Fintan Tadgh

Update

2011-12-09T06:27:00.007Z

After a 10 week gap, Fintan was back at the Royal London for an EUA on Wednesday (7 December). We are delighted to report that all is good! Fintan's left eye remains stable and, despite a 'sticky' eye problem, the consultants are very happy with his right eye socket. Fintan's artificial eye does not appear to cause him any problems and still looks really good.

As you can see, in general health terms, Fintan is keeping well. His hair has grown back at an alarming rate and come back even curlier - a visit to the barbers is required before Christmas!

We will be returning to the Royal London on 29 February for an EUA - to the brand new hospital building which was being constructed when Fintan's treatment started over 4 years ago - hopefully the frequency of visits will reduce further and by the summer we hope that Fintan's check-ups will no longer require an anaesthetic!

Update

2011-09-29T09:51:00.011+01:00

Fintan was at the Royal London Hospital yesterday for an EUA and we are extremely pleased to report that there are no signs of activity and the tumours remain stable. Whilst Fintan was under anaesthetic his vision was measured and he has a new prescription (slightly stronger) to help correct his long-sightedness. The consultant was happy enough to stretch Fintan's next appointment to 10/12 weeks - we agreed on 10 weeks and will be back at the Royal on 7th December.

As always Fintan coped really well and was pleased to see his girlfriends, Tara and Laura, and tell them all about his trip to Disneyland Paris with The Children's Magical Taxi Tour.

On Friday 23 September, Fintan and myself were assigned a London black cab and driver, Ricky, and taken to Canary Wharf for breakfast and then, together with 100+ other black cabs, we travelled to Dover with a police escort, took the ferry to Calais, then continued with the police escort to Disneyland Paris. Saturday was spent at the Disneyland Park, followed by a party with Mickey, Minnie, Goofy, Donald, Daisy, Pluto and Chip'n'Dale! We travelled back with the police escort to London on Sunday.

Fintan had a fantastic time and has not stopped talking about his trip!

The Big Breakfast - Canary Wharf

Fintan and Goofy at Hotel Cheyenne

The Mad Hatter - Disneyland Park

Fintan, Mickey and Mummy!

Vroom, vroom!

Update

2011-08-09T08:06:00.008+01:00

Fintan was back at the Royal London Hospital last Wednesday (3rd Aug) for an EUA. We are very pleased to report that all is stable at the moment with no signs of tumour activity. He has recovered well from his chemotherapy - he has regained the weight he lost, got some colour in his cheeks and his hair is growing back at an amazing rate!

We will be back at the Royal London for his next EUA in 8 weeks; in the meantime, Fintan has a week at Wembworthy Down Farm in Devon, starting school and a trip to Disneyland Paris to look forward to!

Relieving the boredom with a DVD ...

... whilst the older boys opt for a DS game!

Oliver decides it's time for Fintan to wake up!

Unscheduled Hospital Visit No.3!

2011-06-24T05:56:00.018+01:00

Following Fintan's last chemo cycle, things did not go quite so well for him!

By the end of the week following his chemo (Fri 20th May) Fintan was admitted to Stoke Mandeville Hospital with a high temperature; we assumed he would be back home after 2/3 days, but it actually took nearly 4 weeks to get him back home for good! Initial antibiotics did not have any effect and his temperature continued to spike; after about a week his antibiotics were changed and an anti-fungal drug added, but still his temperature spiked. GOSH, who were dictating his treatment, had stated he should continue on this cocktail of drugs for 10 days after his last temperature spike - as his temperature was spiking daily it felt like we would be there forever! Repeated blood cultures all came back negative, a chest X-ray, ECHO and CT Scan were all clear too.

After 2 weeks, as Fintan's temperature was not spiking as high, Stoke Mandeville allowed him home during the day. Although he still had a lunchtime visit from one of the community nurses for a 1.5 hour drug infusion and 'popped' to Wycombe Hospital at teatime for another 1.5 hour drug infusion, then back to Stoke Mandeville for the night for yet more infusions it was good to be able to spend some time at home.

Finally, 3 weeks after his admission Fintan was discharged from the hospital on Fri 10th June as his temperature had settled and no bacterial source of infection could be found. However, we only managed about 24 hours before he was re-admitted on the Saturday evening - with 'tracking' along his central line (redness on the surface of the skin following the route of his central line which is a sign of infection).

With his 4th birthday the following morning we were all very upset, but not Fintan who took it all his stride! A new cocktail of antibiotics were started and, as he did not have a temperature, the hospital allowed him home for his birthday on the Sunday morning. Sue (one of Stoke's community nurses who don't normally cover weekends) kindly administered Fintan's lunchtime drugs at home so that his afternoon birthday party could go ahead as planned!

Fintan had a fantastic birthday and loved his drum kit! It was hard having to return to the hospital in the evening, but as always Fintan was still smiling!

Birthday Boy!

GOSH finally came up with a 'plan' for the week commencing 14 June; continue with antibiotics (once a day administered by the community nurses at home) and as soon as a bed was available to remove the central line. His bed was held open at Stoke Mandeville, but we were able to remain at home until GOSH scheduled Fintan's day surgery on Thur 17 June. The line was successfully removed and Fintan is now a very happy boy!

We were at the Royal London Hospital this Wednesday (22 June) for an EUA and can report all was well. The consultants are happy with how his right eye has healed and his left eye is stable - we are hoping that things stay this way! Fintan's next EUA is scheduled for 6 weeks.

< Fintan and Oliver enjoying a DVD!

Post anaesthetic 'lunchbox'

EUA and Final Chemo

2011-05-19T08:12:00.015+01:00

Fintan returned to the Royal London Hospital last week (Wed 11th) for an EUA. The left eye remains stable and his right eye continues to heal well. He is suffering a little with "dry eye" in his right eye socket - a result of the external beam radiotherapy he had back in December 2008. An eye lubricant has been prescribed which he will need to use for the foreseeable future. Fintan will have another EUA in 6 weeks.

Post EUA sulk!

We were back in London at GOSH the following day (Thu 12th) for Fintan's fourth and final chemo cycle. Following his outpatients appointment in the morning, there was not a bed available until 6pm; James and Oliver went home whilst Fintan and myself took the Tube to Covent Garden. Fintan was not impressed by the street performers or my suggestion of a little retail therapy, but just wanted to get back on the 'bouncy' train and return to the hospital (where he had a pre-arranged date with his girlfriends, Tara and Laura, from the Royal London!)

By the time we made it onto Lion Ward to start Fintan's chemo, his slightly sticky right eye had become a lot worse and swabs were taken to see if he had an infection. Fintan coped incredibly well with his chemo - 48 hours attached to a pump ('robbie robot') must seem like an eternity to a child - but apart from a couple of little tantrums he sailed through!

We returned home late Saturday night and Fintan was up at the crack of dawn on Sunday raring to go! The results of his eye swab came through on Monday and, as we expected, he had an infection; antibiotics have been started, but it is clearing up already.

We are back at GOSH on 9th June for a check up and hopefully will then get the go ahead for his line removal, which will just be a day surgery case.

We are all now looking forward to Fintan's 4th Birthday - party on Sunday 12th June!

Zzzzzzz - Fintan's favourite hospital pastime!

Fun on the balcony play area!

I did suggest Fintan might be more comfortable in bed

- but he insisted his pencil case was where he wanted to sleep!

Unscheduled Hospital Visit No.2 !

2011-05-09T13:29:00.011+01:00

Fintan was admitted to Stoke Mandeville Hospital in the early hours of Bank Holiday Monday (2nd May) suffering another febrile neutropenic episode. Having had a runny nose and slight cough over the weekend his temperature reached the 'straight to hospital' criteria at about 3.3oam! Fintan was not in the least bit bothered by the prospect of spending 2/3 days in hospital and excitedly packed his bags - I was not quite so enthusiastic!

Blood cultures were taken, IV antibiotics started and then we just had to sit it out - at least 48 hours for blood culture results - with no TV and Fintan not allowed in the playroom. Thanks to everyone who helped out with the boys at home and our much appreciated visitors to the hospital.

Fintan was much brighter by Wednesday morning and allowed home that afternoon.

Although Fintan was still neutropenic (at higher risk of picking up infections) we allowed him to attend the much anticipated 'Absolution Charity Gig' on Saturday. Fintan has been beside himself with excitement about this gig - not at the prospect of seeing his daddy pretending to be a rock star, but because his hospital girlfriends and GM (aka Egem, Jim, MG!) were going to be there - he was not disappointed and had a fantastic time!

Lots of money was raised for the Childhood Eye Cancer Trust and Motor Neurone Disease Association; thanks for everyone's amazing support and generosity.

We are back at the Royal London Hospital on Wednesday 11th for an EUA (or smelly sleep as Fintan calls it) and then GOSH Thursday through to Saturday for his last cycle of chemotherapy.

Fintan 'rocking'

'Absolution' - hate to admit it but they did sound quite good!

Chemo 3 of 4

2011-04-27T13:25:00.008+01:00

Fintan has kept in good health since his last chemo cycle and we have managed to avoid any unscheduled hospital visits (apart from Barnaby's visit to Wycombe A&E - nothing serious, a football injury to his finger which required an X-ray!!).

Fintan had his appointment with the Artificial Eye Service at Wycombe Hospital on Tuesday 19th April. He was very excited at the prospect of getting his new eye and coped with the procedure incredibly well. His temporary conformer was removed and he then got to help choose his 'special eye' which was then shaped and polished as Fintan watched. When he finally got to wear his eye he was very happy with it and for an 'off-the-shelf' one it is a good match. When everyone is happy that it is being tolerated and Fintan is more used to the removal and care of the eye, we can consider having a perfect, hand-painted, match made.

We were back at GOSH on Thursday 21st April for Fintan's 3rd cycle of chemotherapy. All went well, although he was far more nauseous than previously and barely ate anything in 3 days (but of course he could manage a slice of mummy's birthday cake on the Friday!) However, since he came home on Saturday evening his appetite has picked up and he is full of energy and bouncing around with his brothers.

Disaster nearly struck when it was realised that Fintan's favourite toys, Stitch and Pig and Travelling Ted (Pre-school's teddy that Fintan had been entrusted to look after over the Easter holidays), had been left on the toy bus in the GOSH main entrance overnight! However, daddy drove all the way back to the hospital on Sunday morning to rescue them!

Fintan showing off his new 'special' eye (his right)

The sick bowl hat game - again!

Fun in the playroom

Chemo 2 of 4

2011-04-04T19:24:00.004+01:00

Fintan was at GOSH last Thursday for an outpatients appointment; all went well - no tears and he was very co-operative. Whilst we were there we discovered that he did have a bed that afternoon for his chem0 - fortunately I had packed our bags in case a bed became available!

