The Fragile Joy of Togetherness for Christmas

At this time last year, Roxanne’s eyes would swim with tears whenever she heard Christmas music. She would cry, in tune with bells and chimes. “My heart was not in it at all.” A month earlier, her seven-year-old son Mathys had been diagnosed with acute lymphoblastic leukemia. The family was not over the shock yet, still trying to find its bearings with worries at the forefront. Roxanne and her husband were staying strong—for their four young children, for their clan.

Overcoming the Shock

In August 2020, Mathys began to experience pain in his legs and back. His parents initially believed he was going through a growth spurt. But the pain persisted and, in September, was joined by repeated episodes of fever. When Mathys started to suffer from fatigue, loss of appetite, and swollen glands, his parents knew something was wrong.

“I’m a nurse, so I realised it could be serious. I had a feeling it might be leukemia.” Her husband tried to reassure her: Maybe it’s only a virus. But a bone marrow biopsy confirmed her suspicions. “Your mom’s instinct was right,” the physician told her as he entered the hospital room where she was impatiently waiting for the results. The diagnosis fell on October 28, 2020.

Roxanne cried a lot. Sitting next to her, Mathys was playing a video game with headphones on. He was barely aware of what was happening around him. All the while, thoughts were spinning in his mom’s head: cancer treatments, her three other sons, a leave from work, a life forever changed… Her husband soon joined her in the room. “That’s when it truly hit. I was unable to tell him; I was frozen, paralysed.” So was he.

But the strong and united couple quickly regrouped—they knew the next months would be tough. “We put on our parents’ armour and, in quick succession, went into survival, hypervigilance, and attack mode. We gathered our strengths for our sick son, but also our three other boys at home who had needs to be met and a routine to keep going.”

Isolated Warriors

Mathys’ first hospital stay lasted 32 days with strict pandemic rules in place: one parent at a time, no other visitor, no opportunity to socialize in the playroom. “Only three days in, Mathys was already longing to be home with his brothers. He was too young to fully understand. But seeing his parents in control of the situation made it easier for him to cope. He’s a quiet and smiling boy. He saw himself as a warrior like his favourite superhero Iron Man, with us fighting by his side.”

But isolation was a heavy load. “While one of us was with Mathys, the other took care of the boys at home. They were missing their brother. At such a stressful time, you need support and to be near the people you love. It was very tough.”

“Because of the pandemic, we didn’t have the opportunity to meet with parents going through the same ordeal. It would’ve been helpful to share our stories. But we would only wave to each other in the hallways, alone behind our masks.”

To the parents’ great relief, Leucan came in at the onset of this emotional turmoil. “Our advisor Maryse was there from day one. She guided us through explaining the situation to our kids, she helped me through the process of asking for medical leave, she went to school to talk to classmates and teachers.”

Christmas on Pause

After 32 days, Mathys returned home for a few weeks, only to be hospitalized again on December 20. He spent Christmas Eve in his hospital room but was released on the morning of December 25. “That was our greatest gift.”

The bewildered little family spent the holiday break at home. “It felt good to be together again, to be back in our closely-knit family cocoon. We played board games, watched movies. Every kid received a Christmas basket from Leucan. They were really happy.” Still, Mathys’ illness was taking up a lot of space.

In spite of treatments, Mathys successfully completed the second grade virtually and returned to school and his classmates in the fall. “He was excited but also worried children would mock him. He lost his hair and he still looks bloated because of his medication. Maryse went to school with him, and his classmates gave him a wonderful welcome.”

Pain and Helplessness

Mathys suffers from neuropathic pains induced by consolidation chemotherapy. He stopped playing soccer and is unable to ride a bike. His medical team is working to find the right mix of medication to reduce those adverse effects.

“When he is going through a spike of pain, I feel so helpless. I give him massages, run baths for him. You never get used to seeing your child in pain. It marks you for life.”

During the more difficult times, when Mathys hugs his Leucan plushy close, Roxanne and her husband attempt to comfort and encourage him. “We cannot show him our own vulnerability, anxiety, and terror. But it hurts to see him like that. It breaks our hearts.”

Playful Moments

For Mathys’ brothers, it can be hard at times to navigate through their brother’s mood swings, their own worries, their ruptured routine. “We try to create playful moments whenever possible. We eat pizza on air mattresses in the living room. We gather around a camp fire with marshmallows and music. We let them all have sleepovers in their ‘boys grotto’ where parents are forbidden from entering.”

Good fairies and a dream merchant—as the family calls them—also bring them all sorts of gifts: heaps of candies, pyjamas, slippers, Lego sets. Mathys even received an electric scooter so that he can follow along without any pain when his brothers ride their bikes.

“Knowing my boys are together and happy helps me to sleep through the night and to get up in the morning. Through the ups and downs of this endless rollercoaster ride, Leucan soothes our spirits and eases the burden from our shoulders. Maryse is truly a partner in the storm, she brings a sense of calm.”

Celebrating Life

Now, with Christmas just a few weeks away, Roxanne is feeling more at peace. “I want to celebrate. Mathys is feeling pretty well and I want to express my gratitude to life for allowing him to be with us at home.” She knows other families do not share her family’s good fortune.

She is dreaming of a Holiday season punctuated with the laughter and squeals of joy of her four sons skating around in the backyard. A simple wish. Like old times.

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