It has been seven weeks since our last update, and things continue to improve for Hillary as she battles this rare blood disorder called Aplastic Anemia. Thank you for your continued inquiry and prayer.
Please take comfort in knowing that Hillary has achieved another major win. Her last monthly blood test revealed an increase in neutrophils from 0.8 to 1.3.
Finally. Over 1.0 for the first time. We screamed out the windows of our electric car on the way home. Her hemoglobin rose to 104 and her platelets rose to 140. She presented just below the normal threshold on all three cell lines.
I’ve been hesitant to share this positive development with everyone. We haven’t even spoken with a doctor about it yet.
We’ve been quiet on Twitter again.
This is the calm before the storm.
We are at a critical time point in Hillary’s care. We have numerous questions for our lead hematologist when we go in this week — some of the questions simply don’t have answers. If her normo-cellular bone marrow is now operating at 60%, could we not harvest it and give it right back to her if she needs it in the transplant phase later? Her stem cells show no genetic abnormality. Her T-cells were merely overactive when she was requiring blood transfusions.
No matter what, we simply must proceed with ceasing her medication on December 24 to determine if the treatment was a success or a failure. I hope there is a free hospital bed with abundant blood products under the Christmas tree if it doesn’t quite work out…maybe with some of those hard-to-find, short shelf-life platelets wrapped in a bow.
She already needs her two front teeth. She lost her top front four this past month, and she looks unbearably cute. Last night before bed, she said she thinks the cure for her condition is happiness. I thought we were really happy before. I don’t know where she is looking.
Her treatment is working. Her levels are rising.
She still has nap-inducing-headaches twice per week, but her nosebleeds have stopped entirely. She looks well and eats well, but sleeps too soundly. We’re treating an ailment on her foot which I hope resolves in my healing hands soon, and there are other things. I don’t share it all. It’s private. I can see it when she walks. Sense it when she sleeps.
Most nights, I long for this world to implode as I stare up at the night sky so I don’t have to experience losing her to this lingering illness. I make wishes on water and long for Father Peter’s soothing voice to fall upon my ears. I send constant condolences to parents who are experiencing what I never want to, and offer advice to families trying to boost the stem cell registry so their child can live. This week, my heart aches for Isabella, Maverick, Melissa, Evie, and Brantley, and their families.
All five of their stories are truly unbelievable and unbearable.
I can’t look away. I have to watch and learn.
During the day, I pray that life is just a simulation — all the glitching talking heads and hilarious coincidences — and once I acquire the cure in my inventory (those elusive stem cells), I will finally skip to the next level…or plane of existence…or vibration. If it IS all a simulation, COVID19 was a major error. I wanted the whole world to know what it was like to live in isolation, but not like this. Not with this level of miscommunication and misinformation.
But my children are indeed real, and I’m supposed to wake up and operate on faith — set an uplifting, hopeful, moral tone within my household at all times.
Model a healthy mindset.
A morning dove hit the bedroom window during breakfast on the first day of school. The girls and I stepped out back and watched it take its last breath.
What followed was the best first day of school ever and another wish come true. We have nothing but the deepest gratitude for the OCSB Virtual Academy and what it has done for Hillary who missed an entire grade and a half of school. Both girls are learning. Getting frustrated. Recovering. Catching up. Socializing. Dreaming. Flourishing. Online.
In fact, virtual school has had an incredibly positive impact on the wellness of this entire family in such a short amount of time. We feel like the luckiest people on Earth. So many sacrifices are being made so Hillary can stay well.
Nine baby doves currently visit together each morning. I make sure there is enough food.
People continue to donate blood in Hillary’s honour to help with the critical shortage. Daddy gave last week. Uncle Denny gave today. I give again this month. Hillary makes two YouTube videos a day, and never forgets to mention how easy it is to #getswabbed, #giveblood, and donate to #makeawish. It’s now our official obligation to assist these causes, and we are honoured.
We also realize at this point that we are a bit of a social experiment. If Hillary were to contract COVID under the precautionary measures we’ve had in place for the last 18 months, I’d sound the alarm on the current epidemiology. Hillary has gone six seasons without illness or infection, and that’s without an immune system, with a sister in school…while sucking her thumb.
It’s not fear that drives me. It’s not control.
And I really don’t suffer fools well.
Like last Thanksgiving, when a relative held her mask off her face the whole time so she could talk to Hillary in my sterile, purified living room. Or last Christmas, when I sent our regrets by email and received the insensitive “family is important” response. That was the last time I bothered to explain myself by email or text. Those shallow experiences only made my resolve stronger. I never said anyone couldn’t visit — I simply insisted it had to be on my terms. I think that’s perfectly fair.
Hillary doesn’t deserve to be at risk while we decide what’s careful enough for her.
Just ask her. She is opinionated, well spoken, and educated on the topic. No shyness there.
We’ve had zero exposure to any indoor environments other than our home. We attend monthly hospital appointments wearing masks, visors, and behave carefully with frequent handwashing.
No haircuts. No patios. No stores. No exceptions. We get online groceries, do curbside pick-up, and masked drive-thru only. We wipe down our groceries but not all of them, and not all of the time. We stick with the same providers — always Moncion’s Grocer. We change our furnace filter every month and run an air purifier and dehumidifier — never a humidifier. Car windows stay up in town. Public washrooms are banned. We have window visitors but not backyard gatherings.
We clean a lot. Daily walks are mostly masked for Hillary to avoid dust from vehicles, dirt, construction debris, fungus, campfire smoke, and people. Her choice. We wear our masks at the same time for her. Our choice. We look back often. We always say hello and wave. Damp, windy days are met with extra caution regarding people proximity. We order Gabriel’s Pizza for Ollie. We pay online. We dress warmly to avoid catching the sniffles.
We skim the research, drill down where we can, and take the strongest advice. It affects every part of our very existence.
As if I’d take a relaxed approach. She’s one in a million.
We’ve adopted a clear stance as we face down the threat of COVID. We’re going to meet this beast head on. She’s gonna tell her T-cells to fight. We know we can avoid getting sick if we can control our surroundings. We know we have to have the right people around us to do that.
But our bubble — please don’t burst it.
The hospitals…please keep them open.
There are people IN this….and there are people completely out of THIS.
Our girls have friends in school. Playing competitive hockey. Swimming.
We have family providing essential services. Dining on patios. Hugging at birthdays.
Our colleagues are teaching in schools. Saving children from the darkest homes.
We go to hospital appointments. Open veins and pray.
This is where WE fall in the circle of life at THIS point in time. It’s certainly not where I expected to be. I don’t think I like it very much. But it’s from this stance that we will continue to present our best selves to ensure Hillary’s survival. No matter how severe the mental anguish feels from fear of the unknown, the only option is to completely sacrifice everything to make sure she lives.
It’s coming for her. During the darkest winter in human history. I’m not allowed to say it to anyone.
The birds know it. The baby cardinals are here too often.
Thank you for wearing your uncomfortable mask. For staying in. For protecting Hillary.
Please stay well, and stay with us.