Diagnosed with a juvenile pilocytic astrocytoma in February 2020, Lowin and her family found support at UPMC Children’s. Each year, her mother, Krystal, reflects on their journey. Read their story below, in Krystal’s words:
The Beginning: February 2020
On our D-Day, diagnosis day, we were delivered devastating news, “Your daughter has a very large mass in her brain.” Still processing the news, just three hours later we were shown just how big her brain tumor was. After being told the location of the tumor, everything became even more devastating. I closed the Google search as quickly as I opened it, but I still read words like “poor prognosis,” “inoperable,” “rare.” Those first few days were a whirlwind, and while all our focus was on Lowin, our community, family, friends, and strangers were planning, resourcing, and praying for us, for her.
Lowin came home two days after a 9-hour brain surgery that most surgeons wouldn’t dare to attempt because her tumor location is inoperable. We are forever grateful that Dr. Abel was our daughter’s surgeon, and we will always sing his praises.
Lowin’s first smile post-op was February 25. Oh, how I missed my cheerful happy girl! I was elated to see her big grin, and that just confirmed my girl was still in there! By April, Lowin’s tumor was growing again, evident by new onset of facial weakness. On April 23, Lowin had her port placed, and began her first round of chemo. We have come to know the staff on 9C well, and they are the top of the top, and I’m not just saying that because they reside on the top floor of the hospital! They are a caring, compassionate, hard-working team, and they have been our lifeline.
Lowin has completed 18 months of chemo. Today we celebrate her strength, resilience, courage, joyfulness, kindness, and determination to overcome. She may have lost her hair, but never her cheerful spirit. She has also regained strength in her right side and has adapted to not having full function of her hand. She leaves an invisible trail of sparkle everywhere she goes. She has not let her diagnosis define her and she has big plans for her future. She is silly and beautiful and cheerful despite the hand she has been dealt!
We will continue to visit UPMC Children’s monthly for treatment, and we are beyond grateful that we have access to a top children’s hospital just a short drive away.
Lowin Today: September 2024
Krystal and Lowin spoke during unWINEd: A Toast to Hope for a Cure with an update on their journey. Read below:
Childhood cancer is a shadow that follows our family. On the brighter days you can barely see it, but you always know it’s there lingering ready to grow as the light bends. It grows until it swallows you in the night and you’re grasping for rays of light through cracks. It’s never far and reminds you daily that you are at its mercy. Every new symptom and behavior drive you mad wondering if it’s back to take hold again – not if it will be, but when. Don’t make too many plans. Don’t change jobs. Stay the course in all things so that when the darkness returns, you are prepared.
It’s a shadow that dims marriages and families. It steals childhood from its hosts and their siblings alike. It taunts relationships that it will always be in the background. It drains your energy as you try to be the light to dim it for everyone around you. It teases you throughout the day and night that it has the upper hand as you research for treatment, for symptom management, for answers. You do it knowingly and willingly because the doctors are plagued with so many families just like ours and they are amazing at their jobs, but you want to help in any way possible.
No shadow is the same. They are all as unique as their hosts. Looking from the outside in, the shadow is barely visible. Glimpses of it appear to others and an empathetic smile is exchanged.
I don’t want my baby to be a warrior. I want her to be a kid. And in the same breath I’m so grateful she can be a bit of both.