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.

Soon to be One!

Last week Fintan had another eye examination by Mr Hungerford at the Royal London Hospital. As it was the half term holidays, we decided to take Archie and Barnaby with us this time. It was nice to have them there to help break up the day for us and Fintan, even if they did spend most of the time watching Star Wars!

The examination went well. Fintan's right eye (the one affected by the vituous basing described in my previous post) did not need to be treated with cryotherapy as it appeared stable, but Mr Hungerford will continue to monitor the debris in this eye. Unfortunately, a new (very small)tumour was found on his left eye; this was treated with cryotherapy and will be 'zapped' again in 3 weeks time. We are told this is not something to get too concerned over as it is the nature of the beast, as they put it. As Fintan has the genetic form of the disease, any of the cells which divide in his retina could fail to stop dividing and become a tumour, but because he is having his eyes examined so regularly, they can never become large enough to be a problem. The vituous basing in his right eye is actually more of a problem than any new tumours.

Earlier in the month, for the first time since finishing his chemo, Fintan developed a fever accompanied by a rash. After having had clear instructions to take Fintan to the hospital when he developed a fever during the chemo treatment, it was very strange to suddenly be faced with the responsibility of making a decision as to what we should do. We called the hospital and they said to bring him in for a quick look. It was just a viral infection and he was back to himself after a couple of days.

Last Friday, Fintan had his first hair cut. Yes, his bald patch has grown enough hair to make it worth while having a trim! He looks absolutely gorgeous and, even if I say so myself, has the makings of a very handsome little chap.

On the 12th June he will be celebrating his first birthday. It's been a tough year to say the least, but Fintan has such a fantastic personality and is always so happy it helps us to forget the hard times; he is a very brave little boy. I think his birthday is going to be quite an emotional day, I know that every time I think about him turning one, I feel quite overwhelmed.

Long Overdue Update

Firstly, apologies for not posting anything over the last month. With Fintan currently not undergoing any chemotherapy, we have been taking the time to do some normal family things. We were able to take the boys up to Lincolnshire for a few days to stay with Fiona's parents and we also had the excitement of Fiona's surprise birthday party (her age will not be mentioned!); all the boys were able to go which made it all that more special. For those of you reading this that were able to join us in the celebrations, thank you so much for coming, it was great to see you all and we had a really good time.

It was back to business last Wednesday as Fintan was at the Royal London Hospital to have his eyes examined. He also had a basic sight test and we had the opportunity to speak to Mr Hungerford.

The good news is that the original tumours in both eyes are not showing any signs of activity and Mr Hungerford explained more about the 'new' tumours which he has been treating with cryotherapy for the last couple of months.

As the main tumours are affected by the chemotherapy they become crumbly, like chalk. Sometimes this chalk can break off and float around in the vitreous gel (the liquid which fills the hollow part of the eye) and this debris gathers along the bottom of the eye. When in the vitreous gel, the debris does not have a blood supply so is not affected by chemotherapy as this is delivered though the blood, therefore, the debris can remain active. If the debris settles on the retina it can pick up a blood supply and develop into another active tumour.

Mr Hungerford calls this condition "Vitreous Basing" and explained that it is the most difficult part of retinoblastoma to manage because it is very difficult to see the debris as it is so far round the peripheral of the eye.

The treatment is to continue freezing the affected area of the eye every four weeks with cryotherapy and unfortunately could go on for some time. In fact, Mr Hungerford could not estimate for how long and also said that he treated a girl in Poland with Vitreous Basing for 7 years! We are hoping that this is the worst case scenario.

The sight test showed that Fintan still has good use of his left eye and that he seems to be using the periphery of the right eye for detail. The orthoptist who carried out the test also seemed pleased with how Fintan was generally using his sight and said that his behaviour indicated he was seeing more than the test showed (at Fintan's age the sight tests are not that accurate as children tend to get bored easily with the pictures and are more interested in what is going on around them).

Following this course of cryotherapy, Fintan looks like he has done several rounds with Mike Tyson, but other than objecting to the eye ointment we have to apply, he has bounced back as normal and is chasing the cat again!

