For months, three-year-old Molly’s parents visited specialist after specialist, trying to find the cause of the “sore ear” that continued to bother their young daughter. Following appointments with the GP, an ENT, a dentist and a chiropractor, parents Michael and Michelle noticed Molly’s eye turning outwards, finally leading them to the rooms of an ophthalmology specialist.
An MRI was ordered, and on the day of the scan Michael and Michelle were devastated to learn Molly’s “sore ear” was in fact Optic Nerve Glioma, an inoperable brain tumour sitting behind Molly’s eye. While fortunately the tumor was unlikely to limit her life expectancy, they discovered little Molly was already blind in one eye. Due to where the tumour was located on her brain, further growth would compromise remaining vision and impact other aspects of her health.
While emotions ran high, Michelle says their overwhelming response to the diagnosis was fear.
“Fear for Molly. Fear for her brother Harrison. Fear for our family's future, and fear for how the news would impact family and friends.”
A couple of weeks after the diagnosis the family travelled to meet Molly’s new hospital care team. There she was fitted with a port in her chest and began the first of three chemotherapy protocols she would undergo over the next few years.
While Molly has been fortunate to receive much of her treatment as an outpatient, Michelle has lost count of the number of unplanned admissions she has needed due to illness and surgery. When Molly was admitted for emergency treatment over both Christmas and Easter, it was particularly hard on the family.
Although she has been through so much pain, Michelle credits Captain Starlight with helping Molly get through her hospital experience after three years of three different courses of treatment. In fact, despite the intense fatigue, brain fog and constant dietary battles due to chemotherapy, Michelle has a surprising revelation:
“Molly loves going to hospital and we can't believe it! As we make the 2-hour trip to the hospital for a painful procedure, she's more focussed on whether she'll be able to visit the Starlight Express Room before or after the procedure, what she'll be able to play or make when she's there, who will be there to paint her face, and which song she's going to request on the radio. I cannot imagine those car trips if she didn't have that to look forward to. We can’t make her smile like Captain Starlight can.”
Molly first met Captain Starlight during one of his Rocket Rounds of the ward when she was first admitted. From their very first meeting, Captain Starlight was able to bring happiness and laughter into Molly’s world as she underwent her treatment. From assisting Santa with Christmas presents when Molly feared he would not find her, to a quick fart joke sparking hilarity before a scary procedure, Molly’s parents are certain Captain Starlight’s company has helped Molly to remain her happy-go-lucky self.
The same is true outside of their hospital visits. When Molly’s Starlight Wish of her own trampoline was granted, Michelle felt a mix of joy and relief.
“When she said she really wanted the trampoline our hearts sunk because we worried she would be too unwell to really enjoy it… We hadn't invested in one because we were anxious about her safety and being on the one wage, we weren’t sure we could afford to purchase the safest, but most expensive product that perhaps Molly wouldn’t use much.”
But Molly’s trampoline arrived during a break in chemotherapy and she is now well enough to play on it all day! Self-proclaimed “best friends” Molly and Harry have found many uses for the trampoline;
“They have picnics on it. They run the sprinkler under it and scream with delight. They use it for imaginative play. They kick the ball on it. They play on it until dark and I cannot believe we are lucky enough to watch that every day.”
As Molly’s journey continues, Michelle is thankful to Starlight supporters for making these experiences possible. “Without the promise of fun from Starlight, everything would be harder,” she says. “These aspects of Starlight’s work take the focus off the bad stuff and help sick kids bounce back.”
