With a vast number of children, by the time Neuroblastoma is detected the disease has taken over and they are in intensive care.
Perhaps it was due to that initial six months in the Critical Care Unit at QMC in Nottingham that we all became so tough and resilient – for most of us it’s an environment that we only see on television and in films – but the experience comes with challenges and obstacles for an entire family that you could hardly imagine.
While the initial shock, and the constant noise, bright lights, machines beepng and families panicking is overwhelming to start with, it’s scary how quickly you get used to this being your way of life.
We both have employers that have been incredibly supportive throughout the whole process – not everybody does. We met families who ran their own businesses who had to either stop spending time with their critically ill children or stop earning altogether. As QMC is a regional hub, many families like ours were hours away from home – not just able to pop back for something to eat and drink – so more expenses that had to be incurred.
As Sebastian began to defy the odds and get better there were things needed like specialist equipment, physio and occupational therapy, and speech and language consultations to see whether it was safe for Sebastian to swallow. While these things are available on the NHS, the strain on the health service meant we often had to explore other avenues to move things along.
As time went on we had to cover thousands of miles nationwide from hospital to hospital; all journeys that we were able to make because we have transport, but the added impact of petrol, car use, public transport and hotels on a family can be massive (not least the daily ‘can we go to the café for being brave’).
With various changes to drug regimes comes fluctuating weight and soreness – and a need to get different clothes, shoes, pillows, cushions and accessories on a regular basis. For the time Sebastian’s tracheostomy was in place someone trained had to be with him constantly – which meant hours of additional training for us and the staff at his school.
Perhaps more importantly, having experienced six months in intensive care encourages you to live life to the fullest if, like Sebastian, your child becomes well enough to become fit and active again.
People often mentioned that we approached things in a ‘business-like’ manner – but managing care packages, medical appointments and the impact on finances is just like running a business. Families of children with long-term health conditions will all have their own story about the hidden costs and challenges, but Young Lives vs Cancer suggested that a cancer diagnosis can cost a family between £650-£750 a month.
Not everyone is lucky enough to have employers like Latimer Arts College and Pen Green Centre for Children and Families – and that’s why we want to ensure that Sebastian’s legacy is to support those families.
We couldn’t use the generous sums raised by Team Sebastian to pay for treatment, but we can use it to support others who are on similar journeys to ours – whether it’s with petrol money, vouchers and gift cards to be handed out on the ward for food and drink, or for those sundries and essentials that become even more valuable during a hospital stay. We were able to make incredible memories with Sebastian last year – giving us hundreds of photos and videos to remember him by in a positive way – and if Sebastian’s legacy can help others do the same then we know it is money well spent.
We have been humbled and overwhelmed by the generosity of the whole community and know you will support is in helping other children and families in this way.
We have opened this website now to update on how, when and why we are donating money in Sebastian’s name.
Team Sebastian is not a registered charity. We are re-gifting money that was crowdfunded for us to support others where appropriate.