Another Quick Update

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

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

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

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

Quick Update From Devon

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

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

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

Quick Update

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

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

Until next month ......

Oliver mastering the bed controls!

Food!

Disappointing News

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

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

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

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

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

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

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

King Fintan celebrates his 3rd Birthday!

Looking Better!

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

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

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

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

Until next month..

Zzzzzzzzz

Update

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

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

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

Cake time!

Mr H

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

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

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

Brotherly love!

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

Long Overdue Update

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

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

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

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

Until next month....

Post anaesthetic cake!

Fintan ruling the roost at home!

Happy New Year!

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

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

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

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

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

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

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

Happy New Year!

Fintan admiring the Christmas Tree

Opening presents on Christmas Day

Fintan demolishing a cake after his EUA

Belated Update

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

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

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

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

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

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

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

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

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

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!

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!