...Talking of which, Fintan's crawling has come on leaps and bounds over the last month. The house is now locked down with stair gates which, together with trying to escape from Fintan, is why the cat seems to have a permanent grump on at the moment!

With that, I shall leave you with a few recent pictures and a promise to update a bit more regularly this month.

Fintan's Toothy Grin

Ner, ner, ner, ner, nerrrr!

Who's for mashed pasta and tomato?

Update

Last Wednesday, Fintan had his eyes examined at The Royal London. As usual, this was done under general anaesthetic, which Fintan coped with very well. The new small tumours which were detected on his right eye at his last check-up have responded well to the cryotherapy and this treatment was repeated again. The original tumours still remain stable and there were no new tumours observed.

Fintan has to return to the Royal London in 4 weeks for another check-up and possibly some more cryotherapy. We are also trying to arrange for Fintan to have an eye test at his next appointment; we think his vision has improved greatly since diagnosis and it would be wonderful if this could be confirmed by 'experts'.

Fintan is still full of beans and we are struggling to keep up with him. He likes to follow his brothers around the house, even though they usually ignore him, as long as Fintan is in the same room as them he is happy! He also thinks it is great fun to chase the cat, corner her by a stair gate and grab a big clump of her fur! Talking of hair, Fintan's bald patch at the back of his head is beginning to grow back slowly, but I'm sure is still looks a bit odd to strangers!

Line Out

A week last Thursday, Fintan had his central line removed at Wycombe hospital. The last infection Fintan had in his line was pretty nasty and, as he no longer needs the line to administer his chemotherapy, it was decided to remove it as soon as possible. Wycombe would not normally give babies under 1 year a general anaesthetic, but Fintan's consultant kindly arranged for a willing anaesthetist and surgeon to do the deed!

As always, Fintan was not too happy when he came round from the anaesthetic, but a bottle of milk and a couple of hours sleep later he was a different boy. He woke up with the biggest smile I have seen for a long time and seemed so much happier.

After the line was removed, Fintan had a cannula in his foot for 2 days to administer the last of his antibiotics, but was line free and at home by Good Friday and, for the first time since November 13th, Fintan was able to have a bath on Easter Monday. The video will show you how much he enjoyed that!

It appears that over the last 4 months, Fintan's central line had become quite a discomfort to him. The difference in him is amazing, although Fintan never used to grumble and was always smiling, he is now full of beans and is even more adorable! Also, within a week of coming home he started crawling and there is now no stopping him!



It was Barnaby's Birthday over the Easter weekend and he had a great day. His cousins, aunts, uncles and grandparents helped him eat his birthday cake on Easter Sunday and we went to Wycombe's new bowling alley on Monday. Barnaby demonstrated beginner's luck and won with a run of 7 spares and 1 strike! Archie claims to have won the second game, but we have a different memory of the scores. Although Fintan didn't have a go, he did enjoy a spot of bum shuffling and polished the lanes!

Anyway, next Wednesday Fintan is having some more cryotherapy on the new tumours in his right eye and will also have his eyes examined at the same time. We will update you on how the day goes.

Quick Update

Fintan has had a spot of bother with his Hickman line once again.

Last week, we got the feeling something was not quite right as Fintan's temperature was all up and down for a few days, also the area where his line comes out of his chest just didn't seem right. On Sunday morning, he developed a fever and so we took him into Wycombe hospital. Unfortunately he had to stay there until this evening when he and Fiona were allowed to come home.

The good news is that after a couple of days of umm-ing and arrr-ing, the doctors decided that it was best to take the line out now to stop the constant reoccurrence of infections in the line. So tomorrow morning he will be going back into Wycombe hospital in order for them to carry out the short operation to remove it.

Although he will require a cannula in his wrist for a few days to administer IV antibiotics, it will be a real relief to have it taken out. He will at long last be able to enjoy a long play in the bath, and of course the risk of infection will be vastly reduced. But most importantly, we will be able to give him a nice cuddle without pressing against his tubes and bits.

I'm sorry for the brief update, but it's been a tiring few days. I shall write another entry over the next few days to let you know how he gets on tomorrow.

