Quick Update

Fintan made it to the Royal London for his EUA today. He was first on the morning list and by 9.00am we had the good news that his right eye socket is healing well and all looking good in his left eye. After a little nap to recover from his anaesthetic, some toast and pancakes and a quick play he was ready to head home - just in time for lunch!

Due to start 2nd cycle of chemotherapy at GOSH tomorrow and hopefully home on Saturday.

(Just heard - no bed available, so up to GOSH for outpatients tomorrow, then try again for bed on Friday!)

Story time with Tara

Unscheduled Hospital Visit No.1 !

Having been neutropenic (when the body's ability to fight bacterial infection is greatly reduced) for much of last week, Fintan developed a temperature on Friday and had to be admitted to Stoke Mandeville Hospital. Blood cultures were taken and Fintan put on strong antibiotics for at least 48 hours whilst we waited for the results. Fintan was brighter by Sunday morning and was even allowed home for a few hours in the afternoon, but had to return to Stoke Sunday evening (with a little less hair - it was falling out in clumps and getting everywhere so James gave him a hair cut!)

The blood culture results came back clear this morning which meant the antibiotics could stop and Fintan was allowed home, however, not before waiting several hours for medicines to come up from pharmacy (it's the same in every hospital!!)

Fintan is due at the Royal London on Wednesday for an EUA on his left eye, but we have to wait to see if his blood count improves enough. He is then due to have his 2nd cycle of chemotherapy at GOSH on Thursday, again only if his blood count has improved further!

If we also consider Barnaby's sickness bug following his birthday and the flat tyre I had on the way to Stoke Mandeville on Friday, last week was not a good one! Thanks again to Neil, Tom and Elspeth for getting the car mobile again and Esther and Tessa for looking after the boys over the weekend.

Fintan seems to quite like his new hair cut and happy to show it off to everyone!

Chemo 1 of 4

Fintan was at Great Ormond Street Hospital (GOSH) last week for his first cycle of chemotherapy. He had an outpatients appointment on Thursday (10th) for an Echo Cardiogram - although there was really nothing to it Fintan became quite hysterical. He then had to have his weight, height and blood pressure taken; I don't think any accurate measurements were obtained as, again, he was uncooperative and hysterical. A very stressful morning!

We were back at GOSH early Friday morning for his Hickman Line insertion - this had been scheduled for 9.30am, but due to an emergency he did not go down to theatre until 1.3opm. He was back on the ward by about 3.00pm and slept off the anaesthetic for a couple of hours. Chemotherapy started at 7.30pm (Fri eve) - a combination of drugs and lots of fluids - then another dose started 24 hours later, finishing at 7.30pm (Sun eve).

Fintan coped really well - most of the time he was happy to lie back in his bed and watch TV! I did encourage him to take 'Robbie Robot' (through which his chemo and fluids are administered) for a walk about the ward a couple of times a day and we even managed to visit the shop in the main reception area on Sunday morning.

We got home late Sunday night, Monday he was still suffering a little with nausea, but was ready to go back to Pre-school on Tuesday morning! Despite looking rather pale and having lost a little weight, his energy levels do not seem to have been too badly affected and, as always, he is still smiling!

Fintan is due back at GOSH on 31st March - in the meantime we have Barnaby's birthday to celebrate!

Zzzzzzz - post anaesthetic

Tara (a photo on a stick was good enough for Fintan!)

TV dinner!

Zzzz - again!

Another Course of Chemotherapy

Fintan was back at the Royal London today for a check on his enucleated eye. All the swelling and bruising has gone down, there are no signs of infection and the consultant was pleased with how the eye has healed. Fintan even allowed Tara (play specialist) to remove his temporary blue conformer and replace it with a brown one; he didn't make any fuss at all and it does look a lot better!

However, the visit was not all good news. Unfortunately, tests on the enucleated eye show that the tumour activity had been very aggressive and that the tumour had penetrated the layer of eye beyond the retina. Fintan will now need a precautionary 2nd line course of chemotherapy in case any cancer cells have spread beyond the eye. This chemo will be 4 cycles 3 weeks apart, stronger than his original chemo and he will have to stay in hospital for 2/3 days for each cycle.

Fintan has shown amazing resilience so far in all the treatments he has undergone and although he will have a tough few months, we are sure he will come bouncing back!

We have decided that he will have his treatment at Great Ormond Street Hospital, which will include visits from his favourite members of the Retinoblastoma team - Laura and Tara! Treatment should start next week.

Showing off his (nearly) matching eyes!!

Bouncing Back!

