Like Any Other Normal Day…
It was Monday, March 26th, 2018 and I thought it would be like any other day in my downtown Boston office. I brought Liam into the office with me, assuming we would have a nice morning, followed by lunch and then a visit to the specialist we desperately we needed to see. Liam loved coming to the office with me. What’s not to love? Unlimited screen time, snacks and most importantly he got spend one-on-one time with mommy even if it meant we were both on our screens.
At this point, Liam was being transported around using a stroller he had clearly outgrown. I often wondered if people would judge us – but what was I to do? Liam could barely get up off the floor much less walk down the hallway or climb steps. For a once active child, he had now become immobile.
At school, Liam would sit quietly at an outdoor table playing with Legos while his classmates continued to run around. It broke our hearts to watch as he often asked a friend to spend time with him.
To keep Liam entertained at home we purchased tons of buildable toys along with board and card games. He enjoyed laying on the couch but would call to us to help him adjust his head/neck position on his pillow. At night he slept in between us and would yell out “daddy, move my head.” He would even ask us to lift him to the bathroom which was an indication that something was wrong.
In January of 2018, Liam developed an odd rash on his knuckles, toes and face. Soon after Liam’s muscles started to atrophy. After many visits to multiple pediatricians and specialists from various hospitals, we were very close to a diagnosis. All we needed was rheumatology to confirm however things never go according to plan.
Monday March 26th, 2018, the day I had taken Liam to work with me in preparation for his pediatric rheumatologist appointment at Tufts Floating Children’s Hospital, he began to scream, “Mommy, Mommy, blood in my throat!”. I ran over and checked his mouth and held a trash can for him as he began to dry heave. I started to panic.
“Do you want to go to the doctor?”
“Take me to the doctor mommy”, Liam cried.
That’s when I knew this was serious. He HATED going to the doctors. I scooped Liam up with tears in my eyes and ran into my boss’ office, asking him to call 911 for an ambulance to Tufts Floating Children’s Hospital. My friend and boss gathered all of my things as we waited for the ambulance to arrive. Somehow in the chaos I managed to call Luke and tell him to meet us at the hospital.
We met the specialist we desperately wanted to see. She knew almost immediately what Liam had and she admitted us. We didn’t leave the hospital for a week. I remember Luke and I dressed in our work clothes, cars parked in separate lots downtown and my sister and brother-in-law coming to see us.
Liam spent 4 days hocked up to an IV and received IV pulse steroids, IVIG (intravenous immunoglobulin) and was a given a battery of other tests. A year later, Liam now receives IVIG every two weeks, takes oral prednisone every day, endures weekly methotrexate (chemo) shots, and takes supplements.
As a family we work towards raising awareness and funds for the CureJM Foundation, the only non-profit that exists that supports kids with Juvenile Myositis.
