We met with CHEO specialists this week regarding Hillary’s progress battling this rare disorder. We were all pretty nervous, and I want to acknowledge the Social Workers at CHEO for supporting us on this journey.

Hillary had some bloodwork done, along with another two hour IV infusion of pentamidine to prevent pneumonia. But she remains transfusion independent. This is wonderful for her. Her blood production levels continue to show promise. In two weeks, her hemoglobin went from 89 to 91, platelets grew from 55 to 63, but her neutrophils fell from .6 to .4.

Her strange PNH clone remains the same at 3%, and her cyclosporine medication level has fallen below the therapeutic threshold, so we have to get that number back up as a matter of priority. Clearly, we are not out of the woods by any means, but this is promising at 3.5 months post ATG treatment, nevertheless. The transplant centre at SickKids in Toronto continues to monitor Hillary and is also pleased with the response thus far.

Since her neutrophils have not made the climb into the normal range (the white blood cells to fight off infection) we remain in isolation. We still get outside every single day for fresh air, and plan strategic outings (while wearing masks) to minimize germs. There’s nothing like being the very first one in the library doors. To balance it all out, we stay social using Google Hangouts and FaceTime. We think it’s a good strategy in this day in age, and it’s working beautifully.

We head back to CHEO back in three weeks, the longest stretch of time without measuring her blood levels. We now strive for normal levels at the six-month mark — February. We continue to be so grateful of the moderate presentation of this disease. The complications others are experiencing with this disorder are unbearable and too triggering to share. 

Life continues to be busy and challenging for us, but it is for everyone else. Everyone experiences health challenges, time conflicts, and life changes. And some people are doing it completely alone, or often without the support of their family.

We firmly believe that the love that surrounds Hillary, from all over the world, helps lift and carry Hillary above our heads while she heals.

And so we press on and remain vigilant.

The rest can wait.

Thank you for your continued prayers.