Early Days

Fintan's enucleation surgery went ahead as planned last Wednesday (24th April) and was carried out successfully with no complications.  Having signed consent around midday, we did have a little 'wobble' and requested we meet with the Rb team once more; although we had spoken to them individually we hadn't seen them all together and it helped to clarify a few questions we had.

A change to the afternoon list meant Fintan was no longer the first procedure, but he was eventually called for theatre just before 3.00pm; this was when the reality of what was about to happen hit him and  he became quite distressed.  As always, only one parent was allowed to be with Fintan when he had his  anaesthetic administered, so there was the added stress of saying goodbye to daddy, however, it was the most calm he has been whilst having the gas and was asleep within seconds.  A problem with the first theatre case meant Fintan's surgery was delayed and we did not get the call that he was out of theatre and in recovery until after 5.00pm - it was a very long afternoon.


When Fintan was returned to the ward, despite having a large bandage  over his eye and around his head, it was reassuring to see he still looked like the old Fintan.  However, because of the length of time he had been under anaesthetic, he was very groggy and slept for  a couple more hours.  When he did come round he was very nauseous and struggled to keep any fluids down.   Only one parent could stay the night on the ward, so I reluctantly left him at 9.00pm and James had to deal with a disturbed night.

I returned to the hospital the following day at midday to find Fintan sitting up in bed, having lost the large head bandage, a little brighter, but still not himself.  He continued to suffer with nausea and was very tired, but over the afternoon we managed to persuade him to eat and drink a little and encouraged him to have a walk around his room.  By early evening, with the help of his Rb girlfriends' persuasive charms, we talked him into a trip to the hospital restaurant, which he coped with incredibly well!  It was decided that Fintan should stay another night at the hospital as his fluid intake was still low and everyone would be happier if he was a little more mobile and brighter before leaving.

When I arrived at the hospital the following morning, I met Fintan in the restaurant, minus his eye dressing, munching on a doughnut and much brighter and chattier; a very reassuring sight.  As soon as he had been checked over by the doctor, he could be discharged.  We finally left the ward at about 1.30pm with Fintan riding his Gruffalo Trunki down the hospital corridors and out to the car.  We arrived home shortly after the boys got back from school and they were very pleased to see him.

Fintan has settled straight back into home life; he is navigating the house really well (a couple of bumps) and even managed a trip out to John Lewis on Saturday afternoon.  He was completely unfazed by the busy store and very noisy restaurant - he never ceases to amaze me.  He has had plenty of visitors over the weekend and enjoyed being in charge of dishing out the custard creams (his favourite)!

Although not quite ready (or rather I wasn't ready to let go) to return to school this morning, he did pop in for a visit which he really enjoyed.  He has an area in the classroom, with a desk and drawers for his braille equipment and he spent 10 minutes investigating this whilst I chatted to the teachers.  The plan is for him to return to school tomorrow (Tuesday) and see how it goes; he will be fully supported by the school and his visual impairment team and I feel very confident that Fintan will continue to thrive in this environment.

We return to the Royal London Hospital on 8th May for a check up and, assuming all is okay and the socket is healing, we can start the process of having his artificial eyes moulded and painted.

Update

We have finally had confirmation today that Fintan will have his remaining eye enucleated.  The Retinoblastoma team in London have consulted with teams in Philadelphia, Birmingham, Sweden and Fintan's original consultant (who retired from the NHS a couple of years ago) and all have come back with the same opinion that the only safe option for Fintan is to remove the eye.

Surgery is planned for Wednesday 24th April.  Of course, we are all absolutely devastated that Fintan will be losing his sight, but his well being is more important and everyone involved in his care is in agreement that if his eye was to remain in place the risk of the cancer spreading was very high and as his tumours appear to be resilient to all treatments thrown at them his life would be in danger.

Fintan was back at school today, following a meeting with his teachers (and a trip to his local hospital with another infection in his existing artificial eye); they have already been very supportive and we feel confident that Fintan will cope in this familiar setting, with his friends and teachers he knows well.  The plan is to get him back to school as soon as possible after surgery; it is going to be hard, but Fintan is a very special boy and will get through this with a big smile on his face.

Fintan had a fantastic weekend in Disneyland Paris, followed by a trip on the London Eye on Tuesday and a trip to Thomas Land at Drayton Manor, Tamworth on Friday/Saturday.

Breakfast with Donald

Fintan's special treat
- 1/2 hour playtime with Goofy

 

Breakfast with Minnie Mouse

The London Eye 

Thomas Land - Drayton Manor Hotel

Terence's Driving School!

Devastating News

We were back at the Royal London Hospital for Fintan's post melphalan EUA yesterday and unfortunately the news was not good.  Although the area that was initially being treated by the intra-arterial chemotherapy had responded, there was now extensive new tumour activity spreading around the lens of the eye.  The location of these new tumours has a limited blood supply and makes treating it with chemotherapy drugs or any other form of treatment very difficult and, having had everything going thrown at this eye and it still relapsing, has left the consultants with no option but to enucleate (remove) the eye.

They will be consulting a Retinoblastoma team in Philadelphia for a second opinion, but we are assuming this will be just to confirm enucleation is the right course of action.  The tumour activity is very aggressive and the eye needs to be removed as soon as possible and Fintan is provisionally booked in for his enucleation next Wednesday (10 April).

                                                          Big Smiles for the Eye Test

Due to Fintan having suffered with diarrhoea since last Friday, but not seeming unwell in any other way, we had contacted the hospital on Tuesday in case they wanted to allocate him a side room; however, they wanted him assessed at our local hospital and informed us that he would not be allowed to undergo his EUA.  Wycombe Hospital were happy that he was not unwell, took a stool sample and allowed him home.  My gut instinct was that we could not wait another week for Fintan's EUA and we managed to make arrangements for him to be seen as planned, just arriving at the ward a lot later than normal, being escorted straight to an isolation cubicle and Fintan being treated as highly infectious!

Despite the devastating news, I am glad we insisted on being seen this week as another 7 days would have given the tumours more time to spread.  Once the eye has been removed, it will be examined in the laboratory and if there is any sign the cancer has spread beyond a certain point in the eye precautionary systemic chemotherapy may be necessary - he had this after the removal of his right eye.

Fintan has taken the news of losing his sight with amazing maturity; he seems to understand that he will no longer be able to see and has already started talking about a guide dog, white stick and learning to read braille.  No doubt, with his strength of character, he will deal with this testing time better than the rest of us put together.

We have managed to book a last minute treat to Disneyland Paris for Fintan and the boys - just hope the weather improves!