Fintan tolerated his treatment well - the frequency of his anti-sickness medicines was increased this cycle and he did not suffer as badly with sickness. He is getting used to the routines and staff at GOSH and feels quite at home - he was even making cookies in the playroom on Friday, but couldn't manage to eat them (I was happy to help him out!)

We got back home on Saturday night and Fintan has been full of beans since - he went to pre-school today for the morning, but I think he could probably have managed a full day!

Fintan due back at GOSH for cycle 3 of 4 on 19 April.

Quick Update

2011-03-30T17:57:00.005+01:00

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 !

2011-03-28T18:23:00.005+01:00

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

2011-03-17T18:12:00.015Z

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

2011-03-02T18:32:00.009Z

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!

2011-02-19T07:32:00.010Z

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

2011-02-10T13:30:00.007Z

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

2011-01-19T14:22:00.005Z

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!

2010-12-14T20:23:00.006Z

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

2010-11-04T14:42:00.008Z

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

2010-10-14T18:18:00.003+01:00

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

2010-10-08T20:22:00.013+01:00

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

2010-09-12T13:14:00.003+01:00

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

2010-08-16T12:14:00.002+01:00

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

2010-07-17T19:58:00.011+01:00

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

2010-06-28T17:06:00.011+01:00

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!

2010-06-01T09:07:00.006+01:00

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

2010-05-07T10:18:00.011+01:00

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

2010-04-26T20:34:00.009+01:00

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

2010-04-05T15:30:00.013+01:00

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!

2010-01-01T13:07:00.004Z

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

Belated Update

2009-11-23T09:00:00.022Z

Sorry for the delay in updating the blog, home life has been a little hectic with the arrival of Oliver and the on-going building work!

Since our last update, we have had the very disappointing news that Mr Hungerford, our trusted consultant, has been retired by the NHS; although he was willing to continue working beyond his retirement, the NHS foolishly did not agree and have brought in a new consultant (unknown to the the rest of the team) and Fintan is temporarily being seen by an existing consultant, Mr Reddy, until the new consultant is 'trained up'. Of course, we are not at all happy with this situation - likewise the the rest of Retinoblastoma team and most other patients - Mr Hungerford is the leading expert in this disease and devised all the current treatments and has dedicated over 25 years to retinoblastoma.

Anyway, Fintan was back at the Royal London on 11th November and was seen by Mr Reddy, who initially suggested he have another dose of intra-arterial chemotherapy. As Fintan has a lot of haemorrhaging in his right eye, Mr Reddy could not see clearly whether the active area was still responding to treatment and felt a third dose would do no harm. However, Dr Kingston, the oncologist, did not not agree and felt that the chemotherapy was causing the haemorraghing and that, having looked at photographs of Fintan's eye with a colleague, there was no longer any activity behind the bleed.

Thankfully, after discussing the matter it was agreed not to treat the eye at the moment and Fintan will have another EUA on 9th December and if it is decided that more treatment is required a third dose of intra-arterial chemo can be delivered a week later. Mr Reddy also picked up a suspicious area in Fintan's left eye, which can be treated with cryotherapy at his next EUA if considered necessary.

On a more positive note, we were delighted to hear from the Genetics team that Oliver has not inherited the mutation in the retinoblastoma gene and, therefore, he has no increased risk of developing retinoblastoma and does not need regular eye checks - a great relief to us all.

Introducing Oliver....

Some Hospital fun!

Update

2009-10-25T11:21:00.005Z

On Wednesday Fintan was back at Great Ormond Street Hospital for another attempt to administer intra arterial chemo.

It was a slightly frustrating start to the day as there was no bed available for Fintan and he and I had to spend a couple of hours in the playroom. I have to confess I was getting a little anxious as I was told that he would not be able to have the treatment if a bed could not be found. Fiona had a hospital appointment herself in the morning so joined Fintan and me just after lunch and thankfully a bed was found on the cardio ward just before she arrived.

Fintan went down to theatre at about 1.30pm and we were able to chat with Dr Brew just before the procedure; as they were planning a slightly different technique which involved inflating a balloon in the artery should the usual process fail again, we had a few questions as this new technique was slightly more risky.

After a couple of hours in theatre it was good news, they managed to administer the chemo and without resorting to the riskier technique.

Fintan was fairly out of it for a couple of hours after the surgery, he also had a bit of a disturbed night with sickness. However, the following morning he was up early eating and drinking so we were able to head home in time for lunch.

Fintan will be back at the Royal London on 11th November to see how his eye is responding and by that time he will be able to show off his new little brother or sister to the team.

Second Dose

2009-10-11T08:07:00.013+01:00

Fintan was back at Great Ormond Street Hospital last Wednesday for his second dose of Intra Arterial Chemotherapy; however, the treatment had to be aborted again.

The day didn't start too well; before Fintan went down to theatre we were informed that he had suffered an allergic reaction whilst under the anaesthetic last time he had this procedure (an anaphylactic reaction possibly to the dye used to show up the arterial system), but he would be very closely monitored this time. Of course, this only added to our worries.

Unfortunately, Dr Brew was unable to thread the fine cathether round the right angle into the ophthalmic artery again and the procedure had to be aborted. Fintan also had another reaction under the anesthetic, although not as bad this time as he had been given an anti-histamine (Piriton). He was very groggy and took a long time to come round from the anaesthetic, refusing liquid and food for several hours - very unlike Fintan who usually demands milk and crisps immediately on waking!

Fintan remained lethargic well into the evening and was becoming dehydrated, so was given IV fluids but did manage some milk and a little food. After a disturbed night's sleep he was allowed home on Thursday morning.

He will be back at Great Ormond Street on 21st October for another attempt to administer the chemotherapy; it has been decided that if they run into trouble inserting the cathether again, they will use a 'balloon' method to assist guiding the catheter around the right angle which is proving so troublesome. Hopefully, we will have a little more success next time.

"No like this dress!"

Examination Results

2009-10-04T16:26:00.006+01:00

Just a quick update to let you all know how Fintan got on at the Royal London last Wednesday.

He had an EUA to see if the chemotherapy has had any effect on the troublesome tumours. Fintan was not seen by his regular consultant, Mr Hungerford, as he is on holiday prior to retiring at the end of the month, however he was seen by another of the Rb specialists, Mr Reddy. Mr Reddy decided that Fintan should have the next course of chemotherapy. He explained that it was somewhat difficult to see exactly how the tumours had responded because the eyes were a bit cloudy due to some bleeding (a side effect of all the treatment Fintan has had to date), but he was confident that there has been some improvement.

The second dose of chemo will be administered next Wednesday at Great Ormond Street using the same intra arterial procedure as before.

Crisps make everything better!

Second Time Lucky

2009-09-13T20:40:00.009+01:00

Last Wednesday we were back at Great Ormond Street Hospital for a second attempt at treating Fintan with Intra Arterial Chemotherapy and thankfully on this occasion the procedure was a success. It was a very tense day and the time whilst Fintan was under seemed like the longest two hours ever, but a quick thumbs up from Dr Kingston brought on a huge sigh of relief.

Fintan was very groggy after the operation and once back in his room was a little sick which is unusual for him, however, some anti-sickness medication soon had him eating his sandwich and yoghurt. Since coming home, Fintan has been his usual self. Apart from a little sickness on Friday he has had none of the usual side effects associated with chemotherapy, which is a relief.

On 30th September, Fintan will be back at the Royal London to have an examination under anaesthetic to see whether the treatment has had any affect on the tumours, if it has he will return to GOSH for a repeat treatment the following Wednesday.

A little pre-treatment fun with 'wig'!

Post-treatment TV

Home Time

Update

2009-08-28T22:21:00.003+01:00

On Wednesday Fintan travelled to Great Ormond Street Hospital to have Intra Arterial Chemotherapy. Unfortunately, the doctors were unable to administer the chemotherapy as they did not manage to thread the catheter, through which the drugs would be delivered, all the way from the groin to the eye.

We were told that the catheter must turn a right angle at a T junction where the ophthalmic artery joins the main artery and getting the very fine tube to go round this bend is a very technically difficult procedure.

Naturally we are extremely disappointed and upset that the operation failed, however, the team will try again in two weeks time. On this occasion the procedure will be carried out by a surgeon who has more experience with this procedure and have been reassured by the fact that they have only failed once on the second attempt.

Despite not receiving the chemo, Fintan had to stay over night at the hospital for observations but returned home on Thursday and has been his usual happy and energetic self since.

London Tonight - Fintan Pioneering Treatment

2009-08-25T23:16:00.003+01:00

A news piece on Fintan and the new treatment he will be having at Great Ormond Street Hospital. Aired on ITV London Tonight, Monday 24th August 2009.

Update

2009-08-22T07:30:00.006+01:00

We had another long day in London yesterday - the plan had been to take Archie to Barts Hospital in the morning for an eye examination and Fintan to Great Ormond Street in the afternoon for some pre-treatment information and paperwork - as always the day was full of delays!

Archie has not previously had any tests or examinations regarding Retinoblastoma as he was considered past an age to be concerned, however, we have had worries since early July as he developed a very bloodshot eye with no obvious reason why (ie conjunctivitis/foreign body) and we then discovered a couple of photographs of Archie from Esther's wedding where he appeared to be showing the 'white eye reflex' - a sign of Retinoblastoma or other eye problems.

After a 41/2 hour wait, Archie was examined and given the all clear - the white reflex was due to the eye being caught at an unfortunate angle in the photos - of course, we are very relieved at this news and the long delay was soon forgotten.

We then moved on to Great Ormond Street Hospital, considerably later than planned, to go through Fintan's procedure for next week, sign the consent forms and attempt to take some blood from Fintan - not an easy task as Fintan is very strong and very determined that no-one is going to stick a needle in his hand, arm or any other part of his body (even with the magic numbing cream!)

Fintan will have the Intra-arterial Chemotherapy next Wednesday afternoon; he has a catheter inserted in a vein via his groin which is then fed up to the back of the eye. This is not always an easy procedure and they may not be successful first time, if it fails, they will try again. Once the catheter is inserted they administer the chemotherapy and remove the catheter. He will have to stay overnight for observation, but should not suffer any of the normal chemotherapy side effects.

He will have an EUA (eye exam under anaesthetic) 3 weeks later and if the relapse area is responding well to treatment he will undergo a second dose the following week - if there is no improvement other options will have to be considered.

Until next week ......

