March 22, 2019
I spoke too soon when I declared “Huzzah! The streak [of writing this letter in hospital] is broken” in my letter last year. Unfortunately, I write to you from the large windowsill of Johns Hopkins Floor 10N, Room 37. This, in fact, is not even my only hospital stay since my last letter. I’ve been here 2 times this month and a week in September too. Allow me to back up. I’ve been keeping very busy since the last letter! I entered 10th grade, continuing the exponentially difficult nightmare that is High School. I’m still having fun, and I’m excited about being an Upperclassman next year, but nevertheless school is still difficult. I’ve been in lots of shows since we last spoke! Last summer I performed in my yearly Tidewater theater camp, and played Lucas in The Addams Family. In the winter, I was Scrooge in the Christmas Carol and in Joseph and the Technicolor Dreamcoat, I played a brother, Reuben. My most recent show was my school musical, Hairspray! I had a blast embracing my inner Elvis, when I played the teen crooner-Tracy’s love interest Link. I’ve also enjoyed lots of great gigs singing with my High School jazz band! Unfortunately, I had to cancel my trip to Universal Studios with the band next week because I will still be in the hospital.
While Hairspray was very fun, it most certainly drained me. My mom says “he put his all in to Hairspray and it took it all out of him”. I haven’t been to school since the show ended the first weekend in March. It started with flu, which landed me in the hospital. They fixed me up, said it was “just the flu” and released me- but I didn’t feel much better. Two days later I had a thrown out back from coughing so much and I was coughing up blood. Needless to say, I returned to Hotel Hopkins where I was diagnosed with pneumonia and put on oxygen 24/7. I’ve been here ever since.
While I’ve had recent escapades at Hopkins, I’ve also been working to educate others about CF as well! I “starred” in a CF Foundation video about my CF Story, for a CFF event called Passion for Food and Wine. It’s a yearly fundraising event in Baltimore where over 50 different Baltimore chefs cook for donors. I was unfortunately unable to attend (because only one person with CF can be at CFF event) so they filmed a video of me singing with my voice teacher and they interviewed me and my Mom and an article was written too. Check them out: https://vimeo.com/288561024/f1e0c58e56 and https://baltimorefishbowl.com/?s=cf+teen I’ve really be doing a lot of cooking this year so I would have loved being there. I’ve also been continuing to visit the National Institutes of Health for help with my Non-tuberculosis mycobacterium infection. Yes, I’ve had it for years and it’s not going away! It is SUPER resistant to anti-biotics. I’m usually on 6-8 antibiotics at one time and I’ve tried lots of new ones this year while continuing 16 months straight of IV antibiotics until IV ended Jan. 1, 2019. Happy New Year to me! Unfortunately the replacement drugs caused my eye-sight to become blurry and require me to have weekly EKGs. This Monday, while still in Hopkins I am starting a new anti-biotic, one that has NEVER been used at Hopkins or on a CF patient. The article about it was just written in 2019! Wish me luck! But don’t worry, I’ll be monitored in the hospital when I start it.
If you haven’t heard, CF is on the silver screen. Just last week a movie, Five Feet Apart came out in theaters. It’s basically a teen love story and the characters all have CF. I haven’t seen it yet, but will when I get released. If you see it- please ask me questions about what they got right and wrong about living with CF. And I hear you need to bring lots of tissues! My mom is going tomorrow and taking an entire box!
Everyone is familiar with this section now. How did all these new drugs come to be? That’s right! With donations and ingenuity and science and federal funding (NIH). In a perfect world, money would not be responsible for getting me access to improved medicine and treatments, but unfortunately, money is the cog that drives the gear of research (fun metaphors!) But seriously your donations help power the medicine pipeline, and get new experimental drugs for me and others stuck in the hospital with CF so that we can live longer, healthier lives. So please, join Team Liam and come walk with us on May 19 http://fightcf.cff.org/goto/TeamLiam donate what you can and bring awareness to CF! Every little bit helps!
Thank you so much!
Mom’s Annual P.S. Finally, 3 weeks in the hospital and lots of nagging and he got his letter done! Liam is again trying to raise $10,000 or more for CF. He can only do that with your help- if you can’t give- maybe your friends and your family can. Visit the CFF website and you can use the social media tools to get the word out. Or maybe you have an idea for a fundraiser you’d like to do. Although there are promising drugs on the horizon this disease continues to take the lives of way too many friends we have made -young people that are just a few years older than Liam. Our hearts ache for their families. I can’t thank you enough for your support. – Suzi — Here’s something I posted on Facebook recently after Hairsprsy ended - it’s a glimpse into Liam’s world:
After the incredible weekend of Hairspray shows I am a very proud momma but I’m also a very concerned and worried momma. Although Liam may be able to get up on stage and sing and dance and look like he’s not sick at all his reality is much different. His reality involves 2 hours of physical therapy a day. His reality involves feeding himself 1500 calories every night through a tube in his stomach that he’s had since he was 9 months old. His reality is taking about 40 pills a day and 6 nebulized/inhaled drugs. His reality is doing IV drugs 3-4 times a day for 16 months straight. His reality is endless doctors appointments, hospital admissions, blood tests, dressing changes and so much more and his lung function still declines. His reality is he’s in pain or has a drug side effect everyday. His reality is having CF friends who are only 20 die. His reality is getting up every day and acting like a perfectly normal, healthy 16 year old.