# The Power of Hashtags

By  
Kelsie Bowen, José Vadi

Jan 20, 2022 • 5 min read

Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Life changed drastically during the pandemic for Kelsie Bowen and her family when their youngest son, Lincoln, was diagnosed with [PROS](https://www.allstripes.com/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](https://www.instagram.com/kelsie_bowen/) 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.

## We know that every person's story is unique and deserves to be heard.

### Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

### Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

### Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

### Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

### 1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

### 2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

### 3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

### 4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.