Through the eyes of Marlee

A Day in the Life of Marlee – as told by Marlee

• Mommy gets me up at 6:25 in the morning

• I get dressed first, and then I have to do treatment. Mommy has already set up my vest and nebulizer on the couch for me.  I use my inhaler first, then start treatment. I will watch a show while it goes on. It takes me about 20 minutes.

• After that, I get to eat breakfast. I cannot eat before treatment because it will hurt my belly.

• My favorite breakfast is cinnamon rolls. Sometimes I eat cake. When I eat breakfast, I have to take 4 enzymes with my food. I also take my special vitamins and two Trikafta pills.

• After that, we take my new puppy, Rocky, on a walk. Once we get home, we pack up and go to school.

• I pack snacks for school and my purple Powerade. Mommy had to get special permission for me to have it, as my friends in my class cannot have it. One time, a long time ago, my teacher told me I couldn’t have it, Mommy had to call the Principal.

• For school, I pack my lunch. Sometimes I will get hot lunch if I like what they are making.

• At school, during snack and lunch time, I take my enzymes on my own. Sometimes my teacher and friends have to remind me, but I do pretty well. Dr. M at Childrens' Hospital told me I am the youngest self-carry patient they have.

• When I get home from school, I have to clean out my lunch box and clean out my daily folders. Mommy reloads my pills for the next day.

• Once that is done, then it is time for treatment again. I do the same thing I did in the morning: my inhaler, my vest, and my nebulizer.

• At dinner, I take my 4 enzymes and just one Trikafta. I love to tell my family all about my day at dinner. We have a new rule that I have to remember to eat in between all my stories.

• After that, it is time for family relax time, and then we do it all again the next day. Not always school, but all the stuff for my CF stays the same.

A few more questions for Marlee:

What is your favorite part of your day?

When I am at school, I like Math, it is fun, and I am really good at it.  I also really like spelling tests; I always get 10 out of 10. School is really great.

How many pills do you think you take in a day?

Well, I had to ask my parents, but at least 25-30 pills per day.

What is Clinic (Childrens' Hospital visits) like?

I do awesome at Clinic, my doctors are the best. They also told me I am a professional breather.  During my breathing test, the doctor told me I was a fabulous rule follower and did better than all the others.

Do you notice a difference with Trikafta?

Well, I know mommy said I told her that my throat does not hurt anymore. I also think that food tastes better. Plus, it makes me feel better, and when I do get sick, I get to feel better and get back to school much faster. Sometimes I get better faster than Chacha.

If there is one thing you would want everyone to know, what would it be?

I want everyone to know about my treatments and all they do for me. It makes me feel good. It helps me be the best at skiing and jujitsu. I asked mommy if I will always have to do treatment. She told me yes and that doing treatment helps me stay healthy for school and do well in my sports. It also is so important for my lungs and keeps them in great shape.