Quick Update

2009-08-19T12:00:00.003+01:00

Although we are still waiting to hear when and if Fintan will undergo the chemotherapy treatment mentioned in our last update (hopefully next week), we have a little more information about the procedure courtesy of The Times! We have a name for it now - intra-arterial chemotherapy - and there is an article in The Times today (page 13) and a slightly more detailed version on-line (www.timesonline.co.uk - search for Retinoblastoma).

Apparently, Fintan would only be the 3rd child in the UK to undergo this treatment on the NHS with another 9 having been treated privately.

We are a little apprehensive about such a new treatment, but it appears to be the best option to retain as much sight as possible in Fintan's right eye.

Disappointing News

2009-08-15T02:28:00.011+01:00

We were back at the Royal London on Wednesday after a 8/9 week break for Fintan's EUA and unfortunately the news is not so good this time. After our last visit, we thought we had finally got on top of the problems in his right eye, but there is new activity which needs to be treated.

The radioactive plaque he had in May was successful, but there is a new area of activity similar to the problem treated (not a new tumour). Another plaque would ideally be the best form of treatment, but as it is so close to where his previous plaque was inserted the risk of visual loss is quite high in this area (although the haemorrhage caused by the previous plaque is healing nicely).

Mr Hungerford has recently started using a new treatment of targeting chemotherapy directly to the back of the eye via a vein entered behind the knee. If Fintan's 'veinous system' is suitable, this should be started in the next couple of weeks. This type of chemotherapy will not cause the side effects of sickness, hair loss, neutropenia, etc, as the dose is quite small and directed straight to the problem area. The alternative is another radioactive plaque.

Although we knew that Fintan's problems were far from over, we had hoped to have a slightly longer period before any more treatment was required - at least until the new baby had arrived.

On a more positive note, during the first week of August we were back at Wembworthy Down Farm in Devon and had a lovely holiday - the boys had a fantastic time 'helping' on the farm and Fintan thoroughly enjoyed visiting the tractors several times a day!

We will continue to update the blog - in the meantime here are some pictures from our break.

Fintan gives the hospital a spot of cleaning

Shorts on head, tiny motorbike...it's a good look!

Yep, we're on a farm!

"Tack-teee"! (Tractor)

"That's all folks"!

Good News!

2009-06-15T05:22:00.008+01:00

Fintan was back at the Royal London last Wednesday (10th) for his EUA. After a very long drive into London, due to the tube strike, and a long afternoon at the hospital, Fintan finally went down for his examination at about 5 pm. The results were really positive; the radioactive plaque seems to have done the trick and the troublesome area in Fintan's right eye appears to be inactive and his left eye remains stable.

We are absolutely delighted with this news and looking forward to an 8 week gap before we have to return for Fintan's next check up.

As always, Fintan coped really well with the day. Despite the long wait, he played happily all afternoon; having mastered how to move forwards in the Little Tikes Car he was not going to give it up for anything - well, maybe a packet of crisps!

To finish off the week perfectly, it was Fintan's 2nd Birthday on Friday and we had a lovely garden party in the sunshine on Saturday with family and friends. Thanks to all for coming and for your lovely presents - Fintan has been enjoying them all!

This morning (Monday 15th) poor Fintan is off to Wycombe Hospital for his circumcision, but we are sure he will cope admirably!

Isolation

2009-05-16T22:33:00.013+01:00

Fintan is currently making the most of every chance he can to go outside after spending the last three days confined to a small room with no windows at the Royal London Hospital!

The radioactive plaque was inserted on Wednesday as planned, however it only needed to remain in place until Friday lunchtime instead of Saturday morning as we had originally been told. This was welcome news, as I thought Fintan might really struggle with the isolation as he is always so keen to get outside, insisting on putting his wellies on, or 'toots' as he calls them, at every opportunity!

As it happens, Fintan coped extraordinarily well with everything that has been thrown at him this week. He kept himself busy playing with his cars and watching 'Big Cook Little Cook'. In fact, it was me who cracked first by only about midday on Thursday. However, relief was at hand from some friendly faces at CHECT and the retinoblastoma play specialist who came over from Buxton Ward, where Fintan usually stays, to give him a break from grumpy Daddy (thank you).

Friday morning was a bit tougher as Fintan had to be starved in preparation for the operation to remove the plaque at lunch time - he couldn't even have water due to the timing. Fintan devised a crafty way to get a few drops and ease his thirst, but after he asked me to clean his teeth for the third time, I cottoned on to the ruse and the toothbrush was packed away!

The plaque was safely removed and after a nap and some well deserved crisps, Fintan was ready for Mummy, Archie, Barnaby and home! Yet again, Fintan demonstrated what stern stuff he's made of.

In four weeks he will be back at the Royal London for an EUA to see how successful the treatment has been on this troublesome area of his right eye.

Crisps will make anything feel better

"Cars - Vrooom!"

Boredom sets in

Fintan tests the door for weaknesses!

The guilt trip - Donations Welcome!

In hindsight, watching Big Cook, Little Cook when being starved wasn't such a bright idea!

Although Uncle Jorge's vital organs were protected by the lead vest, his pride was destroyed!

Update

2009-05-01T19:41:00.003+01:00

Fintan's treatment has been delayed by one week - the plaque size and length of time it stays on the eye varies with each patient and Fintan's requirement could not be met next week. He will now be admitted on Wednesday 13 May and should be out the following weekend.

Unfortunately, this will mean postponing his circumcision (but I don't think Fintan will be too bothered about this!!)

Radioactive Plaque

2009-04-30T06:12:00.006+01:00

We were back at the Royal London yesterday for Fintan's EUA (examination under anaesthetic); Mr Hungerford has been closely watching a suspicious area in his right eye and has decided that this area is changing and needs some more treatment.

Fintan will have a Radioactive Plaque inserted into his right eye - a small disc containing radioactive material which will be stitched to the outer surface of the eye. This will remain in place for a couple of days, during which time he will have to remain in isolation. It will then be removed, again under anaesthetic, and he will be safe to come home!

The plaque will be inserted next Wednesday and he should be back home some time over the weekend. James will probably stay with Fintan for this treatment - I think I have done more than my fair share of hospital stays in the past and I have the pleasure of taking Fintan to Wycombe Hospital for his circumcision in a couple of weeks!! May will not be a good month for poor Fintan!

News of this treatment was no surprise and we are almost relieved that it is starting - hopefully this will sort out the problem in this eye and we can start looking forward to having longer gaps between Fintan's check-ups.

As always, Fintan was a star yesterday - a little grumpy at times, but post anaesthetic a much anticipated bag of crisps did the magic trick and put a smile back on his face!

Play time!

Even the pretend food is tempting when you are this hungry!

A little pre-op rest

Some well deserved crips...mmmm

Update

2009-04-12T17:53:00.008+01:00

After a glorious, long weekend on Wembworthy Down Farm in Devon, myself and Fintan returned home for a check up at the Royal London on Wednesday.

Fintan seemed much happier on arrival at the hospital than our last visit and was straight out of the pram and off to play - possibly due to the novelty of having his Auntie Esther keeping us company on this trip (now that Esther knows what the day involves, I am sure it will take a large sum of money before she agrees to join us again!!)

It was a short list, with only 4 patients, but the day was as long as always! Mr Hungerford examined Fintan's eyes and compared photographs from the last check up, but he still could not be sure about the suspicious area and wants to see Fintan again in 3 weeks. He does not want to treat the suspect area unless necessary, as the vision in this area could be affected. On a good note, it had previously been thought that the suspicious area was in his left eye, which is his better eye visually, but it is actually his right eye.

Fintan was not great when he came round from the anaesthetic - it seems to affect him more as he gets older - but a packet of crisps did the trick in the end!

We are back at the Royal London on Wednesday 29th April and we'll update you then. As the camera was in Devon with the boys, no photos from the hospital, but here are a few from our break!

Fintan and his Merry Men!

Baaaaa!

Postponed!

2009-04-03T06:11:00.004+01:00

Fintan 's check up at the Royal London, due this week, has had to be postponed (with the protests in London on Wednesday, it was possibly a good thing!!)

Although a little inconvenient, Fintan will be at the Royal London next Wednesday (8 April). We are off to Devon this afternoon for a well earned Easter break - myself and Fintan will have to come back early, but James and the boys will stay until Friday. It was a difficult situation to be in, as we didn't want to delay Fintan's check up any longer and also didn't want to deny the boys the chance to be farmers for the week! Archie is beside himself with excitement at the prospect of seeing 'Farmer William' again and possibly witnessing the birth of a lamb or two - as always Barnaby is just beside himself!!

Until next week ....

Back at the hospital

2009-03-14T21:10:00.006Z

It's been a while since our last post, as we have had a 7 week break from the hospital. We were back at the Royal London last Wednesday for Fintan to have an examination under anaesthetic, in order to see whether things were still stable since his radiotherapy treatment and last check up.

It was mixed results, Fintan's right eye is stable and looking good, but the left eye has a slightly suspicious area which Mr Hungerford needs to monitor. Therefore, Fintan will be back in London in 3 weeks for another examination. If there is activity in this suspicious area, it will be treatable.

Fintan is definitely becoming more aware of hospital days and what is going to happen. When we arrived he was very upset, determined not to stay, tried to put his coat back on and get back into his push chair! However, he didn't take long to calm down and was soon playing with all the toys on the ward.

Over the last 7 weeks Fintan has changed quite a lot. He's becoming more of a boy and less of a baby all the time. His vocal skills are more in volume than in any breadth of vocabulary at the moment, "Nooooo" being a clear favourite along with "Cow-k" which normally means "milk"...makes sense I suppose!

Fintan has a post-anaesthetic sulk!

Hurrah!

Good News!

2009-01-22T09:36:00.009Z

Fintan was back at the Royal London yesterday for his EUA (examination under anaesthetic) following his treatment last month and we are pleased to report that the Radiotherapy appears to have been very successful!

All the tumours are inactive, some of the smaller ones have completely disappeared and any suspicious areas are no longer suspicious. We are absolutely delighted with this news and feeling far more positive about Fintan retaining his sight.

Fintan will continue having his eyes checked regularly as he could still develop new tumours, but as he is gets older the risk reduces (by the age of 2 years 9 months he only has a 1% chance of developing new tumours). We do not have to go back to the Royal London until late March; 8 weeks seems a very long time when Fintan has been having his eyes checked every 3/4 weeks, but if we have any concerns we can bring the appointment forward.

No photo opportunities at the Hospital yesterday, but here are some pictures anyway to brighten up the screen!!

Update

2009-01-14T20:03:00.009Z

We had a fantastic Christmas at home, with family and friends kindly taking time out to visit us - it was lovely not having to rush around, battling traffic to be anywhere by a specific time!!

