Hillary is holding well and we are unbelievably grateful.
This month’s check-up showed an increase in neutrophils from .6 to .7, an increase in platelets from 87 to 93, and a decrease in hemoglobin from 102 to 97.
This keeps her in the Moderate Aplastic Anemia (MAA) category, and best of all, transfusion independent and out of the hospital.
This was a big appointment. The six month mark.
After a thorough discussion with the lead hematologist to review risks and desired outcomes, we agreed with CHEO’s recommendation to continue with the current immunosuppressive therapy treatment for another two months.
Hillary has not yet achieved remission, but she has also not relapsed.
This is the highly delicate balancing game that is Aplastic Anemia. It’s all about staying alive.
Standards for weaning off the cyclosporine medication differ greatly across the globe, and these standards change often as new research emerges. Current protocols recommend beginning to wean now, at six months.
But, not surprisingly, Hillary continues to present as exceptional. Where many others hit a wall, Hillary just keeps jumping the hurdles, remaining off all other medications and avoiding treatments. Her body is tolerating it well and showing signs of blood growth.
It just means more waiting.
While we wait, we continue to advocate for the global stem cell registry.
I can’t believe that the kids and I went door-to-door to ask people to sign up. I can’t believe my brother drove around the entire city for weeks dropping off flyers. I can’t believe over 630 of you showed up that day, and another 400 went online to sign up.
I can’t believe how many were guys.
I can’t believe I didn’t remember that until now.
I can’t believe how desperate this feeling is.
I can’t imagine what it must feel like to not have a match.
Hills has been very busy on Twitter promoting the most recent stem cell drive event on February 13 at the Children’s Hospital of Eastern Ontario (CHEO). Another 86 brave people joined for Sue, a CHEO nurse with Aplastic Anemia whose life was saved from a bone marrow transplant. Our girls made little flags for everyone who got swabbed. CHEO continues to show us why they are a world-class hospital.
The next event is at Notre Dame Catholic High School on March 5. This one is for Dawn and her son Ollie. Dawn reached out to us very early, simply as a mom of two who felt our pain. Who could know that months later, her son Ollie would fall suddenly ill. He is now on the same desperate path to find a stem cell donor to cure his Anaplastic Large Cell Lymphoma, since his sister was not a match.
We are not alone.
We celebrated the six month milestone as we do with every level check — with a modest, healthy, home-cooked meal…together. When you’re this close to the edge on so many different levels, having food, and being able to eat it is…well, I am extremely grateful. I can’t imagine not being able to feed my kids.
Thanks Nana and Baba for not making us have to choose between groceries and bird seed as we buckle down for the long haul. Those who have visited here know it’s like Snow White’s backyard. It’s as if this house was made for this fight, and these birds….they make us feel human.
That’s Alyssa, the night before Hillary’s check-up, losing a tooth. She’s as lovely as ever — calm and conscientious. She’s proof of the resiliency children possess, and we are fiercely proud of her for getting on that school bus every day, never a complaint.
We have worked very hard to not feel sorry for ourselves.
It’s a skill I never had to hone for myself, or my kids, until now.
Waking up with the birds helps.
And so, we push on.