January 22nd had been circled in red on our calendar. It was a Friday, and like all Fridays before it during the past year, that meant an interferon shot for Cholita. Wednesdays meant blood work, Thursdays meant lab results, Fridays meant interferon; it was the rhythm of our weeks during 2009. But this Friday was different; it was her last shot and we planned to celebrate. Based on her past labs and based on conversations with her doctor, we were not celebrating treatment success, but instead celebrating Cholita’s amazing resilience, her patience, and her strength. When the nurse had told us months before that it was obvious Cholita had failed treatment, I fumed. My daughter had not failed treatment. The treatment failed her. It felt like an important distinction.
And so we’d celebrate Cholita’s triumph; labs be darned. And since this was her day, she was allowed a rare pleasure–she could wear any outfit of her choosing in public.
We ate pizza, we played games, and our little girl who’d had well over one hundred needle pokes in 2009 smacked around a syringe-shaped pinata. It seemed therapeutic.
Cholita blew out 12 candles on her cake, one candle for each month of interferon.
And we went home happy, refusing to acknowledge the nagging sense of disappointment. “I have no regrets,” I told my husband later that night. “We did all the research we could have done. We knew the odds going into it. We’ll find something that works.”
I thought back to a year earlier, a few hours after Cholita’s first shot. One minute she was fine and the next she had a high fever and screamed over and over, “My body hurts!” I thought of the first time I had to give her the injection. My husband, the shot-giver, was gone with our son’s Boy Scout troop canoeing near the Canadian border and I had no choice. I sat with her on my lap, my hand shaking as I held the syringe. “Just do it!” Cholita said, rubbing her leg with the antiseptic wipe. Soon the wipe dried up. “Ugghh,” she said. “Now I have to get a new one.”
Two wipes later, and still I couldn’t do it. We heard music from the next room; her sisters were watching a show and Cholita wanted to join them. She sighed and rolled her eyes. I breathed deeply. Finally, I looked away and dropped my hand down. The needle didn’t go in, just bounced off her leg, and a trickle of blood ran down her thigh. I wiped it off, angry at my own squeamishness and leaned in close to see the hole I’d already made. Determined to not inflict two wounds on my daughter in one sitting, I did what seemed logical at the time but what even my four-year-old could see was a bad idea. I set the needle down on the hole, closed my eyes, and pushed. By this point, months into her treatment, she had some scar tissue and it took more force than I’d guessed. I kept pushing until finally it went in, accomplishing what had to be history’s ugliest injection. Before Cholita ran off to watch her show, she patted me on the back and said, “I’m proud of you.” I dropped the syringe in our sharps container and prayed that this would work, that it wasn’t all in vain.
Two days before Cholita’s party we had her final blood draw. The nurses at our local hospital hugged her; we’d brought them flowers, one of them brought Cholita a serrated grapefruit spoon. An odd gift for a four year-old, yes, but in the course of their conversations throughout the year they’d discovered they shared a mutual love for a tart zing in the morning and Cholita was thrilled with the gift. It would take a week for her viral load result to come in. At last count it had been 27 million. I didn’t need the doctor to tell me that wasn’t encouraging.
I went to pick up the final results during Cholita’s preschool time. I’d accepted the fact that the treatment hadn’t worked, but I wasn’t sure I could completely contain my emotion when faced with the irrefutable evidence. Cholita, just happy with her grapefruit spoon and shot-free Fridays, didn’t need to worry about why her mother was crying.
The nurse called the lab for the results and soon the fax machine hummed and my palms went sweaty. The nurse handed me the papers with a sympathetic smile. I walked down the hall to an empty spot. I scanned the labs until I found what I was looking for: HBV VIRAL LOAD–the place that was always followed by a number containing lots of zeros. This time there were no zeros. This time there was no number.
HBV VIRAL LOAD: UNDETECTABLE.
I screamed and immediately started to cry. The nurse jogged over from the nurse’s station and fanned some papers in my face. I think she was afraid I would faint. “Is it bad?” she asked. I shook my head. “It worked.” My voice was barely a whisper. I said it again, more loudly than I anticipated, “IT WORKED!”
I went to my car and with my forehead on the steering wheel, said a prayer of thanks. Never have words felt so inadequate. It worked. I looked at the labs again. I checked the name on top. I read it again and again. And then I saw something else. HBeAG, the “e” antigen which shows that the virus is replicating, the antigen that has always been positive on Cholita’s labs. Now it said HBeAG: NEGATIVE. I cried some more.
When I told Cholita the amazing news later that day, she said, “Awesome…..can I watch a video?” She is, after all, only four.
And being only four, as she grows older she may not even remember her year of shots. But I will remind her, especially when she’s faced with trials, that when she was tiny, she went through something hard and she did it with grace. I will remind her that she’s strong and that she’s a fighter. And I will remind her that even when the odds seem insurmountable, God can accomplish miracles.