|
Jackie Drayton tells her story better than we can. After all, it is her story! Jackie has polyarticular juvenile arthritis, vasculitis as well as immune deficiency. Because there is no pediatric rheumatologist at Wolfson, Jackie is treated at Children’s Hospital, Boston. The doctors there work with Wolfson doctors for Jackie’s regular infusion therapy.
But let’s listen to what Jackie has to say...
My name is Jackie and when I was a year old, I was diagnosed with Polyarticular Juvenile Arthritis. Mommy says that means I have a form of juvenile rheumatoid arthritis which affects five or more joints. Well, all I know is that sometimes I hurt all over and my toes and fingers get pretty swollen. I have to be very, very brave. And listen to this…..girls are two times more likely to have this disease than boys. That doesn’t seem fair!!
Just when I got pretty use to Polyarticular Juvenile Arthritis, my doctor explained that I also have an immune deficiency. That big word means my immune system doesn’t work very well and I can get sick pretty easy.
When I was really little (I am three now!), I got to take my first airplane ride… to Children’s Hospital Boston. My Mommy, Dad and Mimi took me there to meet a new doctor, Dr. Robert Sundel, the best Pediatric Rheumatologist anywhere!
For a long time I got to ride that airplane every three weeks to see Dr. Sundel and Dr. Chou, my Pediatric Immunologist. I have spent 3 months of my life in Boston. These trips began to get harder and harder to make. Plus, I missed my brother and sister, and my Mimi doesn’t like the cold weather!
Luckily, with the once a week injections of methotrexate and every 3 weeks I get the IVIG infusions, my Boston doctors prescribed, I am feeling good. Then, Dr. Sundel suggested I should have several of my treatments at home. Sadly, there is not a Pediatric Rheumatologist in Jacksonville, but my Mommy called Larry Freeman, Wolfson’s administrator, and he called Dr. Dale Schrum, a Nemours Allergist/Pulmonologist. And they agreed to figure out how to help treat me here in Jacksonville. It’s pretty cool that I have doctors in Boston and Jacksonville to take care of me.
My doctors in Boston coordinate stuff with Dr. Schrum, and then Dr. Schrum arranges for the treatments here. He makes sure I am in tip-top shape before and after the infusions. That’s when they put some medicine in my body through one of my veins. So, I get to come to Wolfson every 3 weeks and have a special infusion that keeps me feeling good. I have been to Wolfson a bunch now! I love POPS (that is the 2nd floor where I have my infusions); everyone is so nice – Nurse Lisa doesn’t even run when she sees me now. I have really naughty veins which makes me a hard “stick!” It always makes the nurses feel bad when it takes more than one stick to get my IV in. My Mimi will tell you that I am very brave, though.
I feel so lucky to be able to have some of my treatments at Wolfson in my own hometown. Especially since I’m going to be there for a long time to come. It’s o.k. because the wonderful nurses and staff make me happy to be there. They know just what to do!
Thank you for letting me tell you about me!
Jackie Drayton |
