LLS Honored Heroes | Lucy Almeida
Before you know anything else about my family, it’s important that you know this: we were delightfully ordinary once, too.
Our youngest child, Lucy Caroline, came into the world in the spring of 2017 on a cloud of glitter and sunshine. Since the moment she arrived, she has been the brightest light and a true source of joy. She was a charming baby, beloved by her two older brothers and thoroughly spoiled by her parents.
Our life continued along a wonderfully average path until one day last fall, when we got a call from Lucy’s daycare provider. Lucy woke up from her nap and suddenly wouldn’t stand up. Our provider tried to prompt her a bit to try, but she just kept crying and going back to the floor. Our oldest son had experienced similar symptoms at the same age due to an infection, so I rushed her off to Urgent Care, 100% sure we would get the same diagnosis. Instead, we started a five-week cycle of pain, fevers, ER visits and labs until finally one morning I had had enough. Lucy had been up coughing the whole night and when I looked at her in the morning, I just knew she needed to go in. Our pediatrician initially diagnosed her with bronchitis, but further review of the lab work had us sent to the ER at Blank Children’s Hospital where we heard the hardest sentence we’d ever had to process – we’re sorry, but it’s leukemia.
I didn’t know a lot about childhood cancer before that day, but I knew what leukemia was. There really aren’t words for what that moment feels like – I’ve heard other parents describe the floor falling out from beneath them, or like they were suddenly underwater and couldn’t hear or talk. For me, that devastating moment felt like all the air had come out of the room, and I was being crushed smaller and smaller by the weight of the fear. I remember the doctor explaining the next steps, and then pausing so I could cry. I remember reaching for my daughter, to take her from her father’s arms and into mine, and the panicked look on his face. I remember the acute, world-ending pain of being asked to suddenly confront the mortality of a child who had just started her life.
Lucy started chemo the next day. She had surgery to place a device commonly called a port in her chest through which she would receive her medications for the next 2.5 years. She lost her hair; she developed a dangerous staph infection; she suffered through rounds of painful steroid & vincristine pulses. She lost her ability to walk, then battled to earn it back. She danced and smiled her way through clinic appointments; she partied with nurses through multiple hospital admittances, even when it felt like there was no end in sight.
Now our path has turned uphill once again, and we are in the position of asking total strangers for help. It’s very humbling to have to rely on the community in this way, and very difficult for us to ask at all, but thankfully what we need from you is very simple: STAY HOME.
Stay home because if Lucy contracts COVID-19 she would fall into the high-risk category. She has no immune system and disease like this would tear her apart. Stay home because we can only do so much to protect her on our own, but when we do have to leave the house for chemo, we are terrified of the world around us. Stay home because Lucy is far from the only child in our community with this level of risk.
I’ve been where you are before. The world is turning itself inside out, showing you all the dark and broken pieces, and it’s scary. I know what it feels like to suddenly confront an unrelenting monster and not even know where to start. It’s comforting to go out into the world, to see friends, to live the way you always have but please, STAY HOME. I wish there was something I could do for you in exchange. I’m great at baking, I can teach your kids Spanish, I’m a fantastic listener when you have trouble – I would do anything to support you, but right now, we need you to support us. Enjoy your couch, clean out that closet, call a friend you’ve been meaning to connect with but please, STAY HOME.
“Stay Home”
Lucy still has more than a year left in her treatment, and every day she teaches us something new about how to beat cancer – how to smile in the face of pain, how to carry on when the way forward isn’t clear.
On average, 43 kids are diagnosed with cancer each day, which means that day our world came crashing down – 42 other families lived that same nightmare. Childhood cancer sounds rare, but it really isn’t; 1 in 285 kids will be diagnosed before turning 18. These kids deserve better outcomes, more research dollars, medicines designed for them instead of tailored down from adult doses. Children like Lucy deserve to run full speed into a future filled with healing, not worried about the long-term effects the medications that saved their young lives will have on their adult bodies.
I know that our daughter’s future is bright; I know that she can do anything – and I already know that she will beat cancer because it will never dim her spirit.
