EARLY SYMPTOMS

The scary thing about this rare disease is that it started silently. I keep asking myself, did she get this because of me? Maybe while I was pregnant with her? Was there something I exposed her to that caused her body to attack itself? I will never know. But I will say that now I'm terrified. Her daily pain breaks my heart. I feel like I wasn't careful enough as her mom and I failed to protect her. Now there's a war happening inside her tiny, precious body. 

I keep wondering when it all started and I can't pinpoint an exact moment, but I do know some of the early symptoms that I know were connected to LCH. Her cancer-like disease is very rare. Like 5 out of every 1 million children rare. I had never heard of this rare disease before the doctor called me about Isla. Normally when you hear about cancer or cancer-like diseases, you hear about cold like symptoms - being lethargic, random bruising, etc. But Isla's symptoms were not like that and I do believe that is why it was so incredibly hard to figure out what was wrong. 

CHRISTMAS EVE 2024

Her earliest symptom that we can remember was on Christmas Eve. Isla got a double ear infection and we had to go to the pediatrician after hours. They prescribed her amoxicillin for 10 days. It was nightmare to find a pharmacy open on Christmas Eve, but we got it and gave it to her that night. We celebrated Christmas Eve at our friend's house. While getting her new Christmas pajamas on, she cried when we lifted her right arm up. I wondered if it was pain from her ear infection or if she had injured it somehow. Either way, that was it. Little did I know, it was Langerhans Cellular Histiocytosis.

That week after Christmas Eve, she randomly got cradle cap again after not having it for a year. I was so confused because I always make sure to scrub her head every time she takes a bath. I had absolutely no clue that was a symptom of her rare disease.

The next symptom was the one that caused us the most concern. She had a stiff neck that wouldn't go away. At first, I hoped it was just a minor strain or something that would resolve on its own, but as days passed, I knew something was wrong. Watching her struggle, seeing her discomfort, and not knowing what was causing it was heartbreaking. We visited multiple doctors, searching for answers, each appointment bringing a mix of hope and frustration. Little did we know, this was just the beginning of a journey we never expected to take. I will go into detail about her stiff neck, the countless doctor’s visits, and how we finally arrived at her diagnosis in other posts. Thank you for reading and for being part of our story.

Love, Megan