After a 4 week break from hospital visits, we are back at the Royal London next Wednesday (21st Jan) for Fintan's EUA (examination under anaesthetic) to see how successful the Radiotherapy treatment has been. Fintan's vision does not appear to have deteriorated at all, which we hope is a good sign, but we try not to get our hopes up too high as we never really know what is going on at the back of his eyes.

Our local newspaper, the 'Bucks Free Press', will be running an article on Fintan either this week or next which will help to raise awareness of Retinoblastoma. The article already appears on their website - http://www.bucksfreepress.co.uk/news/...cer/

Until next week - in the meantime here are a few pictures from Christmas.

Finished in time for Christmas!

2008-12-22T17:31:00.011Z

Fintan had his final dose of Radiotherapy today and coped really well as always. He is looking a little sore around the eyes at the moment and it may get worse before getting better, but it doesn't seem to bother him too much - he just gets a few funny looks when we are out and about!

Archie and Barnaby came to the hospital with us today so they could see where Fintan has been going for the last 5 weeks; they were totally unimpressed and very disappointed the drinks machine had run out of hot chocolate! However, we took them for a pizza, a trip on the underground and admired the Christmas window displays at Fortnum and Mason and Selfridges which they thoroughly enjoyed. Fintan found it all a bit busy and noisy and was pleased to get "home" (his word of the moment)!

Although we are glad it is all over and delighted not to have to travel into London at the crack of dawn each day, we will sort of miss Barts! The intensity of the treatment means you soon get used to the routine and you almost forget life pre-treatment, so we now need to adjust back to normal life.

Fintan will have an EUA (examination under anaesthetic) at the Royal London in about a month's time to see how the tumours have responded to the Radiotherapy. It seems like a long wait, but Christmas will help pass the time!

Here are few pictures of Fintan (with his lovely Teddy Bear present from the team who have been treating him at Barts).

Fintan enjoying dessert after a Post-Treatment Pizza!

Fintan and his new Teddy

Sound asleep with his new teddy

Wishing you all a Merry Christmas and Happy New Year!

6 Doses To Go!

2008-12-13T12:56:00.011Z

Fintan has finished another week of Radiotherapy and is still smiling!! He continues to cope really well with the daily anaesthetics and tedious drive to and from London. He has developed small red patches on both sides of his face by his eyes - the radiation exit point; this is similar to sunburn but it doesn't seem to be bothering him at all. Mind you, Fintan never complains - I noticed one of his back teeth has come through and another is breaking (both Archie and Barnaby cried at night for weeks when their back teeth came through!)

Fintan has a quite a fan club at the Hospital! We see the same people daily until their treatment finishes, but there is always someone new starting and Fintan is quite happy to introduce himself.

With 6 more doses of Radiotherapy to go, Fintan's last treatment date will be Monday 22nd December. As the boys will have finished school, we will take them with us so they can see where Fintan has been going for the last few weeks and, if Fintan's up to it, we will take them out for a treat in London.

Fintan Post Anaesthetic

Fintan Admiring The Christmas Tree

2009 Flora London Marathon

2008-12-07T19:38:00.004Z

I have registered to run the 2009 Flora London Marathon to raise money for the Childhood Eye Cancer Trust (CHECT). Fiona and I have been doing some running over the last 6 months or so, but as of January I will be cracking open the bulk-buy pasta and starting my pre-marathon training.

This will not only be my first marathon, but also my first race...gulp! The plan is to try and complete the 42.16 kilometers (26.2 miles) of London's historic roads in about 4 hours, but just to finish will be a real achievement. I imagine that it is going to be hard work, however, Fintan can go through what he does without barely creating a fuss, so I will be using him as inspiration to get me through it.

CHECT have been a great source of support and information to us over the last year or so and they will no doubt be invaluable to Fintan throughout his life as his needs change. They also continue to raise awareness of this rare disease so that other children could be diagnosed earlier, hopefully reducing loss of vision and minimizing the need for eye removal.

So here comes the plea; please, please, please dig deep into your pockets and sponsor me for this worthy cause.

I have set up a JustGiving page, which you can access via the link below to pledge via the Internet....or if you'd prefer, I won't be going anywhere from now until 26th April 2009 without a sponsor form!

The JustGiving page is here: http://www.justgiving.com/jamesmorleysmith

If you are a UK tax payer, please select the Gift Aid option as this will add an extra 25p for every pound pledged.

Thanks in advance for your kind generosity.

9 Down 11 To Go!

2008-12-04T19:46:00.002Z

There's not much to report at the moment. Fintan is coping really, really well with all the trips back and forth to the hospital. He is even starting to get used to the anaesthetic and today he didn't cry at all.

As Fintan is starved all morning, he is very keen to get some food into his tummy as soon as he comes round. His need for food continues when he gets home, here is a picture of him enjoying a slice of post treatment toast.

6 Down, 14 To Go...

2008-11-30T20:17:00.008Z

Last week Fintan had doses 4, 5 and 6 of his radiotherapy. Fiona took him to London by herself and I stayed back home to make sure Archie and Barnaby got to school.

Fintan is getting used to the routine; being starved in the morning and setting off for the hospital when it is still dark! At the Hospital, he likes to walk around and around the waiting area - out one doorway and in another, making friends with some of the other patients on his way! If anyone is eating or drinking anything he lingers a little longer and sometimes even smacks his lips (his way of asking for food).

Besides his empty tummy, Fintan seems to be coping very well at the moment. But by the end of this week he might start to feel more tired and may develop sores on the sides of his head - the exit points of the radiation beam. He is at the Hospital everyday this week, plus he has an extra visit to the Royal London on Wednesday afternoon; it will be a very tiring week for everyone.

Here are a couple of photos from his visits so far:

Fintan Starts Radiotherapy

2008-11-20T20:24:00.005Z

Yesterday Fintan had his first dose of external beam radiation therapy.

It was an early start for us all as we had to be at St Bartholomew's Hospital in London by 9am. Fintan had to be starved as he will have a general anaesthetic for each dose; the treatment is not painful, but he must stay perfectly still.

Fintan was as good as gold as always, he did not grumble at being woken early or at being denied his breakfast. He did have a cry when he was taken down to the treatment room, although I can hardly blame him as the room was not exactly welcoming with the radiotherapy machine in it, something which can only be described as closely resembling James Bond's evil nemesis death ray!

The treatment did not take long at all, in fact he was only away from us for about 40 minutes, and this was longer than normal as they needed to create a mould for his head (so that it lies in the same position each day). When he came to from the anesthetic, he was a bit drowsy but was drinking his milk and playing with toys again in no time at all.

Fintan had his second dose today, which also went very smoothly, and he will continue to have treatment most weekdays now for about 5 weeks.

Start Date

2008-11-11T13:50:00.005Z

We have finally got a start date for Fintan's treatment - Wednesday 19 November. Although this is not as soon as we had hoped, we have been assured (and we have discussed this at length with various members of Fintan's team of specialists) that this delay will not adversely effect his condition.

We shall try to enjoy our last week of freedom before the numerous trips to London start!

Latest News

2008-11-07T20:34:00.008Z

Tuesday 11th November

We had our appointment with Dr Plowman last Friday and met the Radiotherapy Department team at St Bartholomews (Barts) where Fintan will have his treatment. Dr Plowman advised us that they intend to give Fintan Lens Sparing External Beam Radiation therapy which should reduce the risk of him developing cataracts. It is now a case of waiting for treatment to start; they need to get the team organised, etc, which is all a little frustrating as the sooner we get started the better. We are going to chase the hospital today and hope to have more news soon.

Quick Update

2008-11-06T02:40:00.004Z

Fintan had an ultrasound of his eyes at Moorfields Eye Hospital last Thursday - a very simple and painless procedure (although Fintan thought otherwise - his screams could be heard by the room full of patients waiting to follow him who then all looked a little apprehensive about their impending scans!)

We have an appointment with Dr Plowman - Consultant Radiation Oncologist - on Friday morning and then should start treatment on Monday - although this is to be confirmed.

Photos from Wednesday

2008-10-31T09:30:00.003Z

Fintan enjoys exploring the ward...again!

Barnaby tries to explain to one of the artists what a Clone Trooper is!

Archie and Barnaby creating their masterpieces.

Barnaby's work

Archie's two part piece!

Bad News

2008-10-30T06:52:00.006Z

We returned to the Royal London yesterday and Fintan had his EUA (examination under anaesthetic) with the intention of having his second application of cryotherapy, however, things have taken a turn for the worse and Fintan now has new tumour growths in both eyes. Chemotherapy and cryotherapy will no longer be effective in treating these new fast growing tumours and Mr Hungerford has informed us radiotherapy is the next step. Of course, we are absolutely devastated, but we have to do everything we can to try to save Fintan's eyes.

Details are a little hazy at the moment, but are trying to arrange an initial 'measuring up' appointment at Moorfields Eye Hospital in the next few days, then a consultation with the radiotherapy specialist and within 7-10 days we should start a month long radiotherapy course at St Bartholomews, London (Barts). This will be daily treatment (5 days on / 1 day off) and Fintan will have to have a general anaesthetic each time. The application of radiotherapy does not take long and hopefully we will not have to spend much more than half a day at the hospital and we can come home each day.

It is going to be a very tough month for everyone, but of course especially for Fintan who has been so brave throughout all this. He is such a happy, carefree boy and even when we were being given the bad news last night, he put a smile on our faces by playing 'peek-a-boo' around the door!

We will try to keep the Blog as up-to-date as possible.

Before we were given the bad news yesterday, the day had actually been quite fun. As it is half term we had taken Archie and Barnaby with us. A group of artists have been carrying out a project with the children at the hospital involving the children on the wards creating a message to send to other children on different wards, in the hope of getting an "Artistic response". Archie, Barnaby and Fintan (with a little help from Daddy), had great fun producing their masterpieces. There are some photos, I shall add them later today...

Update

2008-10-24T13:54:00.005+01:00

Unfortunately, due to problems with the Cryotherapy machine at the Royal London, Fintan is yet to have his second application of cryotherapy. We were due to visit the Hospital on Wednesday 15th, but the Cryotherapy machine was not working so our visit was postponed to Wednesday of this week. We knew it would be a long day, as there was obviously a backlog of patients and 2 surgical procedures before EUAs (examinations under anaesthetic) would start, however, at about 4.00pm the Specialist Retinoblastoma Nurse apprehensively informed us the Cryotherapy machine had failed again and Fintan would not be having his treatment that day. Fortunately, Fintan had not yet been anaesthetised!

Although, rather frustrating for us - having made the journey - and the worry of having to delay treatment for another week, it was probably for the best anyway; Fintan has not been well this week and is on antibiotics for a nasty willy infection! It looks like the poor boy needs a circumcision - another uncomfortable procedure for him to endure.

