Four-year-old Oliver Ducharme keeps up an almost constant smile despite health issues created by the large tumour near the base of his brain.
The Salmon Arm boy and his family are seeking help through a GoFundMe page as they prepare for a cross-country odyssey to Toronto to start new treatment for the tumour he has been living with since birth.
His mother, Danielle Ducharme, said although the tumour is not cancerous, it is three times the size required to be considered ‘giant’ by doctors. It is growing at the same rate as the boy’s brain.
Along with the size of Oliver’s tumour, Ducharme said his case is unique because of how early symptoms manifested.
She said the boy was having seizures from birth, when in other similar cases doctors said they usually take years to appear. The seizures sometimes occur hundreds of times per day despite the use of medication. The tumour’s proximity to Oliver’s hypothalamus gland results in several issues including the regulation of hormones and body temperature.
Ducharme said doctors think Oliver’s symptoms will only get worse as he grows.
Oliver spent much of the first year of his life in hospital, leading to a juggling act for Ducharme and her family. In a tragic twist of fate, Ducharme’s 13-year-old daughter Tabitha was also diagnosed with a cancerous brain tumour on top of her brain stem.
Tabitha experienced nausea regularly from a young age. Extra support was provided and Ducharme found ways of scheduling jobs around her daughter’s regular bouts of illness. Once Tabitha was in school, teachers told Ducharme she had above-average intelligence and good verbal skills but struggled to translate her thoughts to paper. Ducharme said her school was very helpful, especially after Oliver was born.
Tabitha, who prefers to be called Lemon, was immediately loving towards her new baby brother and enjoyed visiting family in the Lower Mainland as Oliver received care in hospital. She also easily made friends with other kids during stays at the Ronald McDonald house.
Eventually Tabitha had a seizure at school and was taken to hospital but Ducharme said she was released after some blood work.
“She was not able to do things that other kids could. Things she was able to do as a child she simply did not have the coordination any longer,” Ducharme said.
After Oliver’s birth and with Tabitha’s symptoms continuing, Ducharme said she began lobbying members of the medical team looking after Oliver to have a look at Tabitha. Ducharme’s intuition was correct as an MRI scan showed the tumour and signs of long term buildup of fluid in her brain. Like Oliver’s, Tabitha’s tumour is located in a place that makes biopsies and treatments very dangerous.
In Toronto, the family will begin working with doctors who are willing to try a brain surgery for Oliver which will be less invasive than other options. With medically-assisted air travel set to cost Ducharme $36,000, and multiple trips to Toronto required, she thinks they will have to drive.
Before that, Ducharme said Oliver must go to Vancouver for a multi-day EEG scan and a stomach surgery.
No matter how they get to Ontario for Oliver’s treatment, deadlines for funding and planning are drawing near. Ducharme did not want to resort to setting up a GoFundMe page but decided to go through with it after noticing that charities which help children with special needs were having funding issues due to the pandemic. Support for Ducharme and her family was large and immediate as the campaign yielded $45,663 in donations between its Aug. 27 inception and Sept. 9.
Following the family’s return from Toronto, Ducharme said Tabitha will be undergoing a procedure to relieve the buildup of fluid in her brain.
The GoFundMe campaign has a $100,000 fundraising goal. Ducharme said the support they have received is unbelievable, and the money will help cover costs associated with specialized equipment for Oliver and possibly a wheelchair accessible van which will make her family’s travels for treatment much safer.
One of their challenges is that Oliver is on the verge of outgrowing most of the equipment such as wheelchairs and car seats which he relies on. Due to the pandemic, they have not been able to see a specialist and get new equipment.
Ducharme fears that if Oliver’s feeding tube comes loose on the trip to Toronto, his surgery will have to be delayed. If that were to happen, the family would have to go through a multi-week stay at a hospital in an unfamiliar community as a new tube is placed and heals. The use of an ill-fitting car seat which she would have to get Oliver into and out of multiple times per day on a cross-country drive concerns Ducharme. She said a vehicle that his stroller could be locked down in would be a much better option if they have to drive.
The possibility of Oliver being exposed to COVID-19 also hangs over the family. It could lead to the cancellation of the surgery or greater risk of blood clots during recovery if it is not detected before the procedure.
Along with the fundraising, Ducharme said she has received an outpouring of support from the community, particularly from other moms, some of whom have special needs kids of their own. She described a chance meeting with a woman whose son is also named Oliver at the pharmacy. The coincidence went well beyond the boys’ shared name as Ducharme quickly found out that that the other Oliver also has epilepsy. The two boys even share the same dietician and neurologist.
“It is unbelievable when you have someone who can understand your situation,” Ducharme said.
Ducharme ‘s parents have also been a major support system for her since Oliver was born.
She added that schools in the area have been very supportive as she has arranged medical appointments for Oliver and Tabitha.
Amidst the hard work of arranging his treatment, Ducharme and her family try to fit in a week-long camping trip each year, usually somewhere with a pool as Oliver loves a dip in the water. Good times like these are very important; Ducharme said Oliver feels all emotions, good and bad, very intensely.
Through all the health problems and time spent rushing between medical procedures, Ducharme said Oliver’s loving nature is inexhaustible. While some children require sedation for procedures, she said Oliver usually just needs to be asked to ‘say cheese.’
Even now, with all the uncertainty on the horizon, Ducharme said the smile is never far from Oliver’s face.
Those wishing to help Oliver access treatment can contribute to the GoFundMe page at Help make hope for Oliver a reality.
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