When Theressa Lenarduzzi learned her young daughter Erica had a brain tumour, she had been expecting even worse news.
Erica, then seven years old, had been experiencing balance and walking difficulty. As well she was having increasing and severe separation anxiety from her mother, and worsening headaches. But doctors hadn’t diagnosed anything serious.
“It was all kind of sporadic and nothing really adding up to anything,” said Theressa, who runs a massage therapy business from home in Blackfalds. Trips to the doctor didn’t amount to any serious concerns.
There were pieces of a puzzle surrounding Erica’s health that just weren’t coming together until a late night trip last Feb. 24 to the Lacombe Hospital emergency department because Erica was having a severe headache and could barely walk.
“She was going downhill very fast,” Theressa recalled this week.
That led doctors to send to Erica, her mom Theressa and stepdad Butch straight to the Stollery Children’s Hospital in Edmonton first thing the next morning.
“You never want doctors to come in and tell you: ‘We need to talk to you. Do you want us to talk (in front of Erica) or go into another room?’ You never ever want a doctor to say that to you.”
Theressa and Butch went into another room and that’s when they learned Erica had a large mass on her brain.
“I wasn’t totally shocked because she had all these weird symptoms happening. I actually feared worse than what they were going to tell me,” said Theressa.
Erica was diagnosed with craniopharyngioma, a type of benign rare brain tumour near the pituitary gland and most common in children. While it’s not cancerous it is an “unfortunate tumour” because it creates havoc in the body, Theressa said.
That same day they arrived at the Stollery, Erica had surgery to drain fluid that had built up in her brain and causing the headaches. Two days later she had major surgery where doctors removed most of the tumour, but they couldn’t get it all out. Erica did not return home until March 10.
It was determined at Stollery’s that she needed radiation to shrink the remainder of the tumour but one type of radiation, known as proton, is not available in Canada. Proton radiation is more precise therefore it damages fewer healthy cells. The Alberta government approved and covered the treatment cost at a Florida hospital.
On June 18, Erica flew to Jacksonville with her mom. They were able to stay in the Ronald McDonald House there while Erica received 30 treatments. They returned home to Blackfalds on Aug. 13.
Theressa said they don’t know yet if the treatment was successful as it takes time for the remainder of the tumour to shrink. Erica needs an MRI every three months to see what’s happening.
She is doing much better. Her headaches are gone. Her parents are thankful because other children with the same tumour have had more serious things happen, such as blindness.
Steroids and the damage to her brain causes Erica’s body to think it’s starving, and too easily stores fats. She will always have to be on a special diet and that’s hard for her, said Theressa.
From a financial perspective, there’s been some fundraising including a motorcycle poker run and the online Go Fund account “Erica’s Journey: Ongoing Treatments” is open to help with ongoing costs such as trips to hospital. Theressa said the funds have helped a lot because she couldn’t work for three months.
“There were so many generous people, very supportive … from the community, family and friends,” said Theressa.
Erica is now permanently on three different medications to replace hormones that her body doesn’t produce anymore. It’s “life and death” medication she must take every day. She cannot do high impact activities and requires physical therapy.
“I’m thankful that it wasn’t terminal, because you know when she had all that stuff going on I thought the worse. It was almost a relief that it was this.” The prognosis is 80 to 90 per cent survival for this kind of tumour.
“We just go on day to day and don’t even think about tomorrow,” said Theressa.
Erica, now eight years old, is busy settling into Grade 3 at Iron Ridge Elementary School in Blackfalds.