The Power of Hashtags

Life changed drastically during the pandemic for Kelsie Bowen and her family when their youngest son, Lincoln, was diagnosed with PROS (PIK3CA-related overgrowth spectrum), a group of rare conditions that cause overgrowth of various parts of the body due to changes in the PIK3CA gene. PROS is progressive and symptoms can be present at birth or develop in early childhood. The degree of severity can range from mild to severe and can cause pain, difficulty with mobility, complications of the blood, loss of function in body systems and an array of neurological complications.

From mini road trips, career changes, sibling support and more, Kelsie shares the Bowen family journey from diagnosis to present, and the community she discovered along the way. 

I’m the mother of a kid who has PROS, his name is Lincoln. We live on the Eastern Shore outside of Ocean City, Maryland. Lincoln turned 2 on Thanksgiving Day and he’s our second child. I had no idea anything was not normal — I hate the word “normal” — when I delivered him. He had a birthmark on about 80 percent of his body that we didn’t know about. From his torso and hip down his right leg, he has a pretty large “port wine stain” that doesn’t cross his midline. 

We weren’t too concerned at first. Around his two-week wellness check, we recognized his right leg was thicker than his left and that his second toe was also larger on his right foot. Our pediatrician referred us to dermatology at a large hospital. Both doctors were concerned about Lincoln’s birthmark; I was more worried about his leg. It became a guessing game where we didn’t know what the problem was. When I made the appointment, unfortunately, it was the height of COVID-19. He was born in November 2019 and the earliest appointment was at the end of May 2020. 

I called Children’s National in D.C. and found Dr. Kim Keppler-Noreuil. She has written several publications on PROS — she’s a geneticist and this is kind of her life’s work. I was super thankful to find her. She worked extremely closely with the Vascular Anomalies Clinic and Dermatology so it only took one appointment to essentially be diagnosed. We would later confirm with genetic testing. 

Obviously, with a diagnosis like that, there was still a lot to do in terms of treatment. We did have to get some genetic testing done. It's actually a skin punch biopsy, not blood work. We had a circle-shaped incision in Lincoln’s affected leg and sent his actual tissue away for testing. With PROS, he is more susceptible to kidney and liver tumors, so quarterly he gets abdominal scans and blood work testing his AFP [alpha-fetoprotein] levels to quickly identify any signs of a tumor. During his first year, I was kind of living our life in three- or four-month increments as we got clean results. As he’s gotten older, his levels have dropped. 

Right now with Lincoln’s treatment, we’re taking as conservative of an approach as possible. We see orthopedics twice a year. We’re in a maintenance phase, watching things grow. 

His right foot is two shoe sizes larger than his left foot. Shoes have been a struggle! It’s so difficult at the rate he grows to find shoes that fit in multiple sizes. I’ve been connecting with other parents about shoes and programs like Zappos where you can order single shoes, but sometimes it’s only one pair of shoes you can choose from, so he has to wear Blue Converses all the time. It’s just the shoe that he gets. 

We just recently had a lift added to the shoe on his unaffected side because of a slight leg length discrepancy, so we had to find a place that could do that. Regionally, we don’t have much here on the Eastern Shore. Anytime we have an appointment for him, we’re going across the Chesapeake Bay Bridge. It's about a three-hour drive to get to a doctor appointment. Lincoln’s getting better with car rides now, but initially it was not super fun trying to get him in the heart of D.C. in the middle of the pandemic, not a lot of places to break or stop for feeding along the way. The drives made it pretty difficult with work as well, but thankfully my new employer is very understanding.

I changed my profession after Lincoln’s diagnosis. My husband Will and I were both in health care — he’s a firefighter paramedic, and I was an X-ray tech. With him on 24-hour shifts, and me on 12-hour shifts, it was just a lot. We also had a toddler when Lincoln was a newborn. So I took a step back without a plan in the thick of his diagnosis. Going to those initial appointments alone really sucked, to be honest, but we couldn’t have more than one parent in the room due to COVID-19 and someone had to stay home and take care of our daughter Everleigh. 

I have since found a remote position in the mortgage world and so happy I did given the state of the world, but it’s definitely been a change for us. We had a lot of fears in the beginning about how our daughter felt at the time. She’s 4 now. Not only a new child, but a new world now, revolving around him and the best course of action for him. We had to make more efforts to do things with her independently, but honestly I could not ask for a better big sister. She adores him. She’ll ask, “Why don't I have a birthmark? Why don't I have something special?” She’ll help with getting his shoes and ask, “Do you need his big foot first?” She doesn’t think of it as anything different. 

When I first found out about Lincoln’s diagnosis, I did what any mom would do — stay up all night and search the internet. I joined every Facebook group I could find, I searched the hashtag on Instagram, just trying to find others like him. I wasn’t in the best headspace at the time — first, I had postpartum anxiety  and then you throw this diagnosis at me — so connecting with other moms or dads or even adult patients through social media and having conversations about their journeys was super helpful.

I’ve connected with so many people, including AllStripes, through social media. Getting more information helps me advocate for Lincoln as best I can. 

When Lincoln was diagnosed, I just started openly talking about it. I changed my Instagram account to public and made a Highlight bubble and started sharing some hashtags. It’s crazy the amount of direct messages and people that have reached out just to say, “Hey, my kid has this, we don’t share photos because we don’t feel comfortable doing that but I’m so happy that you do, it’s so cool to see someone who has a kid doing all these things.” 

It’s really wild sometimes — there’s a lot of things wrong with social media today, but it’s really helped me cope with what we’re going through and allowed me to help other people feel okay with what’s going on in their lives. Especially new moms who are very unsure of what lies ahead. Once or twice a week I get a message — people from Australia, United Kingdom, Canada who all have kids with PROS — and the only way we found each other was through a hashtag.