Update

Just a short update. After the little blip at the beginning of the week, things have calmed down. Fintan is keeping well (by that I mean he is avoiding hospital!); he is feeding and sleeping better and, of course, still smiling. He is having his blood counts checked every 2/3 days at the moment, as now is the time that his immunity is at risk of becoming too low to protect him from infections, etc, but it should start rising again soon - in time for his next dose of chemo in 10 days time.

The Light's Fantastic

Sometimes, when I'm holding Fintan, he looks at me and smiles. It really makes me feel good. I think, maybe he can see more than we thought...but then I realize there's a light over my shoulder!

Fintan loves lights.

Spot lights, street lights, strip lights, and especially sun light.

Here's a little video of Fintan with his favourite toy; a musical drum with, yep, lights. As you'll see, he likes it so much, he wants to eat it!

Mummy's Boy

Fintan had a pretty good weekend, his appetite is beginning to improve and he even managed to eat (slurp!) a fair amount of puréed pear yesterday! This is far better than the rest of us managed - Barnaby brought home a nasty sickness bug, which he kindly passed onto James, Archie and then myself...........I was going to say Fintan had managed to avoid the bug, but I have just spent the afternoon at Wycombe Hospital to have him checked out as he was quite sick this morning (probably bug, not chemo side effects). They checked his blood counts, but fortunately his platelet count is high enough and he will not need a transfusion - apparently this is a perfectly normal side effect of the chemo.

I find the responsibility of caring for Fintan at home very stressful, but I wouldn't have it any other way - I feel completely lost when he is not with me. I am sure we will all get used to the new routines and unplanned hospital visits, etc, it is all just a bit new and scary at the moment. We are receiving so much help and support from our family and friends and the hospitals are only a phone call away - thank you!

This little video clip of Fintan was taken before his treatment started - I think we have a budding piano virtuoso on our hands!

How I Feel About Fintan's Illness. By Archie.

Archie wanted to let you all know how he was feeling. This post is Archie's thoughts in his own words.

"I feel pretty sad about Fintan's illness actually.

"What scares me the most about the illness is him going to hospital. This scares me because he has to have his special medicine. I don't like it when mummy is very sad when she comes home from the hospital and she cries. I feel sad for Fintan and mummy when she cries. I think the medicine they are giving Fintan is horrible but I understand that he has to have it.

"The things in Fintan's eyes are horrible. I wish he didn't have them.

"Sometimes mummy and daddy get upset at times, I think this is because they are worried about Fintan.

"I like it when Nanny and Grandpa, and Grandma and Grandad look after me and Barnaby. It's fun and nice to see them. Nanny made a house with me, it was brilliant. I call the house The Triangle House.

"I'm not sure how Barnaby feels about Fintan's illness; I think he is worried about it too.

"I wish that Fintan's eyes were fine; I hope he gets better soon."

First Dose Of Chemotherapy: Part II

On Wednesday, Fintan had his first dose of chemo, it was administered via a drip into his newly fitted line over 5 hours or so. As usual, he was great, just played, slept, ate, pooed and peed all day. There is a short video of him playing under his play-mat whilst getting his drugs; you can just about see the drip in the back ground.

You may have noticed a yellow "TOXIC" label on the drip. Apparently this is no exaggeration as we have been supplied with a box of surgical gloves to wear when changing his nappy! I always thought his dirty nappies were hazardous, but didn't think they would ever burn my skin!

Fintan has reacted fairly well to the chemo. He was a little groggy yesterday, but today he was a bit sick too. We think that the anti-sickness medicine they gave him at the hospital has worn off, and he doesn't like the stuff they gave us to give him, he has to take it orally and it's making him gag; it is somewhat ironic that the anti-sickness drugs are making him vomit. Fiona is actually at the hospital now with him as I type this to get some pushed into his line so he feels like eating a bit more tomorrow.

All in all, his first lot of chemo wasn't too bad and he seems to be faring pretty well on it.

Fintan Had His Central Line Fitted

Fintan had his central line fitted today, the tubes they will be using to administer his chemo drugs and to take blood samples from, over the next months. It was another long day, and Fintan again had to go for most the day without food, and yet he didn't really make a fuss at all. Fiona has stayed with Fintan at the John Radcliffe in Oxford tonight and he will be having his first lot of chemo tomorrow.

This morning Archie and Barnaby had a nice cuddle with their brother before he left for the hospital. They are very worried about him, but are coping extraordinarily well. Barnaby knows something is up, and is asking questions about Fintan's eyes, but doesn't really understand what's happening. Archie is a sensitive boy and is very worried about Fintan, but I think he is also enjoying the attention he is getting from the family, and is also enjoying telling his Nanny how to do everything!



Before Fintan was taken down to the theatre to have his line fitted, he was put in a little gown, and it looked so sweet I had to take a picture...

I have to say, being on the ward today, there were a few other kids there who were in the middle of their treatment. Although these kids had lost their hair, and a couple needed help walking about, so had wheel chairs or crutches, they were very happy, and just got on with it all. It was reassuring to see how well they coped.

