The aim of this campaign is not only to spread awareness of GBM but also to raise funds in order to assist families who have been forced to face similar realities to that of Bee and her family, who cannot afford to provide the type of care that Bee was able to receive. The donations will be used to enable CANSA to provide care and support to these patients and families to ensure that other families can battle this debilitating disease.
We pedal for a reason, no matter the weather or season!
Bee and the Monster
August of 2015 was a significant month, not only for our beloved Bianca, affectionately known to us as Bee, but for our entire family. After a few months of being subjected to regular headaches and blurry vision, Bee was treated for mediocre sinusitis and flu and given a few saline drips to relieve some of her symptoms. Eventually, a Sister from A&E said that it was time she sought the opinion of a specialist.
At the age of 23, an MRI identified a 5cm malignant cyst in Bee’s brain, which was soon diagnosed as Stage 4 Glioblastoma Multiform (GBM) – an extremely aggressive form of brain cancer. Doctors prepared us for 18 months - at the most - of time left with our precious Bee as she began her fight against this debilitating monster.
Bee bravely endured several months of chemotherapy, radiation, endless amounts of cortisone and palmsful of pills. She managed to make it past the allotted 18 months and we were blessed enough to spend three of her birthdays with her. Several check-ups left us feeling relieved and filled with hope as they revealed no changes or growth in the monster. However, we watched Bee battle through symptoms of fatigue, nausea, constipation and sore muscles.
Even with everything she was going through, Bee still smiled, thumbs-up and fighting through every session of treatment. You see, Bee was a warrior from early on in her life. At the age of 5, she was diagnosed with a rare type of cerebral palsy called Worster-Drought syndrome (WDS). This syndrome affects muscles around the throat and mouth and significantly impairs speech, swallowing, coughing and feeding. Soon enough Bee realized she was different to others and had to not only struggle with everyday activities such as eating and speaking, but had to endure seizures, along with coping with society treating her differently. Through the guidance and support of her family, she remained a loving person who treated everyone equally and with the kindness that we all wish we had.
At the regular check-up, in August 2017, we were given devastating news that there were 8 tumours found throughout Bee’s brain, the treatment began to fail. She lost the ability to walk. Shortly after that, her speech was stolen. ‘Could this get any worse?’ we thought. And then it did. Bee could no longer eat or see. In a matter of weeks, the monster took over everything. She was bedridden, unable to do anything for herself. Bed baths, nappy changes and bedside duties became a reality for Bee and her family. She lost all mobility and had to be fed through a PEG (percutaneous endoscopic gastrotomy tube). Someone had to be by her side constantly. Bee’s only form of communication with us came through the tears rolling down her temple.
After years of hospitals, medicine, pain and suffering at the hands of impatient health professionals lacking in empathy, Bee’s family wanted her to be in the comfort of her own room amongst her loved ones for the time that she had left. With support from Hospice, her grandparents, uncles, aunts, cousins, family and friends who took turns to care for her, her immediate family received a break from their heart-breaking reality for an hour or two at the most.
Fortunately, Bee’s parents were able to support her at home with nursing staff, pain management medicine, a wheelchair, a hospital bed, and clean clothes and bedding to ensure her comfort until her very last breath.
On 17 July, 2018 we said goodbye to our most beautiful warrior princess. Even during her battle/journey with GBM she pushed her limits. Bee smiled from the day she was born with all her heart until she was physically no longer able to. She glowed like an angel and people knew there was something special about her the moment they looked into her beautiful crystal blue eyes.
Bee was the most phenomenal person you could ever come across. She loved her dogs and family with all her heart and never shied away from loving anyone who encountered her. She taught us to love unconditionally, to never judge and to smile even when there was nothing left to smile about. Nothing on this earth can compare to the smile she shared so generously and the love she spread so selflessly. Irrespective of the monsters’ life can present, she taught us to hug harder, to love longer, to smile bigger and to laugh louder, no matter the circumstances.