Hello everyone, and welcome to the new monthly blog format! I hope the start of 2021 has been good to you. We are making our way through the Wisconsin winter here, aided by lots of snow and baked treats. Our school district has remained 100% virtual, so our learning pod is continuing to run. The thrill of online school has definitely worn off for the kids, but they're doing their best under the circumstances and are still learning a lot of new things. Still, I can sense their eagerness to be back in the real world again.
Of course we are very excited and eager for vaccines to become available to us. Papa Bear will get his second dose (through his work) on Wednesday of this week, but the rest of us are still waiting. Although people age 65 and over are now eligible in WI, Nona and Opa have to wait until their provider has doses available for them. Finger crossed that will happen sometime in the next month or so. As for me, well, I'm hoping for sometime in the spring or early summer. And no idea when anything would be available for the kids.
Late last month, Lemon did the first visit for the latest clinical study that he is involved in, the one that is testing the use of hyperpolarized xenon for lung imaging by MRI. This was by far the most involved study visit we have ever done--I had no idea exactly how involved it was going to be until the day got underway. We started off in the pulmonary function lab, where Lemon first did the usual pulmonary function test. He's quite used to it and got a couple of good measurements done really quickly. Then, we had to do the lung clearance index test, which is much trickier. Basically Lemon had to make a seal with his mouth around a thing that is kind of like the mouthpiece of a snorkel. Then, he had to breathe normally, without breaking the seal, for several minutes (while wearing a nose clip to make sure he was breathing only through his mouth). For a very fidgety 7-year-old, this is a big challenge. Honestly, I think it would be a little tricky even for a cooperative adult. So, that took numerous attempts to get a couple of good measurements, but we got there eventually.
Then, we walked across the hospital campus to the building where the MRI was. Due to COVID-19 restrictions, I couldn't actually go back to the MRI room with Lemon, so the nurses whisked him away and he had to handle
the whole thing himself. He got lots of compliments on his behavior, which is impressive especially given that each scan took almost an hour, and he had to breathe in the hyperpolarized xenon which made him feel a little dizzy. In another sign of his advancing maturity, he was offered his choice of either a truck or a Green Bay Packers scarf from the prize back, and he chose the scarf. Who is this child?!?
While we were at the hospital, I asked the doctor there if there was any update on the approval for Trikafta, since Vertex had signaled earlier that they were planning to file with the FDA before the end of 2020. The doctor said his latest information was that they had delayed the filing, and were now planning to put in the application in the second quarter of this year, which was very disappointing news. Imagine my surprise and delight, then, when Vertext announced just a few days later that they had filed, with an anticipated approval date of June 8 of this year! I am so excited, I can't believe that the big day is now so close. And I am so hopeful now that Lemon can be on this amazing medication before going back to school next fall, which will be huge for our peace of mind especially if there isn't a COVID vaccine available for kids yet.
So, all in all, I would say 2021 is off to a pretty good start, and I hope all these favorable trends continue. Like all of you, I am feeling very ready to put 2020 further and further into the rearview mirror. Let's see what February has in store.
