Boston Children’s Hospital holds a special place in my heart, for giving my son his life back.
December 2019, my sweet 5-month-old came down with a cold. In a matter of a day, his neck swelled considerably and I was seeing signs that we weren’t dealing with normal seasonal sickness. After a visit to his PCP, we were told to go to the ER immediately, that his oxygen levels were at a dangerous level. It was there that he was diagnosed with a Lymphatic Malformation and we learned just how special and one of a kind Connor was, 1:4,000 to be exact.
A lymphatic malformation is a clump of abnormal lymph vessels that form a growing, disorganized, spongy cluster of masses. When Connor was born, we didn’t notice any significant outward growth, he passed as a “normal and healthy” baby. It was when he got sick and his lymph system was put to work for the first time that sparked his body to not only retain fluid in the masses but also grow additional benign clusters.
Connor had two procedures at our local hospital in an effort to drain the excess fluid and scar the lymph nodes to stop them from causing issues in the future. However, doctors were not aware of how deep and widespread Connor’s malformation was. By only treating the most superficial layer of the masses, it prompted his body to retain the fluid deeper down, closer to his airway. I learned that treating these malformations is as much of an art as it is a science. Anything can prompt regrowth and so all surgeries need to be calculated, strategic, the lymphatic response needs to be anticipated.
I’ll never forget the day, standing at our local hospital and having the surgeon look me in the eyes and say, “I’m not comfortable treating your son anymore.” I was defeated, mad, and exhausted.
It was around that time that the team at Boston Children’s hospital came into our lives. From my first phone call asking how to apply for Connor to be in their Vascular Anomalies program, I knew this was going to be a different experience. They truly cared. Connor became a patient in record speed, but the apprehension of what was on the horizon was palpable. My sweet boy, who hadn’t stopped smiling through all of this, would then endure two years of regular tests, scans, and procedures.
I will never forget the horror of being in their PICU, watching Connor sedated and strapped to the bed. He needed to be intubated after a procedure to ensure proper oxygen levels – I was not prepared for what that would look like. The nurses and staff quickly realized this as I walked into his room and laid eyes on him for the first time. It felt like someone had actually punched me in the gut. I stayed awake for 72 hours straight. Even when I was hunched over the bed, almost able to drift off, I’d be startled awake with gasps of air and writhing little body. The nurses were phenomenal, checking in on the both of us, bringing me case studies on medications for LMs to read through, sitting down to talk me, acknowledging this was awful and encouraging me to recognize that – I wasn’t going to win extra points for putting on a façade.
By March 2020, we heard the most glorious statement, “Connor’s scans look amazing, I think we can schedule his next appointment for a year out, if you’re ok with that.”
We made it. Connor’s team of doctors brought us to the finish line.
Naturally, we needed to find a new normal. I needed to find a way to expend some emotional baggage I picked up on this journey. I started running. I ran three marathons in a year, I guess you can say I had a lot of baggage.
When I was scanning through the charities associated with the Boston Marathon, the BCH logo practically jumped out at me. Naturally, I started to cry. All I could think about was how THIS could finally be the way I give back to the hospital that saved Connor’s life (who continues to watch, monitor and keep him healthy), THIS was the opportunity to come full circle, four years later.
Connor’s health and running always held an inextricable connection to me. Participating in the Boston Marathon and raising money to support the very hospital that got us here, to our own metaphorical finish line, I couldn’t have imagined a more beautiful milestone in our journey.