Fintan underwent his enucleation (eye removal) on Wednesday and all went well. He was in theatre for a couple of hours so was rather groggy and sleepy when returned to us; he slept the anaesthetic off and was then transferred to his overnight ward with daddy.

The original plan was that he would be home on Thursday morning, but as he suffered some bleeding during surgery it was decided that the pressure dressing on his eye should remain in place until Friday. I was still able to pay a visit on Thursday with Oliver and Fintan was on fine form and fit enough to have some fun in the ball pit in the hospital sensory room.

Fintan's eye dressing was removed on Friday morning and his consultant was happy to let him go home! His eye is a little bruised and swollen, particularly in the mornings, but by lunchtime the swelling goes down enough to be able to see his blue conformer (temporary artificial eye) - Fintan's natural eye colour is hazel, so we expected him to be given a brown one!

Fintan is coping incredibly well and does not seem at all bothered by his 'new eye'; on his way home from the hospital he did say he thought the doctors had forgotten to take out his eye! He is running around the house like a tornado and is bright and bubbly as always!

Fintan's eye looks a lot better than we had expected and, in fact, his face where the plaster has caused a reaction looks worse!! Unfortunately, he does not like having his eye cleaned and his drops, but he is making a little less fuss each time we do eye care. We are not sure how he will react if his conformer falls out (and we have been warned this is likely to happen) we just hope it doesn't happen somewhere public!

We are back at the Royal London on 2nd March for a check up on the enucleated eye - Fintan will not need an anaesthetic for this which will please him - and a vision test. He will still need an EUA (examination under anesthetic) on his left eye in the next month or two and we await the results of tests on his enucleated eye. The National Artificial Eye Service should be contacting us soon about his permanent eye, but the temporary conformer has to remain in place for at least 6 weeks whilst everything heals.

We are all feeling a little more relaxed now that the enucleation is done and pleased that Fintan does not seem too phased by what he has been through - his acceptance of the situation and his confident and happy nature amazes us. We are very proud of him!

Fun in the ball pit!

Biscuits and TV!

Sick bowl use No.1 - hat

Sick bowl use No.2 - Gruffalo claw (a.k.a. cannula concealer)

Sick bowl use No.3 - the Gruffalo

Bad News

Fintan was back at the Royal London this week for what has become his monthly EUA. Unfortunately, we had the news we have been dreading for a long time - his right eye is again showing signs of activity and there is nothing more that can be done to save it; it will be removed next Wednesday (16 Feb).

We had noticed a change in Fintan's eye over the past couple of weeks; his eye seemed quite bloodshot, squinting more than normal and the pupil was not dilating as much as it should and had become misshapen. When the consultants carried out the EUA, although the eye is still mostly obscured by an old retinal bleed, they noticed quite obvious changes to the eye indicating that there is tumour activity again. The only option is to remove the eye as soon as possible.

As Fintan has not had any vision in this eye for some time, the loss of the eye should not have any significant affects on his current vision levels. When they remove the eye, they will insert a temporary prosthetic eye and he will have a little discomfort for a while, but will only have to remain in hospital overnight.

We have mixed emotions about the enucleation (eye removal); the positive is that this troublesome eye will be gone taking away the risks it poses to Fintan, but the negative is a lifetime of prosthetic eye care and his left eye could still possibly relapse.

However, Fintan has taken the news incredibly well and we are very proud of him!

Due to Fintan being seen early in the day and James having to dash off to catch a flight to the US, the camera didn't even get unpacked, but Fintan is always more than willing to pose for a picture!

Update

Fintan was back at the Royal London last Wednesday (12 Jan) for an EUA. His left eye, which had the recent radioactive plaque treatment, is still looking good and Fintan's vision in this eye remains stable. His right eye is still obscured by the retinal bleed, but it does appear to be very slowly clearing. The consultants need to keep a close watch on this eye, so Fintan is back in 4 weeks (9 Feb) for another EUA; hopefully the bleed will have cleared enough to give a better view of what is going on in this eye.

Fintan still likes to kick and scream when he comes round from his anaesthetic and Oliver watched on with brotherly concern (or was it bewilderment!)....

.....but a packet of crisps soon put things right!

Better News!

Fintan was back at the Royal London on 1st December (a week later than scheduled due to him being poorly) for an EUA. We are pleased to report that the radioactive plaque treatment to Fintan's left eye appears to have been successful and the tumours are no longer active.