Last Chemo

Last week was a busy one for Fintan. On Wednesday he was at the Royal London Hospital for another eye examination and on Thursday he was in Oxford having his final cycle of chemo for this round of treatment.

Wednesday brought mixed news.

Firstly there is good news in that the existing tumours appeared inactive; Mr Hungerford could not see any signs of new growth. However, there is a slight set-back -Fintan has three new small tumours in the peripheral of his right eye. We have been told that it is not entirely unexpected as the blood vessels get much smaller towards the edges of the retina, restricting the ingress of chemotherapy drugs. We had tried to prepare for such news, but this was still quite disappointing. Mr Hungerford chose to treat the new tumours whilst Fintan was under anaesthetic using cryotherapy, a technique of freezing the tumours with an extremely cold, pen-like instrument; in a similar way you might have a wart removed. They will repeat the treatment in four weeks whilst monitoring the development of the tumours.

On a more positive note, we met with the genetics counsellor and discussed the implications of Fintan's condition on the rest of the family. She explained to us that, even though Fintan has the hereditary form of retinoblastoma, it is more than likely that the faulty gene started in Fintan. This means that there is no more risk of our family member's children developing the disease than any other family. This does also mean that there is a 50% chance that Fintan will pass the faulty gene onto any children he may have. I would love to give you the full explanation as to how they came to this conclusion, but if you can remember any genetics from school you’ll appreciate it would be a very lengthy and confusing explanation!

Barnaby was tested in early January and it was confirmed he is not a carrier of Rb, so will not develop the condition (there was another very complex test which determined this -for my nerd friends reading this, it's a similar technique that's used for detecting computer viruses! -again, I don't think I should go into it now!) Archie will not be tested unless it is discovered the disease did not start in Fintan, as although he could still be a Rb carrier the condition rarely develops in children over the age of five.

I must stress that this is still all conjecture, as they are yet to find the mutant gene in Fintan's genetic code (in fairness there are over 72,000 different genes, and they have to check them all…by hand!). Although they have said that with the family history etc, they would be very, very surprised if they found the faulty gene in Fiona or me.

Anyway, Thursday...

On one hand, in a strangely semi-institutionalised way, it was kind of sad that it may have been our last visit to Oxford. It's a bit difficult to explain, and Fiona is more articulate with this, but when visiting the hospital, for a day you can hand Fintan and all the worry over to the doctors and nurses. On the other, it's a great relief to think, that for now at least, there will be only a few more weeks of taking temperatures, administering antibiotics, having nasal tubes re-fitted (three times already this time - thanks Fintan!) and hospital stays, etc., but more importantly, Fintan will not have to undergo such horrible treatment.





During this visit, Fintan was brilliant. He was as unfazed as ever, and hasn't really been that sick since. I think it may have been the support of his big brothers who came along this time, and if watching the TV, playing in the playroom and eating, eating and eating some more counts as support, they certainly gave it!

I think I have probably rattled on for long enough now, apologies for the length - believe me, this was the succinct version!

Update

It's only a week now until Fintan has his last cycle of chemotherapy. Also next week Fintan will be having his eyes examined by Mr Hungerford at the Royal London Hospital; as long as Fintan is continuing to respond well to the chemotherapy, there will be a well earned rest from all the poking, prodding and medicines for the brave little chap.

The affects of the chemo are clearly more apparent now. Fintan has had another infection and spent the most of this week in hospital. It was thankfully nothing to worry about. On Sunday Fintan developed a temperature and because he was neutropenic, the hospital needed to administer antibiotics and take blood cultures to see what infection he had. In turns out he has an ear infection and was therefore allowed home on Wednesday afternoon with a new nasal gastric tube and a couple of days of oral antibiotics to take....banana flavour this time! Also, Fintan's blood count dropped to a level whereby the doctors were considering giving Fintan a blood transfusion, however they have decided to leave it until Friday when they will do another blood count in the hope he will recover naturally.

