Yesterday we had our meeting with the oncologist. It was a long and pretty grim and difficult discussion. Firstly she told us that she had presented Massimo’s case at the UK Children’s Cancer Group as mentioned in our entry on 15th January. There were lots of people there and the response she got ranged from one extreme to other. Some doctors felt that she shouldn’t be treating Massimo at all. Their feeling was that the quality of life that Massimo could expect should the tumour disappear, shrink or otherwise be effected, would be such that it would be kinder and better to allow Massimo to enjoy what life he has left without further intervention. At the other end of the spectrum there were plenty of doctors who felt that she was doing the right thing and that we should give the chemo he is on a little longer to have an effect and take it from there. We were therefore asked what we wanted to do, whether withdraw treatment or continue.
The oncologist explained that once the tumour is gone or is shrunk to a reasonable size there would be severe tracheal malacia left. This means that his trachea will never be as strong and rigid as it should be, it will always be floppy and difficult to maintain open and Massimo will always be severely disabled by it. What the actual ins and outs of tracheal malacia are and what the current methods of assisting patients with this problem are, is something we will need to discuss with a tracheal expert, however all she does know is that it is a severe problem and an incurable one. There will also be severe damage to all the nerves that run in that part of the body and he will probably never be able to swallow.
Our decision was easy: to continue treatment. We will continue his chemotherapy with the current drugs he is on, until we get to a full year’s chemotherapy or 4 complete cycles and therefore Massimo is due to have his last dose on 7th June 2004. I’ve just checked and Massimo had his first dose of chemotherapy on 18th July 2003, so it will be just under one year. We are also going to introduce a daily oral drug which is normally used with prostate cancer and breast cancer and which is an oestrogen blocker as this has been seen to assist in at least one other case with a tumour of a similar nature to Massimo’s. After his last dose of chemo, Massimo will have the usual MRI scan and bronchoscopy and we will then see where we are and what to do next.
The reality that there are some doctors who would consider the kindest option for Massimo is to withdraw any kind of treatment and to let nature take its course is very hard to deal with. To be told that in all likelihood, the best outcome is that the tumour will leave massive damage, and that his floppy airway is going to pose significant further complications makes things even harder. We have always known, from snippets of what various doctors have said, that he would likely have some damage. To have it spelled out rather more graphically does not allow for any convenient optimistic delusions.