Today we are in Pittsburgh for Cannon's clinical trial check in. It's been about 2 1/2 years since he's been on drug. Last time we were here - he had grown 5 inches in a year. Incredible. His motor skills have continued to improve and he has seen increased muscle tone and strength. This year, he played lacrosse with his second grade team!
We started in Ophthalmology - Here he is having his eye exam. For the first time, Cannon has some calcium deposits in his eyes. Very slight but still there none the less. We are going to continue to monitor. These deposits are somewhat common with HPP patients but since this is an investigational drug, we are not sure whether the enzyme replacement therapy reaches every part of the body - so this is interesting to note that he now has deposits where he hasn't had them before. Cannon does not complain about them or even feel them so that's good. Also for the first time, the doctor noted an increase in optic nerve pressure which can be an indication of papilledema. We are going to have an MRI next week to be safe. Both of these symptoms are felt to be indicative of underlying disease and not necessarily related to the drug.
Then we went to radiology - where we had our renal ultrasound.
Then off to bloodwoork where he was a brave trooper. Then we met with Dr. Vockley, the PI of the trial site here in Pittsburgh. He did an exam of Cannon and measurements. In the past 6 months - he's gained 4 pounds and grew 1.5 inches (for our European friends, that's 2 kg and 4 centimeters!). In fact, he's back on the growth charts again in the 5th percentile. Here's his growth chart.
It was cool to see how fast he can run now. Remember, Cannon did not walk until he was 4 years old! So to even watch him run still makes me smile.
Next we head to radiology where we will look at his bones to see how they continue to grow and how they are impacted by the ERT (enzyme replacement therapy). Cannon is such a huge trooper during these visits. Doesn't complain except when he's hungry or tired. I'm so proud of him and just hope that he continues to do well! I'll try to capture a message from him soon.
Thank you again for your prayers, love and support and for following us over to our new blog! :)
