It has been just over one month since our last update and six weeks since Hillary last took her medicine.
I think Hillary has been gifted the miracle we’ve all been praying for, everyone.
She is doing exceptionally well with stable blood levels.
Hematologists at CHEO have been monitoring a little closer since stopping her immunosuppressive therapy — with visits every two weeks instead of monthly — and the last two blood tests showed stable levels.
With Aplastic Anemia, it’s all about the levels.
Her hemoglobin hovered at 117, 113, 118; platelets at 145, 141, 149; and neutrophils at 1.2, 1.3, 1.2. We were fully expecting to see a significant dip on at least one of the cell lines, but are beyond overjoyed to report that her levels are holding nicely — completely on their own.
I had to wait for at least two blood tests to share her progress with you.
I had to make sure there was a positive trend. Plus, things were a little shaky there for a while and… we really weren’t sure. Hillary had three virtual ER appointments in the last three weeks to address minor infections. I went from thinking she had mucor lesions in her nose from crashed neutrophils to a persistent case of impetigo, treated with prescription antibiotics.
Don’t Google it.
All three issues are resolving thanks to early intervention, her headaches are decreasing in frequency and intensity, and she is ramping up with exercise and nutrition/supplements. We feel it will take at least six months to see all of the side-effects subside as her body detoxifies from the cyclosporin. She already looks and feels different.
We continue to work hard, pray, and give thanks.
But each day is truly a mystery. Today is a headache day. We can’t ever give up.
Our gratitude for those donating blood and blood products is immeasurable. Platelet growth is a strong (if not primary) indicator of recovery with this particular blood condition. Back when she was in the very severe category (VSAA), Hillary needed platelet transfusions daily — and platelets have a short shelf life of seven days.
Local blood donors — our neighbours — literally saved Hillary’s life.
Two days before her appointment last week, a flock of 30 evening grosbeaks stopped by the backyard feeder before virtual school. It was like a flash of light. We’ve lived here for over a decade and never seen birds like this — they’re on the Ontario Species at Risk List. The bright yellow songbirds with white wing-bands sounded incredible and mingled closely with the cardinals, blue jays, and doves.
I don’t know what’s next. Auto-immune conditions such as these most often come in pairs. I’ll always be waiting for the other shoe to drop. We go back in late January for a blood test. We might even wait three months.
We might have to wait.
The grosbeaks left after her CHEO appointment and haven’t been back since.
They were a very special gift and it snowed a pretty snow while they were here and I hope they return. I wake before sunrise each day to put out fresh sunflower seeds, and I think I can hear one nearby.
Please continue to pray that Hillary is one of the lucky 30% who achieves lifelong remission from this mysterious blood condition that has taught us all so much.
I believe all of our lessons have been very different.
I hope one of them has been how great sacrifice can lead to something greater. In our case, it’s all been for Hillary’s survival.
We are extremely humbled by the support of our neighbours this Christmas. We feel safe and sheltered in Ottawa. Our hearts and minds are overloaded with gratitude for our humble home and circumstances, the nurses and doctors at CHEO who saved Hillary, the teachers and caregivers who are ever-present, and essential service heroes working similar miracles, and the turkey which will be dropped at our door on Christmas Eve by loving family.
We attend church in bed with warm cloths on heads, and sleep by the digital flickering light of our homemade Advent wreath. There is Peace, Love, and Joy here.
You have provided the Hope.
To quote Dickens’ all-too-relatable-now Tiny Tim blessing this December 23, with the utmost sincerity from our sweet Hillary to all of you:
“God bless us, every one.”