“The good news is that there is a treatment, but you’ve got a long marathon ahead of you.” This was the message that the doctors at Sainte-Justine delivered to Milane’s parents in April 2021. It was greeted with a mix of relief and apprehension. Their six-year-old daughter had been feeling “off” for a while, showing signs of extreme fatigue and odd clementine-sized bruises all over her little body. What follows is a story of courage and family love.
The results of the blood tests and lumbar puncture were clear: Milane had a condition known as bone marrow aplasia. Her body wasn’t making enough blood cells and platelets. A bone marrow transplant was the only treatment option that would cure her.
“We were somewhat relieved that we wouldn’t have to go through the ordeal of leukemia, which was the other possible diagnosis. But not knowing what lied ahead was a frightening prospect. Even though we held on tight to the idea that our daughter had a very good chance at making it through this, there’s no way we could’ve imagined how bumpy the journey would end up being.”
Although the relief they felt was palpable, Milane’s family couldn’t bask in it for long. They had to leap into action to find a bone marrow donor who could save their daughter’s life. The first logical step was to test family members to see if anyone was a compatible match. There were no guarantees.
Had nobody in her family been found eligible, her doctors would’ve turned to the donor registry. But that would’ve taken a lot more time, especially with the pandemic raging on.
And time was something Milane didn’t have. Her condition was growing worse by the day. Her immune system was down for the count, leaving her defenceless to every bug that came around. Her parents had to rush her to the ER at the first sign of a fever. And every time, they feared the worst.
Big brother was there
Fortunately, a match was found in Milane’s older brother, Léo. He was the only one in the family who was a compatible donor. It was a stroke of luck, but one that carried with it some serious implications for an 11-year-old boy.
Léo had to be withdrawn from school and stay isolated as much as he could to avoid contracting any viruses that might delay or compromise the transplantation procedure. A multidisciplinary team of doctors and psychologists rallied together to support him in the process leading up to the surgery.
“Léo agreed to donate his bone marrow without thinking twice, despite the sacrifices he would have to make. The whole thing weighed heavy on our hearts. The school closures during COVID-19 had had a huge impact on us. We felt bad about asking him to shut himself off from everything once again. Saving his sister’s life meant not finishing his school year and missing out on any kind of a social life for the entire pre-op period. I cried a lot over that.”
Léo gave the matter a great deal of thought, but his mind was made up: he wanted to donate his bone marrow. Overnight, their family’s routine became even more challenging. Léo could stay at home in the weeks leading up to the transplant, but Milane was put in strict isolation at the hospital. Not only that, but she was subjected to a battery of invasive tests from head to toe. She also underwent chemotherapy to kill all the diseased cells in her body.
Isabelle and Marc-André were a tag team, going back and forth between the hospital, their home and family and friends’ homes where Léo would stay as a stopgap solution. Everybody was exhausted, but they kept forging ahead.
The sprint to the finish line
The day of the procedure finally arrived. In one operating room, Léo had 70 lumbar punctures to extract the precious stem cells that would then be injected into Milane’s bloodstream in another room. The way Milane explains it, it’s like her brother’s bone marrow rebooted the “blood factory” in her own body so she could get healthy again.
The transplant was a success, but they still had a little further to go before they could put this behind them. It took some time afterwards to make sure Milane’s body would accept the new bone marrow. That meant more weeks in isolation and a new series of antirejection drugs. While this was going on, Léo was sent home to recover.
Despite the additional hurdles, things were finally looking up. Slowly but surely, Milane started to feel better. And as it turns out, the tests showed that the blood in her veins had actually changed from her original B+ to her brother’s A+. It was the best report card ever!
Milane was discharged in the next little while to continue her recovery at home. The family was happy to finally be together again as a whole.
(In French only)
Credit: Video footage recorded by Milane’s father during her stay at Sainte-Justine.
Love conquers all
Milane’s mother has documented the entire experience in a scrapbook for future reference and as a reminder that in the midst of pain and suffering there is always hope.
“It’s almost like a Lonely Planet travel guide for a parent in the hospital. Because when everything is said and done, caring for a sick child is a journey. It’s an adventure that’s full of surprises, and having some expert advice and insights to turn to makes the whole experience even more special.”
Milane and her family are very grateful for the support they received from the healthcare professionals at Sainte-Justine. Which is why they have agreed to serve as ambassadors for the 18th annual Mois des Câlins campaign. This is their way of giving back for everything they have received from the hospital staff and from pediatric research. In so doing, they hope to do their part to build a healthier future for other children and families across Quebec.
Recent medical breakthroughs are having a very real impact on children’s lives, as Milane’s parents can attest. “Not too long ago, bone marrow aplasia was something that was treated with medication, without any promise of a cure. We owe our daughter’s health to the talent and passion of the doctors and scientists who dared to dream big. The least we can do is to pay it forward, so they can continue to grow beyond what they once thought possible.”
Be sure to contribute to the Mois des Câlins campaign by going to your local Jean Coutu and picking up your own Rose Câlins Lip Perfector by Clarins (while supplies last). Help us spread hope and love to the children and families who need it most.
On behalf of Milane and all the young patients just like her, we thank you from the bottom of our hearts! 💙
