Disappointing News

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

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

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

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

Better News

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

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

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

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

Feeling Better!

Update

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

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

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

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

'School of Rock'

Pirate Fun!

Belated Update

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

Drink up Fintan, time to go!
 

Better News

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

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

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

                                            

Wait and Watch

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

Wacky Races again!

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

Post anaesthetic grub!

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

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

Disappointing News

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

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

Pre-treatment fun!

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

Post-anaesthetic strop!

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

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!