Last Wednesday, we took Fintan to the Royal London Hospital in Whitechapel. The visit was to allow the retinoblastoma specialists to examine Fintan's eyes whilst he was asleep under general anaesthetic. They were looking to confirm or discount Mr Benjamin's diagnosis of Rb and if confirmed, they would decide upon the prognosis and the course of treatment.
Fintan was an absolute angel. He was not allowed anything to eat after 8am, his procedure was not until 3pm, and yet he did not make a fuss, he did not cry the place down, he just contentedly played all day. If it had been me undergoing the examination, I know I would have been complaining!
At around 7pm, we were asked into a room where about 7 medical people were waiting; they were the team involved in making the diagnosis. Mr Hungerford, the world leader in retinoblastoma, then proceeded to tell us that Fintan does have bilateral retinoblastoma, a cancer which develops in the retina. He said that the success rate for treating Rb is excellent, in fact we are told that in 25 years, Mr Hungerford has not lost a patient. We were told that because Fintan has tumours in both eyes, they would first be treating him with chemotherapy, after 6 courses of chemo, if the cancer has not been killed they would re-evaluate the treatment. The tumours are growing in the centre of Fintan's retinas, so his prospect for detailed central vision is poor, although he should have reasonable peripheral vision. This will be useful for navigation and independent living and he may well be able to read large print, and perhaps smaller print with the help of a low vision aid and good illumination.
Fintan will be having his chemo treatment at the John Radcliffe Hospital in Oxford, this will be fortnightly. Each course is three sessions of chemo, each lasting 7 hours. Just before the 3rd course he will go back to the Royal London and have his eyes examined again. The treatment will last about 6 months in total. During his treatment, his hair will thin and he will feel crap, he will also be susceptible to colds and infections when his blood count is low. But, apparently the chemo protocol used for Rb is not as bad as some of the other cancers and children "thrive" on it.
Wednesday was a physically and emotionally exhausting day, but both Fiona and I now feel much more positive about the outcome of Fintan's treatment.
Fintan was an absolute angel. He was not allowed anything to eat after 8am, his procedure was not until 3pm, and yet he did not make a fuss, he did not cry the place down, he just contentedly played all day. If it had been me undergoing the examination, I know I would have been complaining!
At around 7pm, we were asked into a room where about 7 medical people were waiting; they were the team involved in making the diagnosis. Mr Hungerford, the world leader in retinoblastoma, then proceeded to tell us that Fintan does have bilateral retinoblastoma, a cancer which develops in the retina. He said that the success rate for treating Rb is excellent, in fact we are told that in 25 years, Mr Hungerford has not lost a patient. We were told that because Fintan has tumours in both eyes, they would first be treating him with chemotherapy, after 6 courses of chemo, if the cancer has not been killed they would re-evaluate the treatment. The tumours are growing in the centre of Fintan's retinas, so his prospect for detailed central vision is poor, although he should have reasonable peripheral vision. This will be useful for navigation and independent living and he may well be able to read large print, and perhaps smaller print with the help of a low vision aid and good illumination.
Fintan will be having his chemo treatment at the John Radcliffe Hospital in Oxford, this will be fortnightly. Each course is three sessions of chemo, each lasting 7 hours. Just before the 3rd course he will go back to the Royal London and have his eyes examined again. The treatment will last about 6 months in total. During his treatment, his hair will thin and he will feel crap, he will also be susceptible to colds and infections when his blood count is low. But, apparently the chemo protocol used for Rb is not as bad as some of the other cancers and children "thrive" on it.
Wednesday was a physically and emotionally exhausting day, but both Fiona and I now feel much more positive about the outcome of Fintan's treatment.
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