Blogger: Maddi Jatter
Shortly before Bram’s first birthday he came down with, what his parents first thought was a tummy bug, lots of vomiting. After 14 days and lots of tests, a scan revealed Bram had a brain tumour. Very few of us can begin to understand what thoughts and feelings such news brings, especially when it’s your 12 month old baby.
After short stay at St George’s Hospital, Tooting, Bram was transferred to King’s College Hospital and the family secured a much needed room with us here, at the Camberwell House on 15 March 2015. This was Bram’s first birthday, and also Mother’s Day. That evening while checking into the House, the build-up of blocked brain fluid was drained with a shunt, which was followed, a brief four days later, by an eight hour operation to remove the tumour.
This was the start of a truly astounding journey that Bram and his family would embark on, a story that impacts on all who have been touched by cancer.
The results of the surgery revealed that Bram’s tumour was of a particularly aggressive and quick spreading type know as Anaplastic Ependymona-stage 3, which currently only has a 50% survival rate. It is very hard to try and comprehend what effects this news had on Jeroen and Laura, but right from the start this was a family that were going to fight for their boy and do everything in their power to help him win his battle.
What followed during the next 225 days of Bram’s battle are truly astounding.
Initially Bram suffered breathing difficulties after this surgery and was transferred to the Evelina Hospital for a few days. However, once back at King’s, shunts, to drain excess fluid continued to cause problems but after a number of attempts a low pressure model was finally found to work and after a total of 37 days on the Intensive Care ward, Bram was finally deemed well enough to be transferred to the High Dependency ward.
At the beginning of May, while arrangements for the planned chemotherapy treatment were being organised, tests on this excess fluid draining from his brain revealed that Bram had caught a bug which resulted in a six week course of antibiotics and an unwelcomed delay to the start of his chemotherapy. Around this time it was also discovered that Bram had developed a hernia, which would need further surgery to resolve, just one more delay in a schedule that really didn’t need any delays.
At the end of each day, Bram’s parents, Jeroen and Laura, would take it in turns to come back to the Camberwell House to get a good solid night’s sleep and while they were passing reception they would always stop to share the events of the day with us; both the good bits and the more challenging bits. Sharing their stories from the day was something they felt helped them to deal with events as they unfurled at the hospital, something that other families staying at the House often tend to do. Sharing stories is something very human and helps us all to deal with challenging situations.
At the weekends Jeroen and Laura would be joined by their eldest son Max, after spending the week with his grandparents to attend nursery, it was lovely to see the family reunited and once or twice Max got special permission to join his parents to visit his younger brother on the ward. This of course was a very anxious time for the family and it was heart-warming that this lovely young family were not only was getting support from Bram’s English grandparents but also his Dutch grandparents, both of whom became regular visitors to the House, lending their support in whatever way they could.
At the beginning of June, an MRI scan revealed a cyst had started to grow in the same place that the tumour had been. This was not good news. However, it was decided that to avoid any further delays in starting chemotherapy the cyst would just be drained without any further major surgery.
By the end of June, Bram was finally ready to be transferred to Great Ormond Street Hospital to start his chemotherapy and we had the difficult task of saying our goodbyes to this wonderfully courageous family, sending all our love and best wishes for a successful outcome, as yet not knowing how the future would turn out.
It was with great pleasure that we welcomed the family back when they returned to the House six months later to join our Christmas party, bringing not only Max but also Bram, who had been discharged at the end of October from University College London Hospital.
What joy to see the whole family together again, catching up with how their story had unfolded was challenging but it was a truly admirable story full of challenges, some failures but eventual success that is still in the making.
The chemotherapy at GOSH had not worked out as planned and was abandoned, then further surgery removed a regrowth and then radiation therapy at UCLH was finally chosen over the American based proton radiation therapy.
Bram is now tumour free although is still currently being helped via a tracheostomy (a tube fitted into the wind pipe to help breathing). He is again reunited with his beloved older brother Max, who was able to spend many hours visiting his younger brother during his time on the various wards at GOSH and UCLH. Mum and Dad have learnt new skills that have enabled Bram to return home and Bram’s UK grandparents have moved house, from Scotland to Surrey to be close, enabling Dad to return to work as an airline pilot, confident in the knowledge that his wonderful family will be well looked after.