It has been three months since our last update. Hillary had her regular home blood test and virtual appointment with CHEO two weeks ago. The results were so good, our next appointment will be in six months. This photo is of her today.
Hillary’s hemoglobin grew to 121, her platelets grew to a record 256, and her neutrophils grew to 2.3. Okay, the neuts came down by 0.1 but who’s counting! Hillary jumped for joy in the snow.
Our appointment with CHEO was fruitful with referrals to a Neurologist as well as THE BEST Ear, Nose, and Throat (ENT) Specialist in Ottawa. We will be pursuing both in-person appointments (with accommodations) to find better solutions for the pain in her head, stomach, and throat.
Hillary’s PNH clone remains unchecked. It may be growing but there would be no treatment available at this time anyways.
We were encouraged not to delay with Hillary’s fourth COVID vaccination as an immunocompromised child under 12. The doctors never bring it up during appointments (to be respectful of choice, I think) but we are always sure to open up the discussion. We continue to shield for Hillary and maintain contact with our life-saving Pharmacist.
We discussed Hillary’s frequent use of Tylenol suspension liquid. Studies advise against Advil for Aplastic Anemia patients and I’m trying to ease her severe headaches while preserving her liver. I’m running out of medicine again. Her head hurts so much she vomits and falls immediately asleep.
This reality is brutal.
I want very much to pretend this is not happening.
Four years in, I am able to pinpoint precisely what has crippled me since this all began. What changes my daily reality into something totally unrecognizable.
It’s the chronic fear.
Fear of infection.
Fear of injury.
Fear of death.
Fear of access to care.
Fear of breach of trust.
Fear of a Bone Marrow Transplant (BMT).
Not a stem cell transplant.
From a stranger we don’t know exists.
For my young child.
During an unchecked pandemic.
When the fear doesn’t bring me to my literal knees, it makes me uneasy enough to work harder.
Yesterday, our family signed the consent forms to participate in the University of Manitoba’s study: Making Visible the Life Stories of Families of Children who are Immunocompromised during COVID-19, funded by the Canadian Institute of Health Research (CIHR). (permission to share approved)
This four-year study will bring about sensitive issues and painful memories as we face our true reality using various mediums, but as soon as we heard the title of the study, we knew we could not say no.
This study defines us. It validates our existence. I mean, doesn’t this prove that we are indeed fighting for accommodations to ensure the survival of our child with a rare Immune System Condition (ISC)? I can’t wait to share with them in confidence all of the things I can’t write here.
Hillary just wants the $30 honorarium. She gets a little more for making her own video and she wants to start tomorrow. She says she’ll use CapCut. I hope this is cathartic for her. I hope it leads to change.
I’ve requested through the CHEO Foundation a fundraiser for the purchase of new hematology equipment which would revolutionize the way in which pediatric patients are served.
When Hillary arrived at St. Justine’s Children’s Hospital in Montreal for a blood test, they pricked her index finger and gave her a sticker. No waiting for a room, no waiting for a nurse to draw the blood intravenously through the inside elbow, no room changes.
The result of the ONE drop of blood is a Complete Blood Count (CBC) – a full blood panel showing red blood cells (hemoglobin), white blood cells (neutrophils), and platelets. Not only does this alleviate pressure on staffing, space, and costs across several departments — it’s easier on the kid.
Way easier. For babies. Emergencies. Parents. Exhausted oncology patients. Hillary.
I don’t know if CHEO can say yes (as there is a tender involved) or if I can even raise this money, but I can’t help but think of the 64 billionaires currently living in Canada. Why can’t one of them invest in this right now?
I’m going to try.
We’ve respected society’s every effort while hiding in isolation. We’ve been witness to your persistence, determination, and strength to make the most out of life. But, we really need the same respect back. Respect for OUR persistence to protect our vulnerable child. Respect for OUR decision to adapt our lifestyle. Respect for OUR accommodation needs.
I drafted a plan for a service called COMPED, where businesses sign up to provide comped (as in reCOMPensed) goods and services to immunoCOMPromised people. Since Hillary can’t access a Senators game safely, can she at least get a pizza coupon on game nights? If there’s no place for the sick at events in our great city, can vulnerable citizens at least get a T-shirt? Can customers who are dying get a discount on the grocery pick up fees?
A discount won’t mean a thing if her match isn’t there.
Our #StudentsSavingLives program — to have high school students gain community service hours towards their high school diploma by engaging in stem cell awareness activities — is still very much an active program throughout Canada, but the big Fall 2023 launch didn’t happen as I expected, and I’m not sending out enough emails as I should. Canadian Blood Services (CBS) recently underwent some organizational changes but they assure me that the program is still making a difference and promotion remains a priority to grow the registry.
Little girls are waiting right now for their match to survive.
The Canadian stem cell registry was inspired by one little girl.
My little girl wants to keep helping.
I have cried every single day since this began. I am absolutely crushed by Hillary’s diagnosis. I am no longer the happy person I used to be.
No longer the leader at work.
The first responder on the scene.
The volunteer with a smile.
Still, I would say half of my tears come from the pain of experiencing joy.
The joy of seeing 40 Grade 2-3 students and staff from St. Benedict School show up in a big yellow school bus to sing Christmas Carols to Hillary in the falling snow. They all fit right in front of our front window. To see Hillary fill up with the love from other children, lifting her up in prayer and song. We are so grateful to all those who participated. (parental consent provided for all students in video)
The joy of visiting the CHEO Celebration Bell, which has now been installed on CHEO grounds. You can see it on the left when you drive up to the front entrance and it’s surrounded by beautiful trees and benches for seating. Hillary’s first words were, “Has a child rang it yet?” I posted a photo on Twitter and the first comment was from a mother whose young son just had heart surgery and they want to ring it in the Spring. Our gratitude is immeasurable.
The joy that permeates our house thanks to Blessed Carlo Virtual School. Hillary sings the Our Father so beautifully every morning. She has a group of seven friends from her Grade 4 class this year, and she talks to them all day, every day, all weekend, every weekend. Hillary is rarely accessible. Don’t tell her teachers, but she runs a second Google Meet all day for her friends to stay connected during class. We get to hear the laughter of diverse children all day in our little house and it’s one of our biggest blessings.
The Joy that is Hillary.
Hillary is the happiest she’s ever been. Again. She’s been feeling very well for several weeks now. She has two more loose baby teeth. She continues to sing the soundtrack to our lives. She thinks her new Beta fish has a rare condition and she’s teaching him how to breathe. She tells her friends she loves them every day.
Hillary has asked to be buried under a willow tree.
She has lots of laughs but only one is real.
She blows a kiss every single time she leaves the room.
I suspect the joy which awaits Hillary will be the most painful of all.
Sending her out into this world to take her chances for the sake of being included — putting her young life into the hands of those around her. The pure joy she will feel from the rich experiences and interactions…
…until it all stops, and our world crumbles into ruins.
Hillary has zero desire to try and integrate right now.
Her family, friends, and teachers rotate through illnesses as she observes.
She is asking for continued protection.
She doesn’t want to get sick.
She can’t afford to ignore the truth of her rare condition.
She isn’t ready to surrender.
If I get to spend every last waking minute serving Hillary’s wishes to live, it will be my honour.
The world around us keeps changing but our resolve does not.