Sunday, September 22, 2013

The only time in my life I didn't care that I was fasting.

So it was Erev Yom Kippur, and we were admitted to the 7th floor. Oncology. We met our roommate, a 15 year old girl. We got Adi settled. People came to bring us food to eat before the fast. We tried to set up our things and make the phone calls we needed to make before the chag. We ate.

At the time I should have gone downstairs to light candles, we were speaking with the doctor, so that was that. I don't remember exactly what he said, but it upset me enough that I left the room so that I wouldn't have to cry in front of Adi. I went around the corner to the parents' kitchen and sat down on the floor, crying.

A few minutes later, a woman came in. "Are you all right?" I nodded, or maybe I shook my head. "Don't cry," she said, her accent marking her as Arab. "My son, Kareem, he came here with a giant tumor in his head. They didn't even want to operate, but they did. And he's fine. You have your holiday now, and there is a great God in heaven you need to pray to, so that He will heal your son. But you can't cry here. You need to be strong for your son."

I made my way back to the room as Guy took Adi and his IV pole downstairs to the hospital shul to daven Kol Nidre. I took my siddur and tried to daven, but I could only cry. The tears streamed down my cheeks. A nurse brought me a chair, and I may have thanked her, but probably not. The words on the page were too blurred for me to read, and soon I was wracked with sobs. A woman, Jewish this time, and religious, came over to me. "Why are you crying?" she asked, and I stared at her in disbelief. WHY AM I CRYING? BECAUSE I AM IN THE PEDIATRIC ONCOLOGY WARD, MAYBE?

I think I said, "My son." I think I said, "I can't." And then they were there, Guy and Adi, back from downstairs, and Guy was coming towards me, taking me to them, and all I could say was, "I'm sorry. I'm so sorry. I didn't mean to cry."

This is how I know I married an amazing man: He told me that crying is a type of prayer. This is how I know I will never, ever leave him: He told me to cry as much as I wanted.

He went to the doctor then and asked him to give me something. I heard him tell the doctor, "Tell her she has to drink. She won't listen if I tell her." So when the doctor came with a pill and a cup of water, I took both. And I slept.

Guy did not sleep -- he got up every two hours to help Adi go to the bathroom -- we had to measure his "output" and check the pH.

The next day passed slowly. We held Adi down when the nurses came in to draw blood from his lines. We gave him his meds, measured his pee, and encouraged him to eat. The ward was quiet. A skeleton crew. Adi was desperate to go home. The playroom was closed and locked.

On the other wards, you can order a television with an Internet hookup, video on demand, games, and so on. In the Oncology ward, the computer is free, paid for by one of the many organizations that donates time and money to cancer patients and their families. Guy sat Adi on his lap and helped him navigate the screens. Eventually, we also gave him my iPhone. I kind of figure that if God has a problem with it, well, then we're almost even.

Towards the end of the day, we met Dr. Gilad, one of the leukemia doctors, who was on call that day. Around the time that Guy left to go daven Neilah, and Adi was busy watching videos, I went to speak with Dr. Gilad, who walked me through some of the basics, the beginning of our education in T-cell ALL. Guy joined us, and the three of us sat, talking, right through the end of the fast. One of the nurses brought us cups of water. We listened as he explained The Protocol.

Israel follows the European protocol for treatment. In the United States, "All children with T-cell disease phenotype are considered high risk regardless of age and initial WBC." But our protocol, The Berlin-Frankfurt-Munster Group (BFM)[,] categorizes risk almost solely on treatment response criteria. So, Dr. Gilad explained, our first checkpoint would be on Day 8. We would need to have under 1000 blasts that day in order to continue on the standard protocol.

Our friends and family came to visit, and I left at some point to go home and sleep and see my other children. And in the morning, I got up and took Amit to gan and drove back to the hospital.


Marnie said...

Sending love and prayers for low low blasts at Day 15. I'm glad you made such a good choice marrying Guy, so glad you have each other. Hugs to all.

Judy and Jack Schnee said...

We send our love and prayers for Avi's complete recovery! We also hope for strength for you and your family to handle this very difficult crises. Love, Judy and Jack Schnee

Cheryl Farber said...

You and your family are in our thoughts and prayers.

The Farber Family