Hi it’s Alexis. This week I have been dealing with a lot of nerves and emotions about my upcoming endoscopy. Next week I head back to Baltimore, Maryland, the place I haven’t been back to since my hospitalization there a few months ago. It almost feels like its judgment day for me.
I’m feeling all sorts of emotions. Heading down to Baltimore reminds me of how sick I was when I first went down there. I was so sick, probably sicker than most people realized. When we first arrived at the hospital, I had that feeling of helplessness. I needed someone to figure out what was going on with my body. Why was I so sick? I was sick of being sick! I wanted my life back. But I needed answers first.
I think back to that first night at the hospital. I remember how scared I was when I walked into what would be my hospital room for the next two weeks. Then I remember when I met “Dr. Rockstar” as they call him, aka Dr. Fasano, the world renowned celiac researcher. He said to me, “Alexis, you are not leaving here until I figure out what is wrong with you!” I remember breathing a sigh of relief in that moment. I believed him- Dr. Fasano and his team were going to get me better.
That first week in the Maryland hospital was a complete nightmare because I became sicker and sicker. I remember my nurse Michelle’s reassuring voice telling me it was going to be okay when I couldn’t even hold down a sip of water. She would tell me entertaining stories about her family and friends. Then there was Renee from Child Life who always encouraged me to come out of my room each night for the activity of the day. Renee and I would chat about my life back home in NJ. There was Dr. Kader with his funny ties, his encouraging words and his wealth of medical knowledge. There was Niddhi, who is a gastroenterology fellow for Dr. Fasano’s group. She works so hard and saw me every day for 14 days straight. I even asked her if she ever goes home. She was so smart and so sweet and she is going to make an excellent gastroenterologist. I was surrounded by amazing doctors and nurses who cared and who were determined to get me better. I can look back on this nightmare and find some positive in it. I met incredible people.
And so now, with my upcoming endoscopy I will finally have the final diagnosis. Do I have refractory celiac disease or not? Will I be the 2nd child in the U.S. to have this rare disease? I pray with all my might that I don’t. I want to be able to get back to somewhat of being a normal kid. I want to be able to have my gluten-free pizza again and maybe, just maybe, have a piece of gluten-free birthday cake for my 10th birthday. I want to be able to eat out at restaurants again that have a gluten-free menu and not bring a cooler filled with food for me. I want to be able to eat Cocoa Pebbles for breakfast if I want. I just want to be a normal kid again. I want my life back.
Until next week…
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