New Name, New Routine, and a New Village of Support in the PI Community

Ashley is Finn’s mom. He was diagnosed with PI in April 2019. In this blog post, she shares about her initial reactions to Finn’s diagnosis, their weekly roadtrip to their appointments, Infusion Thursdays, and the village of support. 

Rebekah: Hi Ashley! I read your powerful story in 7 Billion Ones. Can you tell us about your initial reactions to Finn’s diagnosis with common variable immune deficiency (CVID), a type of primary immunodeficiency (PI)?

Ashley: My husband Zach and I were relieved that we had a name for what Finn has been going through. It also helped us put into perspective why he was struggling with both chronic and acute illness constantly. We were grateful that there are treatment options available, but also heartbroken that he has yet another mountain to climb when our family had already gone through so much. 

I knew very little about the term “primary immunodeficiency”. But once we met with the immunology team at St. Louis Children’s Hospital, they were able to counsel us in what they would be testing for and why. From there I spent countless hours on the IDF and Jeffrey Modell Foundation websites and started reading as much as I possibly could. I read research papers and case studies. Genetic testing and medical research are so fundamental to the future of medicine and patient treatment. 

On the way to St. Louis, Finn gets a Starbucks Java Chip Frappuccino (caffeine-free).

R: What does the drive to St. Louis Children’s Hospital for Finn’s appointments look like? 

A: Life is so fast, and you sometimes feel like you are just spinning. But what helps me is to make multiple specialty appointments on the same day. 

Our drive to St. Louis hospitals is almost 4 hours long, so we make a day of it. After someone in Finn’s care team told us about the World’s Fair Donuts, we also regularly stop by this place. It’s run by an elderly couple, and they ask Finn to smile to get his donuts. My favorite is lemon and coconut fried pie! 

We have the most amazing team of doctors, from his pulmonologist to his immunology and genetic team. The collaboration with everyone is fluid. We have always come up with a game plan together and we trust them with everything. Even going to the lab for his blood draws, we know the girls and have a great time talking and it help Finn feel more comfortable. 

R: When times get rough, what helps? 

A: Keeping a routine is key. Waking up the teenager son Sterling, prepping lunch, getting into the shower, feeding the goats…it keeps everyone going. My husband and I work together to keep the routine in motion. We have been together for 12 years, married for 10 years. My husband is my best friend, and we have gotten through so much together and have built a solid foundation. We know that no matter what, we have each other. 

I am fortunate enough to work 4-day weeks, so I utilize Thursdays for errands, cleaning the house and doctors’ appointments. That day is also Finnegan’s infusion evening.  

Finnegan has accepted it well also. Taking weekly infusion and having blood draws is hard for a 5-year-old kiddo, but he also is old enough that he recognizes that he feels better since starting IGG infusions. That is the best part, that he is feeling good and that we’re going in the right direction, although it’s tough. He can also explain what he has to other people through “Osmosis Jones”, a cartoon with a virus as the bad guy and a white blood cell as a cop. 

When Finn first started infusions, we realized that removing the adhesive for the infusion was actually more traumatic than the needles. I once tried to use a gentler one so that when he was done (he usually falls asleep during them), I could easily remove the needle and not wake him up.  However, I realized afterwards that the tape wasn’t strong enough and all of the solution had leaked all over the bed. One day, I had an epiphany and applied lotion to his legs, and the patches came off easily! Now I have a system with the lotion to protect the skin and a Sharpie to mark the spots. It also helps to have distractions for Finn, like the LEGO video game. I’ve shared these tips and tricks to the PI Facebook support group, where we have been so well received.

I’m also learning about a village of support that I didn’t even know existed in the PI community and beyond. Through mutual hashtags like #InfusionThursday and #hypogammaglobinemia, I got connected with a PI mom in Berlin. We don’t even speak the same language, but we share pictures and stories of our child with PI and translate our messages to each other and give each other words of encouragement and hope. Those are the connections that are priceless. 

Throughout this journey, my husband and I learned that we are strong, and that we will do whatever it takes to make sure our son has the best quality of life we can possibly offer. I feel empowered by the purpose I have been given to be Finn’s advocate, as well as by the understanding that I am not alone in life. We all have gone through all kinds of different experiences, and it’s priceless to share these experiences and see how that affects others and helps them feel not alone. 

To follow along Ashley and Finn’s journey, visit FinnFighters.com!