“He is the strongest person I know, and he’s only one,” is how Jakub’s mom, Joanna, describes her son. “I learned the meaning of strength the day he was born.”
Jakub was born three months early, a situation that Joanna describes as beyond difficult. “Cupping his tiny and fragile head and limbs with my fingertips, I prayed he would survive this. A day at a time I said.”
After 99 days in the NICU, Jakub was discharged. While family and friends asked if it was difficult taking care of a newborn and his three year old brother, Joanna recalls this time as easy, thrilled to have both of her boys at home after the uncertain start to Jakub’s life.
Unfortunately, that happy time was to be short-lived. In August of 2020, the family received devastating news. The “rash” that Jakub had been experiencing ended up being their worst fear. Cancer. And not just any cancer, but an extra renal rhabdoid tumour, something so aggressive and rare it was difficult to find any glimmer of hope.
“I was an anxious mess at our first oncology visit,” recalls Joanna. “I asked the dreaded question: ‘how long?’. Our oncologist put her gloved hand on my shoulder, smiling behind her COVID-19 PPE face shield and told me that I could plan his first birthday. I cried, no I sobbed, because that was the best news I’d heard since his diagnosis.”
The pandemic made things difficult. Although the family was from Windsor, they knew the best chance for Jakub’s survival would be with the treatment offered by Sick Kids in Toronto. This team’s record included one similar case where the child had survived to age three – this was the hope that the family had to cling to. So, without a second thought, Joanna stopped working and, heartbroken to leave her husband and three year old son, made the move from Windsor to Toronto for the anticipated six months of treatment Jakub would require.
The next weeks seemed endless. Surgeries, port insertion, echocardiogram, hearing test, eye exam, imaging and scans. The medical team was extensive: oncology, medical genetics, bone marrow transplant team, orthopaedics, plastic surgery, ENT, respirology, neuro developmental team, nurses, fellows, dietician, occupational therapy, physical therapy, pharmacy, social worker, and child life. It was overwhelming to Joanna even with her work in the medical field.
Among the changes to absorb, Joanna soon learned what bravery beads were: a program that gives your little warrior a bead for every hardship they have gone through from hospital admission, to bloodwork, to procedures.
“As I picked out each bead for everything Jakub’s gone through during our first chemotherapy admission, I held the long string of beads up to Jakub’s nurse and started to cry, realizing what Jakub, at only six months, had already gone through,” remembers Joanna.
In hospital for yet another admission for febrile neutropenia, the family got more news: Jakub’s cancer was genetic. He had Rhabdoid Tumour Predisposition Syndrome, meaning he was at a high risk for developing other cancers, a risk that is highest up until age five. It meant MRI brain and whole body scans every three months until then and, afterwards, every six months for the rest of his life. It also meant there was a slim chance Joanna and her husband could be carriers and, even worse, that their three year old son could have it too. Despite this gut-wrenching news, “we can do this” became the family’s mantra.
In December, 2020, after the third round of chemotherapy, the family had to make a decision. Admission every two days to hospital for transfusion wasn’t good, and Jakub wasn’t well enough for the fourth round of chemotherapy that had been planned. Radiation was not an option. The care team decided an autologous stem cell transplant would be Jakub’s best chance at survival. That meant they would harvest his own stem cells, then hit him with a very strong round of chemotherapy that would wipe out his entire immune system, and hopefully the cancer cells as well. Jakub was to be admitted on December 21st, two days after his first birthday, with the transplant scheduled for the 29th.
Christmas came a week early, on December 18th. The family went all out to make it as special as possible, decorating their home away from home with a tree, stockings and garlands, and having cookies, crafts, presents, Christmas carols, a turkey dinner and a self-made photoshoot. The following day, Jakub’s birthday, was all about him with dinosaurs and decorations everywhere and a virtual party with all of his family.
Two days later, Jakub was admitted for stem cell transplant, something Joanna remembers as the most difficult thing she’s ever witnessed.
“His BMT doctor told me it would be hard. I hoped his words weren’t true. Mucositis (inflammation of his entire digestive system caused by the chemotherapy) was so severe, he wouldn’t breastfeed, he couldn’t eat, I couldn’t even hold him. My active boy who is normally pulling out his lines and crawling out of his crib, reprogramming his IVs, and smiling through dressing changes, was now just lying in bed, writhing in pain, desaturating every time mucous got stuck in his throat. TPN, antibiotics, boluses of morphine, long nights of alarms going off. It seemed never ending.”
The team was excellent, Joanna remembers, becoming her family, therapists and even sometimes the laugh she needed.
“I came to know some phenomenal people with passion to save my little one with a smile on their face. With this spirit, one night the nurse was checking Jakub’s pressure every 15 minutes. It was critically low. Every time I’d ask, ‘is it better?’. At 4 am, she was checking his pressure and we heard ‘pfffft’. It was Jakub, blowing raspberries at his nurse, the flirt. My son was back.”
Everything after that seemed much easier. His neutrophils were coming in and each day he was better. Finally discharge day arrived and Jakub received the send-off of champions, complete with pompoms, whistles, a send off cheer and award with the whole unit cheering him on.
Back home, the family was linked with Ursula at Windsor Regional Hospital who introduced them to Childcan.
“I called Lorraine and was immediately welcomed with open arms”, remembers Joanna. “Her son went through stem cell transplant as well. She was someone who understood, someone who knew what to say and knew what supports we needed – accommodations reimbursement, parking, gas cards. I literally cried when the cheque to reimburse us for the housing costs from the Toronto stay came in. I was speechless. What truly amazing people! How I thank all who made this happen. How much this meant for us with our financial struggles through it all.”
“We still go pretty much monthly back up to Sick Kids. Every time, we get a helping hand from Lorraine, our Childcan support liaison, be it a phone call to vent, dropping off some toys or resources, or even a much needed gas card or arranging parking,” says Joanna.
While they don’t know what will happen on Jakub’s cancer journey in the future, he continues to grow as the boy who kicked his way out for an early birth, with strength, vigour, smiles and the strongest passion for life imaginable.
“With the supports of all who have helped us – friends, family, coworkers, strangers, ongoing input from Childcan and help along the way from so many organizations, and of course the phenomenal medical and support staff in Windsor Regional Hospital and Sick Kids – Jakub and I, as well as our family, are able to enjoy every minute of it. One day at a time.”