In 2003, Breeann Hoogwerf’s parents noticed their daughter was holding a book close to her face to read. She went from having an eye exam done to see if she needed reading glasses, to an appointment with a specialist and an MRI. She had a tumour in her brain.
Breeann’s father, Garret remembers the terrifying scenario he and his wife were presented with. “If we did nothing, she was dying. They said she could die on the table, be blinded or paralysed – if she came out of it.”
Breeann’s reaction was no surprise. “I cried and I was really, really scared,” she remembers. “I didn’t know what to expect or what was going to happen.”
The tumour had grown between the two lobes of Breeann’s brain and reached from the optic nerves back to her brain stem and had wrapped around her pituitary gland. The surgery to remove it took 10 hours. Her doctors suspect it had been growing since she was in the womb. While the tumour itself was benign, it’s caused long-term problems for Breeann including damage to her optic nerve. She suffers from strabismus, which turns her eye inward. That brought her back to CHEO for another surgery – five years after her first. The surgery has to be done so she can see.
However, this surgery is not a complete, long-term solution, according to her ophthalmologist, Dr. Annick Fornier. “Unfortunately the tumour had initially compressed one of those optic nerves. Nerve conduction can return, but it didn’t fully return in her case. So, whether or not the tumour returns, the palsy of her eye’s extra ocular muscles is still there.”
Breeann’s other problems are the result of losing her pituitary gland. She sees Dr. Sarah Lawrence, an endocrinologist who is working to bring back to her body what the surgery took away. “There are a number of hormones produced by the pituitary gland. Now that it’s been removed, her body can’t produce them. So now, we have to replace each one of those.”
This involves medication she’ll have to take every day for the rest of her life. She’ll need to have her bones and blood checked regularly, and as they recently discovered, Breeann’s fight is far from over. Her tumour is back – about a centimetre in size. The news is weighing heavily on her. “It’s just hard to focus sometimes,” she says. “Just knowing that it’s there and sometimes I get headaches and I can kind of feel it. I can’t think about anything else, so it’s hard to concentrate on school work… or anything.”
CHEO continues to monitor Breeann, for the damage from the old tumour and the impact of this new one. Radiation is being used to try and shrink it, but it’s already having an effect on her quality of life. She has no short-term memory. Recently she missed her stop on the bus and got dropped off in different part of town and had no idea how to get home.
She’s had five surgeries in all and has had to deal with fallout from them, but in the meantime tries to live as normal a life as possible. She fears the worst. “I worry that the surgery’s not going to work,” her eyes well up with tears. “It’s the third time now that they’ve tried to get rid of my tumour….”
But no matter what, Breeann has the support of her close-knit family made up of her parents and brothers Chris and Mark. Chris says they just take things one step at a time. “It’s a lot of pain, but we try to do as much as we can as a family. We enjoy ourselves. We enjoy the time we have with each other and any opportunity we have to be together.”
The family also gains strength from its support from CHEO. Breeann’s mom, Karen says it’s an amazing place. “We will do anything we can for this hospital. Absolutely anything,” she says.
When Karen Hoogwerf says “absolutely anything” she means it. The family agreed to be profiled for the 2009 CHEO Telethon on CTV and agreed to allow a reporter and camera crew interview all of them and follow Breeann through her most recent surgery.
“They’ve saved us,” says Karen. “And we can pass that gift on to other families and encourage them to donate. Everybody hopes they never need to use this hospital, but thank God it’s here.”
At the time of writing, the Hoogwerfs got some exciting news. Breeann’s tumour had shrunk significantly as of June 17th. She was given approval from her doctors to resume taking her growth hormone, which helps increase her energy levels. They are hopeful the radiation destroyed any remaining tumour cells, and that her long term prognosis is positive. She still has some bouts of double vision from the optic nerve damage, but deals with it well. She also graduated Grade 12 at St. Mary’s in Brockville and will take some co-op courses before heading to college to study to become an aesthetician. Her mother Karen says Breeann’s determination and positive attitude have brought her this far, and the care from CHEO made a huge difference.
“We have been touched by so many caring people at the hospital, and the agencies that help CHEO, such as Candlelighters, the Ottawa Senators Foundation, the Children's Wish Foundation, and Ronald McDonald House that we can never repay the kindness they have shown,” she says.
“Someone once told us that God does not give us more than we can handle. I somehow don't see God as handing out difficulties, but I believe that when bad things happen, he puts people in our path to help us through. We have had many angels, and thanks to all.”
Breeann and the Hoogwerfs know that like so many CHEO kids, she will likely have more challenges. Nothing is certain, and her tumour could potentially re-grow. But in the meantime, she’s enjoying one day at a time, plans for her future and is working toward achieving her goals. She recently returned from a family trip to Italy, thanks to the Children’s Wish Foundation. It was a trip they will always remember.
After six more months of follow up at CHEO, she’ll ‘graduate’ to the adult hospitals. But, just like any alma mater, she will think of CHEO fondly for friends made and lessons learned that would last a lifetime.