We should be back at the Royal London next Wednesday (assuming the machine is repaired), if not, Mr Hungerford runs a clinic at Moorfields Eye Hospital who also have a Cryotherapy machine and Fintan could be treated there.

Until next week!

Another Update

2008-10-01T20:20:00.008+01:00

On Wednesday last week (24th) we were back at the Royal London Hospital with Fintan. You may well have noticed that we didn't quite make the 8 weeks between appointments we were hoping for again. As with last time, we noticed that the squinting of Fintan's eyes seemed to have worsened. Fintan also started shaking his head, as if he were trying to clear his vision. We contacted the hospital and they felt that it would be best if they saw him early just to be safe.

As it happens, Fintan did again have some further treatment, some more cryotherapy to his right eye.

The day was a bit shorter than normal as the list was much shorter than expected after someone failed to turn up for an operation! Fintan also enjoyed showing off his new walking skills to the nurses.

We will be taking Fintan back to the hospital on the 15th for the second application of cryotherapy to the area treated this time.

Archie and Barnaby show off their new matching school uniforms!

I know it's been raining a lot recently, but Fintan's Ark is perhaps a slight exaggeration!

Fintan sleeps off the anaesthetic.

If one CAN climb into it, one SHOULD climb into it!

Update

2008-08-31T09:01:00.017+01:00

A week last Wednesday, we were back at the Royal London for Fintan's second application of cryotherapy. It was another long day, but Fintan, as always, was fantastic. The suspicious areas in his left eye are responding well to treatment and his right eye remains stable. Mr Hungerford commented that, as Fintan is getting older and bigger, he is now able to get to good photographs of the retinas and is more able to see round the peripheral of the eyes to see what is going on.

We are going to try again for an 8 week gap before the next examination - hopefully this time we will not have any cause for concern and have to return to London early!

After what had been quite a stressful Summer Holidays, we have just returned from a blissful week in Devon. We stayed on a remote farm in the middle of Devon - the boys were able to wander off on their own to explore the farm and they thoroughly enjoyed the chance to help out with the sheep and pigs and to collect eggs for breakfast! Archie now wants to be a farmer (Barnaby thinks it would be too much like hard work!) and shed a few tears when it was time to come home. We had such a lovely break that we are trying to work out when we can go back again!

Fintan and the boys at Wembworthy Down Farm, Devon

Raising Awareness

Whilst we were away it was a very good week for raising awareness of Retinoblastoma - there was an article in several of the national newspapers which resulted in an item on BBC Breakfast with a representative from CHECT (The Childhood Eye Cancer Trust). The white eye reflex and how treatable the cancer is was very much the focus of the article and hopefully this message will have reached a wide audience.

Link to BBC Article and video clip

Back to the Royal London!

2008-08-07T12:26:00.007+01:00

So much for our break from the Royal London over the Summer holidays! Shortly after our last visit, Fintan's right eye gave us cause for concern as it appeared to be turning inwards more than usual. We spoke to the hospital last week before setting off to Lincolnshire for a few days, with the arrangement that the Royal London would contact us on our return to arrange a date to visit them. However, a change of plan brought our hospital visit forward with our return from Lincolnshire on Tuesday being followed by a trip to London yesterday!

Fintan's initial eye examination (involving measurements) indicated that his right eye was not turning in any more than last time, but the only way to be sure what was going on was to have an EUA (examination under anaesthetic). Fintan did not have his examination until 5 pm so it was a very long day.

As Fintan is getting older, he is much more aware of what is going on and has made associations with various treatment rooms. On entering the room to have his anaesthetic administered, Fintan immediately starts crying and clinging to you as he hates the mask used to give him the gas. It was particularly distressing this time, as I felt he was having this unplanned EUA because of our concerns and if there were not any problems he would have gone through the trauma for nothing.

By about 6pm we had the results of Fintan's examination - no problems with the right eye, but in fact there were 2 or 3 suspicious areas in the peripheral of his left eye which Mr Hungerford treated with cryotherapy. These are not new tumours, but probably settling debris similar to the problems in his right eye (vitreous basing). Although not quite accurate, we had been right to be concerned and are glad we contacted the hospital before his planned visit in September. Fintan has to return in 2 weeks time (due to holidays) for a second application of cryotherapy.

As always, Fintan was fantastic and actually seemed to enjoy himself exploring the play area and climbing on, over and in anything he could find! We also had a blissful hour before treatment started when all the patients were alseep - unfortunately, the nursing staff couldn't give us anything to knock out Archie and Barnaby! At such short notice we had brought the boys with us, but they were very well behaved (with a little help from our invaluable portable DVD player - the best investment we've made!!)

Problems with Fintan's eye ointment prescription delayed us a little, but we finally left the hospital just before 8 pm. Today, Fintan has recovered well and is bright and chirpy, he just looks a little battered and his left eye is now turning in nicely!!

Fintan has a good look about

"My other toy car's a fire engine"

Barnaby is apparently something from Star Wars!

Archie finally completes his Lego Imperial Star Destroyer

A Step In The Right Direction

2008-07-19T21:16:00.006+01:00

Last Wednesday, Fintan was at The Royal London Hospital for another examination under anaesthetic and for a second application of cryotherapy to his right eye. However, after examining his eyes, Mr Hungerford decided not to apply any more cryotherapy as both eyes appeared stable. His right eye, with the troublesome vitreous basing, showed no signs of suspicious activity since his last examination and there was nothing new to report in his left eye. Not only this, they have also said that they do not want to see him for another eight weeks. Naturally we were very happy about this, but also a little scared. Having been at the hospital every 3 or 4 weeks for some months now, although tiring, it's been reassuring. It will be good to have a little break from our London visits over the summer holidays!

The Genetics Department have also delivered some more positive news. They have found the faulty Retinoblastoma gene in Fintan's blood and it cannot be found in either Fiona or myself, therefore, confirming that, although Fintan has the hereditary form of Retinoblastoma, it started in him. Barnaby had already been ruled out as a carrier from previous tests and it would be very unusual if Archie was a carrier, but we intend to have his blood tested shortly just to confirm he is clear.

We are back at the Royal London in early September, in the meantime here are some recent pictures.

Fame for Fintan!

2008-06-25T22:22:00.011+01:00

For the last couple of weeks, Fintan's image as been broadcast on TVs across the world!

As part of a campaign to raise awareness of retinoblastoma, a slide which shows a photo of Fintan depicted on a Motorola Q mobile phone, has been showing on TVs situated at tea and break points, reception areas and boardrooms in Motorola offices worldwide. The image clearly shows him with a white eye reflection and by it the words "Red eye is not the problem, white eye could be".

The campaign came about after I decided to email the CEO of Motorola (if you weren't aware, I work for Motorola) explaining Fintan's situation and asking if there was anything we could do to reach out to the 72,000 staff at the company to bring to their attention the signs of eye cancer.

Well it seems that my unsolicited email and cheek has paid off! A big thank you to Motorola and everyone who helped make this happen.

Below is an image of slide and a photo of me stood next to a Moto TV at our office in Basingstoke.

Also, earlier this month a friend of ours, Helen Sheppard, ran the Race For Life with the words "I race for life for Fintan (11 months), Eye Cancer" on her back.

Helen raised money for Cancer Research UK through sponsorship and no doubt made a few people aware that children can get eye cancer.

We are really very grateful to Helen for doing this, and as a small sign of our gratitude, here is a couple of photos of her on the day!!!

If anyone would like to know more about raising awareness of Rb, whether it be in the UK or not, please don't hesitate to email me or Fiona, or contact CHECT through their website at http://www.chect.org.uk/. It can be a simple as sticking a poster up on your work notice board, everything helps.

If you have already been telling people about the condition, let me know and I'll put a bit about it on this blog.

!!Happy Birthday Fintan!!

2008-06-20T22:04:00.012+01:00

Last week we all celebrated Fintan's first birthday. He had a great time and thoroughly enjoyed all the attention, presents and cake! He had lots of lovely new things and has been enjoying exploring them all. Here is a photo of him riding his new Fire Engine.

For us it was quite emotional as we reflected back on the last year. I think it was always on our minds, especially in the early days, that he may not have made this milestone. But Fintan's is a fighter and our little Superman.

On Wednesday, Fintan was back at the Royal London Hospital for another examination under anaesthetic. He required some treatment on both eyes; his left eye required a second application of cryotherapy on the new tumour that was detected three weeks ago and his right eye had 3 or 4 suspicious areas in the debris so these were also treated with cryotherapy. He will go back for a second application to his right eye in four weeks.

He coped well as usual but was more tearful and disoriented as he came round from the anaesthetic and kindly threw up his milk all over Fiona!

Fintan is determined to get what he wants!

Playing at the hospital.

More play.

Soon to be One!

2008-06-02T21:26:00.009+01:00

Last week Fintan had another eye examination by Mr Hungerford at the Royal London Hospital. As it was the half term holidays, we decided to take Archie and Barnaby with us this time. It was nice to have them there to help break up the day for us and Fintan, even if they did spend most of the time watching Star Wars!

The examination went well. Fintan's right eye (the one affected by the vituous basing described in my previous post) did not need to be treated with cryotherapy as it appeared stable, but Mr Hungerford will continue to monitor the debris in this eye. Unfortunately, a new (very small)tumour was found on his left eye; this was treated with cryotherapy and will be 'zapped' again in 3 weeks time. We are told this is not something to get too concerned over as it is the nature of the beast, as they put it. As Fintan has the genetic form of the disease, any of the cells which divide in his retina could fail to stop dividing and become a tumour, but because he is having his eyes examined so regularly, they can never become large enough to be a problem. The vituous basing in his right eye is actually more of a problem than any new tumours.

Earlier in the month, for the first time since finishing his chemo, Fintan developed a fever accompanied by a rash. After having had clear instructions to take Fintan to the hospital when he developed a fever during the chemo treatment, it was very strange to suddenly be faced with the responsibility of making a decision as to what we should do. We called the hospital and they said to bring him in for a quick look. It was just a viral infection and he was back to himself after a couple of days.

Last Friday, Fintan had his first hair cut. Yes, his bald patch has grown enough hair to make it worth while having a trim! He looks absolutely gorgeous and, even if I say so myself, has the makings of a very handsome little chap.

On the 12th June he will be celebrating his first birthday. It's been a tough year to say the least, but Fintan has such a fantastic personality and is always so happy it helps us to forget the hard times; he is a very brave little boy. I think his birthday is going to be quite an emotional day, I know that every time I think about him turning one, I feel quite overwhelmed.