However, his right eye is still being obscured by retinal bleeds and some areas have now clotted; Fintan is not able to see much with this eye and the consultants' view of the retina is very limited so they cannot be sure if there are any active tumours. They are not too worried at the moment as there are no obvious signs of activity and were happy to give Fintan an 8 week gap before his next appointment. This longer interval made us a little nervous, but we reached a compromise of a 6 week gap and Fintan is due back on 12th January.

We are hoping that 2011 will be a better year for Fintan and that his visits to the Hospital become a little less regular!

Trying to remain upright whilst sleeping!

Wishing you a Merry Christmas and Happy New Year!

Radioactive Plaque

Fintan was admitted to the Royal London last Wednesday (27th Oct) for his radioactive plaque treatment. He went down to theatre at about 4pm for the plaque to be inserted and was back in recovery just before 6pm. At this point, myself and the boys set off home leaving James to deal with Fintan coming round from his anaesthetic and to start the 3 day 15 hour isolation ordeal!

Despite Fintan not being able to see a thing except light and dark and confined to a small room, he coped admirably. By Friday he had discovered a spot in his right eye (the one not being treated, but obscured by a bleed) through which he could see and if he tucked his chin into his chest he was able to watch TV and see what he was eating (probably not a good thing!).

Tara, Rb Play Specialist, and Laura, Rb Nurse, were regular visitors to Fintan's room and helped to keep him occupied. I made a brief visit on Friday, whilst James had time out to wish Oliver a Happy 1st Birthday, then the boys and myself were taken out to the London Aquarium by Tara and Laura - a great time was had by all!

Nanny and Grandpa helped to pass the time on Saturday. Fintan had a few low periods, but with the help of some new DVDs and a fantastic treasure chest full of chocolate money from Tara and Laura, I think Fintan actually enjoyed himself at times!

The plaque was removed with no complications on Sunday morning (31st Oct) and Fintan was back home by 6pm, just in time for a steady stream of trick or treaters!! It is lovely to have him home and he has been on fine form since his return.

We now have to wait a few weeks before he has an EUA to see whether the tumour has shrunk. In the meantime, his vision seems relatively good despite having to keep his left eye dilated and the bleed in his right eye.

We are back at the Royal London on 24th November - until then ....

Pre-anaesthetic apprehension

Happy 1st Birthday Oliver!

Fun at the London Aquarium

Meanwhile, back on board the Royal London...

Nearly time to go home!

Quick Update

Just found out Fintan's plaque has to remain in place for 3 days 15 hours! He will have it put in on Wednesday (27th) afternoon and removed Sunday (31st) morning. Unfortunately, we will have to move Oliver's birthday celebration to the following week (Sun 7 Nov), but he won't know any different and poor Fintan needs a little time to recover!! Until then....

A Little Step Back

Fintan was back at the Royal London on Wednesday (6 Oct) for an EUA; the news was not so good this time.

The bleed in his right eye is still obscuring the tumours and it is difficult for the consultants to be sure whether they are active or not, so they will continue to monitor this eye. Unfortunately, his left eye now needs some treatment. An area that has previously been treated with cryotherapy has become active again - it appears to be quite slow growing but the change in size of the tumour is now more obvious.

Fintan will have radioactive plaque treatment in about 3 weeks. The plaque will be attached to his left eye under anaesthetic and stay in place for 2/3 days. The eye will be patched over and he will have to remain in isolation until the plaque is removed. Fintan had a plaque in his right eye about 18 months ago and coped really well, but we are not so sure he will find it as easy this time. Being older he is far more aware of what is happening and with the vision in his right eye greatly reduced due to the bleed and his 'good' eye patched up, it will be harder to keep him occupied (James will have the pleasure of staying at the hospital with him!)

Oliver's 1st Birthday is on 29 October, so hopefully Fintan will be fighting fit by Sunday 31st for a Halloween themed celebration!

Beep Beep!

Mmmm - post anaesthetic crisps!

Another Quick Update

Fintan has been back to the Royal London for a couple of visits since the last update.

After the appointment 4 weeks ago he had been complaining of pain in his right eye so after speaking with the hospital they thought it was best for the doctor to take a look. So 2 weeks ago he was seen awake (no smelly sleep needed on this occasion) and Mr Reddy decided that there was nothing obviously wrong and suggested it was the inflammation and bleeding from the treatment that was causing the pain. He asked us to continue with Fintan's eye cream for a few more days.

Last Wednesday (8th) Fintan was back again, this time for a Smelly Sleep (EUA) and despite everyone being very tired (of which we understand there is photographic evidence, thanks Tara!) Fintan was really good and had no treatment on this occasion. Mr Sagoo said that the left eye seems stable and in fact the vision had actually improved in this eye, and that he chose not to treat the right eye as there was substantial bleeding from the previous treatment.

