Quick Update

Fintan made it to the Royal London for his EUA today. He was first on the morning list and by 9.00am we had the good news that his right eye socket is healing well and all looking good in his left eye. After a little nap to recover from his anaesthetic, some toast and pancakes and a quick play he was ready to head home - just in time for lunch!

Due to start 2nd cycle of chemotherapy at GOSH tomorrow and hopefully home on Saturday.

(Just heard - no bed available, so up to GOSH for outpatients tomorrow, then try again for bed on Friday!)

Story time with Tara

Unscheduled Hospital Visit No.1 !

Having been neutropenic (when the body's ability to fight bacterial infection is greatly reduced) for much of last week, Fintan developed a temperature on Friday and had to be admitted to Stoke Mandeville Hospital. Blood cultures were taken and Fintan put on strong antibiotics for at least 48 hours whilst we waited for the results. Fintan was brighter by Sunday morning and was even allowed home for a few hours in the afternoon, but had to return to Stoke Sunday evening (with a little less hair - it was falling out in clumps and getting everywhere so James gave him a hair cut!)

The blood culture results came back clear this morning which meant the antibiotics could stop and Fintan was allowed home, however, not before waiting several hours for medicines to come up from pharmacy (it's the same in every hospital!!)

Fintan is due at the Royal London on Wednesday for an EUA on his left eye, but we have to wait to see if his blood count improves enough. He is then due to have his 2nd cycle of chemotherapy at GOSH on Thursday, again only if his blood count has improved further!

If we also consider Barnaby's sickness bug following his birthday and the flat tyre I had on the way to Stoke Mandeville on Friday, last week was not a good one! Thanks again to Neil, Tom and Elspeth for getting the car mobile again and Esther and Tessa for looking after the boys over the weekend.

Fintan seems to quite like his new hair cut and happy to show it off to everyone!

Chemo 1 of 4

Fintan was at Great Ormond Street Hospital (GOSH) last week for his first cycle of chemotherapy. He had an outpatients appointment on Thursday (10th) for an Echo Cardiogram - although there was really nothing to it Fintan became quite hysterical. He then had to have his weight, height and blood pressure taken; I don't think any accurate measurements were obtained as, again, he was uncooperative and hysterical. A very stressful morning!

We were back at GOSH early Friday morning for his Hickman Line insertion - this had been scheduled for 9.30am, but due to an emergency he did not go down to theatre until 1.3opm. He was back on the ward by about 3.00pm and slept off the anaesthetic for a couple of hours. Chemotherapy started at 7.30pm (Fri eve) - a combination of drugs and lots of fluids - then another dose started 24 hours later, finishing at 7.30pm (Sun eve).

Fintan coped really well - most of the time he was happy to lie back in his bed and watch TV! I did encourage him to take 'Robbie Robot' (through which his chemo and fluids are administered) for a walk about the ward a couple of times a day and we even managed to visit the shop in the main reception area on Sunday morning.

We got home late Sunday night, Monday he was still suffering a little with nausea, but was ready to go back to Pre-school on Tuesday morning! Despite looking rather pale and having lost a little weight, his energy levels do not seem to have been too badly affected and, as always, he is still smiling!

Fintan is due back at GOSH on 31st March - in the meantime we have Barnaby's birthday to celebrate!

Zzzzzzz - post anaesthetic

Tara (a photo on a stick was good enough for Fintan!)

TV dinner!

Zzzz - again!

Another Course of Chemotherapy

Fintan was back at the Royal London today for a check on his enucleated eye. All the swelling and bruising has gone down, there are no signs of infection and the consultant was pleased with how the eye has healed. Fintan even allowed Tara (play specialist) to remove his temporary blue conformer and replace it with a brown one; he didn't make any fuss at all and it does look a lot better!

However, the visit was not all good news. Unfortunately, tests on the enucleated eye show that the tumour activity had been very aggressive and that the tumour had penetrated the layer of eye beyond the retina. Fintan will now need a precautionary 2nd line course of chemotherapy in case any cancer cells have spread beyond the eye. This chemo will be 4 cycles 3 weeks apart, stronger than his original chemo and he will have to stay in hospital for 2/3 days for each cycle.

Fintan has shown amazing resilience so far in all the treatments he has undergone and although he will have a tough few months, we are sure he will come bouncing back!

We have decided that he will have his treatment at Great Ormond Street Hospital, which will include visits from his favourite members of the Retinoblastoma team - Laura and Tara! Treatment should start next week.

Showing off his (nearly) matching eyes!!