Long Overdue Update

2008-05-02T22:28:00.014+01:00

Firstly, apologies for not posting anything over the last month. With Fintan currently not undergoing any chemotherapy, we have been taking the time to do some normal family things. We were able to take the boys up to Lincolnshire for a few days to stay with Fiona's parents and we also had the excitement of Fiona's surprise birthday party (her age will not be mentioned!); all the boys were able to go which made it all that more special. For those of you reading this that were able to join us in the celebrations, thank you so much for coming, it was great to see you all and we had a really good time.

It was back to business last Wednesday as Fintan was at the Royal London Hospital to have his eyes examined. He also had a basic sight test and we had the opportunity to speak to Mr Hungerford.

The good news is that the original tumours in both eyes are not showing any signs of activity and Mr Hungerford explained more about the 'new' tumours which he has been treating with cryotherapy for the last couple of months.

As the main tumours are affected by the chemotherapy they become crumbly, like chalk. Sometimes this chalk can break off and float around in the vitreous gel (the liquid which fills the hollow part of the eye) and this debris gathers along the bottom of the eye. When in the vitreous gel, the debris does not have a blood supply so is not affected by chemotherapy as this is delivered though the blood, therefore, the debris can remain active. If the debris settles on the retina it can pick up a blood supply and develop into another active tumour.

Mr Hungerford calls this condition "Vitreous Basing" and explained that it is the most difficult part of retinoblastoma to manage because it is very difficult to see the debris as it is so far round the peripheral of the eye.

The treatment is to continue freezing the affected area of the eye every four weeks with cryotherapy and unfortunately could go on for some time. In fact, Mr Hungerford could not estimate for how long and also said that he treated a girl in Poland with Vitreous Basing for 7 years! We are hoping that this is the worst case scenario.

The sight test showed that Fintan still has good use of his left eye and that he seems to be using the periphery of the right eye for detail. The orthoptist who carried out the test also seemed pleased with how Fintan was generally using his sight and said that his behaviour indicated he was seeing more than the test showed (at Fintan's age the sight tests are not that accurate as children tend to get bored easily with the pictures and are more interested in what is going on around them).

Following this course of cryotherapy, Fintan looks like he has done several rounds with Mike Tyson, but other than objecting to the eye ointment we have to apply, he has bounced back as normal and is chasing the cat again!

...Talking of which, Fintan's crawling has come on leaps and bounds over the last month. The house is now locked down with stair gates which, together with trying to escape from Fintan, is why the cat seems to have a permanent grump on at the moment!

With that, I shall leave you with a few recent pictures and a promise to update a bit more regularly this month.

Fintan's Toothy Grin

Ner, ner, ner, ner, nerrrr!

Who's for mashed pasta and tomato?

Update

2008-04-07T20:26:00.009+01:00

Last Wednesday, Fintan had his eyes examined at The Royal London. As usual, this was done under general anaesthetic, which Fintan coped with very well. The new small tumours which were detected on his right eye at his last check-up have responded well to the cryotherapy and this treatment was repeated again. The original tumours still remain stable and there were no new tumours observed.

Fintan has to return to the Royal London in 4 weeks for another check-up and possibly some more cryotherapy. We are also trying to arrange for Fintan to have an eye test at his next appointment; we think his vision has improved greatly since diagnosis and it would be wonderful if this could be confirmed by 'experts'.

Fintan is still full of beans and we are struggling to keep up with him. He likes to follow his brothers around the house, even though they usually ignore him, as long as Fintan is in the same room as them he is happy! He also thinks it is great fun to chase the cat, corner her by a stair gate and grab a big clump of her fur! Talking of hair, Fintan's bald patch at the back of his head is beginning to grow back slowly, but I'm sure is still looks a bit odd to strangers!

Line Out

2008-03-29T19:10:00.005Z

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.

Quick Update

2008-03-19T22:15:00.006Z

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 Chemo

2008-03-09T22:21:00.014Z

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!

Update

2008-02-28T22:21:00.006Z

It's only a week now until Fintan has his last cycle of chemotherapy. Also next week Fintan will be having his eyes examined by Mr Hungerford at the Royal London Hospital; as long as Fintan is continuing to respond well to the chemotherapy, there will be a well earned rest from all the poking, prodding and medicines for the brave little chap.

The affects of the chemo are clearly more apparent now. Fintan has had another infection and spent the most of this week in hospital. It was thankfully nothing to worry about. On Sunday Fintan developed a temperature and because he was neutropenic, the hospital needed to administer antibiotics and take blood cultures to see what infection he had. In turns out he has an ear infection and was therefore allowed home on Wednesday afternoon with a new nasal gastric tube and a couple of days of oral antibiotics to take....banana flavour this time! Also, Fintan's blood count dropped to a level whereby the doctors were considering giving Fintan a blood transfusion, however they have decided to leave it until Friday when they will do another blood count in the hope he will recover naturally.

The stays in hospital have a big affect on Archie and Barnaby. Archie is a very sensitive boy and adores Fintan. He has had a lot of tears going to school this week and has not wanted to go, I have had to literally drag him in. It's because he misses his little brother and his mummy, and also he worries desperately about Fintan. I must say, both Fiona and I find this part of the whole process particularly stressful. We know that Fintan is too young to remember any of what is happening to him, but the boys, especially Archie will remember this for a long time. I only hope it's not having too much of a toll on them.

There is some good news. We are really seeing an improvement in what Fintan seems to be seeing. He is reaching for very small items, and he even sees objects on the same colour background. For example the white tubes from his central line on a white, cotton bed sheet. He has also started shuffling about on his bum...backwards. It's not the most efficient mode of transport, but effective nevertheless. Fintan has also discovered his brothers toys, and as you can see in this short video clip, he knows what he wants and he gets it!

....also, check out the dancing in this one!

Penultimate Chemo Cycle

2008-02-15T20:45:00.006Z

On Tuesday Fintan had his 5th and penultimate cycle of chemo. We were a little unsure whether or not it would be going ahead since he had the infection the previous week, but we had his blood count measured on Monday and all was okay.

Fintan was great as usual, I think he now knows what to expect and just sits there and plays whilst it all goes on. He was a little sick and agitated at times, but who can blame him.

At the hospital they have an ex-patient who volunteers on the ward which Fintan attends. He helps to entertain the children by doing magic tricks and making balloon animals, etc. I was playing cards with him and a young patient, when he revealed he was registered blind and could only see a very small area about 1/2 a metre in front of him, and only out of one eye. I found this incredible as, even with his extremely limited vision, he still navigated about, played cards, built balloon animals without it being at all noticeable that he was blind. Hopefully Fintan will be left with more vision than Simon, but nevertheless it is very reassuring to see how someone can get by so brilliantly without a sense we take so much for granted.

As usual, Fintan had a nasal gastric (NG) tube fitted so we can give him his anti-sick medicine; unfortunately he got really distressed when it was pushed in and it took several attempts before it had been successfully inserted. The poor little lad, however, you'd think he'd learn, but no, he pulled it out again on Wednesday morning and had to go through the whole ordeal once again.

Fiona had to take Fintan back into Wycombe hospital today, as the area around where his central line exits his chest had become red and weepy. It seems he has another infection and is on a 10 day course of antibiotics, again. So he'll be keeping his new NG tube for a while so we can give him his medicine, and it's 10 days of administering medicine at midnight - oh joy! (Although I won’t be moaning too loudly, as Fiona might make me stay in hospital next time!)

Finally an apology; I forgot to pack the camera on Tuesday so no cute hospital pictures this time!

Update

2008-02-06T21:53:00.000Z

As some of you may have heard, Fintan has been in hospital since Sunday morning. Don't worry though, he came home today and has actually been bouncing around his hospital bed since about Sunday lunchtime.

We took Fintan into Wycombe hospital after his temperature went very high on Sunday morning. He seemed really well in the morning, after suffering with a cold for a few days, he was smiling and giggling as usual and ate all his breakfast with the usual gusto, but shortly after he became lethargic and non-responsive. At the hospital, he soon picked-up, but nevertheless it seemed Fintan had an infection somewhere so the doctors needed to keep him in. They checked his blood counts and found he was neutropenic (when his body can't fight infections itself) so they started him on three different antibiotics. Thankfully, the results of some blood cultures came in today which showed nothing had grown and this meant two of the antibiotics could be dropped and that Fintan and Fiona could come home.

Despite the recent infections, and losing a bit more hair, Fintan really is doing well. He's really interacting with us, and enjoys a good game of peek-a-boo. He's no longer a baby and is becoming more of a boy, which is great to see considering everything he's going through. Fiona's taken a couple of video clips of him recently which I will try and upload over the next few days so you can see what I mean.

Fintan is due to have his 5th cycle of chemo on Tuesday next week; we'll let you know how he gets on shortly after then.

Some Pictures

2008-01-24T23:48:00.000Z

Probably the last time Barnaby asks what Daddy did at work today!

Fintan also takes in a few Zzzzzzz

Fintan sees his brothers gawping and thinks it would be rude not to join in, but it's just not quite so much fun without a TV to look at!

Just look at how well Fintan is seeing the camera in this video.
It's not all that interesting, but so heart warming and encouraging to see, it's worth the 1 min 15.

Round Four

2008-01-23T20:45:00.000Z

Fintan had his 4th course of chemotherapy yesterday despite suffering another line infection. He had been due to have his chemo last Friday, but as he was still neutropenic it was delayed until his blood count had improved, however, I still did not get a day off from the hospital!

On Friday morning we noticed a now familiar red patch where his Hickman Line tracks, so I did the school run and then took Fintan to High Wycombe Hospital who confirmed that he had an infection. Fortunately, the infection was not as bad this time and he only needs oral antibiotics, which of course adds it own little problem in that Fintan requires a nose tube as he will not take medicine orally. Fintan was allowed home just in time to pick up Archie from school! However, he had pulled his nose tube out within 24 hours, so James took him back to the Hospital on Saturday afternoon for a new tube and a little more sticky tape - and it is still in place now!

As Fintan's blood had recovered, we went to the John Radcliffe in Oxford yesterday. The day went really well and Fintan seemed to tolerate the chemo better than previously. He was playful and chirpy all day and never complained. The hospital staff commented on how Fintan was filling out (is that a polite way of saying he's a fatty?!) and how well his general development was coming on. This is the first chemo where Fintan has been on solid food, but his appetite wasn't affected and he managed to eat really well all day. He is off his food today, but still smiling and making lots of noise!

Barnaby came with us on this visit and seemed to enjoy himself, especially his packed lunch which was finished by 11.00 am and dinner in the Hospital canteen - Barnaby likes his food! Archie joined us after school and helped Barnaby to test run every toy in the playroom!

Fintan's next chemo is in 3 weeks time, then he will have an eye examination at the Royal London just under 3 weeks after that, followed by his 6th and last course of chemo.

