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.

Finished in time for Christmas!

Fintan had his final dose of Radiotherapy today and coped really well as always. He is looking a little sore around the eyes at the moment and it may get worse before getting better, but it doesn't seem to bother him too much - he just gets a few funny looks when we are out and about!

Archie and Barnaby came to the hospital with us today so they could see where Fintan has been going for the last 5 weeks; they were totally unimpressed and very disappointed the drinks machine had run out of hot chocolate! However, we took them for a pizza, a trip on the underground and admired the Christmas window displays at Fortnum and Mason and Selfridges which they thoroughly enjoyed. Fintan found it all a bit busy and noisy and was pleased to get "home" (his word of the moment)!

Although we are glad it is all over and delighted not to have to travel into London at the crack of dawn each day, we will sort of miss Barts! The intensity of the treatment means you soon get used to the routine and you almost forget life pre-treatment, so we now need to adjust back to normal life.

Fintan will have an EUA (examination under anaesthetic) at the Royal London in about a month's time to see how the tumours have responded to the Radiotherapy. It seems like a long wait, but Christmas will help pass the time!

Here are few pictures of Fintan (with his lovely Teddy Bear present from the team who have been treating him at Barts).

Fintan enjoying dessert after a Post-Treatment Pizza!

Fintan and his new Teddy

Sound asleep with his new teddy

Wishing you all a Merry Christmas and Happy New Year!

6 Doses To Go!

Fintan has finished another week of Radiotherapy and is still smiling!! He continues to cope really well with the daily anaesthetics and tedious drive to and from London. He has developed small red patches on both sides of his face by his eyes - the radiation exit point; this is similar to sunburn but it doesn't seem to be bothering him at all. Mind you, Fintan never complains - I noticed one of his back teeth has come through and another is breaking (both Archie and Barnaby cried at night for weeks when their back teeth came through!)

Fintan has a quite a fan club at the Hospital! We see the same people daily until their treatment finishes, but there is always someone new starting and Fintan is quite happy to introduce himself.

With 6 more doses of Radiotherapy to go, Fintan's last treatment date will be Monday 22nd December. As the boys will have finished school, we will take them with us so they can see where Fintan has been going for the last few weeks and, if Fintan's up to it, we will take them out for a treat in London.

Fintan Post Anaesthetic


Fintan Admiring The Christmas Tree

2009 Flora London Marathon

I have registered to run the 2009 Flora London Marathon to raise money for the Childhood Eye Cancer Trust (CHECT). Fiona and I have been doing some running over the last 6 months or so, but as of January I will be cracking open the bulk-buy pasta and starting my pre-marathon training.

This will not only be my first marathon, but also my first race...gulp! The plan is to try and complete the 42.16 kilometers (26.2 miles) of London's historic roads in about 4 hours, but just to finish will be a real achievement. I imagine that it is going to be hard work, however, Fintan can go through what he does without barely creating a fuss, so I will be using him as inspiration to get me through it.

CHECT have been a great source of support and information to us over the last year or so and they will no doubt be invaluable to Fintan throughout his life as his needs change. They also continue to raise awareness of this rare disease so that other children could be diagnosed earlier, hopefully reducing loss of vision and minimizing the need for eye removal.

So here comes the plea; please, please, please dig deep into your pockets and sponsor me for this worthy cause.

I have set up a JustGiving page, which you can access via the link below to pledge via the Internet....or if you'd prefer, I won't be going anywhere from now until 26th April 2009 without a sponsor form!

The JustGiving page is here: http://www.justgiving.com/jamesmorleysmith

If you are a UK tax payer, please select the Gift Aid option as this will add an extra 25p for every pound pledged.

Thanks in advance for your kind generosity.

9 Down 11 To Go!

There's not much to report at the moment. Fintan is coping really, really well with all the trips back and forth to the hospital. He is even starting to get used to the anaesthetic and today he didn't cry at all.

As Fintan is starved all morning, he is very keen to get some food into his tummy as soon as he comes round. His need for food continues when he gets home, here is a picture of him enjoying a slice of post treatment toast.

6 Down, 14 To Go...

Last week Fintan had doses 4, 5 and 6 of his radiotherapy. Fiona took him to London by herself and I stayed back home to make sure Archie and Barnaby got to school.

Fintan is getting used to the routine; being starved in the morning and setting off for the hospital when it is still dark! At the Hospital, he likes to walk around and around the waiting area - out one doorway and in another, making friends with some of the other patients on his way! If anyone is eating or drinking anything he lingers a little longer and sometimes even smacks his lips (his way of asking for food).

