A Mother's Message of Courage: Marie-Eve Shares Milan's Story | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

A Mother's Message of Courage: Marie-Eve Shares Milan's Story

My name is Marie-Eve. I’m the mother of 3 boys, Milan (17), Nando (14), and Kirill (12). In early 2021, I’d been noticing marks on my oldest son’s 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. Milan kept telling me he was fine. “I’m okay, mom. Stop worrying.” Then, one morning, he left for the hockey rink, sopping up blood from his 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 his life.

We hadn’t been back to the hospital since he was born on October 31, 2005. But there we were, 15 years later, sitting together and waiting for them to call him 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, I tried to shoot him a few smiles, but it was tearing my heart out. Milan was 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 my son’s bones, and there was nothing I could do to protect him.

They eventually called his name. Milan passed out right after the first blood draw. Everybody rushed in to stabilize him. I couldn’t move. I was paralyzed with fear. My insides were jelly. I wanted to turn back time. To yesterday. To the day he was born. I wanted to bring him 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. Milan was completely run down by then. His platelet count was next to nothing, and he 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. Milan’s 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 him something poisonous? Did we let him swim in a contaminated lake? Was there something in the sunscreen we slathered on him? He was focusing on the why. I was focusing on the how. How to get him out of there alive.
That night, Milan received his first platelet transfusion. He cried, realizing that his hockey season, his school year, and his teenage life were slipping out of his grasp. They told us 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 him. Everything that was part of his existence as a young athlete was suddenly ripped away from him. His eyes lost their spark. His 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 my son’s life hung in the balance… and I’ve never been so scared in all my life.

My only source of comfort was knowing that Milan was going to be cared for by the best medical teams in Montreal: teams that 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 hemato-oncology lineup. They were going to give him 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 the transplant. After six straight days of chemo, 10 small bags of stem cells from a life-saving donor were delivered to Milan’s sterile room, a precious potion whose sole job would be to reboot his immune system. There was his second shot at life.

Throughout Milan’s stay in the hospital, I saw first-hand the amazing care he received with incomparable skill and precision. Amid the horror of his ordeal, there were moments of real beauty in the way he was cared for by the health care teams. No matter how much pain he was in or what kind of a mood, they were sensitive, kind, and responsive to his every need. Knowing he was in such good and compassionate hands made it easier on me. His dad and I weren’t the only ones battling for him on the front lines. He had a whole army of medical experts fighting on his 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. Milan’s 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 and the unconditional support of the other moms that kept me standing.

After 41 days in the hospital, Milan was allowed to come home to recover and be with his brothers. His blood work was slowly getting better, although we did have a rejection scare at the end of summer 2021. He started training again, then skating, and that helped him stay positive. He did all his schooling at home, stuck to a very restrictive post-transplant diet, went in for his weekly check-ups and faithfully took all his meds. Then in March 2022, almost a year to the day of his diagnosis, Milan went back to school in person and returned on the ice to play with his elated teammates. By September 2022, Milan’s life as a student athlete was in full swing again as he left home for a prep school in Ontario, where he could advance his academic and athletic development.

I am so proud of him! His strength of character bowls me over. He inspires me every day. 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 him by my side.

If you are currently weathering this kind of a storm, my best advice is to take it one step at a time. Trust the medical teams (not Dr Google!), rely on your loved ones (if they offer help, take it!), take some time for yourself (self-care is key - you never know how long the storm is going to last). I guarantee you some days will be harder than others, on you and on your child, but calmer winds will come. Stay confident. 

With all my love and courage,