WHAT. A. YEAR. We've all been impacted by 2020 - between a global pandemic, racial injustice, the presidential election, and all of the challenges that came with the uncertainties during this time. I have gone through many highs and lows in the last 12 months and feel extremely fortunate to have my job, my home and my family. My heart goes out to the millions of people in our country and around the world who are not able to say the same.
This year started strong with my husband throwing me a surprise 30th birthday party in January, and soon slipped into a very different reality. It's weird to imagine that just a year ago we felt comfortable hosting a large gathering, and now I have a favorite face mask and my hands are perpetually dry from washing them so much. Quarantining in late March, all of April and the beginning of May brought some of my darkest days and loneliest nights.
In the midst of the national shutdown, Jack was extremely sick off and on for weeks. It all started when he had an allergic reaction to amoxicillin that was given in response to his first ever sickness and ear infection. He had hives covering his entire body. He tested negative for coronavirus, strep and mono several times but had a high fever that was not responding to medication, and he began limping. We could not comprehend how Jack was getting sick back to back when he wasn't even leaving the house. Greg and I were switching off doing only essential outings and were very diligent about wearing our masks, sanitizing, wiping down the groceries, etc. We spent countless hours at the doctor's office until we eventually landed in the ER at Nemours Children's Hospital in Orlando. Because of covid restrictions, only one parent was allowed to accompany Jack, and what followed in the next 4 days was a nightmare.
Jack's fever and inflammation levels finally came down and we were discharged without a clear diagnosis, despite every team at the hospital looking for answers. Multiple doctors from Infectious Disease, Rheumatology, and Orthopedics came to see Jack, trying to figure out what was causing these fever episodes. We were able to rule out cancer, lupus, septic joint, and anything truly serious. That hospital stay was one of the hardest times of my life. Jack and I have had a strong bond from the moment he was placed on my chest after birth, but I think in the wake of what we went through together, that bond is even deeper. He knows that no matter what, Mama is there for him.
We landed back in the ER one month later and the doctor that night thought maybe it could be Periodic Fever Syndrome. She immediately called the rheumatologist and set up a follow-up appointment with the specialist. After 5 episodes in 8 weeks, with fevers up to 104-105 and lasting 3-5 days each, Jack was diagnosed with the rare, non-genetic, auto-inflammatory disorder PFAPA. Periodic fever, aphthous stomatitis, pharyngitis, cervical adenitis (PFAPA) is characterized by fever, mouth sores, sore throat, enlarged lymph nodes, inflammation, and sometimes joint pain that occurs at regular intervals (typically every 3-8 weeks). The cause and trigger is not known, and it is not contagious.
We have a treatment of oral steroids to be given at the onset of an attack and it has helped eliminate the episode entirely. Luckily the frequency of Jack's episodes have slowed down recently, with our longest stretch being three months between flare-ups. The outlook is good - most children grow out of PFAPA by their second decade of life, with no negative effects to their growth and development, and are otherwise healthy as the disorder is relatively benign. Nonetheless, it is terrifying and heart wrenching to watch your child go through something that neither of us can control.
I don't want Jack to miss out on anything because of an episode and that unknown is tough for a worrier like me to overcome. He had a flare-up on the day of his first school pictures and I know it's such a small thing, but it broke my heart that he missed it, and made me think of the other events in the future (soccer games or trumpet recitals, birthday parties and field trips) that he might not be able to attend because of PFAPA. Greg and I have been absent for multiple days of work to be home with Jack to administer the steroid and comfort him through the attack.
This year has been excruciatingly hard, but I know I will look back on 2020 with a grateful heart - grateful for our quality time together as a family and memories made in our home. We had so many wonderful days this year too, and they are that much sweeter with this newfound perspective. On Jack's good days, I relish in the moments of laughter and playfulness, knowing in the back of my mind that tomorrow may bring his illness without warning.
Of all the lessons I've learned this year, the biggest one that stands out is to be kind. You never know what someone may be silently struggling with. We've all been through it this year in more ways than one, and having some empathy and giving others grace will stick with me long after 2020.