Besides his empty tummy, Fintan seems to be coping very well at the moment. But by the end of this week he might start to feel more tired and may develop sores on the sides of his head - the exit points of the radiation beam. He is at the Hospital everyday this week, plus he has an extra visit to the Royal London on Wednesday afternoon; it will be a very tiring week for everyone.

Here are a couple of photos from his visits so far:

Fintan Starts Radiotherapy

Yesterday Fintan had his first dose of external beam radiation therapy.

It was an early start for us all as we had  to be at St Bartholomew's Hospital in London by 9am. Fintan had to be starved as he will have a general anaesthetic for each dose; the treatment is not painful, but he must stay perfectly still.

Fintan was as good as gold as always, he did not grumble at being woken early or at being denied his breakfast.  He did have a cry when he was taken down to the treatment room, although I can hardly blame him as the room was not exactly welcoming with the radiotherapy machine in it, something which can only be described as closely resembling James Bond's evil nemesis death ray!

The treatment did not take long at all, in fact he was only away from us for about 40 minutes, and this was longer than normal as they needed to create a mould for his head (so that it lies in the same position each day).  When he came to from the anesthetic, he was a bit drowsy but was drinking his milk and playing with toys again in no time at all.

Fintan had his second dose today, which also went very smoothly, and he will continue to have treatment most weekdays now for about 5 weeks.

Start Date

We have finally got a start date for Fintan's treatment - Wednesday 19 November.  Although this is not as soon as we had hoped, we have been assured (and we have discussed this at length with various members of Fintan's team of specialists) that this delay will not adversely effect his condition.

We shall try to enjoy our last week of freedom before the numerous trips to London start!

Latest News

Tuesday 11th November

We had our appointment with Dr Plowman last Friday and met the Radiotherapy Department team at St Bartholomews (Barts) where Fintan will have his treatment.  Dr Plowman advised us that they intend to give Fintan Lens Sparing External Beam Radiation therapy which should reduce the risk of him developing cataracts.  It is now a case of waiting for treatment to start; they need to get the team organised, etc, which is all a little frustrating as the sooner we get started the better.  We are going to chase the hospital today and hope to have more news soon.

Quick Update

Fintan had an ultrasound of  his eyes at Moorfields Eye Hospital last Thursday - a very simple and painless procedure (although Fintan thought otherwise - his screams could be heard by the room full of patients waiting to follow him who then all looked a little apprehensive about their impending scans!)

We have an appointment with Dr Plowman - Consultant Radiation Oncologist - on Friday morning and then should start treatment on Monday - although this is to be confirmed.

Photos from Wednesday

Fintan enjoys exploring the ward...again!


Barnaby tries to explain to one of the artists what a Clone Trooper is!



Archie and Barnaby creating their masterpieces.

Barnaby's work

Archie's two part piece!

Bad News

We returned to the Royal London yesterday and Fintan had his EUA (examination under anaesthetic) with the intention of having his second application of cryotherapy, however, things have taken a turn for the worse and Fintan now has new tumour growths in both eyes. Chemotherapy and cryotherapy will no longer be effective in treating these new fast growing tumours and Mr Hungerford has informed us radiotherapy is the next step. Of course, we are absolutely devastated, but we have to do everything we can to try to save Fintan's eyes.

Details are a little hazy at the moment, but are trying to arrange an initial 'measuring up' appointment at Moorfields Eye Hospital in the next few days, then a consultation with the radiotherapy specialist and within 7-10 days we should start a month long radiotherapy course at St Bartholomews, London (Barts). This will be daily treatment (5 days on / 1 day off) and Fintan will have to have a general anaesthetic each time. The application of radiotherapy does not take long and hopefully we will not have to spend much more than half a day at the hospital and we can come home each day.

It is going to be a very tough month for everyone, but of course especially for Fintan who has been so brave throughout all this. He is such a happy, carefree boy and even when we were being given the bad news last night, he put a smile on our faces by playing 'peek-a-boo' around the door!

We will try to keep the Blog as up-to-date as possible.

Before we were given the bad news yesterday, the day had actually been quite fun. As it is half term we had taken Archie and Barnaby with us. A group of artists have been carrying out a project with the children at the hospital involving the children on the wards creating a message to send to other children on different wards, in the hope of getting an "Artistic response". Archie, Barnaby and Fintan (with a little help from Daddy), had great fun producing their masterpieces. There are some photos, I shall add them later today...