Wedding photo is a life saver

2008-01-22T22:21:00.000Z

Fintan's Grandad O'Brien added this as a comment on an earlier post today. I thought you might like to read it so I have added it here. It's an extract from a newspaper article he read in the Daily Telegraph, but I also found on the Sky News website.

http://news.sky.com/skynews/article/0,,91251-1301810,00.html

A photograph at a family wedding saved three-year-old Sophie Ripley's life as she posed for pictures with her twin sister Molly. Their parents looking at the pictures days later noticed Sophie's left eye had a black spot.A specialist diagnosed retinoblastoma and Sophie from Shiregreen, Sheffield, had the eye removed in a life saving operation.

Reported in the "Daily Telegraph" today 22nd January 2008.

Update

2008-01-17T21:12:00.000Z

Following Fintan's positive visit to the Royal London, we had been rather worried about the fact that he was still be very sick - post chemo sickness usually lasts 2 or 3 days, but 1 week after treatment Fintan was still struggling to keep his feeds down. We took him to the John Radcliffe in Oxford on Saturday 5th Jan, as they agreed that the sickness should have stopped by now. However, the doctors decided that it was just a combination of treatment, his central line infection, antibiotics and having undergone a general anaesthetic. We came home, still a little worried, but by Monday he was a different boy! He started eating, not just a few spoons of food, but 3 good meals a day; until now we had been struggling to get Fintan to eat solids, but now he can't get enough. He even had a taste of his very first ice cream today (which he stole from Mummy!)

Last weekend, my family come up from Southampton and Cornwall; it was lovely, especially as Fintan's Uncle Simon and Auntie Jo haven't seen him since he was diagnosed.

Fintan and his cousin Jess.

In the last couple of weeks, Fintan's physical developmental progress has come on by leaps and bounds. He seems to have a new found confidence and is even sitting without any support. His latest trick is dropping objects on purpose - not a lot of fun for Mummy!

Fintan was due to have some more chemotherapy tomorrow, but he has been neutropenic for a week or so (when part of his blood count is very low and makes him at risk of infection) and he hasn't recovered in time. He will have his blood count taken again on Monday and, if his blood has recovered and the doctors are happy with the results, he will have his chemo on Tuesday.

I will try not to leave it so long between posts, and I hope you all haven't been worrying too much. It's been a busy few weeks with one thing or another.

Bye for now.

We're all feeling very optimistic...

2008-01-02T22:32:00.000Z

Fintan, Barnaby, Fiona and I have just got back from a visit to see Mr Hungerford at the Royal London Hospital. Fintan had his eyes examined to see how he was responding to the chemotherapy and Barnaby to ensure that he had not developed the condition.

It was a very positive day. Firstly, Barnaby has not got any signs of Rb at this time; Mr Hungerford will check him again in 6 months, but we are told it's unlikely Rb will develop in a child of his age. Barnaby was very brave when being given the anaesthetic. He was a little grumpy when he came round, but soon got his appetite back and ordered me to fetch him some lunch!

It's fabulous news again with Fintan; in fact I'm overwhelmed with happiness writing this for you. He is responding really well to the chemotherapy and the tumours on his retinas are reducing and calcifying nicely. Mr Hungerford spoke to us after examining Fintan's eyes and told us that he is very happy with the progress and that this is after only 3 courses of chemotherapy. He also gave us some before and after photographs of Fintan's retinas which clearly show the improvement. I have scanned and uploaded them below. I won't try and explain them too much as I am not an expert, but the top two pictures are the 'before' images. You can see the three large round whitish blobs which are the tumours. In the bottom two 'after shots', you can see that the tumours are more chalky and appear less dense. We were quite shocked at the size of the original tumours, but Mr Hungerford explained that these are close-ups of the centres of the retinas, the retina is much larger so the tumours do not cover the whole surface; however, the centre is responsible for detailed vision, which is why it affects the sight so much.

Fintan's Retinas (click the image to see a larger version).

Here are a few photos from today:

Fintan sleeps off the anaesthetic.

Barnaby soon bounced back to his normal, playful, self.

One very tired and worried, but still very beautiful and brilliant mum.

Clearly the headphones are not for Barnaby sized heads. But not to worry, Daddy's gloves will hold them in place (for the nerds at Motorola, they are MC70 gloves!).

Update

2007-12-31T22:35:00.000Z

After a lovely family Christmas where all three of the boys had a very exciting time, Fintan had another dose of chemo at the John Radcliffe in Oxford last Friday. Unfortunately, things didn't go as smoothly this time. Before we left for the hospital in the morning, we noticed that the skin on Fintan's neck was looking red where his hickman line tracks. The doctors decided that he had a skin infection; Fintan still had his chemo and was prescribed some oral antibiotics to help fight off this infection. This created another problem, Fintan will not take medicines orally - as soon as we give him anything, he just vomits it back up again! So we all decided that the best thing was for Fintan to have a gastric tube fitted so we could give him his antibiotics, Calpol and anti-sickness medicines through this. Fintan has not really looked ill so far, but having had the tube fitted, makes it more obvious that he is poorly.

We got back from Oxford at about 6.00 pm, only to discover that Fintan had a raging temperature, he looked awful and was limp and grey. We were back at Wycombe Hospital by 7.30pm; he was examined and bloods taken and released at about 1.15am as there was no obvious reason for his fever, he was quite happy and his temperature had come down. However, we were back at Wycombe Hospital by Saturday afternoon as his temperature had rocketed again. It was decided that he must have had an infection brewing in his hickman line and when they accessed it in Oxford to administer his chemo it pushed the infection into his blood. Fintan was released Saturday evening, but we are now in and out of Wycombe Hospital on a daily basis to have antibiotics administered intravenously as the oral antibiotics were only for skin infections and would not have helped fight the line infection.

Anyway, Fintan no longer has a temperature and seems to be fighting off the infection. He also made the decision to remove his gastric tube, as it is no longer required, and did so sometime in his sleep last night!

On Wednesday, Fintan and Barnaby go to the Royal London Hospital to have their eyes examined by Mr Hungerford,the retinoblastoma specialist. Hopefully we will find out how Fintan is responding to the chemotherapy. Barnaby is being examined to ensure he does not also have Rb. We will update you on how they got on later in the week.

Finally, here are a few pictures from Christmas and Friday's day out at Oxford. Happy New Year and here's looking for a good 2008.

Fintan opening his stocking.

Fintan showing the diversity of the NHS sick bowl/hat!

Barnaby can't eat his Christmas dinner any faster!

Now which toy has the brightest lights?!!

Archie tells his Christmas Cracker joke...heard it!

It's a chair not a potty!

Merry Christmas

2007-12-24T20:12:00.000Z

I just want to say a quick Happy Christmas to everybody, and to thank you all so much for your support and kind words over the last couple of months. I hope you all have a great time and look forward to seeing you all soon.

I'd also like to add my thanks to Russell and his band, not only for raising awareness of retinoblastoma, but also for some top brass, and for inviting me to the Christmas evening at a pub where he was collecting for CHECT. The tiny village pub was crammed with revellers all joining in with the music, it was wonderful fun, but also, the only time that I have squeezed into a pub, only to be greeted by a stranger who asked "Do you drink beer?", he then called to the bar to get me a pint! Fantastic! I'd love to disclose which pub this was, but I was sworn to secrecy by one of Russell's fellow band members not to tell anyone about the place in fear that it's local atmosphere might be ruined!!

Finally, as many of you and your friends will be taking photos this Christmas and New Year, please take a moment to check that none of the kids are getting a white eye reflection. If you are not sure what to look for, take a look at this link: http://www.chect.org.uk/page.php?id=9&s=0. Diagnosing this disease early makes all the difference.

Merry Christmas.

Full of Beans!

2007-12-24T17:39:00.000Z

Fintan has just given us an early Christmas present - he has eaten some solids!! (Those of you with children will have some understanding of the trials and traumas of weaning.) After several weeks of steadfastly refusing solids of any sort, we have finally found something that Fintan will eat - Baked Beans! Even if this is all he will take for a week or two, it's a start. However, Archie, who is a big Dr Who fan, is concerned that too many beans will make Fintan fart like a Slitheen!

A big thank you to Russell Barr and his brass ensembles for raising awareness of Retinoblastoma and collecting donations for CHECT. Also thanks to Hamilton Primary School for organising collections at their Christmas productions.

Wishing you all a Happy Christmas!

Editorial Update

2007-12-16T12:32:00.001Z

Further to James' update yesterday and his comment "yes, Fintan is looking at the camera" before you all start feeling sorry for him, James' picture was not very flattering and Fintan is, in fact, a very handsome boy!!

A Little Good News

2007-12-15T23:26:00.000Z

Over the last week, Fiona and I have noticed that Fintan seems to be seeing more. He is fixing and following on objects we hold in front of him, even if we move the object relatively quickly. We are so pleased with this development, it makes the hope of him being able to read and enjoy the things we do more of a reality. Until Fintan goes back to the Royal London for his next eye exam just after the new year, we cannot be sure if this is because the chemotherapy is reducing the tumours, if this is purely down to him adapting to what he has got, or even if it is simply normal developmental progression; either way, it's a real step forward and we are very, very proud of him.

A couple more recent achievements: Fintan is now almost sitting on his own, and is even saying "Daddy" :-) I have to admit, it's more of a "Da.........DEEE", but I know what he means!

There will be video evidence soon.

Finally, here is a picture of Archie, Fintan and Barnaby to wish you all a bit of Festive cheer. I hope you appreciate it, it only took me about 200 shots to get them all to finally look at the camera, and yes, Fintan is looking at the camera ;-)

Update

2007-12-09T13:38:00.000Z

On Wednesday, Fintan had his second dose of Chemotherapy. It was another long day, but Fintan was really good as usual. He seemed more bothered by it all this time, occasionally throughout the day he would suddenly get upset and squirm about as if he was uncomfortable or in pain. This was hard to see at times as there wasn't much we could do to comfort him. He has also been more affected by the sickness this time.

To the right is a photo of Fintan in his hospital bed. I can't tell if he is looking at his infuser with the respect that it is helping him, or with contempt at the discomfort it's causing him.
Archie and Barnaby came over to visit him in the afternoon, after a quick hello to make sure Fintan was OK, they thought it would be a good idea to make sure the play room was in good working order...it was.
Fintan has discovered that he can yelp (kind of like an excited American baseball fan "whoa, yeah"), this is all very amusing to him, especially at 10 o'clock last night when Fiona was trying to get him to sleep!

