For you, as everything is now.
In August of 2018, I visited a dermatologist in order to remove a large wart on my right middle finger. She froze it, put some sort of acid on it, and told me some story about how warts can be brought on by stress in the body. She asked me, “What’s your stress?” I answered that I had been a dancer in high school and that was a pretty constant source of stress in my life. I had just quit ballet and was moving into college in a couple of weeks. She told me that my wart would disappear as soon as my stress did.
So for a couple of months, I ignored the wart. I started school and had the most freedom I’d had in my entire life. I felt that I could do anything, say anything, be anyone I wanted to be. Then—around Halloween—I looked down at my hand again and the wart was still there. I began to notice a familiar sensation growing in my body. Dread, fear, anxiety, manifesting in sleeplessness, headaches, stomachaches, panic attacks.
Aiden had been sick for about a month. Different doctors and nurses told him different things. First it was a cold, then the flu, then bronchitis, then a viral infection, then Bell’s palsy, then Lyme disease. Finally it was acute myeloid leukemia and I was sitting on a firm mattress in a hospital room being told about my brother’s chances of survival.
When my parents arrived the next morning around 3:00 AM, I could barely look them in the eye. I had been complicit in the ignorance surrounding Aiden’s condition for months. To me, it was my fault. In another way it was his. He lived so intensely and with such little selfishness that he refused help multiple times before he got the urgent message that he was immunocompromised and needed to get to a hospital as soon as possible. He did not want to be my burden, so he forgave me my ignorance and stuck around a little while longer to teach me as much as he could before he left.
There were a few weeks after Aiden was discharged from his initial admittance to the hospital where we got to pretend to be a normal family again. We drove home in the ice and snow across upstate New York, Aiden in the front seat, reclined and relaxing, eagerly anticipating the arrival at our home in Deerfield and the excited greetings he’d get from our dog, whom he hadn’t seen for over three months. When we walked in the door, the scent of evergreen trees and old, stale Christmas decorations filled our noses. It was as if we were walking straight into our childhood. Family and friends had come to our home to get it ready for our arrival, filling it with food, gifts, my grandfather’s old fake tree, and decorations we’d never thought to put up in the past. What a wonderful feeling, to return somewhere after imagining you might never see that place again.
We celebrated Christmas early that year. Our family drove up from New Jersey and New York to fill our small home with loved ones and warmth. We moved the couch out of the living room and extended our four-person dining room table so that everyone would have a seat. We were full again. Full of sweets and eggnog and cider and gifts and hugs from loved ones. I don’t think I’ll ever take a holiday for granted again.
On Christmas Day, we drove to Boston for Aiden to begin his second round of chemo. I don’t remember much about the apartment we stayed in, except for watching all of Mr. Robot and imagining I was an older version of myself living in the city alone in an apartment, completely anonymous, without ties to cancer or death or grief.
In January I stayed home. Aiden was readmitted to the hospital with a fever. I have a picture of him sweating while his body is covered with ice packs. He was brought to Boston in an ambulance and stayed there for a couple weeks. Again, I don’t remember much else from that time other than a day when there was a rainbow refracting through the glass of my shower door and projecting colors onto my skin.
I got a telephone call that told me I was eligible to save my brother’s life. Naturally, I obliged and began to believe in the holiness of blood and science and their ability to save a life. I was asked so many medical questions, some so personal that not even I knew the answer to them. “Do you have any tattoos?” “Have you or any of your past sexual partners ever taken a drug intravenously that was not prescribed by a doctor?” “Have you or anyone you know (in the last six months) travelled to any of the countries listed on page 13, section A?”
I drove to Boston alone on a Monday and waited all day while doctors asked more questions and nurses poked at my veins.
I guess at some point I must have driven back to Oberlin, though I don’t remember that first week back all too much. I must’ve gone to classes and sent emails to professors telling them I’d be missing the second week of the semester to fly to Boston and have my stem cells harvested in order to cure my brother’s incurable disease. What do you say in response to that? They said this:
“That is an amazing thing you’re doing for your brother!”
“It’s wonderful that you are helping out your brother, and he is so very fortunate to have you.”