Update

Unfortunately, due to problems with the Cryotherapy machine at the Royal London, Fintan is yet to have his second application of cryotherapy.  We were due to visit the Hospital on Wednesday 15th, but the Cryotherapy machine was not working so our visit was postponed to Wednesday of this week.  We knew it would be a long day, as there was obviously a backlog of patients and 2 surgical procedures before EUAs (examinations under anaesthetic) would start, however, at about 4.00pm the Specialist Retinoblastoma Nurse apprehensively informed us the Cryotherapy machine had failed again and Fintan would not be having his treatment that day.   Fortunately, Fintan had not yet been anaesthetised!  

Although, rather frustrating for us - having made the journey - and the worry of having to delay treatment for another week, it was probably for the best anyway; Fintan has not been well this week and is on antibiotics for a nasty willy infection!  It looks like the poor boy needs a circumcision  - another uncomfortable procedure for him to endure.  

We should be back at the Royal London next Wednesday (assuming the machine is repaired), if not, Mr Hungerford runs a clinic at Moorfields Eye Hospital who also have a Cryotherapy machine and Fintan could be treated there.

Until next week!

Another Update

On Wednesday last week (24th) we were back at the Royal London Hospital with Fintan. You may well have noticed that we didn't quite make the 8 weeks between appointments we were hoping for again. As with last time, we noticed that the squinting of Fintan's eyes seemed to have worsened. Fintan also started shaking his head, as if he were trying to clear his vision. We contacted the hospital and they felt that it would be best if they saw him early just to be safe.

As it happens, Fintan did again have some further treatment, some more cryotherapy to his right eye.

The day was a bit shorter than normal as the list was much shorter than expected after someone failed to turn up for an operation! Fintan also enjoyed showing off his new walking skills to the nurses.

We will be taking Fintan back to the hospital on the 15th for the second application of cryotherapy to the area treated this time.


Archie and Barnaby show off their new matching school uniforms!


I know it's been raining a lot recently, but Fintan's Ark is perhaps a slight exaggeration!


Fintan sleeps off the anaesthetic.


If one CAN climb into it, one SHOULD climb into it!

Update

A week last Wednesday, we were back at the Royal London for Fintan's second application of cryotherapy. It was another long day, but Fintan, as always, was fantastic. The suspicious areas in his left eye are responding well to treatment and his right eye remains stable. Mr Hungerford commented that, as Fintan is getting older and bigger, he is now able to get to good photographs of the retinas and is more able to see round the peripheral of the eyes to see what is going on.

We are going to try again for an 8 week gap before the next examination - hopefully this time we will not have any cause for concern and have to return to London early!

After what had been quite a stressful Summer Holidays, we have just returned from a blissful week in Devon. We stayed on a remote farm in the middle of Devon - the boys were able to wander off on their own to explore the farm and they thoroughly enjoyed the chance to help out with the sheep and pigs and to collect eggs for breakfast! Archie now wants to be a farmer (Barnaby thinks it would be too much like hard work!) and shed a few tears when it was time to come home. We had such a lovely break that we are trying to work out when we can go back again!

Fintan and the boys at Wembworthy Down Farm, Devon

Raising Awareness

Whilst we were away it was a very good week for raising awareness of Retinoblastoma - there was an article in several of the national newspapers which resulted in an item on BBC Breakfast with a representative from CHECT (The Childhood Eye Cancer Trust). The white eye reflex and how treatable the cancer is was very much the focus of the article and hopefully this message will have reached a wide audience.

Link to BBC Article and video clip

Back to the Royal London!

So much for our break from the Royal London over the Summer holidays! Shortly after our last visit, Fintan's right eye gave us cause for concern as it appeared to be turning inwards more than usual. We spoke to the hospital last week before setting off to Lincolnshire for a few days, with the arrangement that the Royal London would contact us on our return to arrange a date to visit them. However, a change of plan brought our hospital visit forward with our return from Lincolnshire on Tuesday being followed by a trip to London yesterday!

Fintan's initial eye examination (involving measurements) indicated that his right eye was not turning in any more than last time, but the only way to be sure what was going on was to have an EUA (examination under anaesthetic). Fintan did not have his examination until 5 pm so it was a very long day.

As Fintan is getting older, he is much more aware of what is going on and has made associations with various treatment rooms. On entering the room to have his anaesthetic administered, Fintan immediately starts crying and clinging to you as he hates the mask used to give him the gas. It was particularly distressing this time, as I felt he was having this unplanned EUA because of our concerns and if there were not any problems he would have gone through the trauma for nothing.

By about 6pm we had the results of Fintan's examination - no problems with the right eye, but in fact there were 2 or 3 suspicious areas in the peripheral of his left eye which Mr Hungerford treated with cryotherapy. These are not new tumours, but probably settling debris similar to the problems in his right eye (vitreous basing). Although not quite accurate, we had been right to be concerned and are glad we contacted the hospital before his planned visit in September. Fintan has to return in 2 weeks time (due to holidays) for a second application of cryotherapy.

