It has been 10 months since Hillary began living in isolation — the only way to stay completely safe as she battles this rare blood disorder called Aplastic Anemia.
Her monthly blood test showed a rise in platelets from 97 to 100 — a number we went to bed dreaming of the night before. But, her neutrophils fell from .7 to .6 and her hemoglobin also fell for the third month in a row from 107, to 98, to 93.
Still, this is very promising.
Hillary continues to thrive at home. This morning, she woke up with rosy cheeks and a big smile. She really does look better. Different, but better. Each day has its own set of health challenges, but nothing we can’t meet and treat with time, patience, and the right supplies.
Thank you for your continued support and inquiry.
Please think of her as very happy and know that she is well taken care of. She thinks it’s just absolutely fantastic that the world is staying home, just like her.
Hillary and I go back (alone) to CHEO just before Easter for another blood level check, her pentamidine medication infusion by IV (to prevent bacterial pneumonia, not viral), and a serious discussion with our team of specialists. Please know that Hillary’s lungs have always been incredibly strong and healthy. Hold that close to you.
Preparing for our next appointment is intense. We are comforted by the measures put into place thus far by CHEO. They are doing an exceptional job.
We continue to watch the unfolding of the current global pandemic, COVID-19. Hillary falls within a vulnerable demographic — an immunocompromised patient with a hematologic disorder — but for bacterial and fungal infections as well as viral. Any one of these three infections would put her in danger, at any time.
Imagine being in isolation, and then imagine being in isolation within that isolation.
Yes, it feels a little perilous at this time. (I write as I laugh maniacally)
The blood bank is running low. If her oxygen goes below 70, she will need another blood transfusion. Blood has a shelf life.
Hillary is two months overdue with her immunosuppressive treatment plan, and it’s beginning to show a slight increase in liver, kidney, and ferritin levels.
We’re not yet sure what direction will be recommended to us by CHEO. It’s a complex decision. But, her prolonged neutropenia (lack of white blood cells) is concerning, especially now.
Stem cell transplants from unrelated donors have been postponed all over the world…some proceeding, and some being switched to half-matched sibling transplants instead.
Most likely, we will do some more waiting while continuing our effort to keep her infection-free and out of the hospital. We just have to keep doing what we’ve been doing.
And yes, social distancing works.
You may be branded an alarmist. It will impact the life you thought you knew. You will see the selfishness — and selflessness — of others in ways that you were indifferent to before.
I feel so proud to have been persistent with Hillary’s care.
So many times we sat in the parking lot weighing the risks of going in.
There was always a better choice.
The better choice is life.
In a way, what is happening here is what I’ve always dreamed of. To be together — just us, our family unit — without obligation except to better ourselves while enjoying, and protecting, God’s creation. I just can’t believe we are dangling so precariously close to the edge.
I am not going to preach. All of the things I wanted to say, the lessons I wanted to bestow, the changes I wanted to fight for, the resources I longed for, the financial help we needed….the world is doing it for us…..like footprints in the sand.
Thank you to the angels that fly by on Twitter every hour from people donating blood to Canadian Blood Services (the safest place to be right now), working the front lines in the hospital (like my hero neighbour Michelle), and promoting ways to #FlattenTheCurve. Please keep up the good work doing this in the most reasonable ways you can. My only brother and his beautiful wife are both uniquely essential service….and I have no words.
This has not weakened us. It has unified us. We are strong.
Please dream of the number 120 for Hillary.
Check out Hillary on 1310 News with host Sam Laprade, where Hills talks about making sure others have beans and lettuce during this difficult time. Click here, and then select the March 20, 2020.
At her last appointment, Hills met Katie Perry, a CHEO superstar.