“Thank you for the email.”
I flew to Boston on February 7th, one week before the transplant was scheduled, to receive a week-long injection cycle of Neupogen (filgrastim)1 in order to boost my white blood cell count. For a cancer patient, Neupogen will make you feel better almost instantly, but for a healthy individual with no problems creating new white blood cells, Neupogen makes you feel like you’ve got the worst flu of your life. I felt a pain deep inside the matter of my bones. It was unlike anything I’d experienced before, most akin to the pain I felt in high school after a particularly difficult week of ballet rehearsals.
On Valentine’s Day, after a week of these flu-symptom-inducing shots, I lay in a bed in the Kraft Family Blood Donor Center at Dana-Farber Cancer Institute and Brigham and Women’s Hospital. I panicked because I thought I was sick and giving my stem cells to Aiden would get him sick, so the nurses gave me Ativan and I fell asleep to my dad reading me The Cider House Rules.
Aiden received my cells later that night, getting instantly red and hot upon injection (which was a normal reaction, according to the nurses). We played LEGO Star Wars on his Xbox, I read him my psychology textbook out loud, and I got used to the scent of my own hot breath recycling into my nose because of the medical mask I had to wear at all times around my own brother. I left him there two days later and he stayed in the hospital another three weeks while they waited for signs of graft-versus-host disease2 to appear.
I was not allowed to drink alcohol for the month of February due to the donation. I was told I’d be more susceptible to illness and that I should refrain from strenuous physical activity for at least a week. I was also told I was brave for “saving my brother’s life” by more people than I can remember. The Kraft Family Blood Donor Center gave me a fleece blanket as a thank you.
More than a year went by. Aiden relapsed for the first time in July of 2019, received a second transplant from an anonymous German donor, relapsed for a second time in January 2020, was admitted to the hospital for experimental treatment, at which point he stayed in the hospital for about three months without visitors due to the pandemic. In late April I was told that most of the cells that had survived after his many rounds of chemo were mine. They asked if I’d be willing to donate cells again.
There didn’t seem to be a question of if I was “willing” to do anything. I was praying to have something to do. I was desperately searching for some way to save my brother’s life. Being told again and again that my cells were special, magical, healing, I tried again. The day before my 20th birthday, I drove to a hospital in the middle of a pandemic where I was hooked up to a machine that filtered stem cells out of my blood and pumped blood back in. Because of the pandemic, the Neupogen shots were administered at home by my mother the week prior.
My birthday this last year, May 12th, 2020, was a day of epic reunions. My father was allowed to visit Aiden in the hospital for the first time since March and someone very special to me whom I hadn’t seen since February came to stay at my house. I watched Aiden over the phone as he took a bite of Frosted Flakes and tasted so much more than any of us taste when we eat Fosted Flakes. I watched my dad give him a hug, imagining that it was all of us hugging him, all of us together again like it was supposed to be.
Aiden came home at the end of May. His remission lasted about two weeks, then he relapsed again. They got rid of the cancer cells again and he was again in remission at the end of June. He spent July preparing for his online classes in the fall, reading books, playing Minecraft, and enjoying every minute that he was not stuck in a hospital room. He relapsed for a final time at the end of July and passed away at home on August 29th, 2020.
The end of this story is not one I am able to tell at this time. I am writing this on the first day of snow that Aiden will not see. There will be no conclusion to this story. There will be lists of first times, last times, songs he liked, movies he could recite by heart, things I said to him on his final night, times I cried. Today I went into Aiden’s room and I realised, it still smells like him. There will be no conclusion to this story. Every time I look in the mirror I will see Aiden’s eyes looking back and I will forever dream of saving him.
All we have to decide is what to do with the time that is given to us.
1Neupogen is used to treat neutropenia, a lack of certain white blood cells caused by cancer, bone marrow transplant, receiving chemotherapy, or other conditions.
2The way I understand it, GVHD in this context is considered a good thing. It is a sign that the graft cells (my cells) are fighting the cancer cells, in addition to the host’s healthy cells. It is treatable and is associated with significantly fewer major symptoms than having cancer in the first place.