As I'm sure you have guessed, he'll be back at the Royal London in 4 weeks for more of the same!

Quick Update From Devon

Fintan was back at the Royal London last Wednesday (11 Aug). As it is the summer holidays, Archie and Barnaby joined us which was a distraction for Fintan.

The examination resulted in fairly positive news. The bleeding that was obscuring the relapsed areas of tumour has nearly cleared and the consultants reported that the suspicious area in Fintan’s left eye seems stable (no treatment required) and no change in his right eye, however they chose to apply some cryotherapy to this area in order to consolidate the treatment. Fintan is back at The Royal London in 4 weeks (8 Sept).

On Friday we all headed down to Devon for what is becoming a regular holiday on Wembworthy Down Farm. The boys are all really enjoying the freedom and Oliver especially likes the flat lawns to crawl on. The weather has been lovely, but rain is forecast for the rest of the week…wonderful!

Quick Update

We were back at the Royal London on Wednesday (14 July) for Fintan's EUA. He had a second application of cryotherapy to the new area of relapse and the older area of relapse was observed. As there is considerable haemorraghing in the eye due to the cryotherapy it is obscuring possible activity, but Fintan's consultant did not see anything obvious. We are back in 4 weeks (11 August) and hopefully will have a better idea of what is going on then. His left eye remains stable.

We recently had Fintan registered as partially sighted, but we are now in the process of 'upgrading' this to severely partially sighted. The Specialist Teaching Service, who will be supporting Fintan throughout his educational years, can devote more time to him if he is registered severely partially sighted. They are also starting the process of Fintan's Statement of Educational Needs as he is due to start school in September 2011.

Until next month ......

Oliver mastering the bed controls!

Food!

Disappointing News

Fintan was back at the Royal London for his EUA last Wednesday (23rd June) and unfortunately his right eye is causing concern again.

After having had a very positive eye test in which Fintan's right eye was showing a slight visual improvement, we had the bad news that there are two areas of relapse in the eye. Cryotherapy was applied to an area of tumour which has been treated many times before and another area of new relapse was also treated; this new relapse will have a second application of cryotherapy in 3 weeks.

If the activity does not settle down over the next few visits, a radioactive plaque could possibly be applied but it would have to be shaped to fit over the two active areas. This is really our last option for this eye, but we are trying to be optimistic and hope the cryotherapy does the trick.

Fintan's left eye is currently stable, but this could all change by the next visit!

As always, Fintan coped really well, despite being more aware and anxious about procedures, etc, and struggling to come round from the anaesthetic - he was quite sick before we left the hospital, but fortunately in the Reception area and not our car!!

Anyway, on a much happier note, Fintan celebrated his 3rd Birthday a couple of weeks ago and had a fantastic Birthday weekend (as you can see for yourselves)!!

Zzzz ...... Hospital days are exhausting!

King Fintan celebrates his 3rd Birthday!

Looking Better!

Fintan was back at the Royal London last Wednesday (26 May) for his 2nd application of cryotherapy to his right eye and EUA. His right eye appears to have responded to the treatment and his left eye is stable.

Mr Sagoo (Mr Hungerford's replacement who works alongside Mr Reddy) reassured us that Fintan is doing really well and that although there is still haemorrhaging in both eyes it is a sign that the tumours are shrinking back. Both eyes need to be monitored closely for a while as there has been a lot of recent activity so we are due back in 4 weeks (23 June) for a check up.

We are feeling a little more optimistic - at least the talk of a radioactive plaque has stopped (for the moment!)

There is much excitement amongst the boys as Fintan has been granted a "Wish" by the Rays of Sunshine charity and Disneyland Florida has been mentioned. Ask Fintan what he wants to do and his response is "Go to America on an airplane dressed as a King"! However, this holiday would not happen until Fintan is nearer to 5 years, so the boys have a little while to wait!

Until next month..

Zzzzzzzzz

Update

Fintan was back at the Royal London last week (28th April) and we are glad to report that Mr Reddy was in agreement with Mr Hungerford regarding Fintan's left eye - the cryotherapy appears to have worked, but another light freeze was applied to be on the safe side. However, Mr Reddy picked up a suspicious area in Fintan's right eye; some more of the old haemorraghing had cleared showing some possible activity to which cryotherapy was applied.

