Update

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

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

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!

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

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 !

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

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

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

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

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

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

Story time with Tara

Unscheduled Hospital Visit No.1 !

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

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

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

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

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

Chemo 1 of 4

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

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

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

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

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

Zzzzzzz - post anaesthetic

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

TV dinner!

Zzzz - again!

Another Course of Chemotherapy

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

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

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

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

Showing off his (nearly) matching eyes!!

Bouncing Back!

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

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

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

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

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

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

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

Fun in the ball pit!

Biscuits and TV!

Sick bowl use No.1 - hat

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

Sick bowl use No.3 - the Gruffalo

Bad News

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

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

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

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

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

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

Update

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

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

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