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.

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!