Some days it hurts too much to write

February was a hard month. The little boy on the couch returned, barely able to lift his head from the pillow. During the time when his eyes were sunken, when his skin turned yellow and papery, when the black rings threatened to swallow his face, I couldn’t think of anything I could possibly write to communicate our desperation, exhaustion and fear.

The days stretched into weeks, and weepy lesions crept up Toby’s arm. Vomit basins multiplied in corners, under the couch, near the beds. Again. And there was diarrhea that would not stop. At night we stripped the bed over and over, but the black liquid still burned through two layers of skin.

Toby spent endless days in the ER and a week in isolation on a ward of adult lung cancer patients. Just as we were about to be discharged, his blood cultures showed two bacterial infections that required whopping doses of intravenous antibiotics, administered every six and eight hours in the hospital. We finally came home to a refrigerator packed with bags of antibiotics and an IV pole that took up residence in the playroom. While Stephen traveled to South Carolina for his father’s memorial service, I played nurse, injecting Toby with a dizzying amount of medicine, recording the hours and tubes in my notebook, so I wouldn’t forget the next dose. At night I set the alarm for 1:00, 3:00, 3:30 and 4:30, a twisted reminder of life with a new baby.

It took a while to figure out how to leave the house, but by Saturday, the snow beckoned. Here was a chance for Toby to be a real child, and even though he was weak, even though he protested, I hoped that sledding would bring back my boy. At noon in Prospect Park, I crouched on the hill, flushing his line with heparin, wiping the clave with alcohol. And then we rocketed down: Toby, me, and the medicine ball of vancomycin. He cradled it in the pocket of his parka, and shouted with joy.

I do not know how to explain what Toby’s life is like. We spend most of our time trying to distract him from the gut-sinking realization that his surroundings are truly awful: the rasping sick people with tubes coming out of their faces, the man without an eye in the elevator and the children who are playmates one day and die the next. We lost three beautiful, precious children in February, children with tremendous spirit and resolve. The world is a poorer place without Carter, Eden and Harrison.

With so much sadness and despair, it is incredibly difficult to keep going, but somehow we must, for Toby’s sake and for all the other children battling this disease. The hospital has become our second home, even though every day we fight the urge to run far, far away. Instead, we encourage Toby to inject his own saline, we turn the 14th floor into fodder for a scavenger hunt, and play guessing games about how much he will weigh. Toby writes letters to Dr. Kushner, outlining his inventions for a universal medicine that tastes good. He calls his imaginary bug friends and makes appointments to meet them in the hospital cafeteria. He talks the nurses’ ears off about trains and weekend schedules.

During this bleak month, Stephen and I each had one defining moment that brought on the tears. For me it was the day that Toby didn’t say a word for 5 hours and then whispered, “Maybe one day we can visit Elizabeth at Beansprouts?” For Stephen, it was after a grueling day of diarrhea and vomiting, when Toby asked for Mercer Mayer’s book “When I Grow Up.” Stephen’s voice started trembling as he read aloud the child’s wishes of becoming famous chef, dazzling trapeze artist, race-car driver. It’s the most innocent and universal question I can think of: “What do you want to be when you grow up?” But for parents of children with neuroblastoma, it’s not a simple question at all.

We know that Toby may not grow up. We know that school and sleds and ice cream are gifts to be savored right NOW. We are so very grateful for the opportunity to spend time with our wonderful boy, drawing maps, making party hats, taking train rides to anywhere. After the ides of February, these last few days have been excellent indeed. More soon.





Love,
mooki + stephen