday. Told her that we were taking a short break from getting labs all the time. She smiled and raised her hands into the air. “YES,” she said nearly screaming. “I’m so excited Mama. So excited that no one will hurt me anymore.” My heart broke as it often does when she says things like that. When she speaks about the injustice she has lived.
Izzy collected beads during her 18 month inpatient treatment protocol. She earned one for different procedures, different horrors she endured. This one here was given to her for her stem cell transplant. Like the others, I will cherish it always.
Writing has always been my outlet. The way I feel, the way I grieve. But as the months and years have passed I find I have less and less to say. For a season I wanted to reconcile everything she had gone through into some kind of sense in my brain. But I finally accepted that some things just can’t be reconciled. Some things will never make sense, will never be fair. So this week when she talked to me about the four kids she wants to have someday, two boys and two girls, I didn’t try to stop myself from feeling the pain. The pain of knowing all the things that she doesn’t know. All the things that have been spoken over her. Things like: she won’t live long or that she will never be able to have children even if by some miracle she does. I don’t want to try to make myself feel okay about any of that because I’m not.
But I also don’t want to miss a second of her life because I’m too consumed by pain or fear. So if there is ever a moment to celebrate her life I will take full advantage of it. Full advantage of celebrating every milestone – like a 4th re-birthday. So I’ll buy a cake, I’ll wrap a gift and after dinner tonight we will have a 4th re-birthday party. Through the pain and through the fear we will sing and we will celebrate. But not because I’ve reconciled it into anything beautiful – quite the contrary. We will sing and we will celebrate because I can’t turn it into anything beautiful. We will sing and we will celebrate because the whole thing is an unholy mess but she is still alive in the midst of it. And that is reason enough.
Blessings on you today and LIFE for Izzy.