Cystic Diagnosis Part 5: Diagnosis

On Tuesday afternoon (Sept 30) just after noon, Julie called me at work, crying. She said the CF clinic just called, and Katie’s results came back positive for CF. I took the afternoon off. Shortly after I got home, the Celiac doctor (the one that referred us to the CF clinic) called us from his cell phone. He was in Israel on the last day of a vacation and he felt the need to call us to reassure us that even though the results were positive, there was reason for hope. He said he would be back in the office the following day and he would follow up with another phone call then.

The next day (Wed Oct 1), the Celiac doctor called us from his office at McMaster. He explained what the positive result meant:

  • Katie most likely has CF.
  • There are few, if any, false positives.
  • But, they’d do another test to make sure.
  • He explained that CF isn’t as scary as it once was.
  • Half of CF patients now live into their 30s and beyond.
  • And, he said that the daily regimen of treatments has been key to the increased life span (only 20 years ago, the median life span was only 16 years of age).

Our lives changed in an instant that day. We entered into a period of mourning for a number of days. We were devastated. We were fearful for what this meant for Katie. We were fearful for what it meant for us as a family. Noah, only 19 months older than Katie, would be impacted by this as well.

We surrounded ourselves by those that could offer comfort during those first few days after the diagnosis. Our immediate families, friends and our extended church family became our strength in those first few days and weeks after the diagnosis.

We did our best to put on a brave face though… just two days later, on October 2, we hosted a large family gathering to celebrate Noah’s 3rd birthday. Life had to go on. We couldn’t deprive Noah of joy during this time. So, we did our best to celebrate his birthday on his special day. We did have a good time, but, it was the first time that we had to address having a good time while having sad thoughts always lurking in the background.

Next week, I’ll conclude this series with a couple of posts on the days following the diagnosis.

Thanks for reading and talk to you next week.

Todd

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One thought on “Cystic Diagnosis Part 5: Diagnosis

  1. Todd, your writing is wonderful. It brought tears to my eyes and pain in my heart for your family. Your journey has been very different from ours but with the same outcome. I too want to do a blog for our family so any tips you can send me would be greatly appreciated. I am excited that we will see you guys next weekend and possibly with a new one! Thanks for being so willing to share your story and raise awareness. Steph Whaley

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