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"!