Intra-arterial Chemotherapy

Fintan had his first dose of intra-arterial chemotherapy this week at Great Ormond Street Hospital.  The procedure wasn't without its problems, but the melphalan was successfully administered to his eye.

We went to GOSH on Tuesday for Fintan to have an electroretinogram (I may have the wrong name here) - electrodes were placed on various parts of Fintan's head and he was then exposed to flash/pattern stimulus and lights and the results recorded.  He was allowed to watch a DVD when there was no stimuli present, but as this wasn't often he soon got fed up and kept asking to go back to his Mickey Mouse DVD!  The test took about 45 minutes, but felt a lot longer!  Fintan then needed a blood test; not an easy task, but after a bit of screaming and a few tears the job was done and we headed home.

We returned to GOSH on Wednesday morning for an early 7.00 am start.  Due to the cancellation of the first procedure of the morning, Fintan went down to theatre earlier than expected at about 10.00 am and was back in recovery by midday.  However, before he could return to the ward he had to stay in recovery for another hour or so because the incision in his groin (where the catheter to administer the drugs was inserted) continued to bleed and pressure had to be applied to the site. Fintan had the occasional moan, but was very tolerant of all the fussing around him.  Back up on the ward he had to remain semi-reclined in bed for 4 hours, but was able to watch TV and have something to drink and eat.

Taking it easy










Before treatment we had been made aware of all the possible problems that could occur, but post-procedure everything appeared fine; no swelling around the eye, no droopy eyelid and no immediate vision deterioration.  However, once they got a urine sample from him it became more clear why they had been chasing him for a wee all afternoon!  His urine showed a high glucose level so blood sugar levels needed to be checked; the result was high and it was then explained that the steroids given in theatre and the follow up steroid medicine can affect blood sugar levels and would need monitoring for several hours. Fortunately, we had come prepared for an overnight stay!

By midnight Fintan's blood sugar levels had reduced and remained low, so after a very long Thursday morning, and a brief visit from Elmo, we were allowed home after lunch.  Fintan has to have a daily blood sugar level test until Monday and as long as it remains stable he will then just continue with steroid eye drops until his EUA at the Royal London in 4 weeks time.

Killing a bit of time with the iPad

                                       Surprise visit from Elmo!

Mixed News

Fintan was back at the Royal London Hospital yesterday (23 Jan) for his EUA to see if the new tumour had responded to cryotherapy treatment.  The consultants had not been very optimistic that the cryotherapy would work, but I think to everyone's surprise the tumour has now started to respond.  However, another area in the eye, previously treated with a radioactive plaque and which the consultants have been monitoring for some time, appears to have relapsed and is slowly spreading towards the new tumour.  Further treatment is required on the new tumour, despite it starting to respond to cryotherapy, and also the relapsed area.

A radioactive plaque is not now considered the best option because of the size of the area to be treated and the damage to other parts of the eye it would cause.  After much discussion, weighing up the pros and cons of various treatments (plaque, intra-arterial chemotherapy and 3rd line systemic chemotherapy), we have opted for Fintan to have some intra-arterial chemotherapy (melphalan).

He had this treatment in his right eye about 3 years ago and we initially felt it had not been very successful, but the consultants have been been over his notes very thoroughly and explained that the problems he had post melphalan were caused by other factors.  Also, at the time Fintan had this treatment previously he was only the third NHS patient to have this procedure and it has now been fine tuned and a little more practised!

Chemotherapy drugs will be administered directly to the back of the eye via a catheter inserted in the groin and fed up to the ophthalmic artery; this should just be a day case but he may need to stay in overnight.  It doesn't cause the traditional chemotherapy side effects of nausea, hair loss or attack the immune system, but his vision may deteriorate temporarily, haemorrhaging in the eye may occur or a droopy eyelid (or all three!) but these symptoms usually clear over the following few months.

Fintan will have an EUA 4 weeks later and it will be decided then whether a second dose is required.  If this doesn't do the trick, we hopefully still have the options of a radioactive plaque or traditional chemotherapy; both have risks, but we have to try everything we can to retain some vision for Fintan.

A pancake makes it all better (well a little bit)!

Update

We returned to the Royal London Hospital on Wednesday (2nd) for Fintan's EUA and follow-up cryotherapy.  Unfortunately, the news was not so good; the tumour in his left eye does not appear to be responding to the first dose of cryotherapy, but a second dose was applied and Fintan is back in 3 weeks to see what is happening.  If the tumour is still not responding alternative treatment will be necessary; this has already been discussed with the retinoblastoma team and it is more than likely that Fintan will require a radioactive plaque.

Although Fintan has had this type of treatment before, it will be a lot tougher for him this time; the plaque is inserted in his left eye and is patched up for several days and, with no vision in his right eye, he will be in darkness and not allowed to leave his room for the duration.

Despite this worrying news, Fintan is still full of energy and keeping us all entertained!

Trust you all had a good Christmas and wishing you a Happy New Year!

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