How it all started… Part One

I feel like when you’re me at 36, the headliner is “breast cancer survivor.” It’s such a small part of who I am, yet it has been the defining thing to happen to me in the last year and it has changed my life forever. But that’s not where the journey to who I am now really begins. I’d say it begins with the pandemic colliding with my autoimmune diagnosis and my son’s health issues.

In July of 2020 my eyelid began incessantly twitching. You may recall July of 2020… It was not a relaxing time. The literal entire world was experiencing the great trauma that was the Covid-19 pandemic. I had just surprise homeschooled my kindergartener for two months while juggling a three-year-old and one-year-old. It would possibly be normal for my eyelid to be twitching. But by July I was accepting the new realities of living in a pandemic and didn’t feel all that stressed. Part of me was even enjoying staying home and outside all the time, slowing down. I slept great and still my eyelid twitched rapidly at almost all hours of the day. I’d felt recently like I was behind the curveball with energy too. By August my stomach was also in knots and behaving totally irregularly. I was losing my appetite, having regular diarrhea, but not losing any weight. I finally figured that with my daughter nearing two years old and no plans to have another child, I couldn’t call my obstetrician my primary doctor anymore. So, I scheduled an appointment at a reputable general practitioners office in town- you know the kind that believe in both regular medical practice and nutrition/other relevant lifestyle habits, new ideas from current studies. They did a wide panel of labs and discovered that while I had the usual culprits of low vitamin D and B and other things, my thyroid levels were dangerously off balance (super low T3/4, very high TSH) and my thyroid antibodies were off the charts, literally. I was immediately diagnosed with Hashimoto’s disease, put on levothyroxine, and told to look up the “thyroid pharmacist” online. They said several patients had great success managing their condition by following her guidelines. I was a bit devastated. I had a sister-in-law and several friends who had this autoimmune condition where your body attacks your thyroid, and all had radically shifted their diets and not only felt better but were even reversing the damage done. That seems like good news though, right? Well the problem is that I freaking love food. Give me all the baked goods, the pizzas, the pastas. All of it. I didn’t want to adjust my diet, to cut out gluten and dairy and who knows what. So I began mourning the loss of my “eat whatever I want” life.

Simultaneously at this time, my oldest son (who was only six years old) began unexplainably limping and complaining randomly of leg pain only in his left leg. Sometimes he seemed sort of alright and other times you would have thought someone was actively sawing his leg off. I should probably mention that I’m also a nurse. I’m not actively working but I have my BSN from UNF and am a registered nurse in Florida. I was perplexed. His complaints were inconsistent and there was no redness, swelling, or heat coming from where he said it hurt. No obvious signs of injury. The first week we thought maybe he’d bruised a bone while tubing or had an overuse injury of some kind from while we were on vacation. As time went on we began to wonder if he’d had a growth spurt and strained a ligament. We took him to his pediatrician and he understandably agreed- no known injury, no signs of infection or inflammation… probably growth related. But since my son was in seemingly obvious pain, he set us up with a physical therapist. His appointments with PT only confused matters. He is a lively kid with a flair for dramatics and love of attention, so she began to suspect he was pretending. To her credit there was no exterior sign AT ALL that something was wrong, only his claims of pain. As a parent I was beginning to be overwhelmed with frustration. Sometimes we’d see him walk normally and not seem in pain at all, while other times he’d cry about walking even the shortest distance. Did I trust him? By the grace of God, one night as he was sleeping, I went to tuck him in and he was totally crooked on his bed. I gently grabbed his legs and to shift them back under the covers and he yelped in pain while in a deep sleep. I was positive he was telling the truth and I needed to get to the bottom of his leg pain. I called his pediatrician the next morning and asked for a referral to a pediatric orthopedic doctor. I had no idea that I was about to have the scariest doctors appointment of my life.

To recap… I’m trying to figure out what to eat and am just beginning medication to correct my thyroid- I am not well- AND my son clearly has something bizarre going on in his leg. Also, we’re relatively early in the pandemic. I was still in the “making sourdough bread” phase. At my son’s appointment with the pediatric orthopedist they did x-rays and discovered a hole growing in the end of his left femur. The doctor informed me that it was likely one of three things- a benign bone tumor, a malignant bone tumor, or an infection. He couldn’t speculate on which one, as it was presenting very uniquely. I left the appointment absolutely gutted, wondering if my six-year-old son had bone cancer. The next available MRI was in 10 days and we would have no answers until then. Andy and I proceeded to not sleep much at all and to cry often. I apologized profusely to my son for questioning his sincerity about his bone pain. We were wrecks and we began to realize that as our son’s pain escalated, he too was sleeping worse and had bags under his big, hazel eyes, and had lost five-ten pounds from his already tiny frame. In movies they cut out all the waiting that you do in real life, non-emergent healthcare. Sure, if you’re in a motor vehicle accident and have an active, life-threatening bleed, they are going to get you back stat. But chronic conditions, many cancers, etc. you can wait your little heart out. Finally, the MRI came and our son was a champ. He didn’t care for the I.V. but once they got it in, he laid perfectly still for the entirety of the MRI (with promises of a new lego set if he didn’t move). It was performed at a children’s hospital so they gave him goggles to watch a movie on and he also received a brand new toy from them after he finished.

I think it was the next day that they called to give us the results. I can’t say enough great things about Dr. Read who walked us through this initial part with our son and even gave us his cell to reach him if we had any questions or issues. They had read Hudson’s MRI and felt like it was likely that he had a Brodie’s abscess caused by an unknown infection in his left femur, but they wouldn’t be positive until they got him into surgery. He had even consulted with an oncologist at Mayo Clinic and everyone felt optimistic that it wasn’t cancer, but rather an unusual abscess. We had a loose plan to meet with a surgeon the following week and schedule surgery to clean out his femur. Well, the next day was a Friday and I got a phone call in the early afternoon asking if I could be at the children’s hospital with my son that evening to go through the ER and get him admitted for surgery with the on-call orthopedic doctor the next day. An ER wasn’t exactly where I wanted to be (remember these were full-blown pandemic times), but we could forego the required labwork/pre-op examination if he came in through the ER at the beginning of the weekend. The doctors were worried that if the abscess in my son’s femur burst, he could become septic quickly if infection spread into his bloodstream. So our loose plans from earlier quickly became more urgent. When something ambiguous and totally new to you is going on with your child, as bewiledered as you feel, you still don’t typically say no to the doctor or, “let me schedule childcare and get family to come in town first, please.” So I said ok and called my husband freaking out- we have no family in town. Was I going alone with our son? Could his parents come up that quickly? How long would we be in the hospital and what would we do with our two little kids in the meantime? I was beyond scared and flustered. I rushed with the littles in tow to get him from school and get us packed up for an unknown amount of days at the hospital. Shortly after Andy got home, my still-very-young eldest child and I headed to the pediatric ER about an hour from our house. Andy’s parents were able to head up early the next day and friends stepped in to help with the younger kids too. Andy would join me at the hospital first thing and we’d send our little guy into surgery and do some more waiting…

I’m pretty sure introductionary blogs are supposed to be short and sweet, to the point. But that’s not happening. Frankly, it’s been a complicated and long last few years. Our story is nuanced and I feel like I simply cannot adequately explain the tenderness of some parts without giving the back story from other parts. It might be my unseasoned skill as a writer too, but alas here we are…