A week last Thursday, Fintan had his central line removed at Wycombe hospital. The last infection Fintan had in his line was pretty nasty and, as he no longer needs the line to administer his chemotherapy, it was decided to remove it as soon as possible. Wycombe would not normally give babies under 1 year a general anaesthetic, but Fintan's consultant kindly arranged for a willing anaesthetist and surgeon to do the deed!
As always, Fintan was not too happy when he came round from the anaesthetic, but a bottle of milk and a couple of hours sleep later he was a different boy. He woke up with the biggest smile I have seen for a long time and seemed so much happier.
After the line was removed, Fintan had a cannula in his foot for 2 days to administer the last of his antibiotics, but was line free and at home by Good Friday and, for the first time since November 13th, Fintan was able to have a bath on Easter Monday. The video will show you how much he enjoyed that!
It appears that over the last 4 months, Fintan's central line had become quite a discomfort to him. The difference in him is amazing, although Fintan never used to grumble and was always smiling, he is now full of beans and is even more adorable! Also, within a week of coming home he started crawling and there is now no stopping him!
It was Barnaby's Birthday over the Easter weekend and he had a great day. His cousins, aunts, uncles and grandparents helped him eat his birthday cake on Easter Sunday and we went to Wycombe's new bowling alley on Monday. Barnaby demonstrated beginner's luck and won with a run of 7 spares and 1 strike! Archie claims to have won the second game, but we have a different memory of the scores. Although Fintan didn't have a go, he did enjoy a spot of bum shuffling and polished the lanes!
Anyway, next Wednesday Fintan is having some more cryotherapy on the new tumours in his right eye and will also have his eyes examined at the same time. We will update you on how the day goes.
Saturday 29 March 2008
Wednesday 19 March 2008
Quick Update
Fintan has had a spot of bother with his Hickman line once again.
Last week, we got the feeling something was not quite right as Fintan's temperature was all up and down for a few days, also the area where his line comes out of his chest just didn't seem right. On Sunday morning, he developed a fever and so we took him into Wycombe hospital. Unfortunately he had to stay there until this evening when he and Fiona were allowed to come home.
The good news is that after a couple of days of umm-ing and arrr-ing, the doctors decided that it was best to take the line out now to stop the constant reoccurrence of infections in the line. So tomorrow morning he will be going back into Wycombe hospital in order for them to carry out the short operation to remove it.
Although he will require a cannula in his wrist for a few days to administer IV antibiotics, it will be a real relief to have it taken out. He will at long last be able to enjoy a long play in the bath, and of course the risk of infection will be vastly reduced. But most importantly, we will be able to give him a nice cuddle without pressing against his tubes and bits.
I'm sorry for the brief update, but it's been a tiring few days. I shall write another entry over the next few days to let you know how he gets on tomorrow.
Last week, we got the feeling something was not quite right as Fintan's temperature was all up and down for a few days, also the area where his line comes out of his chest just didn't seem right. On Sunday morning, he developed a fever and so we took him into Wycombe hospital. Unfortunately he had to stay there until this evening when he and Fiona were allowed to come home.
The good news is that after a couple of days of umm-ing and arrr-ing, the doctors decided that it was best to take the line out now to stop the constant reoccurrence of infections in the line. So tomorrow morning he will be going back into Wycombe hospital in order for them to carry out the short operation to remove it.
Although he will require a cannula in his wrist for a few days to administer IV antibiotics, it will be a real relief to have it taken out. He will at long last be able to enjoy a long play in the bath, and of course the risk of infection will be vastly reduced. But most importantly, we will be able to give him a nice cuddle without pressing against his tubes and bits.
I'm sorry for the brief update, but it's been a tiring few days. I shall write another entry over the next few days to let you know how he gets on tomorrow.
Sunday 9 March 2008
Last Chemo
Last week was a busy one for Fintan. On Wednesday he was at the Royal London Hospital for another eye examination and on Thursday he was in Oxford having his final cycle of chemo for this round of treatment.
Wednesday brought mixed news.
Firstly there is good news in that the existing tumours appeared inactive; Mr Hungerford could not see any signs of new growth. However, there is a slight set-back -Fintan has three new small tumours in the peripheral of his right eye. We have been told that it is not entirely unexpected as the blood vessels get much smaller towards the edges of the retina, restricting the ingress of chemotherapy drugs. We had tried to prepare for such news, but this was still quite disappointing. Mr Hungerford chose to treat the new tumours whilst Fintan was under anaesthetic using cryotherapy, a technique of freezing the tumours with an extremely cold, pen-like instrument; in a similar way you might have a wart removed. They will repeat the treatment in four weeks whilst monitoring the development of the tumours.
