Disappointing News

Fintan returned to the Royal London Hospital yesterday (Wednesday 12th) for his 6 week follow-up EUA; unfortunately, it was a very disappointing result.  The 'seed' or debris that had previously been spotted and was being watched very closely had landed on the retina, taken a blood supply and is actively growing.  It has been treated with some cryotherapy and Fintan returns in 3 weeks to see how it has responded and to give a second dose.  We are trying to stay positive and hope that the cryotherapy works, however, if it is not successful there are still some other options to treat it (a radioactive plaque or intra-arterial chemotherapy).

This new activity is located near the front of the eye, behind the iris, so should not impact too greatly on his already limited vision, but the treatment seemed to cause him more pain and discomfort this time.  It is difficult to know whether it is just because Fintan is older now and has more understanding of pain and where it is coming from, or whether it was because he hasn't had cryotherapy for some time or the position of treated area.  He was very distressed when he came round from his anaesthetic, because he couldn't open his eye properly, it was painful and he said he couldn't see and despite being given pain relief and anti-sickness medicines he was quite sick.  However, several scotch pancakes and his favourite salt and vinegar crisps later and discovering Santa had left a present whilst he was asleep, Fintan was soon back to his chatty, bubbly self!!

Hopefully, Christmas will provide a much needed distraction from this worrying time and the New Year brings us better news.

No pictures from the hospital, but here's Fintan as a 'baby bat' in his Christmas Play this morning!

Better News

Fintan returned to the Royal London Hospital on Wednesday (31st) for his EUA following his check-up last month that had caused a little concern.  However, we are very pleased to report that his left eye appears stable and the "white spot" that his consultant had seen last time had not changed shape or size.  The eye still needs to be watched closely, so Fintan will return in 6 weeks for another EUA.  

Fintan had fun dressing up as a 'Zombie Policemen' for his hospital visit and took great delight in scaring everyone on the ward (or just making them laugh)!  

Fintan has to 'pop' back to the hospital on Monday afternoon for some maintenance on his artificial eye, something we normally have done at a visiting clinic at Wycombe Hospital, but this on hold for the moment, so we have to trek up to the Royal London where the National Artificial Eye Service is attending one of the Rb clinics!  We are hoping a much needed polish to Fintan's eye will help reduce the number of eye infections he has been suffering (this doesn't cause him any discomfort, but eye drops 4/5 times a day are quite inconvenient!).

 Post-anaesthetic crisps (salt and vinegar, as always!)

Feeling Better!

Update

Fintan was back at the Royal London Hospital last Wednesday (3rd October) for an EUA, following a very long 3 month gap since his last visit.  Unfortunately, another 'seed' has been seen in his left eye and, although it has not settled and obtained a blood supply, it needs to be watched very closely.  We return in 4 weeks (31st October) for another EUA to see whether there are any further changes in this eye and to start treatment if necessary; hopefully this would only require some cryotherapy (freeze) treatment.

On a more positive note, despite recurrent infections in his right artificial eye, the socket looks healthy and there are no concerns with this eye.  Also, an eye test showed that Fintan's vision remains stable (and that mummy needs to get her eyes tested!!)

Fintan has asked us a lot more questions about his eyes following this visit; suggesting that they take out his eye, let the seed fly away and then put his eye back - if only it were that simple!  He has obviously reached an age where he is not quite so accepting of the situation and wants to know why.  However, he is still happy and full of excitement as he has just had his school laptop delivered and is learning to touch type!

No pictures from the hospital this time, but a couple taken from the CHECT 25th Anniversary Weekend in Northampton 5-7 October - which was enjoyed by all!

'School of Rock'

Pirate Fun!

Belated Update

After a 10 week gap, Fintan was back at the Royal London on 11 July.  His EAU brought us good news; his right eye socket looked good and his left eye was stable with no obvious changes to the area on the retina where there has been recent activity.  Fintan's consultants were happy and confident enough to suggest 3/4 months until his next appointment; we opted for a 3 month gap so he will be back in October for another EUA.

Drink up Fintan, time to go!
 

Better News

Following a 6 week gap, Fintan was back at the Royal London Hospital yesterday for an EUA.  We are delighted to report that the suspicious area in his left eye, that had been treated with cryotherapy, now appears to be stable and there is no obvious signs of activity.  We had prepared ourselves for far less favourable news and were almost surprised that he did not require any further treatment (for the moment)!

The consultants are keen to keep a close watch on the eye and Fintan will return in 10 weeks for another EUA.

Fintan seemed more tolerant of all the procedures this visit (apart from having to wear his identity bracelet!) and made a quick recovery after his anaesthetic enabling us to escape from the hospital at a more reasonable time!

                                            

Wait and Watch

Fintan returned to the Royal London on Wednesday (21 March) for his EUA and second application of cryotherapy. Unfortunately, it is still not obvious whether the treatment was successful and it has been decided to have his next EUA in 6 weeks; as the area they are currently looking at is so small this timescale would allow any tumour activity that may occur to make itself more evident. Should he need anymore treatment it would most likely be a radioactive plaque.

Wacky Races again!

However, Fintan remains fit and well and his energy levels exceed all other family members! He was incredibly good having his anaesthetic this time - we had reverted back to the face mask to administer his gas following the disastrous attempt last time to use a cannula in the back of his hand. Fintan stated he was "not going to cry and be very brave" and kept repeating this to the amusement of the anaesthetic team - he was very calm going to sleep and when he came round from his anaesthetic he was also much calmer and in a better mood!

Post anaesthetic grub!

Since our last visit to the Royal London, we have all been on Fintan's special Make-A-Wish trip to DisneyWorld Florida and had an absolutely fantastic time! We are all hoping to make a return visit some time in the future.

Barnaby also celebrated his 8th Birthday on Thursday and we are looking forward to his party tomorrow afternoon!

Disappointing News

After a very long 12 week gap, we were back at the Royal London Hospital yesterday (Wed 29 Feb) and unfortunately Fintan's EUA brought us disappointing news. His left 'good' eye was showing signs of activity; a seed that has been drifting around for some time had settled on the retina and become active. It was treated with some cryotherapy and we return in 3 weeks for another EUA and second application of cryotherapy. Fintan's consultant reassured us that we shouldn't be too concerned, as the activity was in an easily accessible area for treatment and it is not like any of his major previous relapses.

Despite having had my suspicions that something was not quite right with his eye, the news was still quite a blow to us and very disappointing. On a more positive note, his vision test prior to treatment showed that his sight was stable and no change since his last test.

Pre-treatment fun!

The Royal London Hospital has now started moving into its new building and we had the pleasure of being treated in the new Children's Hospital Day Care Ward - very spacious and clean, but a nightmare to find your way around with numerous "security" lifts that only stop at certain floors! Although the morning and afternoon lists had been quite short, there was quite a lot of delays. Fintan had agreed to have his anaesthetic administered via a cannula in his hand inserted whilst awake rather than using the face mask that he hates, however, I don't think we will try this again for a while - not very successful! Fintan was very groggy when he came round from his anaesthetic and the pain from the cryotherapy makes him very nauseous so he was not a happy boy! A dose of anti-sickness medicine and something to eat and drink soon got him back to normal and we finally left the ward at 8.00pm.

Post-anaesthetic strop!

We were meant to be going on Fintan's "Make a Wish" trip to Disneyland Florida over the February 1/2 term holiday, but this was postponed due to Fintan and Oliver contracting chicken pox. However, we are now jetting off on Saturday for a week of sunshine and Mickey and hoping this will take our mind off Fintan's little set back!