Suzanne Gallihue

July 2024

CF LETTER ’24!

Ok… long time no see… sorry. I sincerely apologize for the lateness of this message. I go by Lily now, by the way. Recently, you’ve probably seen my mother refer to me as “Li” with “They” pronouns, but that was more a transition, test-the-waters name. It’s Lily, she, from here on out! Slightly late Pride Month Coming Out, I guess. Last year, I talked all about how college and adulthood meant I had simultaneously more things to do and less time to do it. And, well, turns out, that isn’t just a college problem – it happens during the summer, too. So, some things slip through the cracks! CF Letters, for instance.

This past year, I’ve been quite busy. Year 3/5 of College, Done! I’ve split my time amongst three different programs – I got my citation from the UMD Honors College, performed a ton, and studied almost as much . I know that sometimes these letters are just as much of a life update as a CF Fundraising pitch, and as my mom could tell you, I’m known to “forget” mentioning what projects I’m working on, so I figure I should be keeping y’all in the loop. Here’s a list:

• Last July, I spent a month at the Brancaleoni International Music Festival in Piobbico, Italy. I had the honor of performing my first Mozart opera, as Don Basilio/Curzio
• In December, I continued my time with Dr. Ferdinand’s UMD Chamber Singers, performing Handel’s The Messiah with the National Symphony Orchestra under Laurence Equilbey
• Along with a friend I led the FreundeMusik choir and we performed at the UMD Memorial Chapel for both Veteran’s Day and Lessons & Carols
• January, some friends and I revived UMD’s student-run Opera company, OperaTerps, where I made my directorial debut with Ned Rorem’s Three Sisters Who are Not Sisters.
• In March, the Chamber Singers performed Orff’s Carmina Burana with the Baltimore Symphony under Director Jonathon Heyward
• In April and May, I wrote and produced a recording session for one of my newest pieces, #1 of Three Pagan Rites (Hi Facebook people! You just saw this!) (You can also find it on https://www.lilygallihue.com/threepaganrites)
• FreundeMusik performed once again, and I culminated my time running the SoundStudio, my Honor College’s recording studio and creative space.
• Also, in May I obtained my Bachelor of Arts in Voice Performance during my Junior Recital which I performed with my talented friend Gracie Null.
• And lastly, in June, I just finished up a gig with the NSO, doing Verdi’s Otello under Director Ginandrea Noseda, which was an absolute blast.
• Amidst that, I’ve spent a ton of time traveling! Reykjavik, Boston, Michigan, Jersey, Florida, Savannah, Tennessee, Virginia, Chicago! National Parks include Indiana Dunes NP, Great Smoky’s NP, Shenandoah NP, Delaware Water Gap NRA.

Whew!  And while I love the grind… I am always mindful of my health. CF is a double-edged sword. I can only pursue these opportunities when I am healthy, working on my treatments and receiving new and cutting-edge care and therapies. When I don’t… all my activities are not possible. Despite this list, this year, I’ve spent the most time in the hospital since starting college. Right before Italy, I frantically started IV medicines and extra strength drugs so I would be healthy enough to go on the trip. My March Junior Recital was delayed until May because of a massive COVID/Flu/Pneumonia combo that put me in the hospital for weeks. And most recently, I just got out of the hospital, after maybe one of my scariest visits yet. I won’t go into too much gross detail, but I had a major bleed in my bronchial artery, then they embolized it, which accidentally caused a pseudoaneurysm in my femoral artery that I’m just regaining the ability to painlessly walk from. The fact is… with CF, the challenges only continue. I apologize for the sudden tone shift that this is taken, but the fact is, with chronic illness, we can never grow complacent, and as we mature and grow more responsible, much of that increasing responsibility must be committed to managing a worsening condition.

Your support is essential, as the therapies and medications it develops help me and others with CF in two significant ways. They allow us to embrace the joys, accomplishments, and achievements like I’ve shared with you, and they also help to better prevent and minimize the struggles and scary moments. There are not enough words to express how beneficial your support is to me, and others like me.

Your love, your care, and your interest are eternally appreciated by me.

All the best,

Lily Gallihue

GO, GO GALLIHUES!

Mom Addendum: You'd think I'd have learned by now that bugging kids/young adults to do things on my schedule is pointless. I finally got this letter written because I'm having surgery on Wednesday and will be one-armed for 6-8 weeks, so I insisted it had to be done this weekend. Playing the sympathy card worked! LOL

What a year it has been, both for our family and in the CF world. CF is making headlines for all the incredible strides it is making to lengthen lives and improve treatments. But in the fine print you’ll read that not everyone with CF is benefitting so positively. Lily still does her daily treatments (airway clearance, nebulized drugs and many pills, and even several rounds of IV antibiotics and a couple hospital stays this year) even though many with CF have been told they can reduce or even stop these treatments altogether. While many benefit from the “miracle drug” Trikafta, others, like Lily, don’t due to side effects, and others due to having the wrong gene mutation.  

There’s still a long way to go and more work to do, including nagging Lily to get this letter written and asking you for donations. Thank you endlessly for anything you can contribute.  - Suzi