On a more positive note, we met with the genetics counsellor and discussed the implications of Fintan's condition on the rest of the family. She explained to us that, even though Fintan has the hereditary form of retinoblastoma, it is more than likely that the faulty gene started in Fintan. This means that there is no more risk of our family member's children developing the disease than any other family. This does also mean that there is a 50% chance that Fintan will pass the faulty gene onto any children he may have. I would love to give you the full explanation as to how they came to this conclusion, but if you can remember any genetics from school you’ll appreciate it would be a very lengthy and confusing explanation!
Barnaby was tested in early January and it was confirmed he is not a carrier of Rb, so will not develop the condition (there was another very complex test which determined this -for my nerd friends reading this, it's a similar technique that's used for detecting computer viruses! -again, I don't think I should go into it now!) Archie will not be tested unless it is discovered the disease did not start in Fintan, as although he could still be a Rb carrier the condition rarely develops in children over the age of five.
I must stress that this is still all conjecture, as they are yet to find the mutant gene in Fintan's genetic code (in fairness there are over 72,000 different genes, and they have to check them all…by hand!). Although they have said that with the family history etc, they would be very, very surprised if they found the faulty gene in Fiona or me.
Anyway, Thursday...
On one hand, in a strangely semi-institutionalised way, it was kind of sad that it may have been our last visit to Oxford. It's a bit difficult to explain, and Fiona is more articulate with this, but when visiting the hospital, for a day you can hand Fintan and all the worry over to the doctors and nurses. On the other, it's a great relief to think, that for now at least, there will be only a few more weeks of taking temperatures, administering antibiotics, having nasal tubes re-fitted (three times already this time - thanks Fintan!) and hospital stays, etc., but more importantly, Fintan will not have to undergo such horrible treatment.
During this visit, Fintan was brilliant. He was as unfazed as ever, and hasn't really been that sick since. I think it may have been the support of his big brothers who came along this time, and if watching the TV, playing in the playroom and eating, eating and eating some more counts as support, they certainly gave it!
I think I have probably rattled on for long enough now, apologies for the length - believe me, this was the succinct version!
Wednesday brought mixed news.
Firstly there is good news in that the existing tumours appeared inactive; Mr Hungerford could not see any signs of new growth. However, there is a slight set-back -Fintan has three new small tumours in the peripheral of his right eye. We have been told that it is not entirely unexpected as the blood vessels get much smaller towards the edges of the retina, restricting the ingress of chemotherapy drugs. We had tried to prepare for such news, but this was still quite disappointing. Mr Hungerford chose to treat the new tumours whilst Fintan was under anaesthetic using cryotherapy, a technique of freezing the tumours with an extremely cold, pen-like instrument; in a similar way you might have a wart removed. They will repeat the treatment in four weeks whilst monitoring the development of the tumours.
On a more positive note, we met with the genetics counsellor and discussed the implications of Fintan's condition on the rest of the family. She explained to us that, even though Fintan has the hereditary form of retinoblastoma, it is more than likely that the faulty gene started in Fintan. This means that there is no more risk of our family member's children developing the disease than any other family. This does also mean that there is a 50% chance that Fintan will pass the faulty gene onto any children he may have. I would love to give you the full explanation as to how they came to this conclusion, but if you can remember any genetics from school you’ll appreciate it would be a very lengthy and confusing explanation!
Barnaby was tested in early January and it was confirmed he is not a carrier of Rb, so will not develop the condition (there was another very complex test which determined this -for my nerd friends reading this, it's a similar technique that's used for detecting computer viruses! -again, I don't think I should go into it now!) Archie will not be tested unless it is discovered the disease did not start in Fintan, as although he could still be a Rb carrier the condition rarely develops in children over the age of five.
I must stress that this is still all conjecture, as they are yet to find the mutant gene in Fintan's genetic code (in fairness there are over 72,000 different genes, and they have to check them all…by hand!). Although they have said that with the family history etc, they would be very, very surprised if they found the faulty gene in Fiona or me.
Anyway, Thursday...
On one hand, in a strangely semi-institutionalised way, it was kind of sad that it may have been our last visit to Oxford. It's a bit difficult to explain, and Fiona is more articulate with this, but when visiting the hospital, for a day you can hand Fintan and all the worry over to the doctors and nurses. On the other, it's a great relief to think, that for now at least, there will be only a few more weeks of taking temperatures, administering antibiotics, having nasal tubes re-fitted (three times already this time - thanks Fintan!) and hospital stays, etc., but more importantly, Fintan will not have to undergo such horrible treatment.
During this visit, Fintan was brilliant. He was as unfazed as ever, and hasn't really been that sick since. I think it may have been the support of his big brothers who came along this time, and if watching the TV, playing in the playroom and eating, eating and eating some more counts as support, they certainly gave it!
I think I have probably rattled on for long enough now, apologies for the length - believe me, this was the succinct version!
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