I remember hearing the pediatrician say, “pack your things” as we left for the emergency room but it didn’t fully register. My attention had already shifted and was running out the door ahead of me. The tiny red dots on my son Rocket’s face and neck, his fevers, swollen lymph nodes and unexplained bruising went from oddities to potentially life threatening when she told us a blood test revealed signs of leukemia.
She told us to drive to Lucile Packard Children’s Hospital Stanford and that they were already expecting our arrival. I felt comfortable going there because I knew it was an exceptional hospital and cared for really sick children.
What my husband Gerald and I didn’t know – that I now realize our pediatrician did – is that once we entered the ER, we wouldn’t be leaving. Packard blood tests confirmed our doctor’s findings: Rocket had ALL B-Cell leukemia. My initial reaction, surprisingly, wasn’t emotional – it was autopilot. What do we do? When do we start? The answer to the latter was immediately. B-Cell has a 90 percent curability rate, but that didn’t stop his doctors from jumping into treatment. We started the day thinking our four-year-old had the flu and ended it with his first round of chemotherapy. It was surreal.
The tears came the next day. I felt okay texting the news to friends and family, but there was something about sitting down with our hospital social worker that made it all sink in and opened the floodgates. How did this happen? What will happen? How will we manage Rocket’s intense care and look after our new baby, Jet? If we’re going to be here indefinitely, where will we stay?
The social worker referred us to Ronald McDonald House at Stanford. I’d heard of Ronald McDonald Houses before, but I couldn’t describe how they helped families at the time.
It was mid-June 2017 and the House had just reopened its original building after a year of renovations. The expansion built next door was at capacity every night and had we shown up only weeks earlier we might have been on a wait list. Instead, we got a room straight away and feel incredibly fortunate that, none the wiser, we didn’t have to think about how to make staying locally work – physically, financially or emotionally.
One morning Rocket told us he felt something stuck to the roof of his mouth. His doctors jumped again. It was a fungal infection, spreading under his skin and threatening major nerve centers. He needed emergency surgery to remove his pallet, septum and the tissue behind his nose and cheeks. One surgeon operated on him twice in 36 hours. I’m not sure she even slept. Rocket was in the PICU for a month, having weekly surgery to clear his infection sites. Our 90 percent curability shrank to 10 survivability. It was a roller coaster, happening in slow motion and in a blur.
With an unbelievable team of helping hands supporting us, Rocket’s getting stronger every day. His cancer is now considered untraceable and we’re managing his infection. We have a long way to go before we reach a new normal. He will need reconstructive surgery to help him swallow again and he’s still experiencing pain in his legs and feet from treatments that make it difficult to walk, but he’s been an absolute trooper throughout.
The House lifts weight off our shoulders. Every day of our son’s journey is different and being here lets us focus on him. We spend most of our time at the hospital, but having a soft bed in a quiet room to crash onto at night is priceless. A warm meal, a place to do laundry and space to plan the day is so important when the world around you feels so up and down. The House lets me switch off everything except the one thing I can’t – parenting.
We started a blog to document this experience and share updates with our friends and family. We tell them about the House, and they tell everyone they know too. That’s the point. We want to share our story because everyone should know how important this place is to families.
– Eileen Cueto