Having had melphalan (the intra-arterial chemotherapy) only 6/7 months ago made us question the possibility of activity in the eye so soon, therefore, we consulted Mr Hungerford who advised he had looked long and hard at this suspicious area in Fintan's right eye but felt it was not active, however, an application of cryotherapy would do no harm. He also advised that there can be a recurrence/new activity following Melphalan. We seem to have so many questions at the moment and this helped to answer some of them.

Fintan is back at the Royal London on 26th May; hopefully we will have something a little more positive to report.

Cake time!

Mr H

We are pleased to report that Fintan was seen by Mr Hungerford at Moorfields Eye Hospital last week. Mr Hungerford observed the area in Fintan's left eye that is causing concern for Mr Reddy, but believes that it is no longer active. We are hoping the last application of cryotherapy has been successful and that Mr Reddy/Mr Sagoo will be in agreement with Mr H's findings.

After a long talk with Mr Hungerford we are feeling a little more reassured about Fintan, but are now apprehensive about what will happen if Mr Reddy suggests further treatment for him.

As always, Fintan coped admirably with his EUA - being in a strange hospital with different routines didn't affect him too much - and he made his usual post-anaesthetic demand for cake!

Brotherly love!

Fintan saving his cake from Oliver's impromptu game of football!

Long Overdue Update

Apologies for not updating the blog after Fintan's visit on 3rd February; there was not much to report as the cryotherapy appeared to have worked and his eyes seemed stable. An 8 week gap was suggested, we agreed on 6 weeks, but due to the Royal London rescheduling and then Fintan being unwell we ended up returning last Wednesday 31st March - 8 weeks after his last appointment! We did not manage to arrange an appointment with Mr Hungerford before his February check up at the Royal London and as his left eye seemed to have stabilised we decided to put this on hold.

Unfortunately, his EUA (examination under anaesthetic) last week showed activity in his left eye again. The haemorrhaging in this eye has considerably reduced giving a clearer view of the eye and we have been informed the activity is a recurrence and more cryotherapy applied, but we have our doubts that the previous cryotherapy may not have been as successful as thought. The plan is for Fintan to have another EUA in 4 weeks (28th April) and if the active area has not responded to the cryotherapy to consider further treatment - possibly a radioactive plaque.

We are going to arrange for Fintan to be seen by Mr Hungerford, as we would really value his opinion. This may mean he has to undergo two examinations under anaesthetic in a short space of time, but Fintan's left eye is his best visually and we have to do everything we can to retain as much vision in this eye.

On a more positive note, Fintan is wearing his full strength glasses (all the time!) and they really seem to help. About 4 weeks ago Fintan started Pre-school and he is loving it - on his first day I was expecting to stay with him for an hour or so, but after about 20 minutes he politely asked me to leave! The loft conversion is complete, the builders and scaffolding gone and it is now just a case of clearing up, getting the carpets laid and a little decorating!

Until next month....

Post anaesthetic cake!

Fintan ruling the roost at home!

Happy New Year!

Apologies for not having updated the blog after Fintan's hospital appointment on 9th December - we are still living in a mad house full of building materials, builders and far too many children!!

The EUA in early December showed that Fintan's right eye remained stable, although there was still considerable haemorraghing. Unfortunately, the suspicious area in the left eye had developed into definite new activity and was treated with some cryotherapy. This was very disappointing news, as we always consider Fintan's left eye his good one, but a second dose of cryotherapy should get this under control.

Fintan had a vision test (both awake and under anaesthetic) and received his first glasses prescription. His glasses were ready just before Christmas and after wearing them whilst snowbound in Wycombe town centre for a couple of hours, refused to wear them any more!

We were back at the Royal London Hospital on Wednesday (3oth) for an EUA and second dose of cryotherapy; the haemorraghing in Fintan's right eye is slowly reducing and there is no sign of new activity and his left eye has responded well to the cryotherapy, but he also has a little haemorraghing in this eye.

Having discussed the problem of Fintan not wearing his glasses, it has been decided to prescribe him a weaker pair (as the original are very strong) and hopefully he will slowly get used to them and can work his way up to the full strength pair. He actually had better results with his eye test this week and that was without the glasses!

We are due back at the Hospital in 5 weeks for a check up, but we are hoping to arrange for this to be done privately with Mr Hungerford. We want a second opinion for reassurance; particularly as Fintan's Intra-Arterial Chemotherapy was such a new treatment and instigated by Mr Hungerford, we want him to see the results and give his opinion on how things are going.

Despite Fintan's on-going treatment, we all had a fantastic Christmas and a nice break from the building work!

Happy New Year!

Fintan admiring the Christmas Tree

Opening presents on Christmas Day

Fintan demolishing a cake after his EUA