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!

Isolation

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

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

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

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

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

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

Crisps will make anything feel better

"Cars - Vrooom!"

Boredom sets in

Fintan tests the door for weaknesses!

The guilt trip - Donations Welcome!

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

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

Update

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

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

Radioactive Plaque

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

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

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

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

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

Play time!

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

A little pre-op rest

Some well deserved crips...mmmm

Update

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

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

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

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

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

Fintan and his Merry Men!

Baaaaa!

Postponed!

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

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

Until next week ....

Back at the hospital

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

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

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

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

Fintan has a post-anaesthetic sulk!

Hurrah!

Good News!

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

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

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

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

Update

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

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

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

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