My Xtreme Hike Story
Elizabeth Durling
Fundraising for Central New York Xtreme Hike 2026
Elizabeth Durling
Dear friends and family,
Another year has come and gone and it’s time once again for our annual fundraising campaign. This past fall when the girls and I headed back to school we did NOT wear masks in school and public settings for pretty much the first time since the pandemic. It was so liberating, and yet also nerve-wracking. As the seasons changed, many staff and students had COVID, RSV, Flu A and/or B, strep, the stomach bug…I waited for one of us to catch something, but we’ve pretty much avoided major illnesses this year by some stroke of luck. Ava also mastered swallowing pills during the winter months! She no longer needs her enzymes sprinkled on applesauce or her Orkambi mixed with yogurt. Thankfully, her liver levels have stabilized and stayed within the normal limits, too.
And yet, it still hasn’t been easy. After a routine clinic visit in September, one of Ava’s nurses called to report that her recent throat culture showed she contracted pseudomonas aeruginosa (PA) again. This time, Ava’s doctor recommended we try a different inhaled medicine called Cayston. For the next 7 months we underwent a vicious “28-days on and 28-days off” cycle of treatments involving Ava’s standard sick regimen of inhaled medicines and airway clearance treatments in addition to Cayston. Ava was also put on an oral antibiotic 3 times per week to help eradicate the bacteria. Between all of her treatments, we spent 224 hours completing sick treatments over the course of 4 months, and an additional 336 minutes over the course of 4 months completing the “midday” Cayston treatment. Just over 11 hours of that 224 hours was spent just administering Cayston alone.
Ava also had 5 teeth removed in March WITHOUT sedation due to the complications it can cause in patients with cystic fibrosis. Thankfully, we caught a break right before Ava’s birthday – her pseudomonas FINALLY cleared. But we still had at least one more round of Cayston that she finished in April.
This year, I’d like to ask that you consider donating to the CF Foundation as a belated birthday present in honor of Ava, who turned 8 on March 13th. She has endured so much this past year and has been a real trooper through it all. Thank you to all who have already helped make a difference by donating on our behalf in the past. We’ve walked at Great Strides for the last 6 years and raised over $10,000, plus we raised over $5,000 for the Xtreme Hike last year. Kirby and I will again be participating in the Xtreme Hike in the Adirondacks near the end of August. We each need to raise a minimum of $2,500 to participate, so we need your help. Any donation, no matter how small, is appreciated! Help us hike the mountain and make CF stand for “Cure Found.” Thank you in advance!
With gratitude - The Durling Family
Another year has come and gone and it’s time once again for our annual fundraising campaign. This past fall when the girls and I headed back to school we did NOT wear masks in school and public settings for pretty much the first time since the pandemic. It was so liberating, and yet also nerve-wracking. As the seasons changed, many staff and students had COVID, RSV, Flu A and/or B, strep, the stomach bug…I waited for one of us to catch something, but we’ve pretty much avoided major illnesses this year by some stroke of luck. Ava also mastered swallowing pills during the winter months! She no longer needs her enzymes sprinkled on applesauce or her Orkambi mixed with yogurt. Thankfully, her liver levels have stabilized and stayed within the normal limits, too.
And yet, it still hasn’t been easy. After a routine clinic visit in September, one of Ava’s nurses called to report that her recent throat culture showed she contracted pseudomonas aeruginosa (PA) again. This time, Ava’s doctor recommended we try a different inhaled medicine called Cayston. For the next 7 months we underwent a vicious “28-days on and 28-days off” cycle of treatments involving Ava’s standard sick regimen of inhaled medicines and airway clearance treatments in addition to Cayston. Ava was also put on an oral antibiotic 3 times per week to help eradicate the bacteria. Between all of her treatments, we spent 224 hours completing sick treatments over the course of 4 months, and an additional 336 minutes over the course of 4 months completing the “midday” Cayston treatment. Just over 11 hours of that 224 hours was spent just administering Cayston alone.
Ava also had 5 teeth removed in March WITHOUT sedation due to the complications it can cause in patients with cystic fibrosis. Thankfully, we caught a break right before Ava’s birthday – her pseudomonas FINALLY cleared. But we still had at least one more round of Cayston that she finished in April.
This year, I’d like to ask that you consider donating to the CF Foundation as a belated birthday present in honor of Ava, who turned 8 on March 13th. She has endured so much this past year and has been a real trooper through it all. Thank you to all who have already helped make a difference by donating on our behalf in the past. We’ve walked at Great Strides for the last 6 years and raised over $10,000, plus we raised over $5,000 for the Xtreme Hike last year. Kirby and I will again be participating in the Xtreme Hike in the Adirondacks near the end of August. We each need to raise a minimum of $2,500 to participate, so we need your help. Any donation, no matter how small, is appreciated! Help us hike the mountain and make CF stand for “Cure Found.” Thank you in advance!
With gratitude - The Durling Family
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