Jack’s weekly visit: Tackling a rare blood disorder
It’s perhaps not surprising that Spider-Man is Jack Malott-Clarke’s favourite superhero. Peter Parker, the teenage boy bitten by a radioactive spider, is a kid forced into extraordinary circumstances. He adjusts to his new reality even as he continues living the everyday life of a teenager. In some ways, the experience relates to that of 12-year-old Jack who was diagnosed in July 2019 with a rare blood disorder called severe aplastic anemia.
“I really like Tom Holland’s Spider-Man,” shares Jack, referring to the actor who plays the hero in the latest movies. “He’s a kid like me and he’s funny.”
The staff and physicians at Children’s Hospital at London Health Sciences Centre (LHSC) are acutely aware of Jack’s love for Spider-Man. Jack visits the hospital every Friday for treatment and monitoring. The team does their best to make sure a Spider-Man IV pole is available for Jack whenever needed and they find other ways to brighten his experience. One of his nurses, Kalique Dzidah, recently surprised Jack by dressing up as the superhero.
“That was the best. Kalique was dressed in full Spider-Man and came around the curtain doing little actions. The smile on Jack’s face was priceless,” says Jack’s mom, Lauryn Malott. “They go the extra mile to make kids feel good at Children’s Hospital because they know it’s not always fun.”
It certainly hasn’t always been fun for Jack. When he started coming home from school with bruises at the age of 10, Lauryn became concerned.
“These weren’t just little bruises; they were heavy. Jack is a shy and quiet young lad. He doesn’t roughhouse and he wasn’t being bullied, so we went to the doctor, who ordered a blood test,” Lauryn explains. “The next day, Children’s Hospital called to say we needed to bring Jack in right away. He was in need of blood transfusions.”
Jack was referred to Dr. Lawrence Jardine, a paediatric hematologist/oncologist at Children's Hospital, and sent for a bone marrow aspiration test. It was then that Jack was diagnosed with severe aplastic anemia, a rare blood disorder where the body’s bone marrow stops making new blood cells.
“Your bone marrow is like a factory. It creates white blood cells to fight infection, hemoglobin to carry oxygen to your organs, and platelets to help stop bleeding and bruising. In aplastic anemia, that factory stops working and you stop producing the cells needed to survive,” explains Dr. Jennifer Seelisch, a paediatric hematologist/oncologist at Children's Hospital who became Jack's physician in 2020 when Dr. Jardine retired.
Jack was given blood transfusions twice weekly to replenish his platelets and red blood cells. He was also monitored closely and treated for any infections.
“It was horrifying. You just want to protect your children; you love them so much and it’s so scary when someone says they’re really sick,” says Lauryn, reflecting on the diagnosis.
Jack’s mom, dad, and older brother were tested to determine if any of them were a match for a stem cell transplant. Unfortunately, they were not.
“The best treatment for aplastic anemia is a stem cell transplant from a sibling donor,” notes Dr. Seelisch. “An alternate option is immunosuppressive therapy and so that’s the route we’ve taken with Jack.”
Jack was admitted to Children’s Hospital for 10 days where he was treated with a strong immunosuppressive drug. The goal was to suppress Jack’s immune system enough to make his bone marrow start working again.
He was then prescribed an oral immunosuppressive drug to take at home and he began visiting the hospital weekly for monitoring. Once a month, he is also treated with the drug Pentamidine, which prevents severe bacterial pneumonia.
“I hated all the pokes and long days with transfusions,” says Jack. “I don’t like going up to the inpatient floor when I get fevers and stuff, but when I do it’s nice because Melissa, Ollie, and Zombie see me there.”
Melissa Zurch is a child life specialist at LHSC who helps children and families adjust to and understand hospitalization, medical procedures, illness, or injury. Ollie is Children’s Hospital’s therapeutic clown and Zombie is a therapy dog who normally visits children in hospital to help alleviate anxiety.
“I like Melissa because she is always nice. We talk about dogs and she watches YouTube videos with me,” explains Jack. “Ollie is funny. He makes me lots of pictures and we get to play silly tricks sometimes. I like Zombie because he is so cute and fluffy, and hugging him makes me feel safe and less stressed.”
Visiting the hospital every Friday can be stressful for Jack and his family as they await the results of his bloodwork. Jack was recently diagnosed with another rare blood disorder called paroxysmal nocturnal hemoglobinuria (PNH).
“A lot of kids with aplastic anemia have PNH, which is essentially an abnormal population of cells in their bone marrow. The number of these abnormal cells can grow and cause blood clots and breakdown of red blood cells, which can be quite dangerous,” explains Dr. Seelisch.
In Jack’s case, the number of these abnormal cells remains low. While his care team is monitoring the levels over time, the current focus is to treat the severe aplastic anemia.
“Every week, Jack gets bloodwork to see where his numbers are at and to assess whether the immunosuppressive therapy is working,” adds Lauryn. “It’s so crazy; we’re so focused on numbers now.”
Jack’s blood counts are improving and he does not currently need blood transfusions. His care team is in the process of slowing his immunosuppressive therapy with a goal of eventually stopping it. The hope is that Jack’s bone marrow will continue to produce new cells on its own. If it doesn’t, a stem cell transplant from outside the family will be explored.
“We just want him to get better and for this to be a memory, so that he can go back to school and play with his friends," says Lauryn.
With such a high risk of infection, Jack had to stop attending school even before the COVID-19 pandemic. With COVID-19, his family has been extra cautious to reduce his risk of infection.
“Jack has an older brother in college who actually moved out to keep Jack safe, so that’s been hard. He can’t see his brother and he can’t see his friends,” notes Lauryn.
In hospital, it’s been difficult for Jack to not have any visitors and to adjust to safety protocols.
“Prior to COVID, Jack could hug Ollie and the nurses, and we could see their smiling faces. With COVID, you can’t do those things. It’s different now – still caring and wonderful, but different,” says Lauryn.
She notes how grateful she is for the care Jack has received at Children’s Hospital over the past two years.
“We’re lucky that we have a great team that takes care of Jack. He looks forward to seeing the nurses, Melissa, and Ollie every week,” says Lauryn. “From the moment Jack was diagnosed, it’s been nothing but hard work, dedication, care, and kindness. My son has received the best care and he’s here today because of that team.”