We are all getting very festive here, the tree is up and decorated; and chocolates have been duly dispersed around it. Archie and Barnaby seem to be most interested with this addition, and keep reminding us of their whereabouts. Fintan on the other hand likes the fairy lights...nice and bright, and hundreds of them.

Fintan is next in the Hospital between Christmas and New Year. The good thing about that is it means that he will be hopefully be feeling at his best for Christmas Day.

Anyone For Cheese?

2007-12-04T22:58:00.000Z

Fintan isn't interested in taking any solid food whatsoever, anyone got any suggestions? However, he does love to have a good gnaw of his feet...I think the sock fluff between his toes is a real treat!

Next Dose of Chemo

2007-12-04T22:23:00.000Z

Tomorrow, Fintan goes into the John Radcliffe for his second dose of chemo. Hopefully this time will go as well as his first dose, but I guess we have to expect the effects to be worse this time round as we are told the medicine is accumulative.
Tomorrow afternoon, Archie and Barnaby are coming to the hospital to see their little brother, but also to see that it's not all that bad and that he is in really good hands. We are hoping it will reassure them, and make them feel a little less scared when he goes off for treatment.

Since his first dose, Fintan's has had his blood counts taken regularly, as Fiona mentioned in her last entry. When they take the counts, they look at the haemoglobin, white blood cells, neutrophils and platelet content in his blood (I'll let you look them up on wikipedia for an explanation!!). If any of these are too low, they may decide to either give Fintan some antibiotics, or do a blood transfusion in order to give him a boost and help fight off infection, or stop him bleeding etc. Thankfully he's proved to be a strong little lad, and his counts never really got too low. Let's hope he continues this way throughout the rest of the treatment.

Fintan has had a cold the last few days, so as those of you with kids will know, this means loads of snot, but as always, Fintan has still been smiling and giggling through it...nothing seems to faze him.

Things are starting to get a little more normal at home now. I have been getting back into work (btw, thank you to everyone who has been covering for me while I've been out, it's been a real help), Fiona has nearly done all the Christmas shopping, it's a good job she's organised, if it were down to me I'd be running around the week before, for sure; and the boys are being nagged to switch off the TV and to finish their dinner...so business as usual really.

Finally, thanks to everyone for their comments and emails. Your thoughts really are a help and very much appreciated. I shall update you all again after Fintan's day at the hospital tomorrow.

Update

2007-11-25T09:45:00.000Z

Just a short update. After the little blip at the beginning of the week, things have calmed down. Fintan is keeping well (by that I mean he is avoiding hospital!); he is feeding and sleeping better and, of course, still smiling. He is having his blood counts checked every 2/3 days at the moment, as now is the time that his immunity is at risk of becoming too low to protect him from infections, etc, but it should start rising again soon - in time for his next dose of chemo in 10 days time.

The Light's Fantastic

2007-11-19T21:43:00.000Z

Sometimes, when I'm holding Fintan, he looks at me and smiles. It really makes me feel good. I think, maybe he can see more than we thought...but then I realize there's a light over my shoulder!

Fintan loves lights.

Spot lights, street lights, strip lights, and especially sun light.

Here's a little video of Fintan with his favourite toy; a musical drum with, yep, lights. As you'll see, he likes it so much, he wants to eat it!

Mummy's Boy

2007-11-19T11:03:00.000Z

Fintan had a pretty good weekend, his appetite is beginning to improve and he even managed to eat (slurp!) a fair amount of puréed pear yesterday! This is far better than the rest of us managed - Barnaby brought home a nasty sickness bug, which he kindly passed onto James, Archie and then myself...........I was going to say Fintan had managed to avoid the bug, but I have just spent the afternoon at Wycombe Hospital to have him checked out as he was quite sick this morning (probably bug, not chemo side effects). They checked his blood counts, but fortunately his platelet count is high enough and he will not need a transfusion - apparently this is a perfectly normal side effect of the chemo.

I find the responsibility of caring for Fintan at home very stressful, but I wouldn't have it any other way - I feel completely lost when he is not with me. I am sure we will all get used to the new routines and unplanned hospital visits, etc, it is all just a bit new and scary at the moment. We are receiving so much help and support from our family and friends and the hospitals are only a phone call away - thank you!

This little video clip of Fintan was taken before his treatment started - I think we have a budding piano virtuoso on our hands!

How I Feel About Fintan's Illness. By Archie.

2007-11-17T13:33:00.000Z

Archie wanted to let you all know how he was feeling. This post is Archie's thoughts in his own words.

"I feel pretty sad about Fintan's illness actually.

"What scares me the most about the illness is him going to hospital. This scares me because he has to have his special medicine. I don't like it when mummy is very sad when she comes home from the hospital and she cries. I feel sad for Fintan and mummy when she cries. I think the medicine they are giving Fintan is horrible but I understand that he has to have it.

"The things in Fintan's eyes are horrible. I wish he didn't have them.

"Sometimes mummy and daddy get upset at times, I think this is because they are worried about Fintan.

"I like it when Nanny and Grandpa, and Grandma and Grandad look after me and Barnaby. It's fun and nice to see them. Nanny made a house with me, it was brilliant. I call the house The Triangle House.

"I'm not sure how Barnaby feels about Fintan's illness; I think he is worried about it too.

"I wish that Fintan's eyes were fine; I hope he gets better soon."

First Dose Of Chemotherapy: Part II

2007-11-16T20:45:00.000Z

On Wednesday, Fintan had his first dose of chemo, it was administered via a drip into his newly fitted line over 5 hours or so. As usual, he was great, just played, slept, ate, pooed and peed all day. There is a short video of him playing under his play-mat whilst getting his drugs; you can just about see the drip in the back ground.

You may have noticed a yellow "TOXIC" label on the drip. Apparently this is no exaggeration as we have been supplied with a box of surgical gloves to wear when changing his nappy! I always thought his dirty nappies were hazardous, but didn't think they would ever burn my skin!

Fintan has reacted fairly well to the chemo. He was a little groggy yesterday, but today he was a bit sick too. We think that the anti-sickness medicine they gave him at the hospital has worn off, and he doesn't like the stuff they gave us to give him, he has to take it orally and it's making him gag; it is somewhat ironic that the anti-sickness drugs are making him vomit. Fiona is actually at the hospital now with him as I type this to get some pushed into his line so he feels like eating a bit more tomorrow.

All in all, his first lot of chemo wasn't too bad and he seems to be faring pretty well on it.

Fintan Had His Central Line Fitted

2007-11-13T23:40:00.001Z

Fintan had his central line fitted today, the tubes they will be using to administer his chemo drugs and to take blood samples from, over the next months. It was another long day, and Fintan again had to go for most the day without food, and yet he didn't really make a fuss at all. Fiona has stayed with Fintan at the John Radcliffe in Oxford tonight and he will be having his first lot of chemo tomorrow.

This morning Archie and Barnaby had a nice cuddle with their brother before he left for the hospital. They are very worried about him, but are coping extraordinarily well. Barnaby knows something is up, and is asking questions about Fintan's eyes, but doesn't really understand what's happening. Archie is a sensitive boy and is very worried about Fintan, but I think he is also enjoying the attention he is getting from the family, and is also enjoying telling his Nanny how to do everything!

Before Fintan was taken down to the theatre to have his line fitted, he was put in a little gown, and it looked so sweet I had to take a picture...

I have to say, being on the ward today, there were a few other kids there who were in the middle of their treatment. Although these kids had lost their hair, and a couple needed help walking about, so had wheel chairs or crutches, they were very happy, and just got on with it all. It was reassuring to see how well they coped.

There were a couple of things I found hard today; it was hard to have to hold Fintan down while the doctors struggled to find a vein to take blood samples from, it was heart wrenching to see him fight the anaesthetic gas when he was put to sleep, and it was also hard when we were told they prefer to insert a central line, because administering the chemo drugs through a cannula in the hand is unpleasant as the drugs are so toxic, they would burn the skin...what the hell is in these drugs?

As a parent, this whole chemo thing is tough, nowhere near as tough as it will be for Fintan, but to consent to something that you know is going to make him feel really shit, especially when he seems so fit and well, is hard.

Fintan And His Brothers

2007-11-13T06:52:00.001Z

Fintan, Barnaby and Archie.

First Dose Of Chemotherapy

2007-11-12T23:07:00.000Z

Tomorrow Fintan is going into the John Radcliffe for his first dose of chemotherapy.

He will be having a hickman line fitted in his chest, this will be used to administer the drugs throughout his treatment and to take blood samples from. We are hoping to have a special line thing fitted (sorry, I can't remember the name). Normally the line has an exposed plastic end which can get pulled or in Fintan's case, probably sicked on! The other type is under the skin so is not exposed. The downside is that he will be pricked every time he has blood samples taken or when the drugs are administered, although they will numb the area with "magic cream" first.

After having the line fitted, if all goes well, he will have his first does of chemotherapy. Fiona will stay with Fintan over night, he will hopefully be allowed home on Wednesday.

I have to say, right now I am feeling very scared for my little boy, I get the feeling he is going to be braver than me tomorrow.

Fintan's First Visit To The Royal London

2007-11-10T22:27:00.000Z

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.

The Worst News Possible

2007-11-10T21:05:00.000Z

A little over a month ago, Fiona asked me if I thought Fintan was developing a squint, I looked and I was unsure as baby's eyes often look a little squinty. However, I had noticed that his eyes sometimes jittered about rapidly. Fiona pointed out what we had noticed to Fintan's health visitor, and thankfully, she recognised the jittering as something they call nystagmus and referred Fintan to see the GP. She in turn was not happy with Fintan's eyes along with a small lump which had developed on his temple. She decided that Fintan should see a paediatrician. At this point Fiona and I were getting increasingly concerned with Fintan's eyesight so decided to make use of the private medical care I receive through work. Fintan then saw Dr. Brown at the Chiltern Hospital. Dr. Brown took a look at the lump on Fintan's temple and decided to have it X-Rayed (the results of which showed it not to be of concern), he was also not concerned with the flat shape to the back of Fintan's head which is caused by babies laying on their backs. Dr. Brown was not happy with Fintan's eyes though and decided he should see the ophthalmologist.

On Friday 2nd November, Fiona and I took Fintan to see Mr Benjamin, a consultant ophthalmologist at the Chiltern Hospital in Gt. Missenden. Both Fiona and I had thought we had prepared for the worst possible news, we had thought that perhaps Fintan was losing his sight, and that he was going blind. Mr Benjamin sat Fintan on Fiona's lap and took a look into his eyes with a special pair of goggles. It took him only a few minutes, he then looked us in the eyes and said that there was no other way to say this, but Fintan has tumours growing on his retinas.

There are no words that I can find that can describe how it feels to be told your 5 month old baby, your perfect little bundle, has cancer.