Dear Family and Friends,                                                                March 4, 2026

  

My husband, Zeb, and our two cats, Toothless and Freya, are doing well. Zeb and I still work in government contracting and are very involved in our church. My family is doing well too, though we sadly lost our sweet dog, Lily, to cancer in November. My siblings and I took her out for a special last day. It was heartbreaking. If only dogs could live forever…

You may remember that I had pneumonia caused by the flu and was hospitalized right before I wrote my letter last March. I mentioned that, though I had residual pain and mucus, everything was getting better. I did not know then that the pain was actually a broken rib caused by all the violent coughing. I also did not know the steroid I took caused immune system suppression that led a rare, opportunistic fungus sitting dormant in my lungs to become active. Cue a string of problems.

Once all the hospital medicines wore off, I developed severe inflammation in my left lung around my broken rib. I felt the most bizarre pain and restriction when taking a deep breath. There was also a sound audible to others like the noise when you rub balloons together. My doctors believed it was remaining inflammation from pneumonia, but then they discovered the broken rib when CT scan results came back. In the meantime, I was really struggling, and then my sputum changed: first green, then brown with some blood. The lab determined I had moderate fungal growth in my lungs of a very uncommon mold fungus known as Rasamsonia Argillacea. This has been one of the scariest developments in my health recently.

I went back into the hospital in June, this time at The National Institutes of Health (NIH), and started on IV Micafungin. It was the only medicine on the market that could potentially treat the resistant fungus. I went home after a few days but continued the IV course for six weeks. Amazingly, Zeb and I were able to vacation on the Eastern Shore as planned and attend the Chincoteague Pony Swim while doing IV infusions on the go. I watched the initial swim from my brother’s boat, but I kayaked for the return swim with the IV in my arm wrapped in plastic and sealed with tape. (Don’t tell my doctors.) The event was awesome and now checked off my bucket list! I’m so grateful for fun days like this despite the added difficulties most “normal” people do not have to consider.

While on the IV medicine, I had blood drawn frequently, and the results of my very last draw were terrifying. My alkaline phosphatase, an enzyme found mainly in the liver and bones, skyrocketed. The top end of normal is ~150 IU/L. Mine was over 3,000 IU/L! I immediately had an emergency MRI that showed an atrophied pancreas and gallstones, but nothing that would account for the rise. I then went back to NIH and had a ton of blood tests and a PET scan that also left me without answers. Ultimately, my doctors assumed the IV antifungal caused medication-induced liver injury. Fortunately, my numbers returned to normal range about two months after I stopped the medicine. Unfortunately, I still had the fungus growing in my lungs. My NIH doctors obtained special, individual approval for me to try an experimental antifungal not yet on the market. Since October, the pills have shipped from Switzerland to Maryland every month or so. NIH is NOT allowed to ship this experimental medicine to my house, so my family members have graciously taken turns picking it up in person. My lungs are feeling better overall, and the fungus concentration in my cultures has decreased. We are praying this trend continues!

Last year, I also dealt with terrible stomach issues and unintentional weight loss of about 20 pounds (as someone already underweight). I started to have severe malabsorption. It was miserable! We think the culprit was the pancreatic enzyme replacement pills I have taken my whole life. Seemingly, they just stopped working! I switched to a different enzyme brand and am feeling better. My pancreas has never worked correctly (and has atrophied as I mentioned before), so I rely completely on this medicine, and my other CF medicines, to keep me alive. This is also why I depend on your contributions and the work of the CFF.

The 2026 Great Strides walk is Saturday, May 2nd at the Great Dismal Swamp Canal Trail in Chesapeake with check-in at 9:00AM and the walk at 10:00AM. Please come walk with us! You can register as a walker or sponsor our team at https://fundraise.cff.org/hr2026/TeamRachelsHope. You can donate online or write a check payable to the Cystic Fibrosis Foundation with “Team Rachel’s Hope” as the memo. I am challenging you also to ask your employer for a charitable match. Donations are tax deductible! Last year, Team Rachel’s Hope raised more for Great Strides than in any previous year: $31,000.69. INCREDIBLE! We are getting closer and closer to a cure. Look how much progress our team, the CFF, and YOU have made, whether you are newer to the cause, or you’ve been with us every step of the way for 28 years. We are immeasurably grateful!

Blessed Beyond Words,

Rachel Hope VanLandingham Morris