10/22/2023
Warning—VERY long post below! 😅
Here’s the latest of Miss Thea! Her next attempt for the hip surgery was scheduled to be October 24, but as you all can guess, we’ve had to postpone AGAIN. This time, for 2 years, because….THEA HAS ENTERED A CLINICAL TRIAL!!
How this all unfolded felt a little bit like fate, kind of crazy.
First off, if she were to have gotten the surgery over the summer then it would have disqualified her from the study. There were many other requirements to join this trial as, one of which was a minimum weight of 15 kg. At the screening appointment she weighed in at 15.2 kg 😅 Her doctor and I thought she would never even get close to this weight back at her last Neuro appointment in May by the time the clinical trial participant spots were all filled. Then I received an email at the beginning of August from her stating she was off work that day, but just happened to check out the latest on Thea’s chart and noticed she was very close to the weight minimum for the trial. If we wanted to try and get her in, we needed to act fast as she knew they planned to close acceptance within the next couple weeks.
We got her in for the screening appointment that week and went through 6 hours of different phases of testing. It was a long exhausting day to say the least. And not even an hour after she was submitted, they closed the portal to accept any more participants! She literally JUST made it in!
Then we were told that we had to remain fever free from that day until her baseline visit in two weeks. 🫣🫠 The chances of that happening were pretty much impossible! Pre-k is chalked full of all the germs, not to mention all the illnesses Frankie shares with her. We decided to keep her quarantined until the baseline appointment, as this trial could be the chance of a lifetime for her! Sister Frankie went and stayed with grandparents for those 2 weeks and thank goodness she did because she caught hand, foot, and mouth disease.
We made it to the baseline visit without throwing a fever though! A true miracle! She received her first dose of drug at this appointment. She receives 1 subcutaneous injection here at home each week for the next 2 years. See my next post for more information on this clinical trial!
