My Dear Sweet Boy,
I’d been noticing marks on your body — undeniably and inexplicably large bruises — as big as full moons. My mind would spin in a million different directions, trying to convince myself nothing was amiss. And you kept telling me you were fine. “I’m okay, mom. Stop worrying.”
Then, one morning, you left for the hockey rink, sopping up blood from your nose and gums, for no apparent reason. It was March 11, 2021. We didn’t know it yet, but that day would mark a turning point in your life.
We hadn’t been back to Sainte-Justine since you were born on October 31, 2005. But there we were, 15 years later, sitting together and waiting for them to call you in for a bone marrow aspiration. The hematology-oncology department smelled different from the maternity ward on the fourth floor. There was no new baby smell to drink in here. It was the smell of children fighting to survive.
As we waited for what seemed like an eternity, we looked at the pictures on the wall, pictures of all the children who had been treated here. I couldn’t look at their eyes. The fear of seeing your face on that wall was welling up inside of me. I tried to shoot you a smile, but it was tearing my heart out. You were looking at me for a spark of hope, like someone searching a flight attendant’s gaze for reassurance when their airplane hits turbulence. I felt like all my maternal skills had drained away from me. I had no control over anything anymore. They were about to go digging into your bones, and there was nothing I could do to protect you.
They eventually called your name. You passed out right after the first blood draw. Everybody rushed in to stabilize you. I couldn’t move. I was paralyzed with fear. My insides were jelly. I wanted to turn back time. To yesterday. To the day you were born. I wanted to bring you back into this world and find a way to avoid this whole experience. I knew deep down the aspiration was going to reveal something terrible. And I was petrified.
The results came back late that afternoon. You were completely run down by then. Your platelet count was next to nothing, and you had the hemoglobin level of a vampire in rehab. A bunch of words spilled out of the doctor’s mouth — severe, aplastic, anemia, bone marrow failure, transfusions, transplant, isolation. I heard them all, but my brain refused to process them. Your dad was listening in over the phone, pandemic restrictions being what they were at that point. His voice was the voice of a father who felt utterly powerless. He was trying to figure out what we had done wrong. Had we fed you something poisonous? Did we let you swim in a contaminated lake? Was there something in the sunscreen we slathered on you? He was focusing on the why. I was focusing on the how. How to get you out of here alive.
That night, you received your first platelet transfusion. You cried, realizing that your hockey season, your school year and your teenage life were slipping out of your grasp. They told you that, even if everything went according to plan, this aplastic nightmare could last for more than a year. I would’ve given anything to switch places with you. Everything that was part of your existence as a young athlete was suddenly ripped away from you. Your eyes lost their spark. Your anger went silent.
That first night in the hospital, I didn’t sleep a wink. I tried to stop myself from fixating on all the bad things that might happen. Through my tears, I couldn’t help thinking that your life hung in the balance… and I’ve never been so scared in all my life.
My only source of comfort was knowing that Sainte-Justine was the best place you could be. The medical teams are world-famous for scoring against all the awful stuff that can stake a claim inside a young body. So I hung on to that for dear life. I braced myself and put trust in the Crosbys, the McDavids and the Matthews in the hematology and oncology lineup at the Charles-Bruneau cancer centre. Sainte-Justine is where you came into the world, and it’s where you were going to get a second chance. There was no other way.
That second chance finally came on May 18, 2021. After weeks of blood tests, transfusions and appointments with every “ology” imaginable — hematology, oncology, immunology, radiology, cardiology, dermatology, you name it — the next big step was finally in sight: the day of your transplant. After six straight days of chemo, 10 small bags of stem cells from a life-saving donor were delivered to your sterile room, a precious potion whose sole job would be to reboot your immune system. You had your second shot at life.
Teaming up with the Sainte-Justine community
Throughout your stay at Sainte-Justine, I saw first-hand the amazing care you received with incomparable skill and precision. Amid the horror of your ordeal, there were moments of real beauty in the way you were cared for by the health care teams. No matter how much pain you were in or what kind of a mood, they were sensitive, kind, and responsive to your every need. Knowing you were in such good and compassionate hands made it easier on me. Your dad and I weren’t the only ones battling for you on the front lines. You had a whole army of medical experts fighting on your side, whose hearts were as big as their arsenals. I could breathe. I could let my guard down. The funny thing is, I actually started to grow fond of that place. There were other mothers there who were going through the same thing. Our children weren’t facing off against the same opponent, but we were playing on the same team, at least for a time. Your composure and resilience may have gotten me through the first stages of coming to terms with aplastic anemia, but it was the comfort and reassurance of the caregivers at Sainte-Justine and the unconditional support of the other moms that kept me standing.
Giving back every month
As parents, we can’t live our lives worried that our child might come down with some horrible disease. But that is the unexpected and unfair reality for far too many families. Illness strikes wherever, whenever and whomever it pleases. Even perfectly healthy children like you. In the months and years to come, more children in Quebec will get a diagnosis that will change their lives, and their parents’ lives, in unimaginable ways. But by donating to Sainte-Justine, at whatever level we can, we can actually do something. We can take the offensive. The way I see it, giving monthly is the best way to make sure that there will continue to be funding in place so that other children get the same excellent care that you received and so that leading-edge research projects can move forward. Do you realize just how critical research is to saving lives? The first bone marrow transplants to treat cases of aplastic anemia like yours date back to the 1980s. That’s only 40 years ago! You and I have seen with our own eyes the power that people’s donations have to make life a little easier for sick children. I hope that your story will inspire new donors to opt for monthly donations in order to accelerate research, to find new and better treatments, and to make incurable diseases a thing of the past.
The calm after the storm
After 41 days in the hospital, they let you go home to recover and be with your brothers. Your blood work was slowly getting better, although we did have a rejection scare at the end of summer 2021. You started training again, then skating, and that helped you stay positive. You did all your schooling at home, stuck to a very restrictive post-transplant diet, went in for your weekly check-ups and faithfully took all your meds. Then in March 2022, almost a year to the day of your diagnosis, you went back to school in person and returned on the ice to play with your elated teammates. By September 2022, your life as a student athlete was in full swing again as you left home for a prep school in Ontario, where you could advance your academic and athletic development.
I am so proud of you my love! Your strength of character bowls me over. You inspire me every day, you know? Especially the days when I find it hard to get on with my life, after keeping so much fear, panic and trauma inside for so long. I need a little bench time myself so I can take a breather and focus on my own healing. But I’m ready to trust life again, with you by my side.
Because, unfortunately, you won’t be the last…
I hope that other moms who will have to weather this kind of a storm will have a child who does it as bravely as you. I hope they will be able to celebrate, like we have, knowing they have Sainte-Justine and the Foundation to thank. And I hope they can wrap their arms around the child they love with all their heart and never let go.
Love,
Mom xxx
Marie-Eve Carrier
Mother and monthly donor
*The remarks expressed in this article reflect the opinion solely of the author and should not be considered as representative of the CHU Sainte-Justine Foundation.
Give from the heart every month to support Sainte-Justine
The CHU Sainte-Justine Foundation and Pierre Thabet have teamed up to expand our circle of monthly donors. Monthly donors are absolutely essential to the Foundation’s mission. They are the backbone of our operations, making it possible to maximize our support for Sainte-Justine, no matter what else is going on in the world.
By joining our monthly giving community, you will be ensuring that the Foundation has access to a steady, reliable source of revenue so it can empower Sainte-Justine to leverage opportunities to create a better future for children like Milan. This option lets you spread your contribution out over the year — and you can change, suspend or cancel your donation at any time.
Thank you for showing your love for Sainte-Justine each and every month. ♥
