Isita’s class teacher Abby Millen has been coming into hospital regularly over the past six months, bringing news, good wishes and creations of card, paint and glitter from her classmates. She has also been coordinating with Kate who comes to teach Isita every day so that she is still in touch and making progress. Most recently Miss Millen came in with a book full of photographs and messages from the whole class showing what they have been up to. Because Isita is so well right now she may even be able to spend bit of time in the class with all her friends next week.
Abby Millen is doing something even more amazing. On 25 June she is swimming the Henley Classic at dawn to raise money for GOSH. This involves swimming the River Thames upriver along the rowing course early in the morning of the regatta’s first day. She has told us that she wants the money to be directed into areas which will help Isita, so the money will help advance research into the treatment of neuroblastoma and also to support the system of play specialists who are so important for keeping the children’s spirits up during long stays in hospital.
It is most certainly in our interests – as well as those of every other family in our situation – that research is well-funded and advances as rapidly as possible. In the UK, only 100 children a year are diagnosed with neuroblastoma, 25 in the Netherlands, and similarly small numbers elsewhere. This isn’t a disease which attracts the attention of big pharma. Nevertheless, huge advances are in the offing. The immunology and antibody therapies which are currently being developed will eventually provide hope even in cases where a successfully eradicated cancer has relapsed.
We are in an incredibly fortunate position of not having to raise money for Isita’s actual treatment, because it is on the NHS. Even if we do have to go private at some point it – most likely for the immunology at the very end – it will almost certainly be covered by our health insurance. So, we don’t have to think about the bills, and of course we don’t get told what they are. Every so often we get a hint of what is involved – for instance the new anti-viral drug they started giving Isita on Tuesday was couriered specially from specialist drug manufacturer in the US which has released it on compassionate grounds. It isn’t available in the UK otherwise. Lord knows how much the chemotherapy and stem cell harvesting and everything else will have cost by the time we are through.
We are extremely thankful that we live in a society with an advanced form of social insurance to support us through this, and also to be treated in a hospital as brilliant as GOSH. Once this is all over we will certainly be helping to raise money for it. I am thinking of entering the Boston Rowing Marathon in my single scull in September 2018 (that’s on the River Witham in Lincolnshire not the Charles in Massachusetts in case you are wondering). But the sooner new advances in treatment are made the better. So support Abby Millen now!