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.
I pray for her every day. Stay positive. God bless all of you.
I love hearing these positive increases in her numbers. It makes my day! So glad to get the updates. continuing prayers for all of you!
So happy to hear this great news! Be assured of my prayers for all of you. I realize that this is a very scary and unsettling time for all of you. Good to hear that you are able to get out and about with her. I lost a niece to this disease at 13, it was 31 years ago. I know technology has improved since then. Have a very Merry Christmas and a healthier, Happy New Year!🎄🌈. I am Elaine McHale’s sisters-in-law, she keeps me updated. JoAnne Andrechek’s first cousin as well.
Greetings from Winnipeg!
Your update is promising and we are pleased to hear any progress!
Keep up the fight and the faith, we will keep praying!
Our love to you all!
💞🙏💞🙏💞🙏💞🙏💞
Thanks for sharing your update! Your numbers sound good but what’s even better is when they start spacing out your return appointments. That’s when you know that you are doing better. Sending good thoughts and wishes.
I remember being fearful of people who wore medical masks in public. I thought they were infectious and I stayed away. Many people don’t know that the masks are there for their protection…not yours. An understandable mistake when you don’t know any better.
Years later at a showing of The Wizard of Oz at the NAC, I wore a mask to protect myself from germs after a chemo treatment. I think the poor audience was more scared of me than the wicked witch of the west! Hahaha.
Brave, beautiful souls, stay protected. I actually just packed some masks for some upcoming flights. Better safe than sorry, I say. God bless you.
Stay strong, Kelly! Praying for you all everyday. So happy to hear this news. God bless your brave and fierce little girl! Xox