Lucas B.

My name is Lucas. I was born February 18, 2017. My mommy and Daddy call me a fighter!

At 9 months old we found out I was born legally blind with Bilateral Congenital Cataracts this was a surprise because no one in my family has ever had them. They removed those with two surgeries and I’m aphakic (without a lense in my eyes) that’s why I have these glasses.

I also got colds, a lot, if you had it I got it. I was getting back to back ear infections the doctor tried to help me get better with amoxicillin and I got all itchy. We found out I’m allergic with a sensibility So I got tubes put in and my adenoids removed after meeting with My ENT Doctor.

Then one day in January of 2019 my mommy took me to the Publix, I was hungry and wanted to eat but when she picked me up and put me in the cart she noticed my lymph node was swollen. It was REALLY BIG and when mommy touched my neck it HURT! Mommy called the doctor immediately and they wanted me to come in... Right away. When she took me to our doctor they poked me 2 whole times. I cried a lot while my mommy held me. The first poke was for blood the second was a painful antibiotic shot. They said to take a medicine and come back in a few days.

Next week I went back with Nana, they took my blood again and sent me to this place for an ultra sound of my lymph nodes... They wouldn't take me because I was too little... Mommy and Nana called my doctor and had to get a stat order to do the test that day at the hospital. I didn’t want to sit still but mommy made me, it didn’t hurt but I had to stay still when all I wanted to do was play, the nice lady gave me a bear before I left!

The Next day I went to my ENT where two doctors checked my hearing and did an exam. They where also worried about my neck being so swollen. The ENT called my pediatrician very concerned and they both refereed me to another doctor She said she studies blood and is called a hematologist/ oncologist. She put me on a new antibiotic and scheduled me for a biopsy (another poke, but more owwie) and gave me a new medicine that works better on Lymph nodes. It started to work and my mommy, daddy and nana asked if we could wait to see if it got better on its own. MY DOCTOR INSISTED ON NOT WAITING. So I went back to the surgery center for the 4th time they gave me medicine and it made me go night night. When I was sleeping they took a needle and removed a microscopic amount from the infected lymph node.

Almost a week later that new medicine I got started giving me a rash just like the Amoxicillin I had when I was really little. So I had to go to my pediatrician again. But this time she had the lab work. She was excited and mommy and nana where to they thought it was a weird bacteria and I would be fine. Mommy went to work on Monday January 28th and got a call... Well many calls later that night. It was the Hematologist on the phone telling my mommy I have Langerhans cell histiocytosis.

5/12/20 - Today is a BIG day.  Lucas is getting his port taken out, and check out how important the iPad that we give every child becomes to entertain and distract.