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Day 73

By Claudina Bonetti

April 29, 2016

We left on day 73. The familiar hallway, quiet and sterile was lined with nurses, doctors, social workers, other families. I felt a pang of guilt when I saw some of the other mothers and fathers clinging to their children, hooked up to the pumps that ran IV lines to their chests.

Still, a feeling of triumph filled the place that for the 72 preceding days had been serene, hushed, and respectful of the delicate state of all its patients. Unit 5200 at Duke University Medical Center – sixteen bedrooms total, each with children undergoing stem cell transplants. Everyone at the hospital knew it by number. The mention of those four numbers elicited a look of sympathy reminiscent of one extended at a funeral home.

She had survived this part. I looked around her room, 5205, and the walls were bare. The hundreds of cards that had been plastered across them just the day before were now neatly organized in a bag. The IV pump was turned off and the toys packed in a small suitcase. The sign on the door, drawn by my sister “shhh…Caterina is sleeping” was folded and tucked away.

I turned to look once last time. Part of me wanted to bolt out the double doors back into normalcy. Part of me was paralyzed with fear. My feet felt too heavy to move forward. We had been waiting for this day since July. It was now October. The seasons had changed but we had lost sight of all that. The large square window next to the caregiver’s bed I had slept in for most of these 72 nights was the only trace of connection to the outside world.

I had sat for days staring out at the one large tree visible from the window. I read “Siddharta,” “The Power of Now,” “The Gnostic Gospels,” “When Things Fall Apart,” some CS Lewis, and a dozen other books on adversity, suffering, and grief. I meditated, I called psychics. I had an energy healer come to our room. I drowned my grief in the sounds of merengue and salsa, Celia Cruz chanting “no, no hay que llorar, que la vida es un carnival, y las penas se van cantando!” You don’t have to cry. Life is a carnival. Singing will drown our pains.

We did not know whether she would survive the stem cell transplant she needed to save her life from the disease that would otherwise kill her most likely by age 10, Hurler Syndrome.

We checked into the hospital on July 27th, 2004. Caterina, my daughter, was 14 months old. Two months earlier she had been given a diagnosis that would alter the course of all of our lives. Ten days of chemotherapy would destroy her entire immune system in preparation for the infusion of stem cells from an unknown donor’s umbilical cord blood.

The transplant took place on what was coined “Day Zero,” August 6th. A small bag, the size of a Ziploc, containing the equivalent of half a cup of blood, held the key to her future, and mine. We then waited for 21 days to see whether her body had accepted the donor’s cells, a process known as engraftment. It was a waiting game to see whether she would she start making her own blood cells, whether her immune system would recover.

She would need to start making the enzyme I had never imagined I would need to know about: alpha-L-iduronidase. Chemistry had been my least favorite science class. I loved biology. I could comprehend red and white blood cells. This mysterious missing enzyme, I could not. She would die without it. Her organs would slowly shut down. Her eyesight would begin to fail, her liver would enlarge, her cognitive abilities would decrease over time. Her bones were abnormally shaped. There was some fluid surrounding her heart. The lack of the enzyme made her body slowly screech to a halt. The only hope was a stem cell transplant.

Who was there on that day? Who was with me? I went back to my journals. My mother was there. So was my aunt. This was all too close for my mom, who had lost a 31-month old son to cancer.

Now, I adjusted the small blue mask around Caterina’s face. Her round face had grown fuller from the steroids. Her hair had fallen out, but she was beginning to grow some hair on her face, a side effect of the anti-rejection medication. Her body seemed sturdy. She was quiet, calm, happy. I grabbed the bag with her belongings. We had dressed her in cheerful clothes: striped leggings and a bright top.

“We’re leaving now,” my mom said.

“Ready,” I replied.

I looked at Andre, Caterina’s head nurse, the only male nurse on the unit. We had grown close over the past two months. He gave each of us a huge hug. How would I survive without him and all the other nurses?

Out there, in the rental unit where we would live for the next few months it would just be me filling syringes, administering intravenous medication, drawing blood. Daunting as it was, it was better than being in the hospital.

My aunt stepped behind my mother and me.

“Let’s do it, ” someone said.

We stopped by the door to the room to take a picture. And then we heard the cheering, and the clapping, accompanied by a rain of confetti. The entire unit marched up to us to bid us farewell. It felt like a victory parade. Everyone was crying. I clung to Caterina as the double doors to the main hallway flung open. The world was waiting.

“Please, I prayed as I held my daughter’s hand, “let us never have to come back.”

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