The stays in hospital have a big affect on Archie and Barnaby. Archie is a very sensitive boy and adores Fintan. He has had a lot of tears going to school this week and has not wanted to go, I have had to literally drag him in. It's because he misses his little brother and his mummy, and also he worries desperately about Fintan. I must say, both Fiona and I find this part of the whole process particularly stressful. We know that Fintan is too young to remember any of what is happening to him, but the boys, especially Archie will remember this for a long time. I only hope it's not having too much of a toll on them.

There is some good news. We are really seeing an improvement in what Fintan seems to be seeing. He is reaching for very small items, and he even sees objects on the same colour background. For example the white tubes from his central line on a white, cotton bed sheet. He has also started shuffling about on his bum...backwards. It's not the most efficient mode of transport, but effective nevertheless. Fintan has also discovered his brothers toys, and as you can see in this short video clip, he knows what he wants and he gets it!

....also, check out the dancing in this one!

Penultimate Chemo Cycle

On Tuesday Fintan had his 5th and penultimate cycle of chemo. We were a little unsure whether or not it would be going ahead since he had the infection the previous week, but we had his blood count measured on Monday and all was okay.

Fintan was great as usual, I think he now knows what to expect and just sits there and plays whilst it all goes on. He was a little sick and agitated at times, but who can blame him.

At the hospital they have an ex-patient who volunteers on the ward which Fintan attends. He helps to entertain the children by doing magic tricks and making balloon animals, etc. I was playing cards with him and a young patient, when he revealed he was registered blind and could only see a very small area about 1/2 a metre in front of him, and only out of one eye. I found this incredible as, even with his extremely limited vision, he still navigated about, played cards, built balloon animals without it being at all noticeable that he was blind. Hopefully Fintan will be left with more vision than Simon, but nevertheless it is very reassuring to see how someone can get by so brilliantly without a sense we take so much for granted.

As usual, Fintan had a nasal gastric (NG) tube fitted so we can give him his anti-sick medicine; unfortunately he got really distressed when it was pushed in and it took several attempts before it had been successfully inserted. The poor little lad, however, you'd think he'd learn, but no, he pulled it out again on Wednesday morning and had to go through the whole ordeal once again.

Fiona had to take Fintan back into Wycombe hospital today, as the area around where his central line exits his chest had become red and weepy. It seems he has another infection and is on a 10 day course of antibiotics, again. So he'll be keeping his new NG tube for a while so we can give him his medicine, and it's 10 days of administering medicine at midnight - oh joy! (Although I won’t be moaning too loudly, as Fiona might make me stay in hospital next time!)

Finally an apology; I forgot to pack the camera on Tuesday so no cute hospital pictures this time!

Update

As some of you may have heard, Fintan has been in hospital since Sunday morning. Don't worry though, he came home today and has actually been bouncing around his hospital bed since about Sunday lunchtime.

We took Fintan into Wycombe hospital after his temperature went very high on Sunday morning. He seemed really well in the morning, after suffering with a cold for a few days, he was smiling and giggling as usual and ate all his breakfast with the usual gusto, but shortly after he became lethargic and non-responsive. At the hospital, he soon picked-up, but nevertheless it seemed Fintan had an infection somewhere so the doctors needed to keep him in. They checked his blood counts and found he was neutropenic (when his body can't fight infections itself) so they started him on three different antibiotics. Thankfully, the results of some blood cultures came in today which showed nothing had grown and this meant two of the antibiotics could be dropped and that Fintan and Fiona could come home.

Despite the recent infections, and losing a bit more hair, Fintan really is doing well. He's really interacting with us, and enjoys a good game of peek-a-boo. He's no longer a baby and is becoming more of a boy, which is great to see considering everything he's going through. Fiona's taken a couple of video clips of him recently which I will try and upload over the next few days so you can see what I mean.

Fintan is due to have his 5th cycle of chemo on Tuesday next week; we'll let you know how he gets on shortly after then.

Some Pictures

Probably the last time Barnaby asks what Daddy did at work today!



Fintan also takes in a few Zzzzzzz


Fintan sees his brothers gawping and thinks it would be rude not to join in, but it's just not quite so much fun without a TV to look at!



Just look at how well Fintan is seeing the camera in this video.
It's not all that interesting, but so heart warming and encouraging to see, it's worth the 1 min 15.