As always, Fintan was fantastic and actually seemed to enjoy himself exploring the play area and climbing on, over and in anything he could find! We also had a blissful hour before treatment started when all the patients were alseep - unfortunately, the nursing staff couldn't give us anything to knock out Archie and Barnaby! At such short notice we had brought the boys with us, but they were very well behaved (with a little help from our invaluable portable DVD player - the best investment we've made!!)

Problems with Fintan's eye ointment prescription delayed us a little, but we finally left the hospital just before 8 pm. Today, Fintan has recovered well and is bright and chirpy, he just looks a little battered and his left eye is now turning in nicely!!

Fintan has a good look about

"My other toy car's a fire engine"

Barnaby is apparently something from Star Wars!

Archie finally completes his Lego Imperial Star Destroyer

A Step In The Right Direction

Last Wednesday, Fintan was at The Royal London Hospital for another examination under anaesthetic and for a second application of cryotherapy to his right eye. However, after examining his eyes, Mr Hungerford decided not to apply any more cryotherapy as both eyes appeared stable. His right eye, with the troublesome vitreous basing, showed no signs of suspicious activity since his last examination and there was nothing new to report in his left eye. Not only this, they have also said that they do not want to see him for another eight weeks. Naturally we were very happy about this, but also a little scared. Having been at the hospital every 3 or 4 weeks for some months now, although tiring, it's been reassuring. It will be good to have a little break from our London visits over the summer holidays!

The Genetics Department have also delivered some more positive news. They have found the faulty Retinoblastoma gene in Fintan's blood and it cannot be found in either Fiona or myself, therefore, confirming that, although Fintan has the hereditary form of Retinoblastoma, it started in him. Barnaby had already been ruled out as a carrier from previous tests and it would be very unusual if Archie was a carrier, but we intend to have his blood tested shortly just to confirm he is clear.

We are back at the Royal London in early September, in the meantime here are some recent pictures.

Fame for Fintan!

For the last couple of weeks, Fintan's image as been broadcast on TVs across the world!

As part of a campaign to raise awareness of retinoblastoma, a slide which shows a photo of Fintan depicted on a Motorola Q mobile phone, has been showing on TVs situated at tea and break points, reception areas and boardrooms in Motorola offices worldwide. The image clearly shows him with a white eye reflection and by it the words "Red eye is not the problem, white eye could be".

The campaign came about after I decided to email the CEO of Motorola (if you weren't aware, I work for Motorola) explaining Fintan's situation and asking if there was anything we could do to reach out to the 72,000 staff at the company to bring to their attention the signs of eye cancer.

Well it seems that my unsolicited email and cheek has paid off! A big thank you to Motorola and everyone who helped make this happen.

Below is an image of slide and a photo of me stood next to a Moto TV at our office in Basingstoke.





Also, earlier this month a friend of ours, Helen Sheppard, ran the Race For Life with the words "I race for life for Fintan (11 months), Eye Cancer" on her back.

Helen raised money for Cancer Research UK through sponsorship and no doubt made a few people aware that children can get eye cancer.

We are really very grateful to Helen for doing this, and as a small sign of our gratitude, here is a couple of photos of her on the day!!!





If anyone would like to know more about raising awareness of Rb, whether it be in the UK or not, please don't hesitate to email me or Fiona, or contact CHECT through their website at http://www.chect.org.uk/. It can be a simple as sticking a poster up on your work notice board, everything helps.

If you have already been telling people about the condition, let me know and I'll put a bit about it on this blog.

!!Happy Birthday Fintan!!

Last week we all celebrated Fintan's first birthday. He had a great time and thoroughly enjoyed all the attention, presents and cake! He had lots of lovely new things and has been enjoying exploring them all. Here is a photo of him riding his new Fire Engine.

For us it was quite emotional as we reflected back on the last year. I think it was always on our minds, especially in the early days, that he may not have made this milestone. But Fintan's is a fighter and our little Superman.

On Wednesday, Fintan was back at the Royal London Hospital for another examination under anaesthetic. He required some treatment on both eyes; his left eye required a second application of cryotherapy on the new tumour that was detected three weeks ago and his right eye had 3 or 4 suspicious areas in the debris so these were also treated with cryotherapy. He will go back for a second application to his right eye in four weeks.

He coped well as usual but was more tearful and disoriented as he came round from the anaesthetic and kindly threw up his milk all over Fiona!

Fintan is determined to get what he wants!

Playing at the hospital.

More play.