There were a couple of things I found hard today; it was hard to have to hold Fintan down while the doctors struggled to find a vein to take blood samples from, it was heart wrenching to see him fight the anaesthetic gas when he was put to sleep, and it was also hard when we were told they prefer to insert a central line, because administering the chemo drugs through a cannula in the hand is unpleasant as the drugs are so toxic, they would burn the skin...what the hell is in these drugs?

As a parent, this whole chemo thing is tough, nowhere near as tough as it will be for Fintan, but to consent to something that you know is going to make him feel really shit, especially when he seems so fit and well, is hard.

Fintan And His Brothers

Fintan, Barnaby and Archie.

First Dose Of Chemotherapy

Tomorrow Fintan is going into the John Radcliffe for his first dose of chemotherapy.

He will be having a hickman line fitted in his chest, this will be used to administer the drugs throughout his treatment and to take blood samples from. We are hoping to have a special line thing fitted (sorry, I can't remember the name). Normally the line has an exposed plastic end which can get pulled or in Fintan's case, probably sicked on! The other type is under the skin so is not exposed. The downside is that he will be pricked every time he has blood samples taken or when the drugs are administered, although they will numb the area with "magic cream" first.

After having the line fitted, if all goes well, he will have his first does of chemotherapy. Fiona will stay with Fintan over night, he will hopefully be allowed home on Wednesday.

I have to say, right now I am feeling very scared for my little boy, I get the feeling he is going to be braver than me tomorrow.

Fintan's First Visit To The Royal London

Last Wednesday, we took Fintan to the Royal London Hospital in Whitechapel. The visit was to allow the retinoblastoma specialists to examine Fintan's eyes whilst he was asleep under general anaesthetic. They were looking to confirm or discount Mr Benjamin's diagnosis of Rb and if confirmed, they would decide upon the prognosis and the course of treatment.

Fintan was an absolute angel. He was not allowed anything to eat after 8am, his procedure was not until 3pm, and yet he did not make a fuss, he did not cry the place down, he just contentedly played all day. If it had been me undergoing the examination, I know I would have been complaining!

At around 7pm, we were asked into a room where about 7 medical people were waiting; they were the team involved in making the diagnosis. Mr Hungerford, the world leader in retinoblastoma, then proceeded to tell us that Fintan does have bilateral retinoblastoma, a cancer which develops in the retina. He said that the success rate for treating Rb is excellent, in fact we are told that in 25 years, Mr Hungerford has not lost a patient. We were told that because Fintan has tumours in both eyes, they would first be treating him with chemotherapy, after 6 courses of chemo, if the cancer has not been killed they would re-evaluate the treatment. The tumours are growing in the centre of Fintan's retinas, so his prospect for detailed central vision is poor, although he should have reasonable peripheral vision. This will be useful for navigation and independent living and he may well be able to read large print, and perhaps smaller print with the help of a low vision aid and good illumination.

Fintan will be having his chemo treatment at the John Radcliffe Hospital in Oxford, this will be fortnightly. Each course is three sessions of chemo, each lasting 7 hours. Just before the 3rd course he will go back to the Royal London and have his eyes examined again. The treatment will last about 6 months in total. During his treatment, his hair will thin and he will feel crap, he will also be susceptible to colds and infections when his blood count is low. But, apparently the chemo protocol used for Rb is not as bad as some of the other cancers and children "thrive" on it.

Wednesday was a physically and emotionally exhausting day, but both Fiona and I now feel much more positive about the outcome of Fintan's treatment.

The Worst News Possible

A little over a month ago, Fiona asked me if I thought Fintan was developing a squint, I looked and I was unsure as baby's eyes often look a little squinty. However, I had noticed that his eyes sometimes jittered about rapidly. Fiona pointed out what we had noticed to Fintan's health visitor, and thankfully, she recognised the jittering as something they call nystagmus and referred Fintan to see the GP. She in turn was not happy with Fintan's eyes along with a small lump which had developed on his temple. She decided that Fintan should see a paediatrician. At this point Fiona and I were getting increasingly concerned with Fintan's eyesight so decided to make use of the private medical care I receive through work. Fintan then saw Dr. Brown at the Chiltern Hospital. Dr. Brown took a look at the lump on Fintan's temple and decided to have it X-Rayed (the results of which showed it not to be of concern), he was also not concerned with the flat shape to the back of Fintan's head which is caused by babies laying on their backs. Dr. Brown was not happy with Fintan's eyes though and decided he should see the ophthalmologist.

On Friday 2nd November, Fiona and I took Fintan to see Mr Benjamin, a consultant ophthalmologist at the Chiltern Hospital in Gt. Missenden. Both Fiona and I had thought we had prepared for the worst possible news, we had thought that perhaps Fintan was losing his sight, and that he was going blind. Mr Benjamin sat Fintan on Fiona's lap and took a look into his eyes with a special pair of goggles. It took him only a few minutes, he then looked us in the eyes and said that there was no other way to say this, but Fintan has tumours growing on his retinas.

There are no words that I can find that can describe how it feels to be told your 5 month old baby, your perfect little bundle, has cancer.