The Swann family learns to cope with their loss through helping others
Losing a child is undeniably the hardest thing a family can experience. Sadly, around 20% of children diagnosed with cancer do not survive beyond three years of their diagnosis, leaving behind bereft families. Grayson Swann was one of those children, but by connecting with other parents, the Swann family have found a way through their grief.
Grayson was the only son of Angela and Miles Swann and brother to sisters Erika, Lexi and Izabella. The three-year-old was diagnosed with T-cell Acute Lymphoblastic Leukaemia in August 2017 and started receiving chemotherapy treatment almost immediately. A month into his treatment his family suffered another cruel blow when his younger sister, Izabella, started having seizures. Soon after, she was diagnosed with epilepsy.
“When Grayson was diagnosed we were really worried,” says Miles. “Then Izabella was diagnosed with epilepsy. It was a dark time for the family and we felt quite overwhelmed.”
Izabella was prescribed medication, which helped prevent her seizures, and Grayson continued with his treatment. He responded well and was able to go home to Waiuku with his family between treatments.
In March 2018, Grayson’s health took a turn for the worse when his temperature soared to 40 degrees. Angela and Miles called an ambulance which struggled to get Grayson to Starship Hospital quickly through peak hour traffic. At the hospital it was discovered that Grayson’s port was infected. It was removed and Grayson was hospitalised for two weeks.
Once Grayson had stabilised, the decision was made to give him chemotherapy before he was sent home. Within a few hours of the treatment, Grayson’s temperature started climbing again. His blood was tested and a fungal infection was detected.
From that point on, Grayson’s condition deteriorated rapidly. Over the Easter weekend, he suffered a stroke which affected the left side of his body. He was put on a ventilator but his heart gave out and he died on Easter Monday with his parents at his side. Grayson was just one month away from moving into the maintenance phase of his treatment.
Angela and Miles were devastated but consider themselves fortunate to have been able to be by their son’s side when he died. Not long after, their Family Support Coordinator, Collette, gently encouraged them to attend a bereaved parents’ weekend. The couple were initially hesitant but decided to go.
“It turned out to be a really powerful experience for us,” says Angela. “There were parents at different stages of their grief which allowed us to view grief from different perspectives. We realised we weren’t alone and it gave us hope that we would eventually be able to get through our loss.”
The couple have attended several bereaved parents’ weekends since then and also attend a monthly support group. They have become good friends with some of the parents they’ve met and are in turn starting to support other parents and families. Miles explains that he goes the extra mile to be supportive of other fathers who often struggle to open up about their loss.
“While we are all part of a ‘club’ which no one wants to be part of, I feel privileged to belong to such an amazing group of people,” says Miles. “There’s a sense of camaraderie which helps us get through the hard times.”
The family’s relationship with their church, Collette and Child Cancer Foundation has also helped them.
“We already had a great relationship with Collette and the Foundation before Grayson died, but they really went above and beyond to support us after our loss. We were so well supported for which we are incredibly grateful.”
Today, the family is doing as well as can be expected. Angela recently received a sewing machine after applying to the Foundation for a Personal Development Grant so she can make and sell Remembrance Teddy Bears. Angela has already made a bear for her daughters, sewing a piece of Grayson’s clothing into the teddy which they love.
Angela and Miles try to find the words to express how far they’ve come since losing their son.
“We do of course miss Grayson but we also feel empowered through the amazing support we’ve received to share our experience and help others through their loss. It feels like the right thing to do.”
Help families like the Swanns.