Dear Parents,
2017 started off like any other year. Tess was resuming her competitive tennis after a short break, recovering from an arm injury. We had all our plans set on which tournaments she would play during the year. Calendars sorted out for our annual family trips and list of potential camps for summer.
Tess came down with a headache at the end of January and was treated for a sinus infection. Unfortunately, the headache went from a sinus infection to a persistent 24 x7 head pain. 3.5 years later, 20+ doctors across various specialties, multiple alternative therapies, multiple full week stays at UCSF Children’s hospital for infusion therapies and multiple ER visits, we still have no answers. But the headache has a name – New Daily Persistent Headache (NDPH). The underlying headache has migraine features and pain spikes based on weather, sleep patterns and various other triggers. A perfectly healthy child went from playing 10 hours of tennis/week and being a strong student to missing weeks of school and not being able to get out of bed. We would drive the carpool day after day without our own child.
In the Spring of 2018, a post on the pediatric teen and young adult migraine page on Facebook would change our lives. A Mom whose daughter had headaches recommended the Cleveland Clinic Pain Rehab program that taught her child how to cope with this invisible pain disorder. Within hours of reading the post, I contact the Mom and got all the details related to the program. I contacted Cleveland Clinic and set up the necessary appointments to have Tess evaluated for the program. My husband flew out to Cleveland with Tess for the evaluation. She was accepted into the program and we scheduled to take her there for three weeks in the summer of 2018.
The three-week rehab program helped change the trajectory that our family had been on. Tess met many other kids who had various pain disorders. I met other parents who were dealing with similar situations. We realized that even through this was not something we had encountered before, it was not a rare condition.
Tess participated in this program just before she headed off to High School. The tools and techniques taught and practiced over the three weeks in Cleveland have helped her thrive in High School and her extra-curricular activities. She has been doing very well with her classes, is on the Varsity Tennis Team (where she won the most valuable player award) and continues to amaze us with her resilience and diligence. We have turned the corner on our journey to manage and conquer this invisible disease. Though giant strides have been made on managing the chronic pain, we are still working on and hopeful of making her pain free.
So, why let our daughter tell her story publicly via a website? After all, we view ourselves as protective parents like many others holding off allowing social media apps into the lives of our kids :)
Tess has a deep desire to support and help other kids and teens battling chronic pain. We feel a site like this would have helped us navigate this detour on life’s journey with hope and strength. More importantly, we admire and support Tess’s deep desire to support other kids and teens who have a similar health challenge. Tess’s goal is simple. If this site has helped just one person feel more courageous, inspired and hopeful, she knows she has done something wonderful.
We are incredibly proud of Tess’s resilience, empathy and courage. We are very grateful to our family, friends, teachers, doctors and caregivers who have helped us on this journey.
Our best,
- Tess’ mom and dad
